Saturday, December 19, 2009

Day +46 - Coffee

I accomplished my very own milestone this week... no discharge papers or follow up manuals list this milestone, but for me, it was self-imposed and significant. I started to drink coffee again. After 2 months without any java, that warm, brown, slightly bitter drink tastes like heaven. Green tea has been a nice change, and I have tried them all... blueberry, pomegranite, mango etc.. but coffee is my true love and it is great to have it back in the mix.

I am now scheduled for doctors visits just once per week, which is terrific as I was originally told I would need to visit 2 - 3 times per week for the first few months post transplant. Dr. Chen feels as though for now, the GVHD is under control. I had my weekly follow up on Thursday and blood counts all looked good, liver enzymes are stable (still slightly elevated) and my rash appears to be much improved. They have slightly reduced my Prednisone again (to 40mg / day) which is a welcome relief. All other meds remain unchanged.

I am still under careful watch for infections though as the medications I am taking further reduce my immune system, so as originally told, I must stay confined to my home with limited visitation, however, I am able to take walks outside and can drive a car.. another major milestone accomplished this week, but I just cannot be around people due to possibility of infection. So, I can drive, but I just cannot go anywhere, which actually translates into... I can drive Ha places and then wait in the car. But as I described to her, I actually have grown to enjoy this. It allows us to spend some time together, and after being confined to a hospital room for a month and then our home for another month, sitting in a parking lot, makes me feel like an indoor cat, watching birds fly around outside, which has been oddly appealing these days. :)

Our house is full of all types of holiday festivities. We have been lighting a menorah each night and Mai and Tal love predicting which candle will burn out first. We have a number of Christmas presents all wrapped up, ready to open on 12/25 and I often hear Mai and Tal singing the Dreidle song and Christmas Carols throughout the house... we are truly managing a multi-ethnic household and it seems to be working for now.

Things here are still a bit upside down, but Ha has been juggling our household responsibilities with such grace and efficiency, it feels like we are starting to regain glimpses of normalcy. With barely a minute to spare each day, she did however manage to purchase a rare antique swiss made Elna sewing machine online and claims it was the best deal she has ever found. If you have never seen Ha's antique sewing machine collection, and are interested... I guarantee you will be impressed. All we need now is an antique barn to house her growing collection, and the dream would be complete.

So, this week has progressed well. We remain careful, and cautiously optimistic, but we are enjoying our time together and hoping our good luck continues. Thanks again for all of your well wishes and enjoy the snowy weekend.

Ron

Friday, December 11, 2009

Day +38

My follow up at MGH today confirmed these crazy, mind altering drugs are working, as the skin rashes seem to be improving and my liver enzymes continue to decrease. On the positive side, I have learned how to operate this week on 2 - 3 hours of sleep each night, and I have been eating outrageous amounts of good food (and not really gaining any weight). On the negative side, I probably should be getting more than 2 - 3 hours of sleep, and I probably should be gaining weight (as I am currently still about 20 pounds lighter than my pre-surgery weight).

Dr. Chen is pleased with my progress and feels that for now, we have the GVHD under control, but he did acknowledge it can flare up again at any time, for any reason, so I am not entirely in the clear. For now, I am starting to feel better physically and emotionally, which is a welcome relief, but I must continue with the onslaught of multiple drugs, which will most likely keep me wired and exhausted for the next couple of weeks. They did allow for a very slight reduction in my Prednisone, which is a step in the right direction, but evidently, they need to reduce the dosages slowly, so it is most likely going to be a month or two before I see any real marked improvement with the side effects of all of the drugs.

I have been able to spend more time with Mai and Tal and they are now able to give me cheek kisses (my idea, not doctor's orders) and Mai says kissing my cheek makes her feel like we have our normal life back. It breaks my heart to hear her say that, but also makes me feel so good at the same time.

That is all for now. Despite some continued side effects, in some ways I feel like I have turned a slight corner over the past few days and find myself smiling a bit more and enjoying my time at home. As Ha and I keep saying to each other.... if we can just have our old lives back, we would be the happiest people alive. Doesn't seem like too much to ask.

Thanks again for all of your thoughts, funny emails and well wishes. You have all made me realize how generous people can be. Have a great weekend.

