Saturday, November 28, 2009

Day +25

Ha and I traveled back to Mass General yesterday and after checking my blood, assessing the progression of my rash and then ultimately conducting a skin biopsy, they confirmed I have developed graft vs. host disease. It was further explained to us that GVHD typically starts in your skin (mild), can then progress to your digestive track (medium) and can then spread to organs (severe). As previously expressed, most patients develop GVHD (which is a good sign that the transplant is working). The theory is that if the new grafts are fighting against your body, they are also fighting against any cancer that remains in your body. The challenge for the doctors is to be able to recognize the GVHD, briefly celebrate(!), and then tackle the disease and try to tame it so it does not progress to the medium or severe stage.

The drug of choice for now is a steroid called prednisone, and while it carries it's own dangers, it is usually effective at taming GVHD. I started this treatment yesterday and will most likely continue for the next 10-14 days. Prednisone is a powerful drug and can provoke sleeplessness, incredible hunger, aggressiveness and mood swings. I hope I can avoid sudden urges to wear white tank tops and devour large amounts of meat at 3am.

Ha continues to act in superhuman ways.... in our household of six, 3 are sick, 1 just completed a stem cell transplant, and she and our 4 year old Mai are the only members that are at full strength. I do not know how she does it, but along with help from her parents (who are both sick) she has managed to keep it all together, cleaning, cooking, laundering, serving, chauffeuring and acting as all around team support. She is amazing and don't let her try to convince you otherwise.

A safe and happy weekend to you all.

Ron

Thursday, November 26, 2009

Day + 23

I arrived home on Sunday and while it has been absolutely great to be home, we still have some lingering colds in the house and I have also had some unexpected symptoms so it has been a relatively difficult week. We have done a pretty good job of sequestering me in our bedroom, which is a very comfortable place to be, however I have had terrible headaches and have started to develop a series of skin rashes which they believe may be the onset of graft vs. host disease. Graft vs. host is a funny thing... it is good to develop a mild case as it is evidence that the stem cells are doing their job and fighting against their new body. The problem is that you just want a little, not a lot. If GVH becomes severe, it can create a number of serious complications that create much discomfort and can possibly become life threatening. Most transplant patients develop some GVH, the key is to keep it under control.

Since leaving the hospital last Thursday, we have been back for appointments on Sunday, Monday, Wednesday, and now I have just been informed I'll need to return tomorrow so they can monitor my latest progression. 4 visits within the first week was not what we expected, but if I am developing GVH, the constant watch is going to be important. The rash started rather quietly on my nose and cheeks a few days ago, but just today it has spread and it is now covering a good portion of my neck, shoulders, stomach and back.

On the plus side, before it started to spread today, Ha prepared a delicious Thanksgiving dinner and I enjoyed a fantastic meal at home with my Sweetie. Our short term goal upon entering the hospital on 10/26 was to get me home by Thanksgiving, and we did it!

So we are moving forward day by day on our little roller coaster ride and looking forward to tackling each battle with equal commitment. My continued appreciation for all of the support and love you have provided to me, Ha, Mai and Tal. Happy Thanksgiving to all...

Ron

Sunday, November 22, 2009

Bumpy

Ron caught a low-grade infection sometime in the past few days since his release from the hospital. His temperature spiked to 100.3 (100.5 is considered an official fever for transplant patients), and he's had persistent headaches since yesterday morning. Today he experienced a good amount of vomiting--the first since this transplant process began. The doctor on call suggested we go back to MGH this morning, which we did. They did some blood work--counts are normal--and took some cultures to rule out the flu. We should have results from the cultures tomorrow morning, but the doctor thought it was unlikely that Ron had the flu because he would be feeling much worse. Ron looked incredulous and I could see him thinking, "worse?!"

Ron has been such an atypical transplant patient. He sailed through the actual chemo, radiation, and transplant, but is now hitting his lowest physical days. Pre-transplant, he very rarely had headaches and has only vomited a handful of times in his entire life (a fact he takes pride in given his colorful college days), so these side effects feel unusual. That said, this could be a sign that the donor's immune system is successfully taking over Ron's body. If the donor has allergies, Ron will have those allergies; if the donor gets migraines, Ron will get migraines. If the donor vomits as a typical response to disagreeable things in the body, so too will Ron. Honestly, all we care about is whether the donor's immune system can keep Ron's cancer from coming back; we'd be so grateful to take the migraines over the histiocytic sarcoma any day.

