Sean Martella's Testicular Cancer Update Blog

Obituary

2010-06-20T15:51:00.000-07:00

I am posting this here on his blog in the hopes that it will remain online a little longer than the 30 days that the paper allows. Just in case anyone missed it in the Tribune.

SEAN MARTELLA

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Sean Martella 1985 ~ 2010 Our beloved Sean, loving husband, father, son, and brother, passed away in the arms of his devoted wife on May 31, 2010.Born in Cedar City, UT on March 3, 1985, Sean fought a heroic battle against testicular cancer for two and a half years along with complications from leukemia. He was well and kindly cared for at Utah Cancer Specialists, the Simon Cancer Center in Indianapolis, IN and by the staff of the Neuro ICU unit at IMC. Sean was loved for his inspiring spirit, gentle and loving heart, and determination to succeed in life. He loved all sports, reading, music, and family time. He is survived by his wife Karen, their unborn twins, his parents Jeff and Kathy Martella, his sisters Natalie and Stephanie, many members of his extended family, and countless friends. Funeral services will be held on Saturday, June 5, 2010 at Southside Church of Christ, 3138 West 7000 South, West Jordan, UT, 84084 with a viewing beginning at 9:30 a.m. and a memorial service at 11:00 a.m. In lieu of flowers, donations to defray funeral costs may be made to a fund in Sean's name at Zions Bank. We love you so much Sean, and look forward to being with you soon. Directors Independent Funeral Service

Published in Salt Lake Tribune on June 3, 2010

Sean's Obituary

2010-06-03T08:51:00.000-07:00

Sean's obituary is running today in the Salt Lake Tribune, our local newspaper. It is also available online at this link:

http://www.legacy.com/obituaries/saltlaketribune/obituary.aspx?n=sean-martella&pid=143286215

The online obituary will be available for 1 month.

Funeral Arrangements

2010-06-01T00:18:00.000-07:00

A funeral will be held for Sean this Saturday, June 5, 2010 at:

Southside Church of Christ
3138 West 7000 South
West Jordan, UT 84084

A viewing will be held beginning at 9:30 am with a memorial service beginning at 11:00 am. In lieu of flowers, donations may be made to a fund set up in Sean's name (Sean Martella) at Zion's Bank.

For those of you who follow this blog, please pass this information onto others who may miss it here. His obituary will run in the Salt Lake Tribune by this Thursday and will be available to be viewed online as well. I will post a link to that once it is available.

I love you, Sean

2010-05-31T10:40:00.000-07:00

Friends,

This morning at 12:51 am, my beloved Sean passed away from complications due to testicular cancer and leukemia. At the hospital, he received a brain CT scan that showed numerous and wide-spread lesions throughout his brain (mets from his testicular cancer) that had bled (an issue that can be caused by low platelet counts-a symptom of leukemia) into his brain causing swelling. This came as a sudden and great shock to me and the rest of our families as we were only beginning to prepare ourselves to deal with the news he had just received on Friday. We truly thought we had more time.

Because of the bleeding that was going on in his brain, Sean's consciousness and coherency declined rapidly between late Saturday night and early Sunday morning. He wasn't making much sense when he would give me answers to the questions I would ask, but one thing amazes me. I was able to tell Sean that I love him once during the chaos of Sunday morning, and he looked at me with his bright blue eyes and I knew that he fully understood what that meant, and he was able to tell me that he loves me too. I'm so grateful that this was the last thing he was able to say to me.

The morning was extremely traumatic and he declined extremely fast. He was given a room in the Neuro ICU unit at IMC and had to be intubated in order to keep him breathing. He went from showing slight to sluggish responsiveness, to being completely unresponsive. The doctors told me that the swelling and bleeding in his brain was too devastating and he would not recover. They said that while he was not able to communicate to us, he could still hear us and they encouraged us to speak to him, even while he was in his coma.

We were very blessed to be visited in the hospital by Sean's family, and many many friends. After everyone had left late into the night, each of us in his family took at turn alone with him telling him our goodbyes, and early Monday morning, we took Sean off life support. He was so ready to go back home to our Lord in Heaven, and he died quickly, peacefully and pain-free after such a painful yet heroic battle with testicular cancer, surrounded by his family, and in my arms.

Our family takes peace in knowing that Sean is at peace now and is no longer in any pain. We are extremely saddened at the way this ended and wish we had just one more day with him. We know that he is in Heaven with our Lord and Savior Jesus Christ and is waiting to meet us all there someday.

There is an enormous hole in my soul that can only be filled by Sean. He is the love of my life, my best friend, my darling husband, and the father of my children. I will always love him--more and more each day. He is my soul-mate and perfect match, and I will love him in this life until the day I die and see him again in Heaven. His children will know what an amazing man their father was, and even though he never got to meet them in this life, we know that the power of God is endless and that all of his dreams are being fulfilled.

Please, when you remember Sean, remember his amazing strength of character, his loving and giving heart, and his adorably charismatic smile. Remember his sense of humor, and the love that flowed from him. Don't remember the pain that he went through for so long because that is no longer a part of who he is. Our families and I will miss him immensely, and will try each day to live for him. Please check back here by tomorrow for details on his funeral services. Thanks to everyone who followed him here on this blog. Everyone meant so much to him and he loved all of you.

I love you so much Honey, and I can't wait until we can be together again.

I love you

I love you

I love you

Karen

Kind of a Tragic Day For Us......

2010-05-28T22:07:00.000-07:00

Well, I don't fully know what to say to you all right now. Thanks for how supportive and loving you have all been. My time may be coming to an end, but I want everybody to know how much your kindness has meant to me.

I do actually have Leukemia. No lab errors this time. My doctors said that I've got 2 to 3 months to live. Believe me, I'm gonna fight like hell for a couple extra months so that I can hold my babies. That's all I'm asking for. Sometimes it feels like it's too much that I'm asking for. Nevertheless, it remains my goal.

They are discontinuing all treatments. They say that my body cannot handle anymore and that the leukemia will likely be what kills me. I guess it completely destroys your immune system and infections eventually get you. I've got a painful few months ahead of me, but I'll face them with as much courage as I can muster.

Dr. Chandramouli e-mailed Dr. Einhorn (for those who don't know, the world's leading TC doctor) to see if he has any advice to offer and he agrees with my local doctors. This is what he said, "I am currently in AZ and I do not have his E-mail address. This is very tragic. He has fought a long and courageous battle, but in my opinion, with the acute leukemia, there would be more harm than benefit in any further type of therapy. I am truly sorry."

My doctor said that there is around a 1 to 2% chance that a patient who has received Etoposide will develop leukemia around 10 years after treatments. He can't even begin to calculate the odds of me getting it while still on treatments. Neither can any doctor who has heard of this situation. Never in my whole career, they say. That's always been me, creating new boundaries I guess. :(

Sorry to be the bearer of bad news. I wish it wasn't always bad news that I had. I hope I can feel good enough to do some of the things that I've always wanted to do with my last months. Holding my babies being the #1 priority. I know I can outlast the time frame that these doctors have given me. Wish me luck, pray, send good vibes, or whatever it is that you do that I'll be able to hold and kiss my little children. I could rest in peace if I have that moment.

Karen and I will most likely get a second opinion on this. We want to see if maybe there is someone out there that thinks they can do something to slow down these cancers. Again, thank you everybody.
Love,
Sean

ER and Latest News

2010-05-26T17:32:00.000-07:00

So in Sean's last post he mentioned that he was going to the ER for a bloody nose that wouldn't stop bleeding. We got to the ER at about 2 pm on Sunday and they drew some blood to run some tests to check his platelets. As we suspected, they were low and they decided that his red blood cell count was pretty low too so they decided to give him infusions of both. The ER doctor packed Sean's nose with something that can really only be best described as a nose-tampon. It was a thin tube of cotton that expands when it absorbs the blood and the idea is for it to put pressure on the vessels in the nose to stop the bleeding. The catch, of course, was that they wanted to admit Sean to give him the transfusion and keep him overnight because the process of ordering the blood, typing it, and making sure it had been checked for antibodies and all of that can take a long time and they didn't want him to keep taking up space in the ER. So he was admitted.

When we got up to the room, the on-call doctor, Dr. Samuelson who is one of Dr. Chandramouli's partners came in to see him. He told us that the pathologist who had looked at his cell counts had also noticed some abnormalities among the blood cells that looked very suspiciously like leukemia. He told us about a specific test they can run on the blood to determine whether or not the leukemia exists but that it would take a couple of days to get the results because they have to send the sample to another facility with the University of Utah to have it processed. He told us about the possibility of this occurring because of some of the chemotherapy drugs that Sean has had in the past, and didn't want us to worry yet because the suspicion of leukemia hadn't been confirmed in any way. So, after a good long scare, we got a phone call from Dr. Samuelson later that evening who told Sean that the test was an error and that the nurse from the ER had drawn his blood from his port which had been flushed with heparin the day before. Heparin is a blood-thinning agent so that explained why the pathologist saw cells that looked like they had clotting issues.

So we put that out of our minds and got on with the hospital stay. On Sunday evening, they gave Sean 2 units of platelets which took about an hour and a half to infuse, and 2 units of red blood cells which took 3 hours each to infuse. The infusions went on into the middle of the night and were finally over at about 3:30 am.

Early Monday morning at about 5:30 am Sean woke up suddenly and immediately paged his nurse to come in because he was having tightness in his chest and difficulty breathing. This turned into a huge ordeal for him. The chest pains/tightness and shortness of breath lasted for about 2 hours before they were able to get things under control. He said it was like someone was sitting on his chest and squeezing it making it hard to breathe, and that it came in waves. The waves lasted about 10-15 seconds each time and he went maybe 20-45 seconds in between each episode. The nurse and aid were great about staying in the room with him to make sure he didn't code, and Dr. Samuelson was paged immediately. Sean had a chest x-ray and an EKG done during all of this as well. The chest x-ray was to check to see if there was any fluid in his lungs, and the EKG monitors the heart. Both tests came back normal. Sean was being given IV morphine to help with the pain during all of this and once he had enough in his system the episodes eased up and became much less severe and much less frequent. They hooked him up to oxygen and monitored his vitals very consistently.

We were very stumped and confused as to why this had happened, as were his doctors. The oncology doctors ordered a cardiology consult, and the cardiologist looked at the results from his x-ray and EKG and ordered a cardiac sonogram which was also normal, and therefore ruled out that there was any connection between the chest pains/tightness and his heart. Sean also had another test to check to see if he had a blood clot in his lungs (pulmonary embolism), which he didn't. The only thing left that the doctors could think of was that it was a GI issue and so they started him on IV protonix and carafate which coats the lining of his esophagus and stomach to help prevent damage from acid reflux. With these medications, and his pain medications, he was able to make it through the rest of Monday and Tuesday. Wednesday Sean had a consult from the GI doctor on call which was Dr. Batista who works for the group that I am employed with -Mountain West Gastroenterology. It was nice having him be able to come by the room and go over the symptoms Sean was having with us. His recommendation was to increase his PPI medications (acid reflux meds) to twice a day and to take the carafate 4 times a day. He told Sean that if he was still experiencing problems, to let him know as an EGD, which is a scope that goes down your throat, might be necessary. He didn't see any reason for him to stay in the hospital for this since his medications seemed to have everything under control but said that he'd be happy to do the scope as an outpatient procedure if that's what Sean needed. So, happily, on Wednesday, the packing in his nose was removed and he was discharged and we went home.

So the good news with all of this is that the platelet infusion seemed to work well enough to get Sean's nose bleed under control, his chest pain/tightness was resolved with pain medications and acid reflux medications, and he is home and resting now until his next oxaliplatin treatment which is scheduled for this coming Friday with Dr. Chandramouli. Of course, they will check his blood counts to make sure he can receive treatment on Friday before they give him any chemo, but he also gets to meet with Dr. Chandramouli Friday morning before treatment begins.

The bad news is this: when we got home from the hospital, Sean got a call from Anne, who is a nurse practitioner who was working on the oncology floor at the hospital and is with Utah Cancer Specialists. She told Sean that the blood work that they drew today has them concerned again about the possibility of leukemia being present in his blood. She told him that his white blood cell counts are rising out of control to extremely high levels. She didn't say anything about the clotting factors of his blood. She told Sean to follow up with Dr. Chandramouli on Friday about the results, but wasn't extremely specific. The best we can tell is that they are going to send Sean's blood work to the University of Utah to be processed and that Dr. Chandramouli will be able to speak about the results at his appointment later this week. So, we're back to square one....wherever/whatever that is. It's not unheard of for patients in Sean's situation to develop leukemia from the treatments he's had, but this usually doesn't happen until years and years and years down the road so it's a bit startling that this could be happening to him so soon. We weren't ready for this, but we'll deal with it like we've dealt with everything else. If the tests confirm that he has leukemia, he will have to begin treatments for that cancer as well as continue to fight off his testicular cancer. We're not going to assume things yet, we're just going to wait to hear back on the blood test. Hopefully Dr. Chandramouli will have information to give Sean on Friday.

We'll update the blog again after his appointments on Friday and we'll let everyone know if we've heard anything and what we found out.

Karen

The Unstoppable Bloody Nose

2010-05-23T11:10:00.000-07:00

Well, I'm heading to the ER in a few minutes. I'm finally giving in to it. I've had a bloody nose for several days now that just won't quit. Every time I lay down to sleep or something it gets out of control. My platelets are dangerously low and that's probably the cause. They told me that they are at 10, while the average person is anywhere between 150 and 300. So, pretty bad....

My doctor ordered me a platelet infusion and I got 1 pack yesterday, but I guess it wasn't enough. The on-call doctor at UCS says I should go to the ER and get some more because they are probably still too low. I hate the ER, but you've gotta do what you've gotta do I guess.

Quick Bit of Good News

2010-05-17T15:24:00.000-07:00

On April 23rd, my AFP was 9410 and seemingly doubling itself every couple weeks. Well, Karen just was able to talk to a nurse and because of the radiation that was done on me my AFP is now 3338. That's a pretty nice beatdown that radiation put on the cancer. Hopefully Oxalliplatin will have a similar effect.

First day of Oxaliplatin

2010-05-15T00:55:00.000-07:00

The first day was a little rocky for a couple reasons. My blood counts are already pretty bad. I guess the radiation took it to them. They contemplated not treating me, but did it in the end. I've got an appointment tomorrow to get Neulasta and boost my counts a bit. The other hangup was my pulse. For some reason, it was really high all morning. I might have been dehydrated, or tired, or something. It was stuck around 115-130 bpm. Not good, so hopefully that gets better.

I get the drug once every two weeks, and the total regimen typically last 3 months. I guess it can be done for longer if it works though. The biggest side effect is already being felt by me. My fingers get really tingly if they are out in the cold at all. Even reaching in the fridge. Hopefully this neuropathy only affects me when it's cold. It's definitely convenient that we're heading into Summer. Eating anything cold isn't going to work either. Water has to be room temperature. I took a spoonful of ice cream at dinner just to see what it feels like, and owww. It feels like my mouth is burning. Very strange. I also read that this chemo doesn't often cause total hair loss. I guess over time it starts to thin it a bit, but not totally like previous chemotherapy regimens. That's definitely a positive, for me. I like having hair.

I hope we see some positive results from this chemo. Thanks for following the blog everybody. It really helps me keep everyone updated.
Sean

Starting....

2010-05-12T10:49:00.000-07:00

Okay, another quick note. I'm starting chemo on Friday at 8AM. I'm glad that it's underway. Time to put another smackdown on some mutated cells. Doctor Chandramouli says that this regimen has around a 20% response rate. Meaning, 20% of people who do this chemo have their cancer shrink, stop growing, or go away for a period of time. So, that's the percentile I'm looking to join. I'll let you know how it goes.
Sean

New Chemo

2010-05-11T02:00:00.000-07:00

Hey, just a quick note. I don't have details yet, but I'm going to be starting a new chemotherapy regimen soon. Within the week it will happen. The main drug is going to be oxalliplatin, and I'm not sure if it will be combined with anything else or not.

I decided that I just didn't feel comfortable leaving my body exposed to the cancer for the few weeks that it will take TGen to get everything done on their end. Then, on top of that, there is the uncertainty that insurance will be able to pay for what TGen recommends. I'm still having the profiling done, and I'll get it all ready to go if Oxalliplatin doesn't work.

I'm hoping that Oxalliplatin will shrink my tumors and bring my markers back down. This cancer moves so fast. You can't give it too much time to do it's thing. Anyways, that's where we're at. I'll let you know the specifics when I have them. Thanks
Sean

CT-Guided Liver Biopsy

2010-04-30T10:15:00.000-07:00

Today I'm having a CT-guided liver biopsy done at IMC here in Utah. We're doing this to get a fresh sample of my tumor. A company called TGen in Phoenix is going to profile my tumor on a molecular level. With that profile, they will be able to determine a new and possibly more effective list of drugs that will react strongly with my specific tumors. It's a very exciting and interesting field of cancer research. I could end up getting a chemo drug that is used to treat breast, or prostrate, or whatever kind of cancer. Having a look at the genetics changes everything, so I'm pretty excited about it. Dr Feldman and many others have recommended this for me and I'm optimistic. The biggest problems will probably end up being financial ones, and getting my insurance company to pay for a chemo regimen that isn't commonly used. I really hope that it works out though.

Anyways, the biopsy has no real risks associated or anything. I just wanted to let everybody know what is going on. I'm still doing radiation and that still seems to be working. My pain continues to lessen. Those treatments are done on Tuesday. I'll let everybody know what the results are from TGen when we get them. From what I've heard, it takes a little while to get the results back. Hopefully not too long.
love,
Sean

Overdue Update

2010-04-25T23:28:00.000-07:00

I've been home from New York for a little bit now. What was looking to be a dire situation has temporarily subsided, giving me some time to weigh my options and come up with a plan going forward.

