I Can’t Stop Touching Myself

My head, that is – and my new baby hair to be precise!

About 3 days ago my head started growing hair, real hair. I’ve had this weird stubble for weeks that has just been static, no growth, no change and only in a few spots on my head. Now I have this soft, baby hair all over my head! Progress! Real honest to goodness progress – most excellent. And I do find myself rubbing my own head all the time!

My red and white blood cell counts and platelets are all still trending in the right direction. I don’t have to have them checked again until August 17th. I am not sure when they will actually look at my “cancer numbers”. I am thinking maybe when I go back to Dana Farber on September 3rd.

I’d have to say I have reached a plateau in terms of how I am feeling. I am still easily fatigued and remain queasy most of the day. I did just read that the fatigue often lifts 3-4 months after the treatment, so I may have a ways to go. I continue to try and improve my fitness, but with baby steps. The queasiness seems to be something I just need to get used to for a while.

I have started to have an occasional quarter glass of wine with company (just don’t want more than a taste) and I had my first cup of coffee this morning, which feels more normal.

This Saturday is a big milestone for me as nearly all of my food restrictions (save raw meat and fish, salad bars and soft serve ice cream) will be lifted and I will be allowed to eat restaurant food – just in time for my annual Hampton Bays vacation. I can’t wait. I have been tempted to cheat as the date gets closer, but I am holding strong. After all, I have waited this long, what’s a few more days.

I have to admit to some anxiety about the long walk off the beach, up the dunes in the broiling sun, because of my fatigue, but I’ll just take it slowly, nothing is going to keep me off that beach, which is truly my “happy place”.

Thanks to everyone who sent books, cards, visited, walked with me, called, texted, etc. It has meant a lot to stay connected to the outside world during my “confinement”.

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!

Day -2

All settled into the room. I ended up in one of the three rooms here without a shower. This means I have to put a mask and gloves on (which I have to do whenever I leave my room) and actually leave the unit and walk into a public hallway to get to a shower. I was warned that this might happen and was advised to request a room change, which I did. I am number three on the list for the three rooms. It’s not so bad for right now, but will get old over time.

The staff here is great. I feel very well cared for. This floor is exclusively for stem cell/bone marrow transplant patients. It’s all they do here and it shows. My overnight nurse told me her other patient flew here to get treatment from Dubai!

The food is almost comical starting with the photo above. That is last night’s dinner, Chili con Carne with cornbread, both very tasty. But I took the photo, adding the tiny packet of butter for perspective. It was the tiniest serving of cornbread I have ever seen! I had requested butter as a condiment and they sent three packets – there was literally more butter than cornbread!

I also ordered a banana, knowing that when I go home I can have thick skinned fruits, but the answer was no. Watermelon? No. Cantaloupe? No. So canned peaches it was.

For breakfast, I asked for Raisin Bran, no, no dried fruit (I forgot). So I went with Cream of Rice. Brown sugar? No. (I have no idea why.)

Lunch, turkey breast and provolone on a whole wheat wrap? No cold cuts. Ok, tuna and provolone? No to the cheese (I think maybe because it is sliced like a cold cut?). Ok, just tuna. And so it goes. Their mashed sweet potatoes and their butternut squash are both good and decent portions. I think I’ll end up looking slightly orange by the time I get home like a baby who only likes the mashed carrots and sweet potato baby foods!

I received my first dose of melphalan. I had to suck on ice for two hours and 15 minutes in order to avoid mouth sores. It’s amazing what you can do when properly motivated! Upside to that was no hot flashes during the ice sucking or for several hours afterwards (bonus!). They gave me prophylactic anti-nausea meds and so far so good there as well.

I walked in the unit twice for twenty minutes and they put in an order for a stationary bike for the room, waiting on PT for that.

Going In

I leave for Boston in a few hours, my room is already there for me. No waiting, you know, except for all the rest of the waiting 🙂

So I’m going in, not quite as dramatic as jumping off of the Victoria Falls Bridge (see photo above of me, Summer 2012).

I’m ready. I’ve eaten my way through the past few days, all things I won’t be able to have for the next 50 days (or more) and things I think I might miss (or just felt like having).  This has included:

  • 2 lbs of fresh raspberries
  • McDonald’s cheeseburger and fries
  • Fresh figs
  • Blueberries
  • Doughnuts
  • Salads, lots of salads, middle eastern salads, shaved brussel sprouts over a risotto cake, arugula and beets, etc.
  • Dr. Mike’s hot fudge sundae

My clothes and entertainment items are packed in plastic bags (requirement). No toiletries, jewelry or wallets allowed.

And I won’t be outside for 18 days. Weird.

Here’s hoping I’m bored. As Dr. Munshi said when he first talked to me about this process, “I like my patients bored, that means they are feeling well.”