Ron

Sunday, December 6, 2009

Day +33

I had my follow up at MGH on Friday and my liver enzyme counts decreased a bit, however they were still quite high, so the doctors prescribed an additional new drug to try and bring the numbers down further. The steroid (Prednisone) appeared to be working but they felt that I was going to need additional help to bring the counts down to a reasonable level. This new drug (Mycophenolate) is even more powerful than the Prednisone and packs some not so pleasant side effects, so the past few days have been difficult. The combined effect of these drugs is similar to the sensation of drinking 20 cups of coffee per day, so I am constantly tired, yet cannot sleep... a vicious cycle which I hope will be short term. I have a follow up appointment tomorrow and we should learn more. The hope is that the counts continue to go down, so they can wean me off of these drugs as soon as possible.

Additionally, the symptoms of GVHD have continued. The original rash on my chest and back has improved, however it has really escalated on my face and head and so the net effect is about zero. Specifically, the skin on my face, ears and eyes has turned bright red (looks like I have been enjoying a vacation in the Sahara Desert, and forgot my sunblock) and I have what Mai affectionately refers to as "elephant ears", as my skin has really thickened and dried out. This is all pretty standard stuff for the skin version of GVHD, and again the hope is that it stays localized on my skin and does not progress internally.

At 33 days, I am exactly one third of the way through my first 100 days. The 100 day mark is significant as many of the restrictions I am presently subjected to will be lifted. I will be able to start eating a more normal diet. I'll be able to spend some time in public, which opens the door to restaurants, movies, supermarkets etc... all simple activities that I have taken for granted for the first 45 years of my life. Now, a simple dinner and a movie with Ha, or a visit to the aquarium with Mai and Tal, are completely out of the question, and so these are things I think about and really look forward to. How my life has changed in such a short time.

Everyone in my house is now healthy, so I have been able to spend more time mingling with Ha, Mai and Tal, which has been nice. I have learned that Mai is pretty good at Sesame Street Rumba (a card game we play often and she beats me regularly). And Tal, at the age of 2, has learned the full alphabet, and so he can now successfully complete his alphabet dinosaur puzzle with very little help from Dad, which he does several times per day. Ha continues to amaze me with her ability to keep things going and provide support to me in ways neither one of us ever considered 9 years ago, when we recited to each other "in sickness and in health". My only fear is that I am setting myself up for a lifetime of doing laundry and cleaning dishes, based upon the inequity of our situation right now. I am going to need a strategy for this later.

I hope you are all enjoying the snow and I will report more when we hear.

Ron

Wednesday, December 2, 2009

Day +29

Not much to report here (which I am very happy to report!). The prednisone has been doing exactly what it is supposed to... I am incredibly hungry all the time, I am sleeping odd hours, and my rash appears to be settling down, or at least not getting any worse. I had a follow up appointment on Monday and everything looked ok except that my liver enzymes were high, which could just be a reaction to all of the drugs I am taking, or it could mean that the GVHD may be progressing internally. That is the irony of all of these symptoms I am experiencing... the symptoms could be nothing or they could be very serious and until they try a standard course of treatment to correct, they often cannot predict the severity or the cause. I started taking Ursodiol on Monday, which protects your liver, and then I will return on Friday for follow up testing to see if my liver enzymes are lower. If they are not lower, it will mean a battery of tests to determine the cause of the high enzymes (and trust me, this will not be a fun process).

The good news is that I continue to feel better each day, gaining strength and feeling less pain. Ha has been feeding me well, it has been nice to start spending a limited amount of time with Mai and Tal, and Ha's parents continue to help us in so many ways, taking care of the kids, cleaning and helping out with anything we need. I am still in semi-confinement, with very limited visitation. Infections provoke GVHD so I actually need to be extra careful right now to ensure that the disease does not spread unnecessarily.

I have been keeping busy, working a bit from home (busiest time of the year for us) and watching movies and old episodes of 30 Rock (courtesy of Roku). I took my first outdoor walk this morning (at 6am to avoid the crowds) and so energy permitting, I plan to start exercising every day, which should help with my recovery. That is all for now... feeling stronger and better.

Ron