Saturday, September 26, 2009

Thank you

Ron and I always wanted to raise our kids in an abundance of love, and when this cancer came into our lives, I was terrified that that love would be diminished for them. But things come in unexpected ways, and since the relapse, we have been so grateful and teary for the absolute abundance of love from all of you. From the kindness that you've extended to Mai and Tal--the playdates, special outings, and carpools--to the Concord meal train that has been coming to our house, to the kind words and prayers that arrive by all manner of ways, we feel your support. How generous and lovely you are. We have no doubt our kids will know an abundance of love. We love you all.

H

Home Again

I was released for good behavior last night and arrived home at about 7pm. The week at MGH progressed quickly and despite some minor aches and pains, I am feeling so much better than the last cycle. I have been eating well but still not gaining back any weight. I have lost about 15 pounds since surgery/chemo, but some may argue I should have lost these 15 pounds several years ago, so all in all, I am probably fine at my current weight. I continue with numerous medications to take the edge off of potential nausea and pain, and I am also required to take two shots per day. Ha and I switch off on this task and we have yet to figure out who dislikes doing it more!

Provided I continue to feel well, my biggest physical battle over the next few weeks will be fighting fatigue, so I can try to get back in shape in preparation for my stem cell transplant. The chemo makes you very tired, but I'll need to push myself and exercise as much as possible to build strength and endurance. From what I have learned, my body is about to be subjected to a biological tsunami and I'll need every ounce of energy I can obtain to make it through. My doctors have been very encouraged by the progress they have seen with my chemo, so pending insurance approval, they are still planning for my admittance around October 19. I will learn more in the coming weeks.

Support from friends and family continues to give us strength, and Ha and I are all so grateful for the emails, calls, well wishes and good food from so many. By the way, if you are experiencing difficulty posting a reply on the blog, we have learned it may have something to do with the way you log in. If you have tried unsuccessfully, please try to post your message and then select "anonymous" (as opposed to your login name) and this should work. Don't forget to sign your note though so we know who you are!

It is great to be home and I'll provide further updates as we receive them.

Ron

Wednesday, September 23, 2009

Round 2, Day 3

Not much to report here, which is probably the best news I could provide. Monday check in was a little slow, but the chemo started at about 7pm. I receive 4 doses of chemo, each lasting 24 hours, so I am just about to complete my 2nd dose. Compared to Round 1 a few weeks ago, the 3 days have really flown by, so no complaints and I am hoping for 2 more very quick days. Depending on how soon the last dose finishes up on Friday, I may even get to head home Friday night as opposed to Saturday morning, which would be a nice bonus.

I have been feeling well. No terrible side effects and food, while not very tasty, has been tolerated well. I really cannot complain based upon stories I have heard from others. They have set me up in a nice room on the western side of the building, complete with a stunning view of the Charles River, the Cambridge skyline and beautiful sunsets. Sleep has been a different story... I have a very active roommate and he has had multiple (loud) doctor visits each night, so I have been sleeping on his schedule and getting 2 - 3 hour catnaps throughout the night. As long as they keep visiting him and not me, I can at least be thankful that I am being left alone. It is never a good sign when a team of interns and nurses walk in and say "Mr. Richmond?"... you know it is not going to be a pleasure visit. It usually means tests and shots etc.... so being left alone, but woken every few hours is just fine with me.

So, no news is good news, and that is all I have for you today. Signing off with a big smile and looking forward to escaping to the comforts of my home in a few days, and hopefully seeing many of you.

Ron

Sunday, September 20, 2009

Weekend Update

It has been a very nice few days as the weather has been perfect and I have finally been feeling well enough to get around. Ha and I were able to get out for a "date night" and saw a movie Friday night. Such a simple pleasure, but really nice. Saturday morning, we brought Mai to her first soccer practice. Donned in full soccer gear, she ran around with 35 other four year olds and had a ball running drills, practicing her kicks and of course (the highlight) eating popsicles on the sidelines. It was really a lot of fun seeing her in action.

Yesterday afternoon we visited with some friends in Concord and then went to a family party for Rosh Hashana, ate way too much food and had a very nice time. I have really had to take things day by day this week, not able to plan anything until I understood how I was going to feel each day. The meds have been helpful and so Friday and Saturday were great days and we made the absolute best of them.