We still have some low-grade colds lingering in our household, but we have decided it would be best to bring Ron home. He and I are quarantined in our bedroom and our kids are quarantined in the back of the house with my parents. One adult ferries supplies to and from the kitchen, and we're maniacal about hand washing and keeping food and utensils separate. As far as exposure, Ron is only exposed to me--the same situation that he would be in at the Best Western--but we have the far greater comforts of home, and I have much greater confidence that Ron's room has been properly sanitized. The homecoming has been tricky, but it's unbelievably soul-satisfying to be under one roof again. We occasionally hear the kids' voices outside the room and Ron turned to me after listening to Mai negotiate a popsicle from my parents and said, "that's worth it to get home."

Huge thanks to our big burly Barn dads who helped us move the kids' rooms to the back of the house. It's been really critical to be able to sequester the kids off the playroom, and we couldn't have done it without you!

And finally, thanks to all of you--family, friends, everyone--for your love and support. Coming from a girl who at one point in her life thought she could do it all (who WAS that girl?), we absolutely could not have done it without you.

Tomorrow morning we will go back to MGH for another follow-up visit with the transplant doctor. These past few days, Ron has had very little energy and I have been far busier than when he was in the hospital, so forgive us if we're out of touch. We'll do our best to keep everyone updated. Sending lots of love--

H

Friday, November 20, 2009

Home (Almost)

I was released from the hospital yesterday after 3 1/2 weeks, possibly one of the fastest stays for a patient who has had total body irradiation, high dose chemo and a stem cell transplant. No fevers, no mouth sores, no major infections and I maintained eating throughout the entire stay. These are not bragging rights as I really just happened to get lucky (although I guess I am bragging), but I am very relieved to have the hospital stay behind us. Making it through the transplant, and getting out is a major milestone, but there is still a long road ahead as the first 100 days post transplant are still quite critical. As one of my nurses so optimistically pointed out to me, I am already at day 15, so only 85 more days to go!

During the next 85 days I am required to maintain a rather strict diet, limit outdoor activity, limit visitors and basically just stay home and allow my immune system to grow. I can spend some time outdoors, but am unable to go into any indoor spaces where there are other people, so no movies, restaurants, malls, supermarkets etc... Once I reach that 100 day mark, they start to ease up on some of the restrictions and by 6 months, I should be back to a mostly normal routine with a few restrictions continuing for about a year.

Unfortunately, we have some colds that have surfaced at my house, so I am not actually home, but am checked into the beautiful Best Western of Concord right down the street, and I will be staying here for a couple of days until the colds are gone and it is safe for me to return. The doctors essentially told me... you really cannot go home, but you also have to leave. Fully understandable though... once a patient reaches a certain point (blood cell counts have rebounded), their job is done and they need you to leave. So a few more days of bad TV and isolation, but I am almost home. I am literally just a 3 minute drive from our house, so Ha is able to visit and bring me food (oh the leverage she has now!), and it is nice to be so close and at least feel like I am back in Concord. One step at a time...

I have a follow up appt on Monday and will be visiting my doctor twice a week for the next month or so. Barring any complications, I am looking forward to an uneventful couple of months at home and will continue to report out here with hopefully really boring news about nothing.

Ron

Sunday, November 15, 2009

Engrafting!

There are a couple of great bits of news to report today.....

1. I have started to engraft! My counts started to rise today, which means that the new stem cells are growing. My white blood cell count jumped dramatically from yesterday, so they expect the numbers will continue to rise over the next few days.

2. I am being told that if all continues to go well, I will be able to go home on Wednesday or Thursday! This is fantastic news and would be at least a week early as compared to their original expectation of 4 - 5 weeks (assuming I had no serious complications). They are all scratching their heads over here and are offering to place a plaque over the nursing station in my name, honoring all of the records I have broken during my stay.

I still have some pain and am experiencing various unpleasant side effects, but having avoided any number of serious complications that could have occurred, I feel extremely lucky. Three or four days is still a long way to go though, so I continue to remain cautiously optimistic. I have very clearly learned that in this process, every day is independent of the last, but the last 21 days have gone about as successfully as I could have hoped for.

Once home, I will be in semi-lockdown for the next couple of months with limited visitation allowed, limited diet etc... but I will be home and that will be such a treat. I'll keep you all updated as I learn more. Thank you to everyone for following my progress and providing so much support... it has really helped.

