Friday, August 28, 2009

Appreciation

After a couple of quiet days at home, yesterday was full of activity. As Ha mentioned, we heard from Dr. Chen, the transplant specialist at Mass General, and learned that none of my three siblings were a match. However, they have found 4 potential good donor matches through the national database, and have reached out to them for further testing. It was explained to us that success rates from a non-sibling donor match are nearly as good as a sibling match, but the primary challenge is that with non-siblings, you need to have greater flexibility to accommodate their schedules, and sometimes, they are not as committed to following through as a sibling may be. It was a huge relief to learn that 3 of the 4 donors had replied back within a matter of days to agree to further testing.

Lately, I have found that any bad news (or potential bad news) just makes me numb, but I find that the good news, or the acts of kindness that we are experiencing, bring about the most emotion. I have tried to live a mostly self-sufficient life, but I find myself in this situation with no choice but to accept help and support from everyone and anyone. It is sometimes an uncomfortable position for me to find myself in, but ironically, I also feel an overwhelming sense of appreciation for the kindness and generosity of others. If we are able to find an anonymous match, I wonder if the donor truly understands how much they are giving. The stakes are so high.

Today we have an appointment with a specialist at Dana Farber who will be reviewing our case and providing a second opinion. He has some experience with Histiocytic Sarcoma, and we met with him last year as well. My guess is that he will agree with our current plan, but it should be a worthwhile visit to learn if he has any different ideas to present.

I am feeing better today and eating everything in sight so I should be in pretty good shape for round 2 at MGH on Monday. Yesterday, I walked with Mai while she took "the longest bike ride ever", so I feel like I am making some progress on the exercise front. Tal (with training wheels) followed behind with Ha's Dad, pedaling as fast he could, determined to catch up. Looking forward to more of the same this weekend.

Ron

Thursday, August 27, 2009

Grace

Today was a harder day, physically and emotionally. Abdominal pains kept Ron's activity low, but he was able to get out for a short walk alongside Mai on her bike.

We received two pieces of important news from the transplant center. The first was that none of Ron's three siblings were a match for him. This was a blow, but our doctor assured us that well-matched non-related donors have nearly the same success rate. The second was that there were four potentially positive matches found through the national donor database. We would not know the names of these donors, where they are located, or whether their contact information is even up to date (donors stay in the database for up to 10 years). Our doctors would have no contact with these potential donors, and contact could only be made through the database. We were told earlier that a great advantage of a sibling match would be accessibility; that Steve or Angel or Billy would show up when needed, knowing exactly what's at stake.

What would an unrelated, nameless donor do? Would they come in promptly to be confirmed as matches? Would they be on vacation? Would they decide they can no longer fulfill the commitment? Would they understand how desperately our family needs Ron? We called back the transplant center to pepper the donor coordinator with these questions and she graciously looked into the computer to tell us that yes, three of the four donors already scheduled appointments to be confirmed. Ron and I both burst into tears.

We've lived with this discovery of Ron's relapse and what it might mean for our family for almost three weeks now. We've shed a lot of tears. The fear and sadness doesn't hurt us like it used to. Instead, it's the incomprehensible grace and generosity that moves us beyond words. What I wouldn't give to thank these strangers myself. Thank you, thank you, thank you, for this precious chance to keep our family well.

Tuesday, August 25, 2009

Eating

Food has never tasted so good.  I had the staples removed from my incision yesterday by my very capable surgical oncologist, Cristina Ferrone, and she expressed that everything was healing well and gave me the go ahead to gradually start working all foods back into my diet.  Ha's Mom has been cooking up a storm and food has never tasted better.  I have lost 7 pounds since my surgery, so they have advised that I try to be careful, but to eat as much as possible, so I can try and gain back some weight prior to my next round of treatments.

I was feeling much better today so we took Mai and Tal to Whites Pond for a swim, and then headed to the Food Project to do our weekly pick-up of organic veggies in Lincoln.  We were able to pick our own raspberries and cherry tomatoes and as usual, ate more than we picked.  Tal alone probably ate about 20 tomatoes and had seeds dripping down his shirt as we left, which was pretty incriminating.

I am still taking percocet but trying to slow down the dosages.  It has been 12 days since my surgery and I am amazed at how long this recovery has taken.  One step at a time I suppose as I need to head back to MGH on Monday for 5 days of chemo.  Yesterday, I discovered a new Histiocytic Sarcoma case in Florida.  In June, a 28 year old soccer coach was admitted to a hospital with terrible stomach pains and after a few weeks of tests diagnosed him with HS.  I believe his disease was found in an advanced stage and I have sent him an email and hope to speak with him in the coming days.  As far as I can tell, there are now 3 other ongoing cases in the US (besides my own case), and most likely there are others that are just not documented.