We have had some brief conversations with our doctors this week. Both the ct scan and the ultra sound last week were clear... everything looked "unremarkable" which in doctor-speak means "good". This was great news which confirms no cancer progression anywhere. I had a 3 hour "Radiology Consult" which was a humbling experience. Evidently, part of the 8 day prep process leading into the transplant involves "full body irradiation" which means 4 days (2x per day) of full body radiation. It sounds horrific (in a science fiction kind of way) and after hearing all about it.... it actually is. Coupled with chemo, this will fully rid my body of my current immune system. They provided a long laundry list of short term side effects, long term side effects and possible long term risks. Not pretty, but at this point absolutely necessary, so all we can do is listen, absorb and move on. My approach has been "one step at a time" and right now, I am committed to getting through all of this, and making it through to the other side of the transplant. This radiation will help me get there.

Tomorrow I head back to MGH for another 5 day stay. 4 days of chemo and then I will be back home on Saturday for 2 weeks. While the 5 day stay is never fun, knowing that the chemo is working, allows me to feel better about the process. The food could be a little tastier, but I am not complaining! I am sure someone can sneak me in something edible from the outside world. :)

Mai continues to keep me on a tight exercise schedule and at one point during the week we ran laps together around the town tennis courts. At 4 3/4 years old, she can officially outrun her old man (on chemo), but once I get back in shape, I promised her I was going to give her some competition! Tal continues to be the house comedian, always quick with a line or a new gesture to make everyone laugh. As his vocabulary grows, he continues to amaze us with his quick wit. 2 years old and he already knows how to work a crowd. I love those guys.

Thanks again for everyone's continued support. We gain strength from all of your thoughts and care. L'Shana Tova and a happy weekend to all.

Ron

Tuesday, September 15, 2009

Note for My Dad

Mai has been devoted to helping her Dad get better. To remind him of good foods and approved activities, she wrote the following:

Approaching normal

Things have been relatively quiet over the past couple of days. No further news back on the scans from last week, so for now, we assume no news is good news. My pain is finally starting to diminish. They prescribed a drug (yes another drug for me) called Prilosec which seems to be really helping, and so yesterday I stopped walking like a primate (bent over) and began proudly walking fully upright again, like a homo sapien.

We heard back from the stem cell team at MGH. Due to the good results of the current chemo, they are starting to lay out plans for my transplant and have assigned a tentative date of 10/19 for hospital admittance with the actual transplant starting on 10/27. These dates may change, but for now it appears they want to get us into their schedule. There is a one week prep needed prior to transplant where they break down my immune system via a combination of intense chemo and radiation (and if that does not work, they force me to watch "High School Musical" over and over until every white blood cell has left my body). Then on Day 8, they conduct the transplant, a relatively uneventful 3 hour event. Thereafter, it takes about 2 - 3 weeks for the stem cells to attach to my bone marrow and if all goes well, I leave the hospital about 5 - 6 weeks after I was originally admitted (so in my case this would be early December).

We brought Mai and Tal in for Tal's first day of pre-school today. Tal was very excited and we had previously been asking him if "he was ready". In the car he remembered this, so he kept chanting "I ready, I ready" with his big smile. At school, he blended right in and within the first 15 minutes, he was playing with a train set, using their toy tools and pooping in his diaper... we have few worries about him feeling right at home there. Mai was a very good big sister and wanted to show Tal around, and we heard that she "checked in on him" a couple of times during their day. It was really nice to see them both settling in and enjoying the playtime and the school. We want nothing more than a happy, stable environment for them this year, as things are going to soon be turned upside down in our household as I move forward with my next couple of rounds.

Ha continues to amaze me with her ability to juggle 10 different activities at a time, never missing a beat, while still maintaining a positive attitude. Conveniently, we both seem to hit our low points at different times, so we feed off of each other well and tend to bring each other back easily, whether it is with a simple kiss, a reassurance or just an extended hand. I would not recommend this situation for any marriage, but while Ha and I have always been close, this sudden turn in our lives has brought us even closer... something we both need and are thankful for. When in pain, there is nothing better than having your true love next to you.

More news when we have it...