To recap: the latest trip to NY was not exactly a success. The pain in my hip turned out to be from a new tumor on my right hip that was about 2 centimeters big. We found this out at the time I met with Dr Feldman and figured that my time on the ARQ trials is over. It's time to move on before the cancer can spread further. This was obviously disappointing, but still something you have to realistically prepare for when going into a clinical trial of any kind. Because of the new risks associated with my level of physical activity (possibility of fracturing my hip) and awaiting results of a more comprehensive CT scan, I was told to take it easy, take a cab, and get to the airport with as little exertion as possible.

The CT scan ended up being too late, and by the time I could get a cab back to get my stuff and make it to JFK during rush hour, it was too late. I was about 30 minutes early for my flight, but still too late to check in for it. So, bummed out, and just wanting to be home with Karen, I looked for a place to hunker down at the airport for the night. Delta booked me for the same flight the next day. I did not have the energy to make it back into Manhatten and every hotel next to the airport was at max occupancy so I didn't really have a choice.

The airport staff told me that terminal 4 was the place to go. They were right. I went over there and it was full of people, most of whom having missed international flights because of the volcano stuff, were hanging out for the night as well. I grabbed a bite to eat and found one of the cots that they had set up for people to sleep in and managed to sleep for a couple hours.

Early in the morning, I got a call from a friend at a testicular cancer forum that I post at sometimes. She was worried about me being at JFK alone and so she paid for my cab ride to Newark Airport, where she could take me back to her house and make sure I was okay. A couple other awesome people from those forums came to see me as well. It was yet another amazing act of kindness that has been shown on my behalf. I'm extremely blessed to know such people. I do not know how I would have made it through that day without them.

On my cab ride over I got a call from Dr. Feldman's nurse, who had the results of my CT scan. She told me that a tumor had wrapped its way around my lower spine and was dangerously close to finishing the job and paralyzing me. I was extremely distressed about this new news, obviously. The nurse also figured that I was back in Salt Lake already, and was concerned that I wasn't because my ability to fly home safely was now in serious question. I was told not to lift anything at all and to use a wheelchair as much as possible.

After much deliberation and consultation with different doctors, Dr. Feldman's office determined that I should be okay to get on my flight that night. Karen and I were really glad about that. She was prepared to come out and be with me in the ER in New York but we knew it would be much easier to just come home. My friend that I mentioned earlier was kind enough to swing by a pharmacy to pick up some anti-inflammatory drugs that Dr. Feldman thought might help me on the flight. She then drove me ALL the way back to JFK during rush hour. I'm sure it was not a fun experience for her.

We made it on time and we made sure that the airport staff carted me to my gate and carried my bag. I got on my flight and made it home alright. Upon landing and getting carted to the front of the airport with Karen, we drove to the emergency room. I was admitted pretty quickly and medicated. We spent the night with a lot of family and talking, not much sleeping. In the morning I was taken for a spinal MRI and the tumors were located so that they could be radiated.

We are radiating three different spots. The dangerous one on my spine, the painful one on my right hip, and a smaller spot higher up on my spine. I'm further into the treatment now and we're pretty sure that it's working because my pain has lessened significantly. I was let out of the hospital early Monday and continue to go in for radiation as an outpatient. I'm still trying to take it easy and not lift anything because I don't know the exact condition of my spinal tumor.

Simultaneously, I'm working on what to do next. Once the radiation is finished and I am stable, I am going to need to start a chemotherapy regimen. This is definitely not what I wanted. I had hoped so much to be in a state of at least partial health during Karen's pregnancy but that doesn't seem likely anymore. With my AFP pushing over 6000, we need to act quickly before the cancer grows too large. There are three or four different things I'm deciding over with Dr Feldman and Dr Chandramouli right now. The biggest issue is to figure out which chemotherapy we will get the most out of while maintaining my blood counts. My bone marrow has been so suppressed that it can't handle the most aggressive regimens anymore. So, finding a balance will be the key here.

Thank you so much everybody, for the kindness. In whatever form you've shown it to Karen and I. There have been so many of you reaching out in friendship and love during this time of need. I owe a lot to my friends in New York for getting me home safely. Thank you guys. I hope I can repay the favor someday.

I apologize for the lateness of this update and will try to be more timely in the future. When a chemotherapy regimen has been chosen, or something new comes up, I'll be back.
Sean

Dire Threats

2010-04-16T08:36:00.000-07:00

I can't go into much detail right now. I'm too stressed and frightened. Imaging shows a tumor on my spine that has almost completely wrapped around it. I'm extremely close to being paralyzed from the waist down. They may or may not let me fly home tonight. They are hesitant to let me do so. I'm not lifting anything at all. If I do go home I have to go to the emergency room immediately for a spinal MRI and to begin radiating that area of my spine before it's too late. Whether I'm in the ER here or there I will probably be there for a while. I'll update more later.

Things are very precarious. I'm very scared. Please pray, think positive thoughts, meditate, or whatever it is you believe in doing for Karen and I. We desperately need them. Thanks.

In NY

2010-04-14T22:32:00.000-07:00

Tonight I got in to NY and made my way over to Sloan Kettering. I spent a few hours there getting an MRI and an X-ray so that we can figure out the source of this pain. I really hope it works, because it's really killing me at times. Tomorrow morning I get the other tests done so we can find out if the ARQ is working. I really hope it's good news.

Two Weeks In...

2010-04-11T16:48:00.000-07:00

Well, I'm almost two weeks into the study now and am getting ready to head back to NY on Wednesday. I'll only be staying for one night. While I'm there, I'll get a CT scan, blood work, and maybe some other tests done to see how well the trial is working. An extremely generous person in the West Village of Manhatten is going to let me stay at their apartment for the night, so I won't be at a crazy hostel again.

So far I have only had one side effect, but I don't know if it's related to the ARQ or not. The day after I got home from NY last time I started getting this pain in my hip joint, butt, and upper thigh area. Over the last little bit it has gradually gotten worse and worse to the point that it can be excruciatingly painful and keep me up at night. The pain seems to radiate from my femur and all the way down my shin now. It's a lot worse on the right side than it is on the left. Neither myself or Dr. Feldman's office really understand why I'm having this pain but I plan on getting an X-ray on Thursday as well. The only diagnosable thing that I can compare it to is sciatica, but I don't know if that's what it is. No patients have previously reported it as a side effect of ARQ. I had a CT of my pelvis area done on my last time in New York. There weren't any tumors or anything else that could seemingly cause this pain either. It's a little baffling but hopefully it sorts itself out.

Start of the Trial

2010-04-01T06:49:00.000-07:00

I'm in the chemo room at Sloan Kettering. They've got me down here to monitor my first day of taking the ARQ pills. I've got a good 5 hours of sitting around to do. Anyways, the scans showed that there are four or so small tumors in my right lung and one in my left. There is one that is above 1cm and it's the reason I am eligible for the study this time.

Strangely, that old tumor in my liver that was still shrinking two weeks ago is growing again. Then the one that's in my abdomen that was new and growing has stopped. That was the one that we had originally thought would make me eligible for the trial. This is a hard disease to understand. Once you think you know what it's doing, it does something else.

My AFP is up to 2000. It's amazing how that number just grows exponentially and feeds off of itself. I hope this treatment works. If not, this number is going to be ridiculous even by the time I come back here in two weeks.

Dr. Feldman has the results from his first 3 patients on the trial. Two patients showed progression after starting the trial and one now has stable disease. So, there is reason to be cautiously optimistic. I know that my body responds to treatment better than the people that are normally in my position. The Dr mentioned that one of the "failed" guys had never had a response from chemotherapy either.

I'll be back in Utah tonight. I've missed Karen while being here, so it will be good to be home with her and the little ones. Apparently they are now the size of raspberries. Why do pregnancy books always compare your unborn children to berries and other little snacks?

New York

2010-03-30T18:44:00.000-07:00

I'm here. Things have been okay so far. I've had several very strange experiences and some good ones too. I saw Dr. Feldman and he was still very helpful. I like him a lot as a doctor. He's a lot more optimistic and helpful in thinking of ways that I can keep trying to treat this thing. Most doctors would just be loading me up with pain pills and sending me on my way to die. Dr. Feldman is on the cutting edge of anything new in the relatively small world of relapsed germ cell tumors.

I had an x-ray, CT, and blood test run on Monday morning. At my appointment with Dr. Feldman immediately after, he was able to pull up the results of the x-ray. He said he can see a lesion that is at least 1 cm so I'm "unofficially" eligible for the study. I re-signed all the consent forms and set up my appointment for Thursday at 8AM. Once the CT and blood results are looked at I'll start taking the ARQ pills. I have to stay at the office for almost the whole day as they monitor me and how the pills affect me.

After that I've got to hustle back to the subway and make my way up to JFK for my flight.

The place I'm staying is a little hostel in Manhatten. I've never had any experiences with hostels before so I had no idea what to expect. All I knew is that they are the only affordable places to stay the night in Manhatten. It's not so bad. I wouldn't bring Karen here, but it's good enough for me. My room is about the size of a kitchen and has 8 bunk beds in it. The beds are little more than cots on box springs and I think they might have been made for hobbits. Everything is just really tiny. It kind of feels like Europe. That's magnified by the fact that just about everybody here is college age and European. I think they're all just vacationing on spring break. A lot of Swedes, Germans, Russians, British, and even people from South America. Anyways, it has been interesting.

Perhaps I'll post more of the strange things I've been doing later but you're probably all bored by now.

Thanks for the continued love and support,
Sean

Back to NY

2010-03-12T12:04:00.000-08:00

Alright, I'm scheduled to be back in NY on March 29th for repeat scans and a meeting with Dr. Feldman that morning. Then I have the follow up appointment a couple days later on April 1st where I will hopefully get all set up with my ARQ pills and fly home. Now we just have to figure out the flight/hotel situation again.

Back in Utah. Big Update, Lots of News

2010-03-10T02:15:00.000-08:00

Hey everyone, Karen and I are back home in Utah. We had a good time in New York. We did a lot of the sightseeing that we wanted to do. We were able to meet up with one of Karen's friends and her husband and do some other fun things as well. I really learned my way around Manhatten with using the subway, buses, shuttles, air trains, and taxis. The hotel was great and we're really grateful to Darlene for being so kind to us.

Well, despite the fun, we weren't in NY to go sightseeing. I got my testing done at Sloan Kettering and the results came back on Thursday. Dr Feldman was at a convention so we got the results from one of his co-workers. Dr. Feldman was still behind the scenes e-mailing instructions at 2AM the night before when he saw the results. My AFP is up to 500 or so and there are a couple tumors that show up on CT. There is one in my abdominal lymph nodes that looks to be 1.1 by 1.3 centimeters. There is one in my lungs that is .7 millimeters. In order to qualify for the study, an abdominal lymph node has to be 1.5 centimeters or a tumor in another organ has to be 1 centimeter. So, I'm off eligibility by .2 millimeters or so.

Frustrating, and disappointing. In the grand scheme of things, it's not a big deal, but I had hoped to get started. The unbending nature of the eligibility criteria seems a little ridiculous. Because of my insistence on doing this study and not any others, I'm back in Salt Lake for a few weeks to let the cancer do a little growing. I'll head back to New York in a few weeks (by myself this time) and repeat the tests. I have no doubts that the tumors will be more than big enough by that point and I'll get started.

Now, the next piece of news. Several months ago, Karen and I were given an unexpected opportunity to toy with the idea of doing In Vitro Fertilization and becoming parents. We decided to meet with the doctors at the reproductive clinic in Sandy, UT and do preliminary testing. After an educational class, lots of testing, hormone shots, and prenatal vitamins, they began the embryo transfer process. A bunch of healthy eggs were taken out of Karen and fertilized with some of my guys that had been frozen since before my first chemotherapy. This resulted in 12 embryos of varying quality. 12 is a good number and it seemed to surprise the nurses.

Next, they cultured the embryos for 5 days. At that point they are called blastocysts. Dr. Blauer showed us the two that were of very high quality. We chose to have them implanted in Karen and that operation was successful. I've got a picture of the little guys that I'll attach to this post. Before we left, Karen took a pregnancy test way before she was supposed to and it said pregnant. She got a quick blood test and the numbers looked good. They told us to be cautiously optimistic. Towards the end of our stay in New York, Karen definitely "felt" pregnant. She took another test before we came home and it still said pregnant. She got a blood test today and the numbers they look for are through the roof.

So, she's pregnant! :)

It's still very strange for me to say the words, "I'm going to be a dad". I'm very happy though. I cannot put into words how much it means to me that this is happening. Nothing could mean more to me at this point. Even seeing the picture of the embryos was enough to make me smile for hours. At a time in my life where very little has gone "right", something like this is enough to make life feel full and wonderful. All the more reason to keep fighting this relentless cancer, right?

I'm not going to use this blog as a week by week update of the pregnancy. We'll save that for another blog or facebook. There's no reason to associate cancer and this wonderful thing too much anyways. I'll leave you knowing that Karen is very much pregnant. I found myself leaving Wal-Mart today with Saltine crackers, a big jar of pickles, and a bunch of ice cream sandwiches.

Peace out,
Sean

PS: We have a VERY high chance of having twins.

Update from New York

2010-03-03T19:27:00.000-08:00

Sean had his consultation on Monday with Dr. Feldman and everything went pretty much as expected. They just went over his records and past medical history, and Dr. Feldman explained the study to us. Basically what is being tested is a drug that inhibits the enzymes that promote abnormal cell growth. If this works, and Sean responds, he may be on the medication for the rest of his life. The regimine is 3 pills in the morning and 3 at night, which is a small price to pay for being healthy. Today we went into the cancer center for Sean to have some tests done. So far he's had bloodwork, an x-ray, ultrasound, and CT scan. What they are looking for is A) a measureable tumor somewhere in his body that is 1 cm or greater and B) baseline numbers for data. We have an appointment tomorrow morning scheduled with one of Dr. Feldman's colleagues and I expect that we'll find out what the results of everything show and whether or not he is eligible for the study. If he is eligible, they should be able to start him on the study before we leave for home. He'd need to come back every 2 weeks for the first 2 months, but the only once a month after that for a year. The study lasts a year, but like I said, if Sean has a good response to the treatment, he could be on it for the rest of his life.

This is all in a nutshell, but details right now are too exhausting to put down. We'll keep trying to post as much as we can. It's been a long road and we do the best we can. Thanks to everyone for your continued prayers and support. We'll see you all when we get home!

Karen

Getting Ready to Go-NYC

2010-02-24T20:16:00.001-08:00

Sean and I will be leaving for New York this Saturday Feb 27. We unfortunately were not able to get on with Corporate Angels as there were no available flights from Salt Lake to New York. The closest they could do was from Tuson to Boston so we had to pass on that but we'll keep them in mind for Sean's future flights. My mom, however, has to travel about 3 weeks out of the month for work and has accrued enough frequent flyer miles to get our tickets for this trip and then for a couple more for Sean's next few. We found a great hotel to stay at in the city as well located near JFK airport. Sean's dad, Jeff was kind enough to make some calls for us as he works with Hilton and was able to find the owner of this hotel and after hearing about our situation offered us an amazing rate for our stay. We're very appreciative of our families right now for the amazing ways they help us. Right now Sean's appointment for his first consultation is set for March 1 and Dr. Feldman's office is working on getting his tests scheduled for the week that we'll be there so that he can go ahead and start on the trial before we have to come home. We've had a few weeks of being on a "break", I guess you could call it, and we've recharged enough at least to handle this next step. Please continue to pray for us, however, as we have several things in our life going on right now and we will definitely benefit from everyone's continued support. We're keeping our chin's up and hoping for the best. There's just really no other alternative is there? Our next post should come next week after we meet with Dr. Feldman. We'll have more detail then on exactly what the study will entail and the details that go along with that. Thanks to everyone (again, especially to our families) for the love and support.

Karen

P.S. I heart NYC!!!

Update on Heading to NY

2010-02-09T20:51:00.000-08:00

So Sean has an appointment on March 1 with Dr. Feldman and we'll be in New York City for the first week in March. That will give us enough time to meet with the doctor, have Sean undergo some preliminary testing, and begin on the study treatment. After this trip, Sean will have to go back to NY 2 weeks later, and again in another 2 weeks after that. I spoke with a representative from the Corporate Angels network and they are officially looking for a flight for the two of us. They can't guarantee a flight for us so we still have to make back-up commercial flight arrangements so keep it in your prayers that this program works for us. It's been my challenge this week to have Sean's medical records sent out to NY and to get the time I need off work. My job has been amazing through this entire ordeal though. I have a boss who is very supportive of all of the employees and so she's been very understanding about my need to be with Sean on this trip. I'm glad that I have a place to work at that doesn't hold situations outside of my control against me. That's all we really have to report right now. We should hear for sure whether or not we have a flight with Corporate Angels by the 18th or 19th so I'll probably post again around then to let everyone know what the update is. And we'll definitely update again after we meet with Dr. Feldman and during our week in New York. Thanks to everyone for all the support. We really appreciate it.

Karen

The Plan

2010-02-05T14:55:00.000-08:00

Well this week didn't go very well, to put it mildly, in terms of getting the information that we needed to make a decision about what to do. So here we are at Friday and finally have something to report. Sean's repeat bloodwork came back and showed that his AFP is still elevated and is now at 81 (it's rising). His most recent CT scans (chest, abdomen, pelvis, and brain) did not show any new spots anywhere in his body. So without the scans, by his bloodwork we know that he is no longer responding to the Gemzar/Taxol treatment and so we cancelled his appointment for treatment that was supposed to be for today, which would have been the start of his 5th of 6 cylces. We're obviously disappointed that the treatment is no longer working but haven't given up hope yet.

