I am home and adjusting to my new energy level and all of my restrictions.
When I got home Sunday evening I had to stop to rest halfway up the stairs both times I went up.
Monday I was feeling much more energetic, unpacking, reading my mail, opening mail order packages (I swear I’m going to stop shopping!) and dealing with some prescription and appointment issues (it’s always something!). Sarah came over in the morning and picked up my prescriptions for me. Of course the one that was most essential was not there, mephron. Mephron is the antibiotic I need to take to keep from getting pneumonia. It is by far the most disgusting medication I have ever taken. It looks like something they would have made for Nickelodeon, it is a neon yellow, thick oral suspension (why not a pill? why?!?!) that tastes like banana-flavored paint thinner. This is not an exaggeration, that is EXACTLY what it tastes like. So in my “it takes a village fashion” after several phone calls (the pharmacy in Boston, the unit where I was inpatient, CVS locally, etc.) and several hours later my mom had to go out to a different pharmacy and bring me the mephron.
Later in the afternoon Sarah “walked” me. I am supposed to walk daily, but not alone. (I will go over all/most of the restrictions at a later date, I don’t have the energy for it yet. But suffice it to say that any of them taken alone don’t seem onerous, but once you start layering them – oy vey!) Yesterday we went to the beach in East Haven, very manageable. But I insisted on collecting shells. Squatting down, getting back up, over and over again. After a while I realized that I shouldn’t be doing that and stopped.
This brings us to this morning. I felt like I had been run over by a truck. I had to rest in between the tiny steps of whatever I was doing. My legs were sore. I was totally exhausted. Sarah came to take me to an appointment I had at Smilow for a blood draw and if needed, a transfusion of blood products (platelets or red blood cells). I was sure I would need red blood cells. Well, let’s say I was sure that I needed a transfusion, or I did too much on Monday or a combination of the two. So, I probably did too much – no transfusions needed – which is actually good news!
Sarah and I headed to Trumbull to pick up Minka and made a quick pit stop at my sister-in-law Lynn’s summer rental on the beach in Milford to drop off a plate that had been at my house. Great to see her and a bonus as my mother-in-law Lillian and other sister-in-law Tobi stopped by too!
It is so good to have Minka home (of course there are more rules and restrictions connected with her). There is nothing like a sleepy dog as your partner in crime while you are supposed to be resting.
Fresh air. Green, living things. Hugs. My own bed. Shower. Planning a meal. Birds chirping. Home.
Can’t share in the driving. Not being able to run into CVS. Heading straight to bed for a nap. Stopping halfway up the stairs to rest. Water doesn’t taste right. Restrictions both explicit and intrinsic.
It is good to be home, but this is going to take some getting used to.
I’m coming home tomorrow (Sunday)!
My WBC count multiplied by 6 up to 1.45. And my absolute neutrophil count (ANC) which had been non-existent and needed to be 500 for me to leave was 1200 this morning!
There is a little bit of a glitch with my home medications but everyone here is doing everything they can to work it out.
I just had another reiki session and I’m waiting on the arrival of my mom and my brother for their visit. Scot comes tomorrow morning to take me home two days early!!
I am also anxiously awaiting the Hickman line removal.
I have some more “training” to do before I can leave. It is a tiny bit frustrating because there are some inconsistencies between sources of information in regard to the long list of limitations I will have for the next 30 and also the next 90 days. But never fear I will get it all sorted out, with the assistance and of course the nagging of my great care team at home.
I am totally over the hump!
My WBC tripled to 0.25. I have only needed a tiny bit of nausea meds. No nap today. Had a good walk. AND the medical team is looking at a Monday discharge (although I keep calling it “release”). The details will be confirmed tomorrow.
I am taking in fluids like I’m in a competition as adequate drinking is a condition of my release, I mean discharge.
Had a double decker visit today. My sister is here for a 2 day stint and my dad hopped on a train leaving my new baby nephew behind in Brooklyn to see me.
As I start thinking about heading home I have to give a shout out to the village who takes care of and loves my little Minka – moo (pictured above). Scot let me FaceTime with her every night until Kyle took her for a long visit. He has sent me several pics of her being her whackadoodle self. His roommate Tyler sent me an adorable video of her with him asking her “to say Hi to your Momma”. His other roommate Casey posted a photo on Facebook of the Minkster playing with his parents’ dog. And finally my friend Alison who picked up the dog from Kyle’s to take her for a hike in the valley, her favorite spot in Trumbull. This all makes it much easier to be away from her knowing she is getting all that love.
Today was markedly better than yesterday. And yes, Cheryl, although I did not mention it in yesterday’s blog I did puke yesterday. I had been trying really hard to convince myself that I was less nauseous than I had been and I misplayed it and ended up throwing up before breakfast. Proof that the power of positive thinking is not always enough.
Today my numbers are still in the trenches but still my WBC doubled from 0.04 to 0.08, platelets are 14 and hematocrit at 24.7.
I haven’t napped since this morning and It was only thirty minutes compared to my typical two hours. I am starting to feel a little bit bored so that must be a good sign.
Sarah has been force feeding me liquids, constantly filling my cup with ice and whatever beverage I have around. If I can drink enough I can earn some time disconnected from the IV pole.
We watched a Sex and the City marathon today and had a lovely visit from my niece Jen.
I am going to use the power of positive thinking to have the way I feel today be a trend and not just a blip, which will also make it more likely that I’ll be able to come home sooner.
