Saturday, October 31, 2009

Superman

It's the end of Ron's fifth day and I am amazed and so, so proud. The radiation team calls him a rock star. This afternoon, he completed the last of 8 sessions of total body irradiation. We were warned that during the sessions, most patients become sick or dizzy, with some passing out and others having to take breaks during the session because they're too weak to stand still and upright. Not my Ron. He's blasted through each successive session, never taking a break.

"Commit and go." That's been one of our beliefs in life. Don't hesitate. One road may be harder than the other, but there's no gain in becoming paralyzed at the crossroad or agonizing over the hand you've been dealt. It isn't as critical as than the commitment. Ron is so committed to beating this cancer, I have every faith he'll triumph.

Here are some shots of my hero from the inside. This morning, he was on the computer and still smiling. His blood counts are steadily dropping as they should, but his appetite is strong, and everything has stayed down so far. He's even ambitiously scheduled a conference call for a new deal with American Express on Monday. If they only knew!



In order to avoid infections which could cause serious complications, anyone who enters the room needs to wear gloves and a mask. I miss smooching my Sweetie, but I have to admit that it does eliminate unflattering facial expressions.



The only time Ron is allowed to leave his double sealed door room during his stay is for radiation treatments. Traveling through the hospital hallway, they need to minimize any possible contact with foreign particles, germs, or viruses, so he's pretty much covered from head to toe. Outside the room, I get to take off my mask, but Ron has the upgraded facial protection.




This last shot is of Ron just before the radiation begins. He's standing in the contraption which keeps his body still during radiation. Metal plates cover his lungs to help minimize long-term organ damage. The rest of the room doesn't look any friendlier. It would be easy to become discouraged here, standing alone in silence as the effects of the radiation take a toll on his strength, but Ron's got his Springsteen blaring, his picture of our family taped to the wall in front of him, and he's committed.

I love you, Sweetie.


Wednesday, October 28, 2009

Day 3: Ron - 1 1/2, Cancer - 0

I cannot claim a full victory today as I did start to feel a little funny after the 4th round of radiation (2 today and 2 yesterday), but I am still standing and miraculously still eating their delicious hospital food. The radiation sessions last about an hour and so I have been working on the team down there to develop some better music for me. They were very apologetic the first day, as all they had was a Neil Diamond cd, but at my urgent request, someone brought in a U2 cd this morning. By tomorrow, I am expecting a full set of Springsteen cds, preferably early years (pre-Born to Run). I will create some excitement in that radiation ward if it is the last thing I do.

Ha spent much of the day by my side, which was really nice, and she brought in a series of wonderful family photographs that are now displayed all over the walls of my room. Reminders of some recent family trips to Switzerland and New York, as well as some great shots of us around our house... all great inspirations to finish up my work here and to get home as soon as possible.

Mai and Tal called me to say goodnight tonight. Mai filled me in on her day at school and Tal wanted to tell me all about his new Barney movie. Nothing out of the ordinary, but just beautiful things to hear.

I am half way through the radiation and so far I am tolerating it well. Days 3 and 4 get progressively worse, so I am cautiously optimistic. Thereafter, I begin 2 days of high dose chemo (Cytoxin, I believe) which will ultimately leave me curled up in a ball and awaiting my new stem cells, which should arrive by 11/2 or 11/3.

Please feel free to keep me updated on the outside world when you have a minute. Watching the sailboats on the Charles has been fun, but it is quickly losing it's novelty. Best wishes to you all.

Ron

Tuesday, October 27, 2009

Day 2: Ron-1, Cancer-0

I probably should not play this game and try to keep score after each day, as I am about to enter a period where I am going to have my butt kicked daily, but feeling like a winner today, I couldn't resist by announcing an early victory. Today was my first day of Total Body Irradiation, fondly referred to here as TBI. I will receive 2 doses each day for 4 days and I completed my first day today. The radiation can make you sick and so I was warned that 25% of patients get sick right in the radiation room, which seemed like decent odds, only to then learn that the other 75% of patients just get sick later in their room. I am happy to report that neither happened and I maintained a full appetite throughout the day, thus I feel like I emerged victorious from Round 1. I am a humble man though and realize I may have just been lucky today, so this may be the last you hear of my "victories"!

The care has been tremendous. All of the nurses have been extremely accommodating and they have made every effort to try and make our stay as manageable as possible. This floor is at full capacity and they work hard. Ha spent several hours with me today which was nice and I also received a couple of phone calls from Mai and Tal. It has also been great to hear from all of you whether through email or this blog, so many thanks for keeping me informed and in good spirits. -Ron

Monday, October 26, 2009

Checking in

It's a far cry from the Park Hyatt, but that didn't stop Ron from trying to finagle the best accommodations possible. He scored a river view room with an extra-large bathroom. What he lacks in square footage he gains in having one of two rooms on the floor with two sets of double closed doors to further keep out potential harms. More importantly, we have the best nurses and doctors assigned to his care.