Sean, in his many hours of insomnia, has done quite a bit of research on the available clinical trials for testicular cancer patients. The study that we have found that looks most promising is being conducted by Dr. Darren Feldman of Sloan-Kettering Memorial Hospital in New York City, New York. I was able to speak to Dr. Feldman personally on the phone today (with Sean listening up against the receiver) and received a LOT of information about the study. This study just moved from stage 1 to stage 2 this past week so we're coming in right at the beginning of the treatment stages.

Dr. Feldman explained to me that during the first stage, the drug that is being tested was administered to many different patients with all different types of cancers, not just Sean's type. Of the patients who participated, only one had the germ cell tumor cancer that Sean has (testicular cancer) and that patient was shown to be in remission for 14 months from the treatment that he received. Dr. Feldman and his research team have now extended the study into Stage 2, in which they are now only accepting patients with Sean's type of cancer who have exhausted all other testicular cancer treatment options. We went over the basic eligibility requirements for the study and Dr. Feldman said that from everything I was able to tell him about Sean's case, he is a good candidate for participation in the study.

Sean's participation in the study would not require us to relocate to New York (darn!) but travel will be required. The plan right now is for both of us to go out for the initial consultation and testing together. Dr. Feldman said he could work things around so that as long as the testing shows Sean to be eligible for participation, he could start him on the study during our visit there, so as to save us a trip out. He also told us about a program a patient of his had been on called "The Corporate Angels". This program goes like this: There are several large fortune 500 companies who charter private jets from main cities all over the country to fly to other main cities each week. There are always spare seats on these flights and these companies have donated these seats to cancer patients who need to travel to other cities to receive treatment. It was too late for us to speak to someone about that program today but we should have answers from them on Monday as to whether or not he qualifies to be part of the program, or if it even extends to Salt Lake City. This would allow Sean (and an adult companion.....i.e. me) to travel for free from Salt Lake City to New York for treatment and back. Dr. Feldman said that each cylce of treatment in the study is 4 weeks long and for the first 2 cycles, Sean would need to be in New York once every 2 weeks for testing, but after that he would only need to go out once a month. This would go on for as long as the treatment worked for Sean and as long as Dr. Feldman wanted his regimine to last.

Sean has decided that going with a study will be the best option for him right now. This study in particular would be excellent in that there are very limited side effects, if any. He would regrow his hair, be slightly less fatigued, be rid of the pain that comes from the Gemzar/Taxol treatment he has been going through, and basically be able to feel a lot more like himself than he has for a while. Dr. Einhorn in Indiana is also conducting this same study but is not currently accepting patients for participation, which is why we are looking into going to see Dr. Feldman in New York, instead of Dr. Einhorn. There is also an additional secondary study that Dr. Feldman is doing on testicular cancer patients right now as well but it is not our first choice and we may consider it for Sean as a back-up plan.

I had a very good first impression from Dr. Feldman. He took at least 30 minutes out of his day to call me and explain to me what the study was for and about and go over Sean's case and answer whatever questions we had. (I had called his office to leave a message regarding our interest in the study probably 10 minutes before he called.)

We're not completely sure when we would go out to New York to start the trail, but guess that we could go during the last week of February into the first week in March. We'll look at our calendar pretty closely this weekend and decide on when we'd go so that on Monday we could make an appointment for Sean's consultation.

We are still hoping to hear from Dr. Chandramouli later tonight and inform him of the decision we've made and get his input but for now we haven't heard anything from him. If anything changes, we'll definitely let everyone know.

We have a lot going on in our life right now, which is apparent, but in many different areas too and we still need everyone's prayers. Please keep us in your thoughts and prayers over the next couple of weeks while we make arrangements to go to New York. We will continute to keep everyone updated via this blog and will try and post as much as we have the energy to do so. Thanks to everyone for all the love and support that we get. We love you all

Karen

Sean the Paradox, the Enigma, the Conundrum Wrapped in a Mystery.

2010-01-30T00:38:00.000-08:00

Dr. Chandramouli spoke to Dr. Einhorn on the phone and explained my elevated AFP and clean CT scan. I guess Dr. Einhorn's only response was "Hmmm....". It has come to the point that I am stumping the father of testicular cancer medicine. It's a little bit humorous if you can put the frightening part of it aside.

Anyways, I had the head CT and the jury is still out on that. It remains unlikely that it will show anything, but there is that remote possibility. Once I get that all clear we're hoping that Dr. Einhorn will have some course of action other than just waiting until it gets big enough to see on a CT.

Up in the Air

2010-01-28T10:54:00.000-08:00

Hey, my latest blood test shows that the cancer is growing somewhere. I'm still supposed to be doing treatment so it's disheartening to have the cancer be growing anyways. I had a CT scan and the results were a little bizarre. It shows nothing. All that can be seen is the mass we already knew about in my liver. It's probably dead and it's still shrinking.

The AFP is at 61, so something about this is unlike the rest of my cancer experience. Even the slightest increase in AFP usually shows up on CT. So we're kind of in cancer limbo at this point and waiting until the tumor grows big enough to be seen. In the meantime, I will probably continue treatment and have a head CT to make sure it isn't there. It's highly unlikely that it's in my head, simply because I have not had any symptoms. Sorry to have to share the bad news.
Love, Sean

(PS:please pray for my Uncle, who is also facing a serious medical situation)

Another week...

2010-01-17T12:03:00.000-08:00

Nothing to report this week. I got the full dose of Gemcitabine and Taxol. Next week will be my last of this cycle and I'll probably end up getting another reduced dose.

2010

2010-01-10T12:52:00.000-08:00

Well, I don't have a whole lot to report. Things are going much the same with the chemotherapy. It seems like the most my body can take is full dose on the first treatment, full dose on the second treatment, and 75% of both drugs on the third treatment. Then I get my week break and repeat the process. It's working well, and all of my markers are still normal. Karen and I are hoping for miracles this year. We still believe that things can go our way and that we can end this nightmare for good. I hope all of you who read this blog know how much I appreciate the love and support I have received from you. I look forward to the day when this can all be over and I can find a way to pay you all back in whatever way I can.

Love, Sean

PS: I love you Karen

Cali-for-ni-a

2009-12-29T20:28:00.000-08:00

Well, it's been a little while since I have updated. I had that CT scan and it showed that all of the cancer is gone except for one small spot still in my liver. That should be gone soon. My AFP is within the normal range at 13 so that is good. I'm trying to decide on some things to try once my treatment is done that will help my body keep the cancer away. On the 3rd treatment of this last cycle I had to get a reduced dose of both drugs because of my low red blood cell count. They gave me a blood transfusion and 75% of the taxol/gemzar. That's better than getting no Taxol at all.

Anyways, Karen and I are in California on vacation with Karen's family right now. We are staying at her grandparent's house and it has been a lot of fun. We went to La Jolla Cove on the first night and watched the sunset. We were able to sit on the rock where we wrote our vows a year and a half ago. Then we ate at a sushi place that was really good and got some gelato for desert. Then the next day we went to Los Angeles and spent the day with Karen's grandma on the other side of the family in Chinatown. We ate at a Chinese restaurant called CBS that was frighteningly authentic. I liked it, but the food is probably too extreme for a lot of people. There are a lot of things like chicken feet and eyeballs being served around you.

Today we went to Coronado Beach and rented bicycles. We rode those down the bike trail and then hung out at the beach for a little while. We got to watch the sunset again. It was really pretty. We're really enjoying the warm weather and good times. Tomorrow we go to Disneyland and we're going to use me as a reason to get one of those handicap passes that let you go to the front of lines. That will be awesome. :)

I hope everyone is having a happy holiday season.
Love, Sean

New Cycle

2009-12-11T01:46:00.000-08:00

I was able to do treatment today. My white blood cell count and platelets were fine. I guess my red blood cells were a little low so I'm hoping that they don't completely fall and prevent from doing week 2 and 3 of this cycle. It was a pretty uneventful day of treatment though. I'm getting Neupogen again for the next 5 days. Neupogen boosts your white blood cell production.

It's finals weeks and I'm finishing up my classes. Karen is just working and doing photography on the side. It's freezing cold here in Utah right now. It's been a pretty consistent single digit temperature for the past few days. It is no fun. We're going to San Diego with the Jew family after Christmas so I'm really excited for that. It doesn't get much colder than 60 degrees there. Maybe we will just stay there. :)

Sean

hey hey hey, goodbye

2009-12-04T21:25:00.000-08:00

Just a quick blog update here. My AFP is down to 15, so I'm back within the normal range. That means the cancer is gone again. I've got a CT scan next week to confirm it. We are thrilled that this treatment is working for me. Thank you for the continued support everyone. Happy Holidays

Sean

Delayed Treatment

2009-11-30T15:55:00.000-08:00

Today I went in for the last dose of my second cycle and the doctors refused to treat me. My white count was good enough but my platelets were not. I tried to fight it but they wouldn't have it. This is extremely frustrating and discouraging to me. I've always been told and have read on my own that delaying treatment with testicular cancer is a serious thing because of how fast moving this cancer is compared to other kinds. I think they are treating me like they treat people with those other kinds of cancer and that's unfortunate. Especially because this is likely to happen again on the rest of my cycles. I've e-mailed Dr Einhorn because I know what he has told me about delaying treatments. He doesn't do it in almost every circumstance. We'll see what he has to say. If he's not on my side, I guess I'll just be out of luck.

I know several people who get platelet transfusions, blood transfusions, or white blood cell infusions whenever they need them. I don't understand why I can't get them as well. Oh well, I didn't get to talk to Dr Chandramouli about it so maybe I will do that tomorrow. I'm not ready to give up yet, so I can't let the doctors give up on me either.

On a brighter note, Thanksgiving was great. Karen and I got to have two big dinners and spend lots of time with our families. I had relatively no nausea or lack of appetite so I got to stuff myself good. The Utes and Raiders lost, which was disappointing. Well, that's the word for now.
Sean

EDIT: Dr. Einhorn had this to say:
"We try not to reduce or delay therapy when patients are getting BEP as their initial chemo. However, it is often necessary to alter doses and timing AFTER a patient has gone thru transplant as they have slower recoveries from chemo.I am delighted that your AFP is responding favorably."

I guess I've just got to deal with it and hope that things work out anyways. I'm going to push harder for platelet and red/white blood cell transfusions to help though.

Good News

2009-11-14T01:59:00.000-08:00

I started my second cycle today. My blood cell counts still are not where the doctor would like them to be but we're pushing through it anyways. My AFP reading during the first cycle was 88 and after getting it checked today it is 28. So, clearly the treatment is working. I feel pretty lucky about that because only 20% or something like that actually respond to this treatment. I'm one of the lucky ones. Once again it looks like it will just be a matter of keeping the cancer gone.

My hair had been falling out and I finally got around to buzzing it. It's more of a military cut now and my beard is still there for a little while at least. I have a few classes but no job anymore so I'm trying to find stuff to fill my time. I've been having a lot of fun with my new video game, Modern Warfare 2. So is everybody though. Every man aged 12 to 45 is playing as we speak. Karen is just thrilled about it, :-)

Karen has been spending her time doing a lot of photography with her new camera. She is really good and getting even better as she learns stuff about Photoshop. If you need or want a photo shoot just get a hold of her and set something up. She is trying to build up a portfolio.

Overall, things are going well. We just need to figure out a way to keep my blood counts up. My blood marrow has taken so much of a beating over the last couple years that it's getting hard. Thanks for all the support.

This Week

2009-11-03T21:57:00.000-08:00

Well, I'm off treatment this week. It's a much needed break because my blood counts have gotten extremely low. Even with getting Neupogen shots to boost the white count, it's still almost zero. I still don't have a readout on how the cancer is responding to the treatment. Hopefully next week or the week after I will know.

I've been really weak and fatigued lately. It is hard to move around and I wear out really quickly. I also had a pretty high fever today and they were worried about that. I think a combination of Loritab and antibiotics has broken my fever for the night at least. I got the regular flu shot and I'll need to get the H1N1 shot in a few weeks.

I hope things get a little better. My blood counts are taking too much of a beating from this chemotherapy. Anyways, thanks for the continued support.
Love, Sean

Taxol/Gemzar Cycle 1 Treatment 3

2009-11-03T16:30:00.000-08:00

Sean had his 3rd treatment of his first cycle last Friday, October 30. I wasn't able to be there with him but he said it basically went the same as the others. He didn't meet with Dr. Chandramouli that day or with Rick though. His white blood cell counts were up due to the neupogen shots he had had during the week and he was able to go out with Kathy (his mom) after his treatment and get lunch and visit. His platelet counts were low which causes him a good deal of fatigue but they weren't low enough for him to receive a blood transfusion.

Friday night he felt pretty sick and needed to take several doses of his medications to help him feel better enough to sleep. He was up for a bit during the night and I was able to get up with him and make sure he got his medications. He did really well on Saturday though. He was able to be out shopping with me and we went to the Utes game that night as well. Sunday he was back to not feeling too well and had to take his meds throughout the day then too. Yesterday was like Sunday--he was able to get things done but wasn't feeling the best. Today he's been very tired due to his platelets being low still and Dr. Chandramouli asked him to come in today for a CBC panel. His white blood cell counts are back down which means his immune system is compromised again and he has had a low grade fever of around 99.1-99.4. Dr. Chandramouli asked him to start taking his levaquin antibiotic today to help fight off his fever and any infection he may have, but he thinks Sean's fatigue is caused mainly by the chemo and being somewhat low on his red blood cell counts. The doctor told me to watch for any changes in Sean's breathing (especially with all of the flu viruses going around these days--although he did get his seasonal flu shot this week) and if anything gets worse we'll need to take him to the ER. Right now he's sleeping and stable so hopefully he'll be able to get some rest this evening. He is scheduled to see Dr. Miller on Thursday who is the pain/fatigue management specialist within Dr. Chandramouli's group so maybe he can help figure out how to get Sean through the next 5 cycles. Sean's off of chemo this week--it's his break week, but he will meet with Rick on Friday for a follow up office visit to see how he's doing.

I'm very grateful for the doctors and other medical providers that are working with Sean as well as for everyone's continued prayers and encouragement. It feels like we're dealing with a lot here and we are but we get through it one day at a time. I'll try and post again once I have enough to update everyone on but for now things seem to be under control. We'll see how this evening going and go from there I guess! Thanks again for all of the love and prayers. We really need it...

Karen

P.S. Sean's hair started to fall out on Sunday but he hasn't shaved his head yet. It's going to be extra hard to part with the curls he's had. :(

Taxol/Gemzar Cycle 1 Treatment 2

2009-10-23T14:22:00.000-07:00

Today is Sean's 2nd treatment of the taxol/gemzar. He's currently passed out asleep from all the benadryl he had as a pre-med....

Last week Sean did pretty well after his 1st treatment. He experienced some aches associated with the taxol but was able to take some of his pain medication to deal with that. He has a slightly unpleasant taste in his mouth, no hair loss yet, and minimal fatigue. His appetite has been normal this past week and he's been able to keep up pretty well with school and other activities. His spirits are still high and he's pushing through.

We met with Dr. Chandramouli in the office today before Sean started his treatment. He said that he took a look at the PET scan Sean had and was able to see the "hot spots", those being the active tumors within Sean's body. He said that he plans to repeat a scan (whether it's CT or PET I'm not sure) after Sean's 2nd cycle, so toward the end of November. This, along with weekly AFP checks, will help determine how Sean is responding to this treatment. The goal is to complete 6 cycles which, if everything goes smoothly and nothing has to be delayed, would put him finishing around April, 2010.

The concern right now is Sean's white bloodcell counts, which are low. He's not neutropenic like he was when he was on the high-dose chemo but he is more susceptible to infection than a normal healthy person his age. He just needs to be careful about exposure to sick people and will be getting both the seasonal and H1N1 flu vaccinations. He cannot have the nasal spray H1N1 vaccination, however, because that is the active-virus form which cannot be introduced into the body of someone with a compromised immune system--obviously. Having a low white blood cell count can affect whether or not he is able to undergo the chemotherapy treatments and Dr. Chandramouli said he'd like to push him through today's treatment. The plan is to have Sean come in for either neupogen or nulasta shots (I can't remember which drug he's getting) Monday-Thursday of next week. These shots will help boost his white bloodcell counts and help keep his body up and running against infections. We asked what would happen if his white cell counts got too low for him to do treatments and Dr. Chandramouli said he'd have to delay the treatments until he is strong enough to resume but hopefully with the shots we won't have to delay anything.

**Again--Sean is allowed to be out and about in public and do normal day to day activities. I have had the seasonal flu vaccination already this season to ensure I don't get sick and pass it along to him.

Sean will have his 3rd treatment for cycle 1 next Friday, October 30 and will not be meeting with a provider that day. He will be meeting with Rick again though, during his off week, for a follow up visit to see how he's doing. He had blood drawn today and they are going to check on his AFP levels which should be in on Tuesday of next week. We'll know after about 2 cycles whether or not he's responding to treatment. He was able to reach Dr. Einhorn via email who told Sean that he's still hopeful of a cure with this treatment he's going through so that's good news for us.

So far we're both doing okay. We aren't really in need of anything except prayers right now. If there is a need for anything though, we'll let everyone know. We really appreicate all the support we've had from all of our friends, family, and strangers over the last 2 years and we're grateful that the support continues.