Ron

Saturday, September 12, 2009

Progress

Yesterday was quite a roller coaster ride. Due to my continued stomach pain, I slept just a few hours on Thursday night and by Friday morning the pain was even more intense. I contacted Effi (my doctor) and he confirmed this is probably not a side effect of the chemo and asked that we come in for a ct-scan asap. This justifiably worried us as it meant that he was considering the possibility that despite the chemo, the cancer cells were continuing to grow and were the cause of the pain. Additionally, via blood tests earlier in the week, they determined there might be some complications with my liver. None of this was good news. As the day progressed, my pain continued to get worse. I had a ct-scan at about 4pm and Effi was paged to view the results immediately. The waiting was agonizing as we were fearing the worst. At 6pm, we received the call and to our surprise, Effi announced "good news". Not only have the cancer cells not grown, but most of the cancer that was found just 2 weeks ago was completely gone! For a disease that is usually not chemo sensitive and there is no proven source of treatment, this was stunning news. For now, it appears that the EPOCH chemo was the correct choice of treatment and is working after just one cycle. A heartfelt thank you to Effi Hochberg!

Ha and I are almost completely overwhelmed by these highs and lows. Yesterday was a true test, but it turned out to be a really positive day, and we'll take it. With the cancer shrinking and a potential donor in place, we are feeling pretty lucky. Unfortunately, the stomach pain continues and they are not sure what is causing it, so we'll need to address separately, but for now it does not seem to be disease related. I plan to rest up over the weekend and eat as much as possible (I have lost about 15 pounds!). Looking forward to better days ahead...

Friday, September 11, 2009

Donor match

We received the good news yesterday that they have found an exact match for me through the national bone marrow donor registry... a 10 out of 10! They had originally screened the entire database for donors with a 6 out of 10 marker match and found 4 potentials. Typically, once you have a match on the initial 6 markers, there is a strong likelihood that you will have a full match for all 10 markers. I have read about people who had found hundreds of potential matches though, so my initial 4 seemed like a pretty small pool, but as my doctor stated early on, 4 is better than none, and as it turned out, that was all we needed. So, with a donor in place, the next major hurdle is getting me into remission, which may (or may not) be easy. Histiocytic sarcoma is aggressive and generally chemo-resistant, but others have had success, so we are hopeful that we can get there.

Unfortunately, the past few days have been filled with more pain. I am experiencing a side-effect that has caused a burning pain in my stomach and back, and it is not currently clear what is causing this. It is excruciating at times and has also made it very difficult to sleep. Ha has been taking care of me 'round the clock, and not that we are keeping score, but it is very clear that when I am feeling better, I am going to owe her just about anything her little heart desires. Mai has also been incredibly sweet, bringing glases of water to me, sitting with me holding my hand, and drawing lots of art to hang on my bedroom wall. Tal has been helpful in that he always has a big smile for me, whether he is behaving well, or up to no good. The past few nights, he has been getting up in the middle of the night, dragging his blanket down the hall and climbing into bed with us, which has been irresistible these days.

The recovery is going much slower than I anticipated, but it is nice to hear from all of you and hopefully I will be on the mend in the coming days.

Ron

Tuesday, September 8, 2009

Side effects

My apologies if my response time has slowed over the past few days, but the side effects of the chemo have gotten the best of me. It has been nice to be home, but I have been experiencing much pain and discomfort and so I have been trying to focus on resolution so I can quickly get back to normal. Saturday night, Ha (my new nurse) gave me a shot that is supposed to counter the effects of low blood counts, and the doctors warned me that it might cause some pain in the subsequent days. You learn quickly that when the doctors actually tell you there may be pain, it is best to move directly into the fetal position and prepare for the worst. This shot apparently pulls bone marrow from your bones (not sure if I understand this fully) and therefore causes significant bone pain. They were right and it hurts. Additionally, the chemo has had a strong negative effect on my stomach and so they have placed me on a BRAT diet (bananas, rice etc...) which only adds to my happiness. So, no more delicious food for a few days until everything settles. Our house is filled with homemade brownies, cookies etc... so a simple act like walking through the kitchen has created a new challenge.

The weather has been beautiful though and it has been nice sitting out in the backyard with Ha, Mai and Tal. We sent Mai off to her first day back at school today and Tal starts his pre-school program next Tuesday. We rented and watched the Wizard of Oz over the weekend and Mai loved it but announced she did not want to watch it again until she was at least five (too scary). Tal simply stated "no like". I think we'll stick to Tom & Jerry and Elmo for the immediate future. Speak to you all soon.

Ron

Sunday, September 6, 2009

Everthing shines

... more brightly with Ron home.