Ron checked in around noon and went into a routine surgery to install a Hickman line (an intravenous catheter) in his chest. I sat in the room with Ron as the doctor described the process, which involves threading one end of a catheter through a large vein in your neck to a major vein just outside the right atrium of the heart. The other end is embedded under the skin, exiting through the chest. Ron didn't flinch. Just a few years ago, Ron won't even let me prick his finger to test his blood glucose, but now he's become so tough.

Because of the aggressiveness of Ron's disease, the doctors have prescribed the most rigorous and brutal regimen possible for his transplant. I have no doubt Ron will do everything within human power to come home as soon as possible.

Today has been a long day. Tomorrow, Ron starts the first session of his total body radiation at 6:30am. We'll try to write each day during the transplant to let you know how he's doing.

Your love is so powerful and really makes a difference.

H

Sunday, October 25, 2009

Transplant

Tomorrow is the day of admission for my allogeneic stem cell transplant. Ha and I have been in and out of meetings all week and I think we are ready. I will be admitted, assigned a room, and once the door closes, will be confined to this room for the duration of my stay. I'll have all of my modern necessities... a laptop, phone, TV, DVDs, books, magazines etc... but will have very limited access to visitors and most importantly, no access to Mai and Tal, as small children are not allowed to visit the bone marrow floor. Ha will be my designated visitor and I hope to be able to see her every day. She has been an incredible source of support to me and if I have not already told you this a hundred times in the past few weeks... thank you and I love you Ha.

The confirmed 4 - 5 week schedule is as follows:

Week 1: 7 days of prep prior to the transplant, which consists of 4 days of radiation and then 2 - 3 days of high dosage chemo. This will bring me to a state of no immunity to make room for my new immune system. Week 1 is generally tolerated well by most patients but I will be very tired, will have lots of pain (from the radiation) and most likely will be nauseous and uncomfortable.

Week 2: On 11/2 I will receive the transplant from my most generous, but anonymous donor, and will then wait for the stem cells to find their way to my bone marrow and begin to grow. Week 2 is one of the most vulnerable as my white blood cell counts will be zero and I will essentially have no immune system. There will most likely be mouth sores, stomach pain, infections and fevers daily. The doctors and nurses will be monitoring me constantly and countering any new issues with various drugs. My platelets will also be extremely low, meaning that my blood will not be able to clot. I will require a number of transfusions to counter the dangers of cuts, scrapes or bruises.

Week 3: The wait will continue as it takes approximately 2 weeks for stem cells to attach and begin to grow. More of the same pain and torture from week 2, but I will be more than half way through, so I will probably be smiling (even with my mouth sores!). At this point, I will most likely break down and tell Ha I cannot watch any more Seinfeld reruns, CNN, or anything with Anderson Cooper, although I predict I will still enjoy Conan O'Brien.

Week 4: If all goes well, my new immune system will start to form and stem cells will begin to grow. Blood counts will start to rise and I am told that I will probably notice an immediate difference in the way I feel. This is a very critical period for me, as positive progression will mean that the new cells have "taken" and that the transplant itself was a success. There are still a number of complications that can occur... "graft versus host" disease, serious infections, and even cancer relapse, but the first necessary step after the transplant is for the new cells to successfully begin growing, and rising blood counts are the first sign that this is happening.

Week 5: Again, if all has gone well, I will be discharged and sent home... battered, but relieved, and excited to connect with family, friends and most of all... Ha, Mai and Tal.

I am eternally thankful to my anonymous donor who has not only provided this opportunity, but has graciously adjusted his schedule on a last minute basis to accommodate my transplant within one week of notification. This was no easy matter as he is required to make 5 consecutive daily hospital visits prior to the transplant, receiving infusions in prep for his donation. There is a mandatory one year wait before a recipient and donor may mutually agree to make contact, and I look forward to personally thanking him next year. It is an incredibly generous gift that he has provided.

While I am in "lockdown", we will update this blog daily. I will try to write if I am feeling well enough, but if not, Ha will update for me. I would be lying if I stated I was not a bit nervous today. I understand the dangers and risk that lay ahead, but I also recognize the need for this, and all of the hope that comes with the process. Ha, Mai and Tal mean everything to me and this will be a small price to pay for many years of love, laughter and life. In that spirit, I am absolutely ready to move forward and attack this challenge with every ounce of energy I have. The support we have received from family, friends and community has provided much needed strength, and I am certain that strength will stay with me each day, and will help carry me through.

More to come from "the inside"...