Karen

Taxol/Gemzar Chemo Cycle 1 Treatment 1

2009-10-14T13:06:00.001-07:00

Sean had his port placed this morning at IMC. Everything went smoothly with that. For those of you who don't know what a port is, it's a device placed beneath his skin in his chest that allows IV access through it so that he doesn't have to endure needlepricks for IV's in his arms and hands. This is beneficial because chemotherapy can cause damage to veins making it extremely hard to start an IV....and Sean's had trouble with that in the past so the port will definitely be a good thing throughout his treatment.

We met with Rick Hansen, Dr. Chandramouli's PA this morning. He gave Sean some prescriptions for anti nausea and pain medications to help him deal with the side effects of the chemo that are sure to come. He told us that Sean will be doing the taxol/gemzar treatments 1 day a week for 3 weeks, with a 1 week break after, which equals 1 cycle. He will do 4 cycles (16 weeks) of treatment, so long as he is responsive to the drugs. They will run labs each time he comes in for chemotherapy to determine if his cancer is responding. Rick said that Sean will most likely lose his hair again, experiencing the same sorts of nausea/vomiting that he had in the past, have a bad taste in his mouth again (which really sucks because the holidays are coming up and Sean really likes the food), and the overall sick feelings that come along with doing treatments like this. Rick said that the gemzar lowers patients blood counts quite significantly, so while he won't be neutropenic like he was when he had his transplants, he will still need to stay away from anyone who has a contagious illness and will need to be aware of overall hygiene. Rick gave us a prescription for an antibiotic to take in case Sean develops a fever that goes above 100.4 degrees. (Note: Sean will still be out and about in public, and has been told by Rick to get both the seasonal and H1N1 flu vaccinations). The plan is to move Sean's treatments to Friday's after this week as he has a full day of classes normally on Wednesdays, meaning that Sean's next chemotherapy treatment will be on October 23. We expect to meet with Dr. Chandramouli at that time as well for another follow up visit as he was out of the office this week.

Sean's chemo treatments will last between 4-5 hours each time they are done because the taxol chemo requires a lot of premedications in order to allow the body to tolerate the poison. I'm not sure what my plan is right now on whether or not I'll be with him during treatments so for now we'll plan on seeing how he copes with the side effects and whether or not he'll be able to drive himself to and from the cancer center.

For now Sean is doing well in the sense that he's staying positive, doesn't feel sick, and is ready to go through all of this again. As his treatments go on, things will get harder and harder but we know that we'll make it through this just like everything else we've been through. We know that this is his last real shot at a full cure so we're doubling up on hope. For now, please keep praying for us. We'll keep everyone updated with Sean's progress and condition. Thanks

Karen

A Study On My Chemo Regimen

2009-10-13T01:13:00.000-07:00

http://annonc.oxfordjournals.org/cgi/content/abstract/15/3/493

Check that address out for an interesting read. The regimen I am on is only slightly different and it's considered a little bit more effective. I think I am a prime candidate for this kind of chemotherapy regimen. I've read that people who can achieve remissions from platinum based chemotherapies have greater results when taking Gemzar/Taxol. My body is extremely responsive to platinum based chemo so I could very well be one of the people that responds to this treatment.

I remain hopeful.

EDIT: I updated the slideshow with some different photos.

Scan Results and Plan

2009-10-12T13:08:00.000-07:00

Sean went in for his PET/CT scans this morning at Intermountain Medical Center. We asked them to rush the results back to his oncologists office and we were given the results around 12:45 this afternoon. Rick Hansen, Dr. Chandramouli's physician assistant is the one who called us as Dr. Chandramouli is out of the office this week.

We had hoped that Sean's cancer was localized so that he could potentially undergo surgery to remove the tumor, but unfortunately this was not the case. Sean's cancer is widespread and there are tumors in many areas within his body. Rick mentioned specifically that they found tumors growing in his lungs, liver, and abdomen (all are areas where he has had tumors in the past, but that's not necessarily why/how they are there again), with the largest tumor being 1.9 cm. That's an enormous growth for a 4 week span and it's a relatively large tumor as well. I believe they said that that tumor was in his liver. Anyway, he has little spots all over and upon recommendation from Dr. Einhorn in Indiana, surgery is not really an option for Sean at this point. He and Dr. Chandramouli's team want him to start on the Taxol/Gemzar chemotherapy asap.

We are scheduled to meet with Rick on Wednesday (October 14) at 11:00 am. At this appointment we will sit down with him in the office and go over what this chemotherapy will entail. He stated on the phone this afternoon that Sean will do treatments of 1 day per week for 3 weeks with 1 week off following for a break. This will be considered one cycle and he'll do multiple cycles. I'm not sure how many right now but when we meet with Rick tomorrow I'll update again and let everyone know. After we sit down and discuss everything with Rick and have all of our questions answered regarding his treatments, Sean will begin his first round of chemotherapy. They are going to give him the chemotherapy at the office just like they did with his BEP cycle way back in 01/2008.

I know that there have been specific medications that have worked for Sean in the past in relation to managing his symptoms so I will be sure to stock up on prescriptions for those medications when we meet with Rick. I am going to request that he be placed on home healthcare again as the last time he did it was very beneficial to him. This way we will be able to give him medications and hydration at home and hopefully limit his visits to the ER. Sean will also be having another port placed which is good because then he won't have to he poked to death with IV lines every week. I'll be able to administer his home health medications and fluids through the port.

Right now this is all we know. We have many questions to ask the doctors on Wednesday and we'll be able to post more after that visit. Please keep us in your prayers as we try to make it through another treatment. We're on our last straw but we know that the power of prayer is strong and for everyone who has been asking us what they can do for us, this is it. Thanks to those who have already been praying for us. We really appreciate everyone's love and support.

Karen

Update

2009-10-09T23:10:00.000-07:00

I'll keep this brief because I don't have a lot of answers right now. My AFP level is rising again. It's at 89 and that is significant enough to easily rule out any kind of lab error. The cancer is back, but I do not know where or what the plan is yet. If it's localized somewhere, Dr. Chandramouli said that Dr. Einhorn mentioned the possibility of doing another surgery. If it's not or if surgery looks too risky I will likely go on a Taxol/Gemzar regimen of chemotherapy.

Taxol - http://en.wikipedia.org/wiki/Paclitaxel
Gemzar - http://en.wikipedia.org/wiki/Gemcitabine

When combined, Taxol and Gemzar have a greater cumulative effect and produce better results. Having said that, they still don't offer a very high chance of a cure for a person like myself so I think we are hoping for another surgery at this point. I have a PET scan scheduled for Monday morning at 7:00AM and should get the results of where the cancer is by late that day or Tuesday. We will be sure to update the blog with that information.

I know you might be reading this and thinking to yourself, "this again?". I apologize for the roller coaster this whole thing has been. I'm still trying to digest this information and prepare myself for another fight. I had really hoped that I finally beat it with that last surgery but I guess we are still going to be tested. My resolve hasn't weakened, but my body is growing tired. The mind is willing. Thank you so much for all of your prayers, kindness, and positive thoughts. I appreciate them more than I could ever tell you.

Love,
Sean

PS: I love my wife.

New Month, New Blood Test

2009-10-03T23:45:00.000-07:00

Wish me luck. Wednesday is the day but it's doubtful that I'll know the results until next Monday.

Sean

Results

2009-09-10T13:11:00.000-07:00

Sean was given the results of his bloodwork today and his AFP levels are still normal! Yay! His level is at 12 which is within the normal range (0-15). He'll have another bloodtest for the same thing along with an office visit with Dr. Chandramouli in October. Thanks for all of your prayers! 1 month down, 11 more to go!

Monthly Labs

2009-09-06T11:27:00.000-07:00

Sean will be going in for his monthly lab work to have his AFP levels checked on Tuesday Sept. 8. This is just the routine bloodwork that Dr. Chandramouli and Dr. Einhorn want him to do for the next year. Please keep Sean in your prayers as we really need these labs to be normal. We won't expect to hear the results back until Friday probably but as soon as we know what they are we'll update again. Thanks everyone

Thanks

2009-08-14T11:40:00.000-07:00

Hey, this is Sean. I just wanted to check in and say thanks to everyone for all the support throughout this latest course of treatment. I wouldn't be able to do this without the people in my life, especially Karen.

I've had a few people with testicular cancer stumble across my blog as of late that are scared, confused, or looking for someone to identify with. I just wanted to put it out there that if you fall in that boat you are more than welcome to contact me. I'm on Facebook, my e-mail is seans_mailbox@hotmail.com, and we can even talk on the phone if you like.

Thanks again everybody.
Love,
Sean

PS: If any of you are interested in my ramblings I have another blog for all things not cancer that I just started. Link is on the left.

Good News!

2009-08-12T19:29:00.000-07:00

Sean got his bloodwork results back today and his AFP level is down to 9! That's entirely within the "normal" range which means that he's in remission for a 3rd time. 3rd time's a charm, right? This means that he won't be doing chemo, at least not for now. We're still not out of the woods yet, but it's a great start! He'll continue to have his AFP levels checked once a month for the next year. He'll see Dr. Chandramouli next in October and until then we will continue to pray that he stays in remission. He'll be even further out of the woods at the 6 month mark which will be in February 2010 and even more so next summer, so long as everything stays normal and all scans stay clear between now and then. We're very hopeful that this is the end of this nightmare. Sean is still nervous about starting the fall semester though, for fear of his cancer returning and him needing to drop all of his classes and throw away a semester's worth of money all over again (He's finished 1 full semester since he was diagnosed). Keep us in your prayers and thoughts as we start to hope for a chance to get started on a somewhat normal life together. Our first anniversary is coming up on the 20th of this month but it seems like we've been married for 50 years already. For now though, no news is good news and we'll try NOT to update until his next bloodwork is due at the beginning of September. Check back then for, hopefully, a continuation of his remission.

Latest Chandramouli Appointment

2009-08-09T22:54:00.000-07:00

Sean went in for an appointment with Dr. Chandramouli on Friday and everything went as expected as far as the news that we got. He said that he had read the reports and notes and everything from Sean's visit in Indiana and also from his stay at Intermountain Medical Center. He said that Dr. Einhorn had emailed him about what he'd like Sean to have done from this point on so the official plan is for Sean to go in once a month to have his blood drawn and his levels checked (with reports on those levels about a week later) and then have office visits with Dr. Chandramouli once every 2 months. Dr. Einhorn and Dr. Chandramouli also want him to have CT scans and chest x-rays every 4 months. All of this will continue for the next year, with August being the first month. Sean had labs drawn at his visit on Friday and Dr. Chandramouli said he'd be out of the office this coming week but that Sean can call into the office around Wednesday and talk to his physician assistant, Rick, to get the results. We already know that if the results are normal, then he will go in for his blood-draw appointment (no visit with the doc, only pokes from the nurses) in September, followed by another blood-draw and office visit with Dr. Chandramouli in October. If, God forbid, his levels are not back to normal by now or if they ever rise again, he will have to do a salvage chemotherapy treatment. We're praying with all of our heart and soul that it won't come to that because, other than drug studies and experimental treatments, there's nothing more they can offer him in terms of a cure. With every treatment that he faces (and in his particular situation, has undergone), his chances of a cure decrease significantly. Sean and I have been through hell and everything else together and you all have been there supporting us through the entire thing and we're so appreciative of the love that we've been shown by our friends and family through these last 20 months. Please continue to keep us in your prayers as we await Sean's test results. We'll update as soon as we hear what his levels are.

Karen

Update from Home

2009-08-05T16:49:00.001-07:00

I just wanted to let everyone know that Sean is doing really well. He's up and moving around more, and is feeling better overall. He's still fatigued if he pushes himself too hard but that's to be expected after such a big ordeal. He has an appointment with Dr. Chandramouli on Friday so we'll update again after that and let everyone know what the plan is. Thanks!

Karen

Good News!

2009-07-30T20:59:00.000-07:00

Sean was doing much better today than yesterday. He hasn't actually been on pain medication for several days and he was able to keep food down (the hospital gave him terriyaki chicken!) and his nausea under control. They decided he was well enough to go home so they discharged him today around 6:00 pm. Before we left the hospital though, the nurse showed me how to give him his lovenox shots. Sean didn't think he could give them to himself (something about stabbing himself with a needle.....whatever...) so I learned how to do it for him. I have to give him 2 shots a day in his stomach. I've never suck a needle in anyone before and it was a very strange feeling to give him the shot! I'll get used to it though, just like everything else, and who knows--maybe it will desensitize me enough to the point where I'll believe I actually could puruse a nursing degree. Anyway, they also removed the stables in Sean's incision and it looks like it's still healing properly. We'll definitely keep a close watch on it though to make sure there's no infection. He does have a minor bladder infection and was sent home on some antibiotics to take care of that. So the only two medications he was sent home on were the antibiotic and the blood-thinner which is a welcome change to his usual pain/nausea medication. He's still going to take it easy for a while--no work or heavly lifting for a few more weeks, but he'll be able to drive again soon and he's even thinking he'll be up for an outing to see Harry Potter tomorrow. Tonight, though, we both get to sleep in our own bed for the first time in 3 weeks! Sean has a follow-up appointment with Dr. Chandramouli in a week and we'll go over thinks to do with his surgery and cancer updates at that appointment so we'll be sure to post again after that.

Thanks to the visitors who came to spend some time with Sean in the hospital. We had a lot of wonderful support from both of our families, our friends, and our church family. The staff at the hospital was great and we felt like he was in good hands the whole time. As good as it was though, we're hoping to never go back!!

Karen

IMC Update 3

2009-07-29T16:42:00.000-07:00

So this morning started off pretty traumatic. Sean woke up with severe nausea and vomiting around 12:30 am and then again at 4:30 am. After the 4:30 am incident, the nurse decided to call the doctor because of the vomiting. The doctor came in and talked to us and decided that Sean needed to have his NG tube put back in. This decision alone was enough to ruin the rest of Sean's day. To make matters worse, though, the first attempt at the placement of the new tube failed. It ended up looping over itself in the back of his throat and coming out of his mouth. He, of course, was gagging and vomiting and it made his nose and stomach bleed a little bit. The nurse decided to get another nurse to try to give us peace of mind I suppose, and the second attempt wasn't much better. The nurse was able to get the tube into his stomach but the suction wasn't bringing up any bile and so they knew it wasn't placed in the correct position. As she was repositioning the tube, it again, wound up looped in the back of his throat. He and I had both had enough of that (and of course the nurses felt terrible that he had to go through all of that, even though it wasn't their fault for the misplacements) and told the doctors about what was going on. They decided that they'd wait a few more hours and see how Sean was holding up with his nausea and vomiting and that if they were going to need to place the tube, they'd take him to the radiology department and sedate him in order to get the tube back in.

Sean improved over the course of the day though and hasn't ended up needing the tube placed yet. He has been able to control things for the rest of the day with medication and has even been able to get out of bed and walk around and shower. He's been able to keep some clear liquids down as well and so hopefully the set-backs we had this morning won't have too much of an impact on when he is discharged. We're hoping to be out of the hospital by the weekend, if everything goes smoothly from here on out.

Karen

IMC Update 2

2009-07-28T16:43:00.000-07:00

It seems like we've spent an eternity inside various hospitals! I think we're finally a bit closer to escaping this one. The biggest news is that Sean's NG tube was able to be removed today. His bowels have started waking up which means the obstruction is lessening. He's been promoted to being allowed to have liquids but he's still taking it very easy because he doesn't want to have a set back and need to have the tube placed again. Yesterday he received a couple units of blood in a transfusion because his red cell counts were low. He's been up and walking on his own, and has had several visitors over the past couple of days. We've noticed that the nursing staff at this hospital is good for the most part. I think they're short staffed because it takes them 30 minutes to respond to anything he needs but at least they are competent and know what they're doing and why they're doing it. His spirits are much higher now that the NG tube is out. He doesn't have something constantly gagging him and making his throat sore and it means he's closer to going home. He still has a couple more days, most likely, in the hospital and won't be released until he can eat solid foods and keep them down, and until he can take oral medication rather than IV.

So that's what's going on with the bowel obstruction. As far as the blood clot in the vena cava goes, they've done all of the imaging tests they possibly can in order to determine whether or not the clot is a clot or a suture and aren't able to determine it for sure. Therefore, they have to treat him as if it IS a clot. Since he's a cancer patient and has been through chemo, they are going to send him home on a blood-thinner called Lovanox. It's similar to Coumadin but it's an injection similar to an insulin shot. He will have to give himself 2 shots each day for the next 3-6 months. He has had a few of the injections here in the hospital as they have taken him off of the IV heparin drip (also a blood thinner) and says that the only side effect he notices is a slight burning at the site of the injection. We had a case worker come in to see him today while I was visiting him on my lunch break and he said that we're lucky Sean has good coverage on his insurance (meaning he's met his out of pocket and deductible for the year) because the injections are very pricey but the insurance will cover the costs.

As far as the kidney failure goes, they're just going to leave it at that. They're not going to remove it because 1/3 of it is still functioning and they're confident that he won't have any major problems throughout the rest of his life because his left kidney is still fully functioning. We'll cross our fingers and pray that nothing else happens and that this is the end of all of this cancer-related mess. We're both exhausted and worn out, and it's really hit us how serious his condition really has been. We're thankful, though, for all of the prayers we know are being said on our behalf and we trust that God will show us the way to get through this.

Sean had an appointment scheduled with Dr. Chandramouli tomorrow but that needed to be moved because of him being in the hospital. He will now go in the first week in August for his follow-up appointment. We'll have more information on his AFP levels and post-surgery plans at that time. It's Dr. Einhorn's intention to do bloodwork once a month for the next 12 months to monitor Sean as closely as possible and so we trust his judgement on the matter. Hopefully when we update next Sean will be out of the hospital or very close to it.