Ron

Wednesday, November 11, 2009

Day +8

Since Ha's most recent post with pictures, I have received a number of emails offering words of encouragement. The top three comments have been #3. You look strong (thank you), #2. Hang in there, you are halfway through (I am and I will), and #1. You have RED Crocs??? Just to clarify... the hospital required us to produce plastic sandals before I was admitted (no leather), so we had a mad scramble to buy Crocs off-season and all we could find was red, although I must say we got quite a good deal on them! And for all of you clever Wizard of Oz fans, I do click them together every day and recite "there is no place like home".

I continue to feel fatigued and have had an upset stomach over the past few days, but this is all to be expected. Thus far, I have miraculously avoided the really serious pain of overall infection, mouth sores, sore throat and fevers. Every day it feels as though my mouth and throat are about to get worse, but I have been staying strong. Despite some pain, I have been able to continue eating and drinking, so I think that has helped. I am not out of the woods yet with fevers though and they insist it is coming. I fire back that I am going to be the first stem cell patient to not spike a fever, and unfortunately, their laughter is not encouraging... we'll see.

My energy level has been really low which has kept me in bed for a good part of the past few days, but I have also been able to sleep through the night which has been nice. Due to all of the drugs they give me, I was having a lot of trouble sleeping during the first 2 weeks. In addition to the regular IVs that run through my body for 20 hours of each day (they unhook me for a few hours each morning), I am required to take about 20 - 25 pills daily. Each one is basically designed to keep me alive during this critical low immunity phase, but I can feel the effect it is having on my body and so sleeping has been tough.

Two weeks to go...

Ron

Post from Mai

Mai wanted to post to the blog today. This is her entry:

"Our house is changing because Mama used to get mad at Tal because he drawed [sic] on the wall but now she's not mad. Our furniture is moved. We got rid of a table, and now we only have one dog. So our house is different. I'm feeling just a tiny bit sad but I know you're going to come home so I feel a lot more happier than I used to be."

With luck, just two more weeks. Godspeed, Sweetie.

Monday, November 9, 2009

Scenes from MGH

I'm sorry I didn't get these pictures posted earlier, but it's hard work keeping the nurses' station stocked with candy. Anything chocolate simply evaporates! Ron's already given you the nitty-gritty on his side effects thus far, and I'll just add that aside from expected pain and fatigue, all the authorities here agree that Ron is doing terrifically well.

We can't believe six days have already passed since the transplant. The stem cells are delivered as a transfusion which takes approximately 45 minutes. Compared to the preconditioning chemo and radiation that Ron has already endured, the transplant itself is a piece of cake. This is a picture of the donor's stem cells as they're going into Ron's body.




The policy is for donors to remain anonymous for one year. After one year, identities may be released. Ron and I can't wait for that one year mark so we can personally thank our donor and let him know what his gift means to us. Wherever he is, we're flying our whole family there (I hope it's Lisbon or Milan, but we'd consider it an honor to meet in Iowa just the same).

The concept behind the stem cell transplant is for the chemo and radiation to kill and eradicate Ron's own blood cells. His counts lower to nearly zero, and then they rescue his body by giving him an infusion of the donor stem cells. In about two weeks, the donor's stem cells should begin producing white and red blood cells, making the blood flowing inside Ron's body essentially the donor's blood, with the donor's DNA. The hope is for this new blood to be more resistant and effective in battling Ron's blood cancer. This is a picture of Ron during the transplant, still smiling.


It's truly amazing to understand what modern medicine is capable of doing. In addition to the actual treatments, Ron also receives a battery of drugs around the clock to manage symptoms and side effects. We won't have any more kids to offer as namesakes, so we're naming future pets after our doctors. If you see any dogs running around Concord answering to Yi-Bin or Ephraim, you'll know where they live.

This is a picture of Ron right after the transplant, and right before he immediately falls asleep. He looks great, no?


Equally amazing is witnessing the sheer strength of the human body to withstand, compensate, adjust, and endure. Ron's body is a virtual battlefield. It hasn't been easy, but Ron is staying strong and raising the bar. The doctors say that many patients remain in bed at this point, but Ron has been able to get up for some time each day, shower, and sit in a chair. Most days, he exercises on the stationary bike. Below is a picture of Ron biking while getting an infusion of red blood cells. That's his trolley behind him with the blood hooked up through his catheter. Fantastic multitasking here.


Infusions of red blood cells keep Ron's energy up. Infusions of platelets keep  Ron's blood from becoming too thin to clot. Ron will continue to receive many more infusions throughout his stay. It doesn't go unnoticed that each bag is marked "volunteer donor," and I continue to marvel at the all the people and all the generosity that have carried us through.

People are good.

