Month: October 2021

So Close

I was all packed up. Had all my outpatient meds. Six hour phosphorus infusion had just finished. Scot had crossed into Boston proper. The nurse just wanted to check my vitals one more time before they removed the PICC line. 100.8, surpassing their limit of 100.4.

Immediately back to blood cultures, IV antibiotics and at least 24 more hours here.

This has given me time to think about the pluses and minuses of being here.

On the plus side is the amazing nursing care. Many of the nurses have been doing transplants for several decades. Their knowledge and how it improves your care is immeasurable.

Also a plus, new and more anti nausea meds, and the staff’s commitment to keeping the nausea at bay.”If you even think you might be nauseous, ask for meds.”

And of course, the actual clinical care. I know Smilow does this largely out patient. I can’t see how. Here they are monitoring my input and output. Daily CBC, CMP, and electrolyte blood panels. On any given day I might be getting blood products and/or one or more of the following via IV: magnesium, potassium, phosphorous, or calcium.

There are just a few minuses (aside from missing home, family, friends, and of course Lola).

Imagine me having this sign at the foot of my bed for 16 days (it didn’t bother me at all).

My biggest complaint is the temperature control/air handling in the room. This is a constant pressure room, which means there is always air blowing out, keeping any germs from blowing in. There is air blowing right above my bed. The temperature of said air varies from freezing cold to steaming hot, at least a couple of times per hour.

Now there is a chance I get out today, but last night’s nurse was betting on Monday.

The Weekend

No, not that The Weekend, this Saturday or Sunday. Barring any unexpected changes I’m going home!!

My ANC went up to 0.66 and that’s the count I need to be above 0.5 two days in a row.

They “pulled” my central line this afternoon. I’ll have the PICC line in my arm removed when they confirm I’m going home. I had my nutritional and infection control training today.

I’m very excited. I avoided thinking about bring home until now. Boy, am I ready!

I want to shout out to my visitors: Alison, Marsha, Kirsten, Brett, and Lisa! And thanks to everyone for the texts, phone calls, FB messages, comments, basically – thanks for all of the love.

Now to go home and continue the recovery.

Time Flies…

Actually it feels like time is standing still but then I see I haven’t posted in several days. Days +3, +4, and +5 have been fairly non-eventful. I feel “pretty good”, nausea is being controlled by requesting meds as soon as I feel it, and the exhaustion is what it is.

I did get a low grade fever yesterday which caused me to get put on IV antibiotics. So far nothing is growing in the blood cultures and the fever is gone for the most part.

My “counts” have gone lower but are certainly near bottom. I’ve had one blood transfusion snd will likely need platelets tomorrow. They started the neupogen shots this evening on schedule to boost production of my white blood cells (WNC). When my WBC doubles two days in a row I can go home!

Day +1 and +2

Well, I went two for two yesterday and today – puking in the morning. Thankfully, the team added yet another anti nausea medication and it seems to be working.

Today I had another visit from Alison on her way home from visiting her parents. I stayed awake all day (yesterday I slept a lot). I ate a decent lunch and dinner. However, I only walked a bit and danced once. I’ll have to try harder tomorrow.

Brand New Stem Cells

Not exactly new, they’ve been on ice since June 2015. But they are new to my very beaten up bone marrow. I received them today at 2:15. The nurses wish you/them a happy birthday.

It went exactly as planned. A little scratchy throat and flushing (from the preservative), but nothing a few life savers couldn’t help.

I was a bit nauseous early this morning but the meds did their trick and no puking so far.

So this is Day 0. The “anticipated” discharge day is Day 24 (October 26). But it could be a couple of days sooner or later. I have some rougher days ahead but nothing I can’t handle.

Thanks for the comments, texts, and checking in 🥰

Ice and Popsicles

Friday, October 8: Central line placed at Interventional Radiology, they left the PICC line I have in my arm in because there was no order to remove it. We had a lovely early anniversary at Aquitaine in the South End.

Saturday, October 9: Had a yummy brunch with a spectacular cinnamon roll at Alden & Harlow at Harvard Square. Checked into my room at Brigham & Women’s Hospital around noon. Slight mishap, the bag I packed for the hospital didn’t make it into the car.

Sunday, October 10 (Day -2): Chemo Day! Only slept from 12 – 3:30 am. Started running fluids at 10:30 and premeds: some antibiotics, aprepitant (long acting anti nausea), and 10 mg of dexamethasone (which I will get 4 days in a row).

Alison brought my bag to me and arrived in time to watch me eat ice and popsicles for 1 1/2 hours. This is cryotherapy to prevent mouth sores which is a common side effect of the melphalan, the chemo drug. She stayed for some hospital lunch and we finished the Sunday NYT crossword puzzle.

They recommend 30 minutes of exercise per day. I have been doing sets of 10 minute dance sessions in my room. I got 4 sets in even with getting the chemo. Hopefully I can keep it up!

One more thing, they have decided to leave the PICC line in my arm in. So they will have 5 access points if needed.

Numbers and Perspective

When I went to Smilow yesterday to get my CBC and CMP checked, which I have been doing every other day without fail, I was pleasantly surprised. Well, actually I was ecstatic, which is where the perspective comes in. My platelets were 20 which is just at the break point for needing (or not needing) platelets (low normal for platelets is 140). But I was excited because lately my platelets have been around 8-14. So 20 seemed great – and no I did not want any platelets, thank you very much.

My hemoglobin came in at a whopping 8.6 so I also did not need a blood transfusion (low normal for hemoglobin is 12). My ANC which not that long ago was hanging down around 0.1 and 0.0 (!) was 0.6!! I was so excited I made the nurse a little nervous. She was sure to remind me that I was still neutropenic and to follow all the protocols. (I need to get to 1.0 not to be neutropenic, that is also low normal).

Speaking of platelets, earlier this week I had my first platelet incident. Let me preface this by saying if anyone should not have low platelets, it is I, with my propensity to banging into things and general klutziness (I know, former college athlete, whatever, I’ve also always been a klutz!). Back to my story, I was walking out of my kitchen and banged my knuckle on a door jamb. I thought to myself, well, with my low platelets that’s going to leave a bruise. Probably 30 minutes later I noticed that I couldn’t bend that finger, I looked down and it was blowing up like a balloon! I totally panicked – call the doctor? go to the ED? Thankfully, Scot came home early and just at that moment, he calmly said, “Don’t panic, put some ice on it.” (He later admitted to actually panicking.) I iced it and called Smilow, and amazingly got through in just a few minutes. I got a follow-up text from my APRN Alfredo, asking for a photo, which I sent. And by then it had stopped inflating. He told me to keep icing it and elevating it. Which I did and it was fine. It did turn many different shades of purple over the following days.

Already less swollen out of the ice
One day later
Two days later

Now I am just a couple of days away from starting my Stem Cell Transplant Part 2. I leave on Friday fro the central line placement, then hospital admittance on Saturday, chemotherapy Sunday and Monday, and then on Tuesday I get my stem cells back. Tuesday is Day 0, I should be ready to come home on Day 12 to Day 14.