Karen

IMC Update

2009-07-26T22:56:00.001-07:00

Today has been Sean's 4th day in the hospital and things are progressing slowly. His bowel obstruction still exists, but from the exams/tests he's had with the doctors, it seems to be beginning to let up. He still has the NG tube down his nose and throat and he still is miserable because of it but it's what will help him get out of the hospital soonest without surgery so for now, it's staying in. The doctors this morning thought that they might be able to take it out today so they ran a trial. They unhooked him from the tube (still left it in him though) for 4 hours. At the end of the 4 hours they said that if when they turned the pump back on, if he put out less than 150 cc's of fluid then he could have the tube taken out. He missed the mark by about 50 cc's so for now he's still needing to have the tube in. He has been walking around a little bit today as well which is also helping. There was an ultrasound tech that came into the room today to do an ultrasound on his legs to make sure that there were no clots in his legs. Everything on that looked normal. Today's not much of an update but in a way, that's a good thing. We'll write again soon.

Karen

Back Home, ER @ IMC

2009-07-25T18:39:00.001-07:00

Alright, this is what's currently going on with Sean:

Early Thursday morning, he woke me up because he was having a lot of sharp abdominal pain, nausea, and vomiting. By the time it was time to leave the Major's for the airport, he was still in a lot of pain. He was able to take some Ativan which helped him get through the trip home. We had requested wheelchair assistance through the airport with his ticket and we were glad that we did because that assistance helped get us through security and boarding. When we arrived home around noon SLC time, he decieded he just wanted to take a nap and slept until about 7:30 pm. When he woke up, he still couldn't eat anything and was still having a lot of pain and nausea. I took him to the ER at Intermountain Medical Center (the new IHC hospital in Murray) around 8:00 pm and when he got there and all settled in, they ran a CT scan on him.

The CT scan showed a few things. It showed that he has a small-bowel obstruction which is what they determined was the cause of the pain, nausea, and vomiting. They also said that this is a very common risk of the surgery that Sean had, and since he has had the surgery twice, he was at an even greater risk. As we understand it, they believe that the obstruction is formed by scar tissue in his case.

The scan also showed that he has a blood clot in his vena cava which is the main vessle that supplies blood back to the heart. Because Dr. Beck had to cut out a part of the vena cava during surgery and stitch it back together, the sutures act as a place for clotting within the vessle which is why the clot formed. This is also a risk of surgery (blot clots are also a risk for people with any form of cancer) but happens in fewer patients than bowel obstructions.

Thirdly, the CT scan showed that 2/3 of Sean's right kidney is no longer functioning due to injury to the renal artery which is the vessle that supplies blood to the kidney. Since his left kidney is functioning properly, they are not as concerned about how this could effect him so much so as the bowel obstruction at this point. The doctors are not sure what caused the injury, but having the surgery that Sean did is more than enough for something like this to happen. As of right now, they have no plans to remove the kidney and the only risk they associated with that plan of action is a risk of high-blood pressure for Sean later in life. We think that they will run more tests on his kidney (imaging, and function tests) later to get more information on how that's going to affect his health.

In order to deal with the bowel obstruction, the doctors ordered an NG tube to be placed. This is the tube that runs down his nose into his stomach and suctions out all of the contents (which at this point is just bile). This is to keep his stomach from being irritated and to give his bowels a break from having to process anything that might come their way so that they can work out the obstruction on their own. The surgical team determined that he does not need surgery for the obstruction at this point but they will see how he improves after monitoring him. They told us it could be many days before the obstruction works itself out so we have no real idea of how long he'll be in the hospital. He is on IV blood thinners as well, in order to help his body process the blood clot. He was admitted early Friday morning (straight from the ER, it was a very long night and following day with having no sleep) and is in room T931 which is in the patient tower. He's up for visitors as he's feeling fine. He's on pain medication to help with the abdominal pain that comes from the obstruction so he's a little lethargic but as far as his recovery from his RPLND goes, it's still progressing very well.

In my last post I had mentioned that Dr. Einhorn had ordered his AFP levels in his blood panel and that same order was given by the on-call doctor from Dr. Chandramouli's office once Sean was admitted to the hospital yesterday. We have not heard the results back from either of those tests yet, but we're still hoping that his levels are normal.

I know this is a lot to digest, but the short of it is that he doesn't need surgery for anything at this point, he's being closely monitored for improvement regarding the bowel obstruction, we have no idea what caused the kidney damage, the blood thinners should take care of the clot in the vena cava, we don't know what his AFP levels are at right now, and his incision from surgery is healing just as it should.

I am still planning on going back to work this Monday. We are bummed that he's back in the hospital and we haven't been able to have a night in our own bed since we left for Indianapolis. We've both just been dealing with this like have with everything else but it is weighing on us so keep us in your prayers. I'll post another update when we learn the AFP level results and if there is any more news on an improvement (or unlikely worsening) of his condition. Thanks everyone.

Karen

Appt with Dr. Einhorn

2009-07-22T14:51:00.000-07:00

Sean had an appointment with Dr. Einhorn here in Indianapolis this afternoon. The purpose of this appointment was just to serve as a follow-up to his surgery and to let us know what the next steps are going to be.

First of all he said that the tumor marker's for the blood that they drew on Saturday as our baseline came back and our baseline AFP level is 75. The lab at the office took another blood sample today from Sean and they'll run the tests on that to see what the AFP is down to now that it's been long enough to know for sure if there's any cancer activity left or not. The goal is to have his AFP levels come back normal when we get the results back in a few days.

As long as Sean's levels are normal, Dr. Einhorn recommends doing AFP checks through bloodwork once a month for the 1st year starting now. So, if he can stay clear on the AFP's all the way through July of 2010, then they will move the bloodwork out to once every 4 months for the next year. Dr. Einhorn also said that he wants Sean to have regular chest x-rays along with the bloodwork so we'll work all of that out with Dr. Chandramouli's office back home. He has an appointment with Dr. Chandramouli next week so we'll update again after that.

Sean is feeling alright, he's been up and moving about the past couple of days but gets worn out very easily. He's still taking pain medication to help with the pain from surgery but he is able to go longer between dosages so that's a good sign. We're flying home tomorrow morning and are looking forward to getting back into the swing of things. I start work again on Monday morning and Sean will go back to work once he is completley healed from his surgery, which will probably be sometime in late August or September.

We'd like to post a thanks to Ed and Teresa Major for their amazingly generous hospitality. They put us up in their home while we've been here despite it being on the real estate market and having to be kept at show-quality! We've been very blessed, once again, by these two and their Christian-love and we hope to be able to repay it back to someone else in need when we are able to in the future. We'll look forward to seeing them when they come out to Salt Lake for a visit with the Kriech's in September.

Post-Op Day 3

2009-07-18T18:35:00.000-07:00

Well, today was a good day in terms of Sean's recovery. He was discharged from the hospital around noon today, which is a whole day earlier than what was expected. He's got his pain under control, is able to eat normal food again, and can keep himself adequately hydrated. He looks good though and we're both excited to be out of the hospital and to be back at Ed and Teresa's. We're both excited to come home on Thursday as well!

As far as what the next step is, the hospital drew some blood today before he left in order to run his AFP levels. Because alphafetoprotien has a long half-life (about 6 days they said) the numbers may not be normal from this test, but they did the draw to use the levels as a baseline for his next bloodtest which will be sometime in the next couple of weeks back home in Utah. So right now we have been reassured by Dr. Beck that all of the known cancer has been removed from his body so we're focused right now on the prayer that no cells have spread anywhere else and that Sean will be cancer-free for the rest of his life. It will take several more follow-up visits back home to determine his state, but for now we're hopeful.

We'll update the blog again when we have more information. Thanks!

Karen

Post-Op Day 2

2009-07-17T10:51:00.001-07:00

Sean is doing well again today. Last night he had a little bit of trouble with his dilauded medication losings its effectiveness. Sean has always had a high tolerance for pain medications and so we knew that we'd need to have them switch him to something else. He was switched onto a morphine PCA (the machine that lets him press the button to self-medicate through his IV) and he was just fine after that. This morning the Dr.'s put him on a "full-liquid" diet and he tried some coke and chocolate pudding. He got up and walked around a little bit today and has had his catheter removed so that lets him be more mobile. He has a friend that found this blog online who is here at the same hospital undergoing the high-dose chemo/stem cell transplant therapy that Sean finished last December so Sean hopped in a wheelchair and I took him down a floor to see Nick. Sean's resting now but I think he plans on eating more and getting out of bed a few more times before the day is up. Everything's looking well, and we're still on schedule to be discharged on Sunday.

Karen

Post-Op Day 1

2009-07-16T08:58:00.001-07:00

Sean's surgery yesterday went very well and nothing unexpected happened. The surgery took a long time but when they finally got him up to his room and we were able to be with him again everything was good. He was out of it for most of the evening yesterday but was awake and talking with me for a bit during the later evening and also early this morning. The hospital room that he's in (IU Medical Center Room # 6671W) is a semi-private room with nowhere for me to sleep overnight so I slept in a chair next to his bed. Not the most comfortable set-up,but it was well worth it.

Sean was able to have the tube that was going down his nostril into his stomach taken out this morning and they are going to start him on some sips of liquids this afternoon and they think he may be able to eat a normal diet sometime tomorrow evening. He was able to get out of bed this morning as well and sit up in a chair for about 15 minutes. He's still very fatigued and sore from the surgery but we've been able to keep his pain under control and keep him hydrated with IV fluids. We're still anticipating him being discharged on Sunday and I just got our plane tickets to go home. We'll be back home on Thursday, July 23.

He looks really good though. He's his usual self when he's awake which is nice to see. I'll update the blog again when we have more info to share with everyone. Thanks and love you all!

Karen

RPLND

2009-07-15T13:58:00.000-07:00

Sean underwent his second RPLND surgery today. The first one that he had was done nearly a year ago with Dr. Child's in Salt Lake. This time we came out to Indianapolis and the surgery was performed by Dr. Stephen Beck. In the consultation with him yesterday, we felt reassured that he knew what he was going to be doing and that he felt confident in his own skills as a surgeon, which was important to us. This man has done many of these surgeries, works with Dr. Foster, and has published a lot of literature on the surgery as well, so he's definitely an authority on the RPLND surgery. We got the sense that we were in good hands.

I arrived at Indiana University Medical Center this morning at 7 am with Sean and my mom, Susan, to get him registered and to go through all of the pre-op stuff that needs to be done (IV placement, vital signs, consent forms, etc). We said goodbye to Sean at 9 am this morning and they took him back to put him under anesthesia. Faith met us in the surgery waiting room and we received updates from a nurse about every 2 hours on his condition. The reports were always normal and they said that he was doing just fine throughout the progress of the surgery. From the time they made the incision (which was about an hour after they put him under) to the time they closed him up was 6 hours....that's a LONG surgery! So it's 5 pm now and we've been here since 7 am....that's a LONG day for us! Sean is in recovery right now as I write this and we'll meet up with him in his room in about an hour or so.

Dr. Beck said that it took about 2 hours for him to get past all of the scar tissue from Sean's previous RPLND and said that once he got to the point where he could actually start removing tissue, things went very smoothly. He reported that there was some tissue that needed to be removed that was right up against the wall of the vena cava which is the artery that supplies blood back to the heart. Because of this, Dr. Beck had to actually clamp the arteries, and cut off the section of the vena cava that had the bad tissue on it. He then was able to sew the artery back up, had it checked by a vasuclar surgeon for a 2nd opinion, and found that everything was great and that Sean was still doing fine. Dr. Beck removed (to our understanding) all of the lymph nodes in Sean's abdomen, on the right and left sides. This was done to help ensure that if there were any traces of cancer cells on any of those areas that they have been removed from his body. Let's pray that this is the end!!!

All in all the surgery went very well. Aside from being lengthy, everything went as expected. Sean only lost a small amount of blood, which is completely normal for surgery, and has another tube down his nostril that will help keep the gas and bile from irritating his stomach. He will have that removed in the morning (although he'll be so out of it the rest of the the evening that he won't even notice it's there) and will be allowed to start sipping on things tomorrow in the afternoon/evening. They expect him to be able to leave the hospital on Sunday or Monday and we plan to be home mid-end of next week.

It's a relief to have this surgery out of the way and behind us once again. Please continue to keep us in your prayers as we face the road ahead. We're not sure what the next step in his medical treatment will be and Dr. Einhorn will collaborate with Dr. Chandramouli to decide what the best options for Sean are in seeking a cure. We'll see all of you at home soon, and thanks to everyone for your thoughts and prayers.

Love,

Karen

Surgery in the AM

2009-07-14T19:54:00.000-07:00

Hey guys, I've got surgery in the morning. We met with Dr. Beck today and he really seems like he knows what he's doing. The plan is to go in there and take out every lymph node in my abdominal area. Hopefully that not only gets the cancer, but also takes out any areas where future problems could come up. Dr. Beck suspects that the surgery may take longer than normal because of scar tissue from my previous RPLND. The scar tissue could make it harder to get my insides out so that he can get behind them.

I'll be out of it for most of the day tomorrow. Karen and I will be on a plane home within a week and a half. Love and miss everyone,
Sean

Surgery Dates and Weekend Getaways

2009-07-10T22:11:00.000-07:00

Since we have been in Indianapolis we have been trying to get everything squared away with my surgery. It has been a difficult process. Some of the people that we were working with were not being very cooperative. We have been having a good time though. We have had some good times with Ed and Teresa Major at their home. We went out to dinner with Mike and Faith Toole.

We finally were able to get things set up for the surgery. It's going to be this Wednesday the 15th at 9:00AM. I have an appointment the day before to meet with the surgeon and do some bloodwork. It turns out that Dr. Foster is too busy to do my surgery in a reasonable time frame so his colleague Dr. Stephen Beck is going to do it. He works with Dr. Einhorn as well and is definitely qualified to do it. Dr. Chandramouli and Dr. Einhorn are satisfied with doing it on Wednesday.

In the meantime Karen's mother is staying with us in Indianapolis. She was on business in Dayton, OH and was able to take some time off to be with us. We are all staying at Ed and Teresa Major's place and are extremely grateful to them for all that they've done for us. The Tooles and the Brownsburg Church of Christ have been amazing as well. Karen's mom wanted us to do something fun over the weekend so we left for Chicago today. We are doing some sightseeing and other fun things. Chicago is a fun city. Tonight we went to the Naperville river walk and saw some of the places where Karen's mom grew up. We will back in Indianapolis on Monday night.
-Sean

Indiana

2009-07-06T17:01:00.000-07:00

We got the results of the PET scan and they confirm what the CT scan saw. The cancer is localized in that one lymph node in my abdomen. Karen and I are leaving tomorrow at 2:55 PM MST. The surgery should be this week.

The Details

2009-07-02T17:08:00.000-07:00

The cancer appears to be localized to a single lymph node in my abdomen. It has grown 5.5 mm, which is something like the length of a pinky nail. We are doing a PET scan on Monday to make sure that it's only in that spot. If the CT scan is correct, I'll be going to Indiana and getting another RPLND surgery. This time the surgeon will be Dr. Foster. He is the best in the world at performing this surgery. Hopefully when I get sewn up this time the craters left from the infection will get fixed too.
I don't know when we will be going to Indiana but it will likely be very soon. We shouldn't be there that long since I don't think I'm doing any chemotherapy. Dr. Einhorn is the man with the plan though. He may have things in mind that I don't know about so I'll keep everyone updated.
-Sean

Den Ständiga Resan

2009-07-02T02:42:00.000-07:00

It seems like this never ends. No matter how many times I beat this thing down it comes back to fight some more. My blood results have come back and my AFP is once again elevated. I get my CT results today and I'll write a more technical blog with more details once I have them. I'm discouraged, but I always am at first when I get news like this. Give me a few days and I'll be ready to fight this thing to the death yet again.

I've been cancer free since December and it has been nice. I love the time I've been able to spend with Karen. I loved being able to go back to work, having hair again (even if it's blond), going back to school, and starting to feel in control of my life again. I even ran 2 full miles at the gym the other day.

If the results come back and show that my cancer is localized, surgery will be the best option. If it is more wide spread we go with a chemotherapy regimen of Taxol/Gemcitabine. That regimen is the last line of standard chemotherapy options that can provide a cure. It does not carry a very high chance of one but there is one nonetheless. If this regimen does not work, there are clinical trials out there that I will look into.

I don't know if this means back to Indiana or what. I'll update again later today. Den ständiga resan is Swedish by the way. It means 'the ongoing journey'. Sorry to be the bearer of bad news. Some day I'll know the reason for all of this.

A thanks....

2008-12-12T12:18:00.001-08:00

I just wanted to say thanks to Brent Soboleski for setting up an internet fundraiser for Karen and I. He is in charge of the website www.teamxbox.com. It is one of the bigger websites on the internet dedicated to the Microsoft Xbox and news about it. The whole online community over there has been a very good thing for me throughout my treatments. When I was like 15 years old and got an Xbox I joined the site and I ended up making a lot of friends there. Even though I don't play video games that often anymore the friendships I've made there have lasted. I've received hundreds of messages from people at the site wishing me luck and praying for me. Anyways, this is what Brent set up for us:

http://news.teamxbox.com/xbox/18410/Sean-Martella-Fundraiser

Thanks again Brent and TXB,
Sean

Last Update From Indianapolis

2008-12-12T11:03:00.000-08:00

Karen and I are still here in Indianapolis. We are going to have to stay a couple days longer than we had originally planned but it looks like our flight home will be on Tuesday the 16th. I'm still in the hospital recovering and I'm starting to feel a little better. My blood counts are all still pretty low and the biggest issue this round has been that I can't eat anything at all. I throw up even water within a couple hours so that has been kind of a hassle. It should resolve itself within the next couple days as my white blood cells come back.