Ron

Friday, October 16, 2009

Next Steps

This has been an incredibly eventful two weeks and my apologies for not posting for some time. As Ha has mentioned, we received the news yesterday that BCBS reversed their decision and we now have coverage for my stem cell transplant. We cannot thank everyone enough for their support, care and hard work to help make this happen. Help came from some very unexpected places and we are truly grateful to have such strong friends, family and community around us.

The past few days in particular have been an incredible roller coaster ride. Just a few days ago, I had no insurance coverage for my transplant, I was scheduled for 5 full days of chemo (to keep cancer under control while we fight for insurance) and my transplant was delayed to late November. Today, I have insurance coverage, my unnecessary chemo has been canceled, and I am scheduled to begin the transplant in 11 days!

Momentum is definitely with us.... I checked in to MGH on Wednesday morning, expecting to stay until next Monday. We received the news of insurance approval at around 12 noon, and immediately asked if we could delay the chemo and inquire to see if my donor was available for an earlier date. We learned within hours that he was, and so they scheduled a ct-scan to see if my body was ready for a transplant. The wait was agonizing. A positive response would mean I could proceed forward. A negative response would mean more chemo and a possibility that the chemo was not working and a transplant might never be possible. But by 7am yesterday morning, we received the good news... the cancer has continued to shrink, and I was ready for the transplant as soon as possible. I was told to go home, rest up and come back on 10/26 for the transplant to begin.

Additionally, yesterday, I received a personal phone call from Senator Kirk. Embarrassingly, our caller ID said "Capitol, US" and I assumed it was my credit card company! I picked up the phone and was stunned to hear the caller identify himself as Paul Kirk. The call was ill timed as I was with Mai and Tal and they happened to be engaged in a particularly serious fight over a cookie, but we managed to speak for a few minutes and he wished me well and expressed he was glad to have been able to help with my appeal. It is a call I will never forget.

There is a lot to do before I check back in on 10/26. I will be away from home for at least 5 weeks and so I intend to spend as much time as I can with Ha, Mai and Tal over the next 11 days. Ha will be my designated visitor and should be able to spend a good amount of time with me. It is not clear whether Mai and Tal will be able to visit while I am away, but if not, we plan to generously use Skype video phone and send lots of letters and gifts back and forth. I'll miss those guys terribly and Ha, Mai and Tal will be my inspiration to make it through and return home quickly.

Again, many thanks to everyone who has provided support over the past few weeks. Every email, call and visit has provided me with much needed strength and I am grateful to all of you. This experience has also made me appreciate what is most important in life, and these days I hug my kids a little tighter and hold Ha's hand a little longer. I hope you can all do the same with those who are most important to you. I'll keep updating as we hear more news.

Ron

Thursday, October 15, 2009

Approved!




Many of you have been helping us appeal Ron’s insurance denial. Thanks to your amazing support, connections, expertise, energy and advice, Blue Cross reversed their decision this morning! We feel absolutely that you made this happen for us. You are all enormously kind, generous, and so, so strong.

We have very grateful hearts tonight.

Much love,
Ron, Ha, Mai and Tal

Saturday, October 10, 2009

Do you have Blue Cross Blue Shield of MA?

If so, don't contract a rare disease.

Tuesday, we learned that Blue Cross Blue Shield of Massachusetts (BCBS) denied our appeal to cover Ron's stem cell transplant. The reason cited was that the treatment was experimental for Ron's disease in that there was a lack of controlled clinical studies to prove its long-term efficacy. Ron's disease in humans is so rare that it will never have a controlled study. Most histiocytic sarcoma patients are found late stage and cannot qualify for a stem cell transplant. There is just one man in Maryland that shares Ron's disease and was eligible for transplant. His insurer, CIGNA, covered his procedure and he is still alive over one year post-transplant. If BCBS continues to uphold its denial, it is tantamount to saying that there will never be coverage for rare conditions--ever--because any treatment will always be unproven by their criteria.

Since this represents our second denial, MGH informed us they had exhausted their efforts and could no longer help us, but that we had the right to submit yet another appeal to BCBS as consumers. Of course, as consumers, we knew absolutely nothing about the process! If our hospital and doctors had failed to plead our case, what could we do to compel BCBS to overturn their denial? This week has been a crash course in patient rights and advocacy.

For now, Ron's transplant has been delayed because of the insurance hurdle. We only have a small window of opportunity to act while Ron is in remission from this aggressive disease, and at the end of that window, we're checking him in. We feel encouraged by what we've learned this week, thanks in no small part to everyone who has so generously offered advice, experience, and counsel. It is our very strong conviction that BCBS should responsibly, legally, and ethically cover Ron's treatment, and we will do everything within our means to make sure the company agrees.