One of the clinicians today described this period as “the trenches.” My WBC has bottomed out (0.04 today), my hematocrit was 24.7 which meant I needed red blood cells and my platelets were 8 so I also got a unit of platelets.
And man am I tired! I am too tired to explain just how exhausted I feel. Even with Sarah typing for me.
I did experience a bump after the transfusions at which time I bathed and got some walking/dancing in on the unit with Sarah. The nurses were disappointed we were using earbuds, they wanted to hear the music. (Note: in my room I don’t have to wear anything. But visitors must wear a mask ANC gloves. Outside of the room the situation is reversed.)
I seem to be following the expected trajectory of this treatment. Days 6-10 were slated to be the nadir (the lowest point) of the treatment in terms of numbers and that is where I am at now.
On the multiple myeloma forums it was recommended over and over again to pack extra undies when you go in for a SCT, now I know why. And the fatigue is quite debilitating, bathing today required 3 rest periods.
The doctor on rounds this morning said I’d have three or four days like this, then I would feel better and then my numbers would start to climb and then I could go home. I am going to assume he was counting today since he said it at 9 am, right? 🙂
My numbers continue to plummet, as expected (WBC 0.03, platelets 24 and hematocrit 24.7, up a little, but I have had red blood cell transfusion both Sunday and Monday). But not my spirits! Oddly, the time is going by fairly quickly. I am already past the half way mark. I get emails and texts, cards in the mail, I’ve listened to a couple of podcasts, watching a lot of Food Network, Face timing with Scot, getting videos from Tyler of Minka – the time passes. Plus, I take lots of naps.
So this morning was not as good as I had hoped.
Woke up to another migraine at 4am and then shortly before noon I experienced the worst 30 minutes I have had so far. And 30 minutes may not seem like a long time unless it is happening to you. The lovely list of incidents included: stomach cramps, diarrhea, and vomiting.
Aren’t you glad you came to read my blog today?
After IV anti-nausea meds and a two hour nap I have been feeling better; I even took a walk!
Sarah has arrived and is actually typing as I dictate.
One day at a time, one day at a time.
Day +5 was a good day, although it started with a rough night prior. I woke up around 4 am sopping wet, assuming I had just had a terrible night sweat. It was not until I realized it was more moisture than would evaporate on its own that I hit the call button. As it turns out my fluid line had gotten disconnected. And then, after changing the bed and falling back to sleep I woke up with a migraine an hour later.
BUT, I had a nice visit with Kyle, neither of us needed a nap and I did not need any “coverage” anti nausea meds (I am getting two of them without requesting over the course of the day). I feel more like myself with more energy. I do understand that it may get worse again before it gets better. But I am also open to the possibility that it will continue to get better, or stabilize with a few bumps. Either way, I’ll get what I get and I won’t get upset (that works for 53 year olds as well as it does for three year olds).
My WBC is down to 0.22, which is considered fairly close to bottoming out. My hematocrit was low enough that I did need and received a unit of red blood cells. The nurse made sure to inform me and Kyle that this was prime stuff, from one donor, screened and irradiated, so more “good stuff” for me!
Anxious for Sarah to arrive tomorrow for a four day stay and not just because she is going to do my laundry.
Thanks to all the people who have hosted or will host me and my visitors here in Boston: Alison’s Aunt Maureen and Uncle Joe, Lisa’s friend ‘Grini, Ken’s cousin Herman and Marsha, Sarah’s friend Suzanne, Kyle’s friend Jane, and perhaps even an old school chum of mine Ellen (if it works out).
And lastly, a Happy Father’s Day to all you dads out there – I was sad to miss all three celebrations I would have gone to today, but delighted that a good time was had by all.
The big news of the day – I am #1 on the list for a room with shower!
The more time I spend here the more conversations with staff become personal. The day nurse I have had for a few days is a widow with a 28 yo living at home and a terrier/pug mix dog. The PCA (personal care assistant), the one who got me the reiki session, wears wigs, has no hair and loves my buffs so I’ve pointed her in the right direction for purchasing some. Another nurse has an 8 month old bulldog. Another one has a sister who recently came out to her family as a lesbian. And yet another is at wedding in South Carolina this weekend. They are old, young, born and raised anywhere from Boise, ID to CT to right around the corner. We’re one big healing family 🙂
I’ve come up with a new side effect just now as I try and get this blog out – mucositis. For me it fells like a little bit of an air bubble about midway down my esophagus and then a stabbing pain right underneath my ribcage on the right side. Apparently, this is treated with oxycodone. It only hurts when I drink or eat, each swallow of beverage and/or bite of food.
It is very complicated managing the side effects and treatment of same side effects. For instance, I am losing weight (although I was up 2 lbs. today) and not drinking enough. But I have to do this mouth care which includes 2 different preparations, one a rinse and spit, and the other a rinse and swallow. They are to be taken one hour apart and you cannot eat or drink anything half an hour after you take each one. And now eating and drinking is giving me a stabbing pain in my gut. Alas and alack…
But I digress, today was really a pretty good day, nausea held at bay, Scot is here, brought me up a new hoodie (the room can get cold, in between my hot flashes) and we had a good nap (the “mens” know how to sleep during visitations, the women, not so much). Kyle treks back up here tomorrow for the day, Father’s Day was a tough one to fill.
Maybe I just need a belly rub like the lion above in Zimbabwe, 2012.