Off to eat some more food....

Monday, August 24, 2009

Sunday

Sunday was a very nice day. Alan, Stacie, Tedi and Jamie visited in the early afternoon and Steve, Julie, Ben & Jordan visited later in the day. Julie had just picked up Jordan from camp on Saturday. Steve had just picked up Ben from camp earlier in the day Sunday, and they are now all driving up to Bowdoin today to see Ben off to his first year of college, so it was one of the only opportunities to see all four of them together for a while. Lots of funny stories from the summer and it was a reminder of what a great time of life it is for both of them. They have grown into smart, funny, and confident young men.

It was also great to see Jamie and Tedi, as they have really grown. They spent most of the visit entertaining Mai and Tal, and we are already negotiating rates with Stacie for future babysitting. A highlight of the day was receiving a card from Alan signed by Peter Wolf (of the J Geils Band). Peter Wolf is one of Alan's clients, and Alan secured a "well wishes" card from Peter himself. I am convinced Alan told him I was a 9-year-old boy in the hospital to prompt him to write the card. It was a really nice gesture; Alan, you are a good friend. If anyone is interested in "one-upping" Alan, a card from Bruce Springsteen or James Taylor would really make me feel great!

I am just starting to re-enter the world of eating. I have been surprised at how long it has taken for me to get back to regular eating, but after a week of applesauce, bananas and soup, I am glad to be slowly working regular food back into my diet. Mai and Tal have been a big help with my recovery. Tal makes me laugh with his little tricks and performances, and Mai has become my new nurse. As part of our daily routine, she takes me for "walks" around the house, encouraging me to exercise my way back to health. She is extremely caring and devoted. As we near the end of our walks, we always end up in the kitchen where she sits down and directs me to continue doing laps around our island while she takes a break. A chip off the old block I suppose, so I don't say a word and just keep walkin'.

Ron

Saturday, August 22, 2009

Unnecessary lengths

Had I known Ron would go so far as to get cancer just to leverage a TV in the bedroom, I'd have given in earlier.

H

Slow recovery

My apologies as I have been out of commission for the past couple of days. My recovery seemed to be going well and I think the excitement and relief of leaving the hospital gave me a temporary, and much needed, boost. However, the past two days have been filled with really bad stomach pains (gastritis) and so I have been resigned to upping my pain meds and taking tons of Tums. I must admit, after seeing more than 1,000+ television commercials for Tums in my lifetime and never once trying one, I have a new-found respect for those little pills. They have helped eliminate pain that rivaled anything I experienced in the hospital. Today, I am starting to feel better and am hopefully back on the road to recovery.

Ha's parents have stayed with us this week and have been tirelessly watching Mai and Tal 'round the clock. Their help has been invaluable... cooking, cleaning, babysitting, doing whatever is needed. My Mom came by on Thursday with a big sour cream/apple cake that is not lasting long, and my office sent a huge bouquet from Edible Arrangements with all types of chocolate-covered fruit... we are not lacking food here at home. Ha continues with our room reorganization project and moved Tal's crib back into what will soon be a spectacular "kids suite" in our back family room. Mai and Tal will be living in more luxurious accommodations than Mama and Dada, but I suppose they will let us visit from time to time. Also, I finally got my big TV in the bedroom. This has been a long standing battle between me and Ha. She feared a lifetime of waking to CNN blaring at 3am, and I just wanted a big TV with a "sleep" mode to allow me to catch a little news or a movie in bed. Well, Ha finally gave in and delivered a TV on Thursday and I am trying to maintain restraint in regards to late night trash TV. I have not broken it to her yet, but one of my ulterior motives is to be able to watch Three Stooges CDs in bed with the kids on the weekend (every Mom's worst nightmare)! But one step at a time....

As far as medical stuff... Effi got back to us with a schedule for the next steps. I will be recuperating at home until Sunday 8/30 and then on Monday 8/31, I will head back to Mass General for a five-day stay to receive EPOCH chemo which is primarily used for patients with Hodgkins disease that experience relapse. EPOCH was also used with my friend in Maryland, Mark Lightfoot, who is one of the only other Histiocytic Sarcoma patients currently being treated in the US, and he has had good results. Mark has been both an inspiration and a good friend to me. After being diagnosed with Histiocytic Sarcoma in May 08, Mark received a stem cell transplant in October 08 and is now well and back at work.

