Trot, trot to Boston…

Kirsten and I headed up to Boston to get my first post-transplant check up at Dana Farber. We departed with plenty of time to spare, but In true “it’s always something” fashion there was an oil tanker that rolled over and caught on fire on I-91, which delayed us 45 minutes. It all worked out in the end as once we got there I pretty much sped from blood draw to visit faster than I ever have and we missed most of the traffic coming home.

The news once there was all good. There was of course the repeated refrain of “You look really good.” which is almost silly at this point, but better than the alternative. My CBC counts all look good. Platelets are steady, hemoglobin is in the normal range and my WBC continues to inch up. She actually said I had good bone marrow – which made Kirsten laugh, because you know, my cancer is in my bone marrow!

So at the end of July many of my restrictions will be lifted.I will be able to:

  • go to other people’s houses
  • go to restaurants and other public places (when they are not busy/crowded)
  • all of the food restrictions will be lifted except for sushi, soft-serve ice cream and salad bars

As of right now:

  • I am released to drive if I feel up to it, only short distances, and during daylight
  • I can have take-out cheese pizza (my Mom is bringing me one from Modern Pizza tonight!)
  • I can have a glass of wine (but I still have no taste for it at this point)
  • Some of the strict cleaning details have been eased
  • Only one more week of that disgusting mepron!

My primary instructions are to stay away from sick people and go home and continue to recover. My daily walks are up to 35-45 minutes and are including some decent size hills. I am up to 20 squats and I am getting ready to throw in some more of my other exercises.

The problem comes with the more I do, not only does it make me tired but it makes me more nauseous, so I am walking a fine line. I get tired from simply being upright for too long (just sitting). Yet I can do things like cook as long as I take breaks. Speaking of breaks, I can finally shower, get dressed and put on my eye make-up without resting in between! Big step!

Things continue to taste weird/bad and my tongue still feels yucky.

I will haveweekly blood checks this month at Smilow, then every other week in August and back to Dana Farber on September 3rd. Things still to be decided are if and what a consolidation treatment might be for me (possibly the RVD, revlimid, dexamethasone and velcade I started with back in January) and what my maintenance therapy might be (just revlimid?).

I am cleared to go to the wedding on August 15th in NYC and my vacation in Hampton Bays the first week in August. It is always inspirational to have things to look forward to!

P.S. Shout out to my friend Donna who weeded my front garden – woot woot!

Fourth of July Plans

Back in January I spent several hours on my computer trying to purchase tickets to see James Taylor on the fourth of July at Tanglewood, fireworks and all. I scored 4 tickets and was very excited to be going with our friends Lisa and Michael.  But then as the plans for the stem cell transplant fell into place I quickly realized that I would not be spending the holiday weekend as I had planned.

It’s not quite as dramatic as the Mike Tyson quote (I knew there was a quote about plans I needed for this, and the fact that Mike Tyson had one that could fit just cracked me up).
The infection control restrictions post SCT are basically this, I can’t go out to public places. I can go outside. I can go for walks with company, I have come to refer to this as “walking me”. I can go to the beach, I can even swim in the ocean. I can have visitors, healthy visitors, who must wash their hands when they arrive. I have been foregoing hugging or kissing greetings as this just seems prudent at this stage. The only public places I can go to are my medical appointments and when I go I have to wear a mask and gloves. I have gotten approval to visit a couple of friends at their homes who are on the water as long as I don’t go inside their houses.
Additionally, Scot has to clean the bathrooms and the kitchen – every day. And I have to wash my hands every time I pet Minka.I have had to abandon my hatred of paper towel usage and put away all my dish towels. This apparently is not a time to “be green”.
Food restrictions include:
  • No raw fruits or vegetables. This does not include thick-skinned fruits such as melons, citrus or avocados. It does include fresh uncooked herbs (like all of the basil,mint, parsley, dill, and cilantro in our gardens) and even uncooked black pepper.
  • No restaurant food, this includes take-out, pizza, Starbucks coffee.
  • No baked goods from a bakery, has to be store bought, packaged and processed.

I am struggling a bit this first week home with fatigue, nausea and lack of appetite. The nausea comes and goes. I found myself saying to my local oncologist yesterday that I was trying to be brave and not take the nausea meds.  He asked “Why would you do that?” I said, “Well, not brave really, I am trying to be positive and look forward and wish the nausea away with this positive thinking.” Moments like these remind me of being in therapy, where you can’t always understand what you are thinking until you say it aloud, and then it all becomes clear. As it was yesterday, he said nothing and I added, ‘That’s dumb, should I go back to taking zofran prophylactically?” And so it goes.

They say that exercise can help with your fatigue. I did a tiny little mini portion of my old workout routine, something like a third of a half of it twice this week.  The second time was this morning. I can walk at less then my normal pace for 15 minutes without feeling the effects. The plan is to add a bit to that every day, even a minute at a time.

The lack of appetite is lingering as well. I only feel like eating certain things and when I do, I can only eat a little bit of it before I am full or no longer have interest. This feeling is FAR outside how I normally feel about food and eating! I have lost 16 lbs. since I went into the hospital almost 3 weeks ago and I now weigh 5 lbs. more than I did when I got married – and haven’t seen this weight since that time (1983!).

So I am spending a lot of time on the couch watching t.v. If I do anything, emptying the dishwasher for instance, I do a portion of it and then go and rest and then do a little more and then go rest. etc.

But, this is the first week, and it should improve over time even if it is slowly. And I am not going to see James Taylor tomorrow, but I do see some lobster and corn on the cob in my future!