We did get some great news this morning. The best news that we could have hoped for actually. Dr. Einhorn scheduled a CT scan for yesterday morning and we got the results. Dr. Einhorn is moving this weekend so he hasn't been in the hospital but he sent this e-mail to his nurse to give to us. I'll just quote exactly what it says:

"Jackie, could you please let BMT patient Sean Martella know that has had a truly SPECTACULAR remission with complete disappearance of his liver metastases as well as disappearance of his enlarged abdominal lymph nodes. He is in a COMPLETE REMISSION. Please feel free to deliver this e-mail directly to him. Thanks."

So, that's it. It's the best Christmas present I could have possibly received this year. My cancer has never been completely gone before and it feels great. I feel like prayers have definitely been answered. I've got a 70% chance now that it wont come back ever again and I feel confident that it wont. We will continue to update the blog as time goes on.

I just want everyone to know that I'm very thankful for everything that has been done on mine and Karen's behalf. I can't express my gratitude in words as well as I would like. Merry Christmas everybody!

Love, Sean

Another Round 2 Update

2008-12-09T16:30:00.000-08:00

Sean's transplant went just fine. The smell from the preservative wasn't as bad as it was last time, which was a huge relief for me! He seems to be doing a little bit better than he did last time. His white blood cell counts dropped late last week after the transplant (which is normal and expected) and then today we saw an increase from 0.6 to 0.7. Hopefully he'll be close to 1.0 tomorrow and then they should jump up from there. If everything keeps going the way it has been it looks like we'll be coming home as planned, on December 14. Sean's still sick though, just from the chemo and medications and stuff, but he's looking forward to getting out of the hospital and he's resting a lot too. He's going to be having an abdominal CT scan later this week, and he'll probably be getting his pheresis catheter too. We'll let everyone know how those go. That's all for now!

Round 2 Update

2008-12-03T06:53:00.000-08:00

Well, Sean completed his last days of high-dose chemo. We're hoping and praying that another drop of chemo will never have to enter his body. He's felt sick from day 1 but with medication and rest he's been pulling through. He's been on a break yesterday and today and tomorrow he'll receive his stem-cell transplant. Probably towards the weekend he'll start to feel even worse as the chemo has a cumulative effect.

Dr. Einhorn stopped by on Monday and gave us an update on his blood levels and it looks like the cancer levels are still at a safe, normal level. Dr. Einhorn told us that at some point next week Sean will have another abdominal CT scan to check to see if the tumors in his liver are gone and to see if there are any enlarged lymph nodes. The results of the CT scan will determine whether we will get to go home when we planned or not. Most likely, everything will be clear but the worst case scenario would be that he would have to undergo the same abdominal lymph-node dissection that he had previously this summer in order to clear out any enlarged lymph nodes. Let's pray that doesn't have to happen!

Again, thanks for keeping us in your prayers and thoughts. We're almost done!

Round 2

2008-11-29T10:48:00.000-08:00

Hey everyone, sorry we haven't posted in a while. Sean and I just got back into Indy after a nice 2-week vacation back home for Thanksgiving. It was really good for us to be able to go back home and stay in our house and be with our family and friends for a while. Now it's crunch time! Sean is starting his second round of high-dose chemo today but they haven't quite got him started. He was admitted to the hospital this morning though so we've just been waiting for them to get everything together. He's doing fine as of today--no complaints healthwise. We're hoping that this treatment goes as well as the last one did for him but we'll be ready for whatever happens. We're planning on being home around the 14th of December so continue to keep us in your prayers. Sean's last treatments were very successful-Dr. Einhorn saw us and told us that his AFP levels are back down to a normal range and said that he's hopeful that this second treatment will finish everything off for good. That's what we're hoping for! We'll try and do a better job of keeping everyone posted. Thanks to everyone for all of their help and support. We couldn't have done any of this without you.

First Update From Dr. Einhorn and Today's Stem Cell Re-Entry

2008-11-03T19:29:00.000-08:00

Hey, Sean here. I've been checked in to the hospital up here for coming on a week now. It's been, okay. I'm on what's called a Neutropenic diet. It basically means that I can't have any food from outside the hospital that is not pasteurized and packaged. The food in the hospital leaves a lot to be desired. I am still loving the facilities though and how well we are taken care of. I should take pictures of the room so you can all see as it is a lot like something you would get at a good hotel.

Enough about that, here is what is going on. Dr. Einhorn came in early this morning to give me the rundown on my body's response to the treatments. When I got here with the 1-1.5 cm spots in my liver my AFP blood markers were elevated to 270. The first 5 day course of chemotherapy I got was not the high does stem cell therapy but readings show that it knocked the AFP levels down to 55. In a normal person 15-25 is an acceptable AFP level that says that you have no tumors in your body secreting the chemical. After the 3 day high dose chemotherapy I got Wednesday, Thursday, and Friday the marker has been knocked down to 27. That will likely continue to drop over the next couple days as the chemo beats on what is left in there.

Dr. Einhorn says that my response is the best response they can hope for and that everything looks great. We will still be going forward with the 2nd stem cell/high dose regimen just to really blast it all out of me for good.

The actual process of putting the stem cells back into me was interesting. It makes your chest tighten and breathing gets harder. It's cold going in too as they freeze the cells at some insanely low temperature to keep them viable. Now that they are back in me they will find their way back into my bone marrow. From there they will do their thing and specialize to where they are needed in my body. What stems cells can do is remarkable.

Well, I feel somewhat okay. I still have some nausea and just don't feel very good from the chemotherapy in general. I want to get out of this hospital ASAP and so we are just waiting on my blood counts to come back up to a safe level. Thank you to everyone for everything that you have done. Karen and I couldn't be more blessed and I couldn't be more blessed to have her. My parents are out here right now and that has been fun. We are playing a lot of games and watching a lot of movies and such. We can't wait to come home and see everyone soon.

Love, Sean

PS: Vote today everybody

Update from Indy 3

2008-10-29T15:37:00.000-07:00

Sean's stem-cell harvest went very well on Monday. They were able to collect enough of what they needed so that he didn't have to go back for a second day of harvest. Sean was admitted to the Simon Cancer Center this morning and will be staying as an in-patient until he is recovered and well enough to go home. By that time it will be about time for him and I to come home for Thanksgiving! We're looking forward to it! The doctors here have him on a special diet which has him restricted to basically hospital food or packaged food from the store. He can't have any home-made or take-out food because of the risk of getting food poisoning or a bacterial infection. He can still have visitors as long as they aren't sick and he can eat/drink anything that has been packaged/sealed. Thanks for all of you who are thinking of us and praying for us. We're excited to see Jeff and Kathy in a couple of days and to get this treatment over with!

Next Steps in Treatment

2008-10-23T14:45:00.001-07:00

Sean and I visited the hospital today and we just thought we'd update everyone on what the next few steps are going to be.

Sean had some much needed dental work done this morning by Dr. West, a dentist who works in the oral surgery department at the hospital. Thankfully, all that needed to be completed before he could be cleared for his bone marrow stem-cell transplant were a few fillings, and everything went very well with the dentist.

Sean was given his first injections of Neupogen which is a growth hormone used to boost production of his bone marrow stem-cells so that they can be harvested and frozen and then used later in his transplant. (How incredible it is that medicine has come so far as to be able to use a person's own stem-cells rather than needing to find a bone marrow donor!) He will be given injections of Neupogen again on Friday, Saturday, and Sunday. These are little 5 minute sessions that he just checks in and right back out for so no hospital stay needed for this step of the treatment.

Monday Sean will have his catheter placement done. This is a tube that will go into his neck that will allow doctors and nurses access to blood-draws, IV injections, and to do the stem-cell harvests and transplants from as well. Also on Monday, they will start the stem-cell harvest. He'll be hooked up to a machine similar to a dialysis machine which will filter all of the blood in his body for the bone marrow stem-cells. The stem-cells will be collected and frozen. This process (the harvest) will probably need to be repeated on Tuesday so that they can get enough stem-cells to use in the transplant later on.

Wednesday Sean will be admitted to the hospital and will have his first day of high-dose chemotherapy. They will be using a drug similar to the cisplatin that he had before but will NOT be using the cisplatin because in high-dose chemotherapy it will cause kidney failure. He will also be receiving Etroposide which he had during his first treatments of chemotherapy way back in the beginning. The doctors have told us that the dosage he will get during this treatment is about 5x the strength of the chemo he received during his initial rounds of treatment.

Thursday and Friday will be days 2 and 3 of the high-dose chemotherapy for Sean and then he will be on a break Saturday and Sunday. The next day, Monday, he will receive his stem-cell transplant.

This is about as far as we got with the schedule with the coordinator. Sean is going to do these treatments as an in-patient which we all agreed was in his best interest. This way he will be kept hydrated and he will be able to get the pain and nausea medications that he'll need. He is going to be staying in the Cancer Center again which was our preference because that will allow me to stay with him while he is there (not to mention it's a much nicer setup!). The staff at the hospital expects him to stay there between 14-20 days from this coming Wednesday.

My mom, Susan will be visiting us starting tomorrow until next Tuesday and then both of Sean's parents, Jeff and Kathy will arrive on November 1st which is that weekend and will be visiting us for a week.

We're very thankful for everyone's prayers and thoughts for our situation. It has been really rough but we'll live through it and we'll come out stronger both as Christians and as a married couple. Please continue to pray for us. We welcome phone calls and emails, and visitors too! :) I'll post an update next week once Sean is admitted to the hospital with his room information so that people who would like to visit will be able to find him. If anyone has questions or needs to contact Sean, please go through me so that he can continue to rest and gain strength before the start of this next treatment. We love you all and can't wait to see those of you at home in just a few short weeks!

Update from Indianapolis 2

2008-10-06T21:31:00.000-07:00

Sean was given a shot today at the cancer center which will help boost his blood cell counts so that he doesn't get sick while he's at home and out of the hospital. We were able to get some prescriptions for him with some help from one of the hospital social workers. (We're still waiting for Sean's COBRA health insurance stuff to kick in so right now we're listed in their system as "self-pay"....yikes!!!) He slept most of the afternoon (which is good because he needs rest!), but hasn't been getting as much fluids as he needs. This evening he noticed some pain in his bladder and since that can be one of the side effects from the ifosfamide that he was given during chemo, we called the on-call Dr. who told us to go to the ER to have him checked out. So, we went to the IU Medical Center's ER and they did some lab work and didn't find anything wrong or abnormal and said that his symptoms are often caused by being dehydrated.....surprise surprise. This was a huge relief for us since the last few times Sean has been in the ER there have been things that were very wrong with him. So, he watched some Monday Night Football and got a liter of IV fluid while we were there and then we were sent home. All is well....false alarm!

We're expecting our first visitor this weekend: my dad is flying out on Saturday for a visit for a few days. We're excited to see family even though it's only been a week since we left home!

I start my job here tomorrow.....wish me luck!

Karen

Update from Indianapolis

2008-10-05T15:37:00.000-07:00

It's been an interesting week for Sean and I. We arrived in Indianapolis on Monday evening in one piece! We were picked up by Ed and Teresa Major and they have generously allowed us to use their empty condo and extra vehicle while we're out here which has been such a huge blessing to us. We also were able to meet a friend of Ed and Teresa's named Faith. She was able to take time this week to show me how to get to the hospital and cancer center where Sean would be doing his treatments, the grocery store, the church, and other things around the town. What another amazing blessing!

Sean had his appointment with Dr. Einhorn on Tuesday afternoon and it went very well, as you all know by now. He was admitted to the Simon Cancer Center for chemotherapy on Wednesday and was released this afternoon. Fortunately this round of chemotherapy hasn't had the awful effects on Sean that the first treatments did. I think that we were able to learn from the last experience and pass along that information to the doctors and nurses here in Indiana which helped keep Sean feeling alright. He is on some anti-nausea medication that has made him very cloudy and very sleepy so he's been asleep for most of the past few days. It's definitely good that he gets to rest though and I'm glad that the medicine seems to be working for him. I was able to stay with him at the hospital this week during his treatments. They have a very nice set up at the cancer center--there was a couch in the room that turned into a bed, better food than usual hospital cafeterias, and family rooms/common areas with fireplaces, aquariums, puzzles, and books. Sean's room even had a nice LG flatscreen tv that he played Xbox on while he was lying in bed. The room that he was in also had a DVD player and a fridge which was a big plus for me. :)

Another blessing came to us in the form of a job opportunity for me. A man who attends the same church as Ed and Teresa heard about our situation and was able to hire me to do work for him at his pharmacy, where I will work 1-2 days per week. We are very thankful for this help and for all of the different kinds of help that we have been receiving from so many others who care so much for us. We appreciate it so much!

Sean has a big of a break from treatment over the next 2 and a half weeks. After the break is over they will start the stem cell transplant. Kathy is planning on coming to visit in a few weeks, as are my parents. Bonus: Sean will have another break from treatment after his first stem cell transplant is complete which will allow us to come home for 2 weeks for Thanksgiving!!! We're looking forward to seeing everyone when we come home! Double Bonus: Sean will be done with his treatments and feeling well enough to come home around the 14th of December so we'll be home for Christmas. Yay!!

Thanks again to everyone who has been praying for us and for all of the help, financial, or otherwise that you all have given us. Please keep us in your thoughts and prayers and we'll see you all at home soon!

I've got you now cancer.

2008-09-30T13:30:00.001-07:00

As anyone that knows what my medical history since December 2007 has been like, I do not seem to ever get good news from doctors that holds up. Today though will hopefully mark a change in that trend. We got some bad news as well but the good more than makes up for it.

We are now in Indiana and today Karen and I met with Dr. Einhorn. He is very kind and you can tell that he cares. At the same time though you can tell that he is really smart and experienced. We discussed everything about my cancer chronologically and set up a treatment plan. I'll start with the bad news. The bad news is that we will be here longer then we had originally hoped. Dr. Einhorn says it could be up to 3 months. Our goal is to make it home by Christmas now.

The good news is in 2 parts. The first being that I will not be confined in the hospital very much at all. I start a 5 day treatment tomorrow and I will have to be in the hospital from then until Sunday. After that is done though everything I do will be out patient if I feel well enough.

The other part, the best part, is that Dr Einhorn is very sure that my chances of having this cancer cured completely are much higher. In fact, the statistics have completely reversed. My doctor in Utah gave me a 70% chance of dying within a few years. Dr. Einhorn gives me a 70% chance of having this disease completely gone by the end of this year and for it to never come back. He says that they have done thousands of these treatments before and in looking at my individual case there is no way my chances are even near that low.

That news definitely lightened my spirits. Even when my chances were less than a coin flip I believed I could beat the cancer but it still weighs on you to be told such things. Now that the statistics are in line with my hopes everything feels better. The sky is brighter, the trees are greener, and Indiana feels like a wonderful place. Today, at least. These next few months will still be very hard for us and I am still going to get assaulted with some intense treatments.

Let me explain briefly what the treatment plan is. I will be admitted to the hospital tomorrow to start a 5 day round of chemotherapy. I will be given Cisplatin and two other drugs I did not get before. I will have to be in the hospital all 5 days. Then I have 2 to 3 weeks to recover. Once my blood count is at a safe level I will be given the stem cell treatment. They will harvest my stem cells so that they can return them to me after the high dose chemotherapy that will be administered. The high dose chemotherapy will be 3 days long and will seriously knock me out. It will be a higher dose mixture of Cisplatin and Etoposide. After that the stem cells will be given back to me to basically bring me back to life. Then I will have another 2 or 3 weeks to recover and they will rinse and repeat with the high dose chemo/stem cell thing. Then it should all be done. The side effects will be similar to before. Yes, I will lose my hair. :(

Karen and I love and miss everyone back home and we can't wait to come back. Thank you for all the support that is being given emotionally, mentally, spiritually, and physically. When I come home I WILL be cured for good.

Sean

(ps: I love you Karen)

Me>Cancer

A Clarification

2008-09-27T23:00:00.000-07:00

Just to clarify, when we say that Sean's cure rate is now only at 30% that means that he has a 30% chance of being cured from this treatment, NOT a 70% chance that he will die in the next 2 months. Sean is NOT going to die in the next 2 months. IF, God forbid, these treatments do not cure him, the doctors will come up with a plan to control his cancer and to prolong his life as much as possible....which could very well be a very long time.

SO, Sean has a 30% chance of leaving Indianapolis 100% cured, which according to Dr. Chandramouli, are still pretty good odds when you look at it from the perspective that if he had any other type of cancer, it would be much closer to 0%.

I hope this helps ease your minds.

Here We Go Again...

2008-09-26T12:30:00.000-07:00

We received some bad news yesterday regarding Sean's status. He had gone in on Monday for a CT scan and some blood work and the results were given to us at his Dr. appointment yesterday.

The doctors had initially been looking to tell whether or not there was any yolk-sac cancer cells left in Sean's abdomen after the surgery or if what was left inside of him was just scar tissue or teratoma. Dr. Chandramouli told us that the CT scan did not show any growth in Sean's abdomen but that his blood work confirmed that his AFP levels had gone back up...again. Dr. Chandramouli also told us that the CT scan did show some new tumors in Sean's liver. The tumors are about 1.5 cm which is a huge growth considering his last CT was taken just before his surgery, and that scan did not see any new spots. That means that in the last 5 weeks, these tumors were able to grow to a size large enough to register on a CT scan.