That is all for now. Thank you for your continued well wishes. More to come.

Ron

Wednesday, August 19, 2009

Back home

I wanted to get a quick note out here to thank everyone for what has been truly overwhelming support. I arrived home from Mass General yesterday and was so relieved to leave the hospital behind me. Two or three days flat on your back is fine, but after six days, I was really anxious to get home to my own bed, and to be surrounded by Ha, Mai, Tal (and three frantic, but devoted dogs, of course).

The hospital stay was quite an adventure. Yes, some of the nurses had a much clearer understanding than others, of how important it is to keep the catheter tube perfectly still! And, after a nice, quiet roommate who had gastric bypass surgery, my second roommate was the victim of a multiple stabbing. While a very nice guy, he also required special security as the attackers were still at large. I do not think I ever fully slept with both eyes closed at night, fearing a late night mix up in a very dark room! Friends offered to create a sign for me with a big arrow pointing to the other bed, but despite the lack of a sign, I survived my stay. Thank you to everyone who was able to visit, email or call... it is hard to explain this situation I am in, but without question, it is incredibly helpful to connect with all of you, and your support and positive thoughts are invaluable.

I will write more in the coming days, but just wanted to let you all know I am fine (although in some pain), in good spirits, and ready to take on the next set of challenges. We have a long road ahead of us, but as this blog states, "life is good" and I fully intend to do everything and anything I can to beat this disease.

Many thanks to everyone, with a special thank you to my Sweetie Ha, who has worked tirelessly to keep my spirits high, my pain low, and has been such strong support at a time when I need it most. You are my true love. And, in lieu of gifts or flowers, please consider taking Mai and Tal out for an ice cream or a bike ride. That would truly make me smile. More to come,

Ron

Parole

Ron came home yesterday, paroled from the hospital for two weeks. He's moving slowly, but still smiles easily and looks great to me. It's a lovely peace to have our little family under the same roof again.

This is a short movie the kids made for Ron while he was in the hospital. Mai and I have been talking about how Dada is always in her heart, no matter where he is, and Tal--not quite grasping the subject--proudly proclaimed that Dada is "in my tummy!"

video

Thank you, all, for your love and support. It makes such a difference.

Saturday, August 15, 2009

Day 1, post-surgery

"Pain. Lots of drugs. Great day with my sweetie. Nurse keeps flicking my catheter."
--Ron

My man of few words is on heavy narcotics. Today was spent quietly, getting stronger. Our very capable and kind oncologist, Dr. Hochberg ("Effi"), came to visit and outlined our plan for the weeks and months ahead:

  • 4 days in the hospital, recovering from surgery
  • 10-day recovery at home
  • 5 days of chemo in the hospital
  • 10-14 days of recovery at home
  • 5 days of chemo in the hospital
  • 10-day recovery at home
  • Scan to confirm whether disease is at a level to survive a stem cell transplant
  • Begin stem cell transplant

Ron's siblings each gave blood to determine whether they might be a donor match. Angel, Steve, Billy, we're enormously grateful.

The kids had a great morning in Concord with Nana. They each pushed their own mini shopping carts at Crosby's, no doubt blocking aisles and impeding traffic. Mai went to the library with friends for a special showing of "Hotel for Dogs," which I'm sure we will continue to hear about for days. And this evening, Ong Ngoai and Ba Ngoai arrived from Colorado to lend their help and support for the coming month. We couldn't do it without them.

Hope you all enjoy a wonderful weekend.

Friday, August 14, 2009

Road to wellness


Yesterday morning, Ron returned to Mass General Hospital to begin his road to wellness. The biopsy results confirmed that the mass found around his colon and small intestine was a recurrence of the histiocytic sarcoma diagnosed almost exactly a year ago today. In open surgery, Dr. Ferrone removed as much of the mass as possible, but it was not possible to remove the last 20% attached to arteries in the remaining part of the small intestine. Removing more of the intestine would make it impossible for Ron to digest solid foods.

Ron came out of surgery yesterday evening and is currently recovering in a double room alongside a roommate with a fondness for Jeopardy. His bed is by the window with abundant natural light. I'll join him again today and stay until they kick me out.

Sitting for hours at the hospital watching people come and go—new mothers, elderly friends, entire families sitting in vigil—made me so keenly aware of how important relationships are. Even in difficult times, it's love that we feel. The laughter is love; the fear is love; the pain is love. Your love will keep us strong.