H

Home Sweet Home

I arrived home yesterday to an army of kids and dogs, and spent a blissful day doing absolutely nothing but sitting out in our backyard, playing with Ha and the kids, blowing bubbles and eating lots of good food. I do not have too much to report regarding my hospital stay. For 5 days, I felt like a cross between a pin cushion, a scientific experiment and just simply a guy laying in pain, but as expressed... all a minor inconvenience if I can look back on this and understand it was all part of my cure. To take off the edge, my days were filled with lots of CNN, Marx Brothers movies and family visits, and I can proudly say, I am now fully versed on the Jaycee Dugard case, Obama's health plan and the California wildfires.

I am not one who embraces drugs, and in my adult years (sans college!), I barely take an aspirin unless really needed, but I have lost track of the amount of drugs I have been given in just the last 5 days alone. I tried to keep track of everything during the first day or two, but after receiving multiple drugs to counter the effects of the chemo, and then more drugs to counter the effects of those drugs, I just gave up and let the doctors do their thing. It is such an unusual situation to feel badly from my treatment and not from my disease, but that is exactly what I have experienced.

I stayed on the floor where they conduct extended chemo regimens as well all Bone Marrow Transplants, so I had an opportunity to speak with a number of patients at different stages of their treatment. I had rotating roommates throughout my stay and 2 of my 3 roommates were in their early 20s with extensive disease. It was humbling to understand that while I feel quite young to be exposed to and to experience this type of life challenge, there are many others who are younger and are faced with even greater challenges.

I am home for 2 weeks and then will be returning to MGH for another 5 day stay on 9/21. I am experiencing some side effects from the chemo... mostly body aches, stomach pains etc... but my appetite is strong (that will never go away) and I am really looking forward to getting back to semi-normal for a couple of weeks. Thanks again for all of your emails, calls, delicious food and warm support. You guys are all giving us strength.

Ron

Friday, September 4, 2009

Just twelve more hours

Ron is scheduled to come home tomorrow morning and we all can't wait.

It was a hard week, but it went by quickly. Before the start of his chemotherapy on Monday, the doctors took a scan of Ron's abdomen so they could measure the efficacy of the treatments he was about to receive. Tuesday we saw the results, which showed that the remaining mass had grown in the few weeks since his debulking operation on August 13th. Dr. Hochberg described the rate of growth as aggressive, but noted that he had seen even more rapid growth. Ron will return to MGH for a second cycle of chemo in 10-14 days, and then we'll look at another scan to measure progress. We hope the chemo will do its job and shrink the tumors at least 50% to make possible the stem cell transplant.

Ron continues to be my hero, enduring the constant needles, endless cocktails of intravenous drugs, uncomfortable side effects, and institutional baked meat dinners in the shape of a hockey puck. He sets our bar for courage, compassion, and spirit.

H

Tuesday, September 1, 2009

Finding Chemo

I checked in to Mass General yesterday morning expecting a quick ct-scan and then the start of my chemo. Things moved slowly though and after check in, a little introduction by the nurses and the installation of my pic line (for my IV), it was already about 4pm and still no scan or start of chemo. The scan finally happened at 6pm and my chemo did not start until midnight. If you have ever been woken up at midnight by 2 strangers explaining "your chemo is about to begin", you will fully understand... it was not a fun night.

I am receiving EPOCH which is a combination of 4 drugs via IV, plus a steroid taken as a pill. The plan is to receive a 96 hour constant drip, as there is active cancer currently growing in my body. Because doctors do not know if cancer cells grow with greater speed when you sleep or when you are awake, the plan is to provide a constant drip to cover all cycles. This seems to make sense to me, and if it works, the two 5 day hospital stays, while uncomfortable, will just be viewed as minor inconveniences. Although someone commented to me that I should have requested the chemo be provided in a suite at the Ritz Carlton, as it would probably be cheaper than the hospital stay and would save my insurance company some money.

Ha has been a tireless supporter, visiting me daily, sharing "romantic" dinners with me bedside, and making sure that every nurse on this floor knows exactly who I am and what I mean to her. She has been my rock. Mai packed a yoyo in my care package today so I can practice and play with her when I get home. Along with bike riding and piano playing, yoyo-ing has emerged as a new passion for her and she is quite competitive. Tal has discovered the joys of Mickey and Minnie, and when I called to wish them goodnight last night, he was "too busy" watching his movie, so perhaps I will have better luck tonight.

So the fight goes on, and while I occasionally do have very low points, I am thankful for the care I am receiving at Mass General (a great hospital), and the strong support I am receiving from family and friends. Thanks to you all. -Ron