What this means is that Sean's cancer is officially in relapse. Dr. Chandramouli said that there were most likely already cancer cells on his liver (and possibly other parts of his body that we are unaware of) and that they had started to grow over the past several weeks. This means that Sean and I will be leaving to go to Indiana University to meet with Dr. Einhorn and get another round of treatment underway.

Sean will have to undergo a salvage regimen of chemotherapy using different drugs than what he did the first time. He will still receive the cisplatin (which is what made his hair fall out), but he will be receiving a couple of additional drugs that he did not have the first time. After the salvage chemotherapy, Sean will have a stem-cell transplant which will allow his body to regenerate his immune system after the treatment is over. This treatment requires him to be blasted with several more doses of high-intensity chemotherapy, and the stem-cells (which will be his own, so no need for a donor) will re-grow his bone marrow and help keep him alive.

Sean's appointment is scheduled for Tuesday at 2:00 pm so He and I will be flying to Indianapolis on Monday morning and we'll arrive there in the evening around 7:30. We don't know for sure when we'll be returning but we do know that we'll be out there for a couple of months most likely. Thankfully he and I have been offered a condo to stay in by a family friend that we know out there and they have also offered us the use of one of their cars. Unfortunately, for most of the time during his treatment, Sean will need to be hospitalized since he will have nearly no immune system function.

I am going to be looking for temporary employment in Indianapolis so that we can try to stay afloat during all of this.

We're not sure what this will do to Sean's fertility but we know that it definitely isn't good.

Dr. Chandramouli let us know that Sean's chance of cure is now only 30% when before it was between 80%-90%. Please keep us in your thoughts and prayers.

Sean is staying as strong as he can and so am I but of course, this is the most difficult time he and I have ever had to face in our lives. If anyone has any questions please leave them in comments on this blog and I will answer them. This is to keep Sean from having to deal with answering questions and to keep our families from the same ordeal.

Thanks for all of the love and support

Karen

Sean's Update

2008-09-06T00:07:00.000-07:00

Sorry for the roller coaster ride everybody but I have another update. Apparently my surgeon jumped the gun and things aren't as bad as he made them seem. He came in the room and basically told me that there was cancer he could not get to during the surgery and that I still have it. He said I will need more chemotherapy, possibly radiation, and further surgery. As you read in previous posts I was talking about going to Indiana to try and deal with this because of their reputation for treating testicular cancer.

Well, yesterday I had an appointment with Dr. Chandramouli and he said that Dr. Childs (my surgeon) spoke too soon. He ran further analysis and looked at the pathology results of the tissue they took from my abdomen. That last little area that Dr. Childs couldn't get to actually shows no evidence at all of any yolk-sac cancer being present. There is no reason to think that I have cancer right now so... yay :)

What is left is most likely either scar tissue or teratoma. Teratoma is kind of complex but basically it's a local tumor growth that can grow within itself but is not a danger to survival. If it grows too much it can cause discomfort just from its size. If I do have teratoma and it is growing I may need another surgery somewhere down the road. Here's a link for more info on teratomas:

http://en.wikipedia.org/wiki/Teratoma

The definition of teratoma given is pretty broad and probably will not help you understand what I'm talking about that well. There are bad types of teratomas that it talks about but the kind I might have is not dangerous.

The plan now is to contine to monitor my blood markers and do routine CT scans to make sure that the cancer stays away. Hopefully it does because the next step is salvage chemotherapy and stem cell transplants (ugh....). I have THE authority on testicular cancer aware of my case and giving advice on it though so I feel confident that I'm getting the best there is. Dr. Einhorn in Indiana is in direct contact with Dr. Chandramouli and is ready to see me should anything else happen. This is the guy that Lance Armstrong went to. He is the only reason I have a chance to beat this in the first place. Here are some links about him, pretty impressive:

http://en.wikipedia.org/wiki/Lawrence_Einhorn
http://www.iuinfo.indiana.edu/homepages/3-3-2000/text/einhorn.htm
http://jop.ascopubs.org/cgi/content/full/1/4/167

I'm feeling almost tip top again and things are well. Thank you for all the prayers, thoughts, and help you have given me. It was great to see so many of you at the wedding. You helped to make the day truly special for Karen and I. If you have any questions e-mail me at seans_mailbox@hotmail.com.

Lots of love,
Sean

Update from Taffy

2008-08-30T07:21:00.000-07:00

I just wanted to let everyone know that Sean is home now with Karen and doing very well. They released him yesterday afternoon because he had made such great progress. His color is a lot better and his strength seems to be returning. I was skeptical about his making it up the three flights of stairs to their condo, but he did just fine! Karen made him some of her delicious homemade chicken noodle soup for his first night home and we played the game Apples to Apples with them.

As far as the trip to Indiana, it will still most likely happen, but Dr. Einhorn has been in contact with Dr. Chandramouli and his recommendation was to wait a month and then do testing to see if the yolk sac cancer markers are elevated again to determine the next course of action. Sean has decided to wait until the results come back before making the trip. We'll keep you posted as we know more.

Today is Karen's 21st birthday, and she and Sean are excited to watch the game today and be together!

Happy Birthday Karen, and thanks for taking such good care of Sean!

We love you both so much!

An Update From Karen

2008-08-28T09:39:00.000-07:00

Well, yesterday became a nightmare for him when we got stuck a nurse who didn't know what he was doing which ultimately resulted in Sean being taken off all pain medication for 6 hours while he received a blood transfusion (if this sounds like it was completely unnecessary, believe us, it was. There is no medical reason to keep a person off pain medication while they receive blood.) Luckily, the food director here at this hospital who is like my second father, came up to see how he was feeling and noticed the situation. He got the floor nurse involved who got Sean fixed up and he was fine for the rest of the day. He started his clear liquid diet yesterday and has been doing great with it. He is allowed to eat soft foods today like mashed potatoes, etc, but in very limited portions. He's been able to get out of bed a few times, which is excellent, and just what the Dr. ordered so he's progressing very nicely while he's been in the hospital. Still no word yet though on when he'll be released.

The bad news came this morning, though when we were told that the pathology reports that got sent to the lab from the surgery came back positive for residual cancer cells meaning that the surgery didn't get 100% of the active cancer cells out of Sean's body. About an hour after we got the news, Sean's wonderful oncologist, Dr. Chandramouli stopped by to go over the results with us. He's really been great for us during this whole thing and we're really lucky to have him as Sean's cancer doctor. Dr. Chandramouli explained that there are two possibilities for the type of cancer that is left in Sean's body. The first type is called a teratoma (I don't know if that's spelled correctly) which is a cancer that grows locally and does not spread to other areas of the body. If Sean has this type he could live a long full, relatively healthy life while still having cancer. This type of cancer can result from having the regimen of chemotherapy that Sean went through, and is sort of what we're hoping it is. The second type is what has been in Sean's body from the beginning. This type of cancer spreads throughout the body and can be fatal if it goes untreated. Dr. Chandramouli referred to this as being yolk-sac cancer cells. Long story short (haha, right, I know) Sean and I are planning on going to Indiana University to meet with Dr. Einhorn. This man discovered that cisplatin (the drug that makes you really sick from chemo, but is the most effective in treating cancer) was effective. He wrote the book on treatment for testicular cancer and the operation that Sean just had was developed out of that university as well. We're going there to get the best advice and potentially treatment possible. If when we go out there and they decide to treat this as aggressively as we'd like them to, Sean will most likely have the same operation again, with the team at Indiana University, and in this case, they WILL get all of the tissue and tumor out of his body.

I know it's a lot to take and it's really confusing and it is actually very exhausting. Sean has requested that I let all of you know that he loves you and that what he would like most right now is to be left alone about questions and everything. If you do have questions or want a message relayed to Sean, post your comments and question on the blogsite here and I'll get back to you about everything. Please continue to keep us in your prayers and thoughts. Thanks to everyone who has stopped by too, it's been really nice of you all.

Latest Update From Taffy

2008-08-27T08:55:00.001-07:00

Sean is doing much better. They took the tube out of his nose and that has made him a lot more comfortable. He can start drinking things now so that will be good. He was up and walking yesterday and the doctor wants him to continue to do that as much as possible to get things moving in there. His platelet count is low, probably from losing blood during the surgery, so they are giving him a transfusion today to help with that. Hopefully it will improve his energy level too. We're still waiting on the pathology reports, but Sean is doing amazingly well!

Sean Update from Taffy

2008-08-25T23:18:00.000-07:00

As most of you know, Sean went in for surgery today at St. Marks to remove the tumor mass in his abdomen that had started to grow again following his chemotherapy. It took about 6 hours to complete because of the delicate nature of the surgery. The lymph node that they had to remove was attached around the aorta and vena cava, and according to his surgeon, Dr. Lane Childs, it was like it was super glued to the arteries. It was the stickiest one that he has ever removed, and made for a challenge in getting it out of there. It left a little residual film behind that couldn't be safely removed, so we're not 100% sure that he was able to get it all, but the doctor still feels like it was a success. We will have to wait a couple of days for the pathology report to come back to see if anything else will need to be done.

As far as the hospital stay goes... Sean has a tube running from his nostril down the back of his throat and into his stomach to help in relieving the stomach of any gas. He will need to keep that in until Wednesday, and will be unable to eat or drink anything until they remove that. He's on an IV to keep him hydrated and he's being cathed for the time being. He will need to stay in the hospital until his bowels are functioning properly and he's able to eat normally, which could take about a week. It all depends on how quickly the plumbing starts working again.

He was pretty out of it today which was understandable, but was aware enough to tell his sweetheart and new bride how he felt about her. When he opened his eyes for the first time after the surgery, he looked at Karen and said, "Hi sweetie...I love you"! How cute! Of course Karen's been an angel by his side, making sure that he's comfortable and taken care of.

Thanks for all of the love and concern that you all have shown for Sean and our family. We will try to keep you all posted with the latest. Love to you all...

Aunt Taffy

A PARTY FOR SEAN

2008-04-01T05:52:00.000-07:00

Hi Everyone! We're having a party in a couple of weeks for all of Sean's family and friends to come together to celebrate with us! We've sent out some invitations but we wanted to post a general invitation here as well. Thanks!

It's a "no more chemotherapy" party for Sean Martella!
Saturday, April 12, 2008
6:30 p.m.
At: 575 E. Channel Drive (5860 S.) Murray, UT
We will be bbqing hotdogs and burgers. Please bring a small side-dish or a dessert to share.
RSVP to Karen @ (801) 440-8193 by 04/10/08

Cancer Update #7

2008-03-19T20:25:00.000-07:00

It's been a few weeks since my last update. I've actually been doing very well. My 3rd cycle was the best one I've had yet. I hardly got sick. We think we figured out a way to keep the nausea away for the most part. Fluid, lots of fluid. I get a couple liters at the doctor's office and then a couple liters at home each night. All of it through my IV port. I'm on my last cycle now and we are doing the same thing again. It seems to be working again. Except that I'm so loaded with fluid I'm gaining weight from retaining a certain amount of it. You can call me marshmallow. I can't wait to lose it once this stuff is over.

How's this for irony? My last day of treatment will be April 1st. Better known as April Fools Day. I thought that was pretty funny. Anyways, I got my latest blood work back on Monday and it was pretty awesome. My AFP level that I've mentioned before is down to 11. Which is in the normal range for the average person. My other marker was drastically reduced as well and showed me as normal. I guess that means that the cancer is dead. Hopefully any dead tissue that is now left will make it's way out of my body so that I don't need a surgery for that. I really don't want that surgery. It's risky and I certainly don't want a giant scar splitting me from crotch to chest.

Well, the battle is almost over. It's been crazy and I'm really glad that my body has responded well to the treatment. It's not often that people beat cancer. I'll be playing the waiting game after April 1st for a year or so. Waiting to see if the cancer comes back (there's an 80% chance that it won't and I know it won't anyways) and waiting to see if my fertility comes back. I'm really hoping for that one. I've got some scars from the surgeries and I'm starting to get what's called chemo burns. Little dark spots on my hands and feet that are caused by the chemotherapy drugs causing internal damage. They look like healed burns. Aside from those things you'll never know I had cancer. My hair will grow back soon and I can't wait for that. I'm sick of looking like Powder (look up the movie if you don't know what I'm talking about). I get to go back to work full time and take school full time in the summer. I've got a few vacations planned that I'm excited for.

Thanks for all the support. My parents, Karen, and I have really appreciated all the love and kindness that has been shown to us throughout this crazy thing.

Love, Sean

Sean's Latest Update

2008-02-25T13:20:00.000-08:00

It's been a while since my last update but I haven't had much news in the last couple weeks. This last week was a good week for me and I felt really good. The whole week of Valentine's Day was a struggle. I had a lot of problems and ended up losing 10+ pounds in a matter of days. I was dehydrated and as weak as I've ever been. They eventually fixed it though and my weight is back up to normal.

On Friday we met with Dr. Chandramouli and talked about my treatment. He prescribed me some new medicines. He also took a look at my latest CT scan. I guess the tumor in my lungs that was 2.5 millimeters is 1.5 millimeters. The big tumor in my abdomen was 10 millimeters and on the CT scan it's 8 millimeters. Keep in mind this scan was done about halfway through the first week of my second cycle. I think it's pretty good news. It helps if you think about it like a sphere. 2 millimeters is a lot if you think of it that way because 2 millimeters of it when the tumor is at 10 millimeters in size is a lot more than 2 millimeters of it now that it's 8 millimeters in size. So next time it's measured it should be an even bigger number smaller. I don't know if that makes sense to anyone or not.

Today I started my 3rd "hell week" of chemo. So tomorrow or Wednesday is when it starts to make me sick again. I got the latest blood results back as well. Remember the AFP level I talked about? Well, it was 7308 at the start, 2513 after the first measure, and now it's 120.4. Like I said, normal for a person is 15. So it has dropped significantly again. In fact it's almost normal and I'm only halfway through. The tumors aren't secreting very much anymore. They're almost dead. My other marker, Beta HEG, has dropped a lot as well. A normal level for a person is .03. At the start mine was 5. Then it was 1 at the beginning of February. Now it is .1. So that marker is almost normal as well.

That's all the news I have for now. Thanks for everything. 6 more weeks to go.

Love, Sean

Latest Update From Karen

2008-02-11T06:45:00.000-08:00

Sean started his 2nd chemotherapy cycle on Monday, Feb 4, and it went all week long. He was his same old self until Wednesday, and then things went kind of sour. The doctors told us in the beginning of his treatment that the chemo drugs would have a cumulative effect on the way that he feels so it was not surprise to see him get sick faster this week.

Kathy and I took Sean to the ER at St. Mark's Hospital on Wednesday night. He was extremely nauseous and none of his medication was working for him. He vomited several times over the span of 2 hours and was very dehydrated. The staff at the ER gave him 3 liters of IV fluid (mostly saline solution) and 3 dosages of anti-nausea medications. We were finally able to take him home around 4:30 am.

When Dr. Chandramouli heard about his night in the ER, he set Sean up on Homecare. They delivered a bunch of medical supplies and sent out a nurse to show me how to give him IV injections of anti-nausea through his PORT (the same drugs they give him in the hospital).

Thursday was a good day overall, but Friday was more like Wednesday. The dosage of IV Zofran that they had said that I could give him wasn't cutting it and Kathy and I had to take him into the ER for the second time Friday evening for extreme nausea and slight dehydration and stayed there with him until 1:30 am. After this trip to the ER we realized that Sean responds much better to the anti-nausea medication when he is hydrated and it is easiest for him to stay hydrated through IV fluids. SO on Saturday, the Homecare delivered IV fluids to us and sent out another nurse to show me how to set him up on an IV drip. They also said that I could increase the dosage of IV anti-nausea medication that I was giving him from 8 mg every 8 hours to 8 mg every 6 hours.

Since then he's been a little bit up and down but we feel like we have things mostly under control, for now at least. He sleeps a lot, takes his meds, eats and drinks as much as he can handle, and keeps in good spirits by playing xbox and watching the new Planet Earth (discovery channel) dvd set that he bought.

We're hopeful that the next two weeks will be much better for him and that he'll be feeling much better. We're looking forward to Jeff's visit next week too, and to be a couple more weeks closer to the end of this treatment.

-Karen

Quick Update from Sean

2008-02-04T12:52:00.001-08:00

I figured you are all curious about the results of my MRI. Finally some good news! It's not in my brain. So there is at least one part of me that is cancer-free. Also, I'm sitting here on the chemo drip right now and my nurse (who looks like Jeff Foxworthy) brought me the results of the blood work they did today. I'll try to explain. One of the ways they monitor the cancer is by looking at certain markers in your blood. For my type of cancer the biggest marker is your AFP level. (Alpha Feta Protein or something like that). Anyways, a normal person's level is 15. Mine was 7308 at the start of all this. Crazy I know. Anyways, its 2300 as of today so I have dropped about 5000 points. In other words, my body is responding well to the chemotherapy. My body is beating down the cancer like the red-headed stepchild that it is. This probably means the giant creature in my abdomen has shrunk significantly as well. I feel like it has because my stomach feels a lot less hard and distended when I touch it. 3 weeks down, 9 to go.

Love, Sean

The Headshaving Pictures

2008-01-29T05:33:00.000-08:00

Well, Sunday January 27 rolled around and as much as we had been expecting it, it was still a huge shock when Sean found a bunch of his hair in the sink. It was even more of a shock to see how much hair he could pull out without even trying.

He decided to trim his hair that morning so it wouldn't be so obvious that his hair had begun to fall out so we shaved it down pretty short. Then today, Monday January 28, his facial hair started to go and he decided it would be best if he just shaved his head completely so that he wouldn't have to shed for the next few days.

We went out and bought some shaving cream, a razor, and got to work (see pictures).

