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”.

Annoyances = Good Signs

I have been home now for a little over three weeks. I am still experiencing fairly intense fatigue, but it is better. I feel queasy almost all the time, but that is better than true nausea. I am suffering from dry mouth and things still don’t taste right, but fewer things.

One of the good signs is that I am starting to be a little bored. When I was feeling terrible I wasn’t bored at all. I am tired of being bald with stubble. When I didn’t feel well I truly didn’t give a shit. I am annoyed putting on mascara because I have fewer eyelashes than I did before plus I need to use a little brow liner. Again, when I was feeling gross I didn’t care that I didn’t look so great. And I am more than ready to eat outside of my house – really ready. Did I say I was ready?

So the fact that I am getting nudgy, bored and feeling ugly is a good thing – it means I am feeling better!

And the better news for me is that I have less than two weeks before almost all the food restrictions are lifted and I can venture into uncrowded restaurants. I will still have to be very careful about staying away from sick people and continue to work on building my strength and endurance and I hope the queasiness ends soon.

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!

Patience

If you know me, if you know me at all, you likely are aware that patience is not a strong suit of mine. I’d like to think that I have become more patient as I get older, but suffice it to say I had a long way to go!

My recovery is moving at what times feels like a snail’s pace. My first week home I was very fatigued, laying around a lot since even sitting up made me tired. Sarah reminded me that anything I was doing, above and beyond going to the bathroom, was more than I was doing in the hospital. Last week I did walk every day, but was stuck at a 15 minute stroll. And the nausea, pretty persistent.

But this week, I am finally seeing some progress. I added 5 minutes to my walk and yesterday felt pretty good doing it which means I might be up to 25 minutes soon. I am spending more time sitting up than laying down as the week moves on. And speaking of the week moving on, I was pleasantly surprised that it was already Thursday, time is moving a bit faster as well.

I am still napping, but not every day. I am cooking on average one meal, maybe one and a half meals per day. I am starting to get back to doing my daily squats, formerly 40/day, today I did 15.

I went to Smilow for my third check up today and saw the APRN. She said I “looked great” (surprise) and that I am “ahead of the game”, so that’s good.  My WBC and neutrophils have dropped a bit (to be expected) and I may need a neupogen shot next week (“to remind the bone marrow what we want it to be doing”). But platelets and hematocrit both look good.The nausea is lingering, she said that the weird feeling I have on my tongue is what is likely happening all along my GI tract, so that makes sense. I’ve gone a whole day and sometimes a half a day with no nausea meds but it’s pretty inconsistent. I head to Dana Farber with my sister on Monday. We’ll see what they say there.

Scot has been a trooper doing the daily bathroom/kitchen cleaning. Sarah did a bang up job doing the dusting and floor cleaning this week – who knew she could clean so well – a lot has happened since she left home! And I want to thank everyone for the cards, texts, messages and emails – and Carol for the Life is Good shirt!

I have started to have some visitors which is nice, it breaks up the day. And folks have been giving Sarah and Scot the occasional reprieve from “walking me”.

And then there’s my hair. I have some stubble/fuzz. I am very curious (read: impatient) about what it is going to look like a week from now, two weeks from now, etc. Only time will tell…

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!