It’s Been a While

It’s been a year since my stem cell transplant. The ‘birthday’ of my new cells was June 15th. And it’s been almost four months since I’ve posted.

The reason for not posting has been two-fold  – super busy work/life stuff and not much cancer stuff.

I squeezed in a quick jaunt to Costa Rica with my son Kyle and my mom. It was beautiful, fun and full of adventure (zip-lining, Tarzan-swinging, waterfall rappelling, hiking, kayaking and driving on the roads). Our good friends Erica, Stacey, Lisa and my sister Kirsten threw us a fabulous engagement party.


Two of Scot’s daughters graduated (Maia from college and Tess from high school) and we threw them a graduation party.


We went to two weddings, one in Philadelphia and one in Georgia.

And my photography business has started the season with a bang – two weekends of three shoots each.

So as far as the multiple myeloma goes my myeloma numbers have remained low and stable (yay!). However, the revlimid has been messing with me a bit. First some nausea (enough to get me out of bed in the middle of the night to take something) and low platelets caused them to stop the revlimid three days early. And then the next cycle (two weeks ago) my ANC was 0.5 so they didn’t give me any treatment so I had almost two weeks off.

Last week I went to Dana Farber and Dr. Munshi changed my revlimid does from 25 mg to 15 mg.

In a recent conversation I had with Dr. Seropian at Smilow I said that treating this “is an art not a science”. He corrected me and said  “a craft really, you create a product with an art”.  So there 🙂

Writing this today while at Smilow getting poked and prodded – Zometa infusion, 5 vaccines (each a separate intramuscular shot) and my velcade injection. Fun times!

And last but not least enjoying every second I get with Kensley.

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 +3

Not much to report today:

  • :I am more tired.
  • Nausea probably not as well managed today as yesterday, but no puking.
  • Kyle left this afternoon and Scot comes tomorrow morning.
  • I’ve lost 13 lbs.
  • I am a little worried about becoming deconditioned, as I am more and more fatigued and up to doing less and less. But I did get out  there and walk a bit this evening and got on the bike yesterday evening.
  • WBC (white blood count) down to 0.41, platelets and RBC lowered slightly but no need for any transfusions.

The photo is of the beautiful silk arrangement Jane brought me yesterday.

Short

Ken used to use a fair amount of army vernacular, partially from the year he spent in Germany teaching on a military base, but I think mostly from his dad. Some of these terms have stuck with me and I still use them. So we come to “short”, typically I am not short, not in stature and I try not to be financially, but right now I am “short” in the military sense, or really in reverse of the military sense. Soldiers who are “short” are almost at the end of their tour of duty. I, on the other hand, am short and feel like I am going into the military, or perhaps prison.

And no, it is not that bad, nor that long, neither my hospital stay nor my limitations when I get discharged. But I am feeling like scrambling to do the last few things I can do now that I won’t be able to do later like eating now what I will have to avoid soon.

I am feeling much better than when I was feverish last weekend, but feeling the effects of last week’s chemotherapy – very tired and some occasional nausea. It took me three days to have both the energy and the appetite to go to Ashley’s for ice cream – oh the trials and tribulations! 🙂

I have just two more days of working (from home). One more photo shoot to edit. Dinner out with my kids. And I’m trying to use as many of our fresh herbs as I can when we cook!

At any rate, I’m counting down, but I’m still kickin’!

stillkickin

On ice

i went to work on Friday. Had a lovely lunch with a fellow “cancer buddy”. Then around 3:30 I started to feel cold. And by 3:50 I had to leave. I shuffled along to my parking garage, drove home, went straight upstairs and into bed. 

I had the chills, started piling on the blankets and my temperature started rising: 99.8, 100.8, 101.7, 102.7.  I called my local oncologist and they wanted me to be admitted. Maia drove me to the hospital and Kirsten met me there. 

The staff at Smilow met their “gold standard” of care in this situation by getting my blood cultures drawn and IV antibiotics going in under an hour. My fever did go as high as 102.9 at which time they brought in the ice bags. 

By 9:00 my fever seemed to go down as fast as it went up. Kirsten could tell as I went from laying there not talking at all to talking more and more and more!

They have kept me here and weaned me from IV antibiotics to oral and tried to get my nausea under control. I should go home this morning. 

I won’t be going back into the office this week. Turns out Friday was my last day there. I’ll stop in on my way home today and grab my laptop, etc. and hopefully be up to working from home this week. 

As always it takes a village. Sarah and Demian took Minka to the vet for me Saturday morning (something that had to be done prior to my SCT). Sounds simple, but not with Minka! She is a bit of an anxious pup and HATES the vet. She got out of her collar outside the vet (which is on Main St. in East Haven). They scrambled to corral her and Demian heroically, quick-thinking, and fleet of foot stopped traffic on Main St. so Minka wouldn’t kill herself!