It was a sad thing to do but we tried to have some fun with it. I just keep reminding him to tell himself that his is all a temporary situation and that his hair WILL grow back. He really doesn't even look bad with his head shaved! We bought him a couple of beanies (hats) at the mall earlier last week so that he doesn't have to walk around town with his head shaved. They will do very well in keeping his head warm too. So, I think he's doing pretty well right now....he just misses his hair!

-Karen

Latest Update from Sean

2008-01-23T05:38:00.000-08:00

Hey, haven't posted an update in a while. I thought I'd try to put one together. Last week I spent Monday through Friday at the cancer center getting my first full week of chemotherapy. On each day they gave me have the Atropaside (sp?) and the Cisplatin. On Tuesday they also gave me Bleomycin. Throughout the week they also administered some IV drugs to prevent nausea.

Monday through Thursday I was pretty feeling pretty well. On Friday things took an unfortunate turn and I was pretty nauseous. It's been starting to hit me around 4:00 PM. It lasts pretty late sometimes. I've been prescribed something like 10 anti-nausea/pain medicines since and none of them were working at all. I was also taking these steroids on Friday, Saturday, and Sunday that supposedly help with nausea prevention. They also give you an appetite boost and help to kill cancerous cells. I'm thinking now that those were a part of my problem. I've been having these things that I call the 'chemo hiccups'. They're pretty painful and they feel like fire shooting up through my body. It is similar to heartburn but much more intense. They are definitely not fun.

Saturday was my worst day. I was feeling pretty trashed from the moment I woke up but I just wanted to wait it out like I have been. I was struggling most of the day and in quite a bit of pain. Karen got home from work in the evening and at that point my pain was beyond belief. It was a wrenching kind of feeling in my stomach that was just making me writhe in pain. I couldn't sit straight, my eyes were watering, and I can't really describe it very well other than to say that it was the worst pain I've ever experienced. I didn't want to go but we ended up in the ER that night. They got me some morphine, a lot of fluids, and some nausea medications that fixed me up. Sorry for the bum nature of this update so far but I figure you all want to know what is going on even if it isn't pretty. I'm somewhat of a medical anomaly it seems because my body just isn't taking too well to any of the conventional anti-nausea and pain remedies for cancer patients. It happens sometimes though.

Since Saturday things have been somewhat better. I'm still pretty sick on and off but I may have found an anti-nausea medicine that helps a little. It is the pill form of the drug Zophran. When coupled with my Loritab prescription it seems to give me some relief. Hopefully it keeps working for me. The next week or two should get better though because I'm not on the Cisplatin again for a while. That is the main cause of all the nausea.

The good news is that my back pain is still gone. It gives me a lot of confidence in what the chemotherapy is doing to the cancer. My stomach also feels less firm and distended. I take that to mean that the tumor in there is shrinking. The cancer is going away, I'm sure of it. I go in for an MRI on my brain on Thursday just to make sure that the cancer isn't in my brain. As I said before I don't think it is and neither do the doctors. Nevertheless it will be a relief to know for sure.

Thanks again for all the thoughts, prayers, and support. I love you all and I'm sorry if anyone feels like I'm neglecting them throughout all this. I don't mean to if it ever comes across that way. I'm going to keep on updating when I can. 11 more weeks to go and I'm cancer free. Then I need a vacation.

Love, Sean

Day 4 Update from Jeff

2008-01-18T05:56:00.000-08:00

Day 4 of Sean's aggressive Therapy - We didn't really start the day until around 10:30 because of Sean's doctor wanting to visit with him......Sean, Karen and Kathy spoke highly of him prior to me meeting him today and I can see why...a totally COOL Doc!!! His name is Dr. Nitan Chandramouli (see photo) and he is so down to earth its' not funny. [Pay attention Dr. Wright and future Dr. Martella]

He listens and answers our questions while putting us at ease; after all, Cancer is one of the worst words a doctor can ever have come out of his/her mouth! He spends quality time with us versus the "rush in and rush out" type treatment along with a good mix/sense of humor with serious knowledge / advice / recommendations, he's very focused on seeing us through the treatments and wanting to know every little detail because they can often lead to other signs/symptoms that are part of the therapy, and on and on and on......this is a doctor that changed his field of practice (while in college) 2 or 3 times before deciding on "Internal/Oncology" medicine. Oh well, the visit went well and Sean's still having the standard Nausea (not too bad though) along with the "all night get up and down #1 visits to the bathroom every night" because of the fluids being pumped in during the day...totally normal and he's still maintaining a positive attitude. Sean's incision from surgery is healing nicely as the bandage was removed today and it looks very nice according to the doctor. I asked the doctor when he expected Sean to start losing his hair so I could plan on my day of shaving and it looks like another 2-3 weeks, so I'm going to plan a Shaving party for my next visit up in SLC (probably around the week of February 4th). After all, if he's going to lose it, then so will I.

Future Important Visits for MRI and CT Scans: MRI of the Brain to ensure NO spots (last big hurdle for fast/prayer) is scheduled for 7:00am on 1/24 and then he'll do a CT Scan after the treatments (March/April) because he can monitor Sean's blood markers daily if needed to ensure the Chemo is doing its thing. I'm sure there will be others, but these were the 2 biggies I wanted to make everyone aware of to this point.

One of the office staff members came over to our little "fish tank" corner and handed us a couple of buttons that read, "Cancer Sucks" in big bold letters because I was asking her about the yellow "LIVESTRONG" wristbands that are apart of the Lance Armstrong's cancer foundation for us to show our support, she only had one child size wristband at the time (too small for Sean and I, so teeny tiny Kathy is wearing it proudly)......it was a very nice gesture from the office staff as they have been so nice to us!!!

Before my trip up here to visit with Sean during his therapy, I had the opportunity of visiting with some very good longtime friends (Francois family in Chandler Arizona) from when we lived in Arizona back in the mid 90's and he is now a Bishop in our Church and it was his counsel/advice/friendship that night that put me in the right frame of mind to return home in Salt Lake City with the proper spirit/mindset and I will always be grateful to him and Laura for being there...he read a few verses to me out of D&C 78 that caused me to think differently because the Lord has a plan for each of us and sometimes we don't see it when it's right before our very eyes...I am thankful for my blessings and and I will be faithful to the end as Brian and I discussed the proper peace of mind during the various trials/challenges in our lives.

One last thing before I let you go because this really tells the story of our family; my wife Kathy has decided to defer her Dental Hygiene program/schooling for a year while she tends to our family with me in Phoenix/Scottsdale working for great hotel company at their Hilton Garden Inn and other/future projects. Kathy is without a doubt the backbone if not the frontbone of our family and Sean is so LUCKY to have a mother like this in his life today as I am very grateful to have a friend and wife in her...thanks Honey and please know how much we LOVE you for what you do.

Keep up that Martella Spirit gang and thanks again for your SEAN support!!! jm

Cancer Survivors Part 1 - Pete Postlethwaite

2008-01-17T07:07:00.001-08:00

Everyone has probably heard the story of Lance Armstrong and his major whipping of testicular cancer, but there are many other (famous) men that have gone on to lead extremely amazing lives after beating testicular cancer.

Maybe you'd like to hear about some of them.

You probably don't know the name Pete Postlethwaite. When you see his face, you should know him. He has been in such movies as Hamlet (with Mel Gibson), The Last of the Mohicans, In the Name of the Father (for which he was nominated for an Academy Award), The Usual Suspects, Dragonheart, Romeo + Juliet and Amistad, just to name a few.

Not bad for a guy who Steven Spielberg calls "the best actor in the world".

He was diagnosed with testicular cancer in 1990, and later had one removed.

By the way, every movie I mentioned above came out after he was diagnosed and if that weren't enough, he is currently starring in the title role of King Lear in Liverpool at the age of 62.

Jeff's Thoughts & Feelings Folllowing Day 3 of Chemo

2008-01-17T06:49:00.000-08:00

Kathy and I are trying to let him have as much time to himself as possible in the mornings with Karen before she leaves for work/school and then we sort of step in for the late morning shift if you know what I mean, so we didn't show up until around 10am or so with a snack/lunch (sandwiches/cookies/juices/water) which he seems to enjoy. The most interesting thing thus far has been his willingness/desire to be so positive even though today was difficult with the nausea. He's taking a nap on our upstairs bed (because RIO keeps trying to lick his face down on the sofa...she's very sweet and knows something is not right) after watching a movie that he picked out from the RedBox Video Rental. If I could only get $0.03 from each rental throughout the country from those crazy RedBoxes, I'd be a happy camper. Today's photo's were taken as we just finished his treatment and along with beating him "silly" at Yahtzee where Kathy got the both of us with 3 of the 4 games played.

He really enjoys reading your emails and now the blogsite, so please keep em' coming, but maybe a slight cut down on the phone calls because he needs to rest (Kathy speaking...) or in therapy...don't think for a minute that we're speaking for him because he loves all of your support, but his rest is so important!!!

Oh yeah, there's a fish tank right next to Sean's Recliner Chair that is so awesome and the fish are very soothing to watch after a while because you can lose your thoughts in them as they swim around....YES, there's even a Nemo and he likes to hang around the top looking for his dad.........

Gotta run, but thank you again from Kathy, Natalie, Stephanie, RIO and I.......you all rock!!!

jeffy

Update From Sean

2008-01-16T15:07:00.000-08:00

I just finished my 3rd day of chemotherapy today. It's not too bad. I'm not there as long as they told me I'd be. I'm feeling pretty nauseous today but I don't know if that is from the tumor in my abdomen or my chemotherapy. Medically, I don't have much of an update.

As a bit of good news I've only taken a couple pain pills for my back in the last few days. This likely means that the cancerous swelling in my lymph nodes that has been causing the pain has gone down. I was having to take a pill every 2 hours for the last few weeks and sometimes that still wasn't enough. Take that for what you will but it's good news to me. I won't know officially what has happened to the cancer so far until they start doing some blood work or run some more CT scans to see if it's gone down.

Latest Sean Update

2008-01-16T11:21:00.001-08:00

Sean is doing well with his chemo, and has been able to finish the treatments in about 4 hours. His spirits are good, and Taffy says he already feels like his back pain is lessening.

Taffy has decided to drop out of school for now. They are keeping her position open for next year, and will allow her to keep her credits, etc, so that is good.

-Elaine

Lance Armstrong Quote of the Week

2008-01-14T07:20:00.001-08:00

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”

Sean is reading:

2008-01-12T12:11:00.001-08:00

Cancer Update 2

2008-01-11T13:18:00.000-08:00

From Sean's MySpace Page...

So here is 2. I got in to see my Oncologist today (cancer doc). His name is Dr. Chandramouly or something like that. Crazy name. He's an Indian guy. He's cool though and I think he'll be a good doctor for me throughout this whole chemo thing. He answered all our questions and he has a good bedside manner.

We had a look at my chest CT from yesterday. More bad news, it has spread into my lungs. There is a 2 centimeter mass in my right lung. That makes me officially stage 3. As the doctor said Stage 3b. I guess there is an a and a b, the b being more serious. He said also that there is a stage 4 though and I didn't know that. Stage 4 is when it has spread to organs other than the lungs and from the looks of the CTs the rest of my organs are clean.

We saw the physician's assistant first and he scared the hell out of me because he said that there is no way of knowing if its in my brain or not yet. He said it's a 50/50 chance. All I've gotten since this whole mess started is more bad news after more bad news so I was freaking out in my head. Every time someone with a medical license speaks to me it seems like my diagnosis gets worse. Anyways, Dr. Chandramouly finally came in and he cleared things up. It's not a 50/50 chance that it's in my head too. It's actually not likely at all. I don't show any symptoms of it and he said that he really doesn't expect to see anything when they run the MRI on my brain.

Then the Dr. pulled out a piece of paper and just started covering everything that is going to happen throughout the treatment. I guess there are 3 classifications: low risk, intermediate risk, and high risk. Taking everything into account mine is a stage 3b intermediate risk. I know I'm going to beat this but statistically it means that I have an over 80% chance (probably up into the 90% area) of getting rid of this thing right now from just the chemo. Then after that I have an 80% chance that it won't come back within 5 years. Then once 5 years is up I'm considered a normal cancer-free person.

Next, we went through how my chemo will go. There will be four different three week cycles. I start this Monday. Monday through Friday of the first week in each cycle I will have to come in every day to be administered 2 drugs (cisplatin and something that starts with an A. Cisplatin is basically just liquid platinum). This will take about 6 hours of me sitting there hooked up to an IV each time. Not too fun. Then after that week 1 I only have to come in once on week 2 and once on week 3. On each of those visits they'll give me another drug, bleomycin. Once that's all done, rinse and repeat 3 more times. If all goes as scheduled I'll be done around the beginning of April.

As far as side effects goes, there will be a few. I'll lose my hair obviously but maybe not my eyebrows like I thought (I think I'd look ridiculous without eyebrows). The doc said that I could get really nauseous and sick all the time but because of anti-nausea medicines they will give me he thinks that I might not. He encouraged me to keep a couple classes, work when I can, exercise, and try to do as much as I'm up to. He said the people that try to maintain their life as much as possible do better. He said the fatigue will have a cumulative effect and by the 3rd or 4th cycle I'll be pretty weak. My immune system will be weakened and my blood counts will be low. He doesn't give me very good chances for my fertility coming back. That is one of the most terrible aspects of this whole thing.

Tomorrow I'm having an outpatient procedure done that will put this access port thing in my chest. They'll put a cut in my upper chest on the left side and put a line in that will wrap around my collarbone and into a vein in my neck. then they'll patch me up and I'll have sort of an active IV access point. That will make it so that I don't have to be get jabbed in the arm 3 times a day and be constantly getting new things. They can draw blood, administer the drugs, feed me, and everything through the port. So that will be good.

Feel free to forward this to any relatives, people that know me, or non-myspacers. I don't have any e-mail addresses for anyone so Myspace and Facebook are the only places I really have to update people. That's really all I have. Once I start chemo and learn some more things I'll post another update. Really though, I'm putting all the info I have in these things so if you call and ask me, my family, or Karen we aren't going have anything else for you. Love and thanks,
Sean

Cancer Update 1

2008-01-11T13:13:00.000-08:00

The following was taken from Sean's MySpace...

Just wanted to give some updates throughout this whole thing for those who care. As most of you know I was diagnosed with testicular cancer. Kind of a shock to me because my only symptom was back pain from the cancerous lymph nodes in my back being swollen.

Well today I finally got into the urologist. He had a look and a feel of the old boys and finally someone felt what they think is the mass. He had another doctor come in as well that agreed. So then he took me into the another room and showed me the images from my CT scan. What I saw was pretty disturbing. For the last while I've had kind of a bump in my abdomen. I thought I had just gained a few pounds because that's what it looks like. After looking at the images we learned that it's a huge cancerous mass of crap inside me. It's bigger than some of my major organs and its pushing all of them around. It's putting all kinds of pressure on my stomach and is the reason I've been feeling sick after eating normal amounts of food for the past couple weeks. With the way the doctor was talking and the way the images looked I got really dizzy and almost blacked out there in the room.

So we got back into the other room and I laid down and started to feel better and get my color back. Damn cancer is making me weak. Anyways, I calmed down when Dr. Childs explained that it doesn't make much of a difference treatment wise and that my chances are still really good. I feel confident but that mass is scary. So I'm pretty far advanced and it's classified as at least high stage 2 and possibly stage 3 cancer. Dr. Childs wants to get it out of there ASAP so I'm scheduled for surgery tomorrow to remove my rightie. It should be a fairly simple surgery and I'll be okay but I could be starting chemo as soon as next week. That's when the real hell begins.

I went to a sperm bank today too to save some swimmers in case the chemo makes me infertile. Word of advice to anyone doing such a thing, don't have your mother with you! So awkward. It's awkward enough being thrown into a room with a cup and a Playboy as it is. You don't need your mother sitting in the other room waiting.

The doctors also tell me that I have to drop my classes for this semester and I'm really bummed about that because I'm behind in school already. They say I'll be too sick to do anything. Anyways, that's update 1. Thanks for the support.

straight from Wikipedia

2008-01-11T13:10:00.000-08:00

"In the United States, about 8,000 to 9,000 diagnoses of testicular cancer are made each year. Over his lifetime, a man's risk of testicular cancer is roughly 1 in 250. It is most common among males aged 15-40 years, particularly those in their mid-twenties. Testicular cancer has one of the highest cure rates of all cancers: in excess of 90%; essentially 100% if it has not metastasized. "

"Even for the relatively few cases in which malignant cancer has spread widely, chemotherapy offers a cure rate of at least 85% today."

The First Update

2008-01-11T09:10:00.000-08:00

I am trying to pass along information regarding Sean so that Taffy doesn't have to take so many calls. Sean's cancer is stage 3-B or 4, and Taffy's beside herself. (It's in his lungs too, they're not sure about the brain yet.) Jeff is flying up tonight or tomorrow for a week so he can be with Sean during his first chemo treatments. Jeff has indicated he will shave his head to offer support to Sean, but I told Taffy to make sure Jeff's bosses are okay with that...

Taffy is seriously considering dropping out of school, which would mean dropping out for the year, since each term of school falls at a specific time of year. (It would also mean she might forget some of what she's learned by the time she gets back to it.) Jeff, Sean, Grandpa and Lowell all think that she should stay in school (each for various reasons), but I can understand Taffy's desire to be home more so she can help care for Sean.

Sean starts chemo Monday. Prayers, help for their family (occasional meals, etc.) might be a good idea. Anyway, I told Taffy I would notify family.

-Elaine

The Reason For This Blog

2008-01-11T09:00:00.003-08:00

This was set up to give family members updates on the status of Sean Martella.