H

Saturday, November 7, 2009

Making Progress

Things are ok here at Mass General and I am just completing my 12th day. The past few days have been a little rocky, but I am feeling better today and am encouraged by my progress. I was warned of very painful mouth sores that could occur due to the high dose radiation, but was given a drug called Kepivance that has proven to help some (but not all) patients. The Kepivance has actually helped me thus far and while my mouth is a little sore, it has been very mild compared to what most patients experience. On the downside though, I had a bad skin reaction to this drug, and so for the past few days have had excruciating skin rashes that have covered most of my back and shoulders. Not fun stuff. But the rashes appear to be subsiding, and if I am spared the mouth sores, I have been told I should consider it a very fair trade off. I am still early in this process though and so any number of symptoms could occur at any time.

My blood counts are getting very low, which is expected and so now I am in the critical waiting phase where my body has no immunity and infections could surface. Thus far, my temps have been fine, but today they started to slowly creep up, so the docs have told me I will most likely start running a fever in the next day or two. They are all about symptom management here, and so when this occurs, they will start treating me immediately. Overall, I am in some pain, but things appear to be going fairly well. I keep getting the "thumbs up" sign from all the doctors and nobody seems to be very concerned about me at all, so I can only take that as a very good sign.

On a less important note, the food here is pretty miserable. Ha has been bribing all of the nurses by bringing in left over Halloween candy (which by the way is working I think) and she snuck me in a little Kit Kat bar which (to me) tasted like imported Belgian chocolate. The menu does not change, so after a few days, you start to feel like you are in prison. There is only so much turkey, mashed potatoes and gravy that you can eat... and enjoy. The servers, nurses and docs are all incredibly nice though and that makes a huge difference. Confined to this room, they are my only daily contact to the outside world (besides Ha's daily visits... thank you) and so their kindness and generosity has been truly appreciated.

So roughly 18 - 20 days to go and so far my stay has been difficult but not disastrous. My days are filled with CNN, music, exercise bike and email and it is actually starting to get a little boring. Putting things into perspective though, boring days are the absolute best thing I could hope for. My body seems to be holding up well to what one doctor expressed this morning as "about the most difficult course of treatment we can throw at any patient". So signing off and hoping for 18 - 20 more days of complete boredom!

Ron

Tuesday, November 3, 2009

Transplant day!

Ron received his donor's stem cells today. The infusion lasted about 45 minutes and all went smoothly. He fell asleep almost immediately after they unhooked him, and despite the expected weariness, looked peaceful. I'll update tomorrow with more details and pictures, but tonight I have just enough energy left to brush my teeth and collapse into bed. Sleep well.

H

Sunday, November 1, 2009

Staying strong

Ha wrote a very nice blog about me yesterday and so I took the liberty to research the definition of Superman and here is what I found... "faster than a speeding bullet, more powerful than a locomotive, and able to leap tall buildings in a single bound.  In addition, his immune system protects him from toxins and diseases."   Well, I am not sure about the whole business about leaping tall buildings etc...but I will gladly accept the super human strength of fighting off toxins and diseases.

I continue to feel reasonably well and I am hoping my strength will carry me through the next 2 crucial weeks.  Today I am receiving very high dose chemo and several drugs designed to eliminate pain and nausea.  Tomorrow is my day of rest...they essentially give me a free pass and leave me alone unti Tuesday; the transplant day.

It has been very hard not to see little Mai and Tal, so Ha and her parents snuck them in here for a short visit yesterday dressed in their halloween costumes. It was a real treat to see them, but that will be it for about two weeks as I work though the toughest of the weeks.  I love you Ha, Mai and Tal.

I have received several funny emails about my bashing of Neil Diamond, and so just to set the record straight, I am somewhat of a closet fan,  but at the time "Sweet Caroline" did not seem to be the most inspiring song to build strength for my radiation sessions.  So, no offense to the many Neil Diamond fans out there.  He definitely has his place, but in my time of need, Springsteen was most appropriate!

Also, for those who are still having difficulties posting a message, it is easy to post on the blog... after you enter your message, choose Anonymous in the drop down menu as your user name and you should have no trouble.  I am a little groggy from the chemo today and the associated cocktail of drugs they provide with it, so just a short post from "the inside".  I am doing fine, still eating, still exercising on my bike and miraculously, my stomach has stayed strong.  I may be breaking records over here for pain tolerance, but all I really care about is making it through and getting home by the end of the month.  That will be the greatest gift of all.  Thanks for all of your encouragement from the outside.  All the best to everyone.  -Ron