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!
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.
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.
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.
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.
I did make it home last Friday and the root canal is complete. However, my team at Dana Farber has made the decision to delay the start of my stem cell transplant by one week. They would like to see my WBC and ANC move up and they didn’t like the c. Diff.
So now the plan is to go to Boston on October 8th for the placement of the central line and be admitted on October 9th for the stem cell transplant.
Also, effective yesterday morning, my hair is no more. Back to buffs, hats, and a wig.
Just got my counts for today, ANC 0.2, platelets 10, and hemoglobin 7.2. So it will be a long afternoon into evening here at Smilow getting blood and platelets.
I have been here at Smilow for two nights. I have not had a fever basically since I was admitted. I did however develop C. diff.
There have been no other evidence of infections. I have been getting IV antibiotics (and oral for the C. diff). I have not slept well. I have continued to have headaches and nausea which I can actually manage better at home with Tylenol, etc. AND I have a 2:00 dentist appointment I HAVE to get to today to complete the root canal required for the stem cell transplant.
The doctors kept me last night “out of an abundance of caution”. You only see the doctors once a day. So I have been very communicative with the nurses about my need to go home (and that I would likely go home even against medical advice). They have been very understanding and have given me great compassionate care during my stay.
This morning my hemoglobin is 7.0 so I need a transfusion before I leave. The nurse just popped her head in and said the blood is ordered, she just needs to go get it. She added that she she spoke to the doctor about discharge today and she started to hem and haw and the nurse told her, “She’s leaving today.”
Woke up this morning feeling chilled. Took my temp, 99.1. Had an 8:30 infusion appointment at Smilow. (Only needed platelets, and my ANC finally made it to the scoreboard with a whopping 0.1.) Temp was 99.7 (100.4 is their breaking point for fever). But they decided to take blood cultures anyway (that’s what they do at the hospital when you show up with a neutropenic fever). They sent me home and told me to call if it was 100.4 or higher.
About an hour later I was at 102.1. I took it over and over for about 30 minutes and it didn’t budge. Called Smilow as directed and they told me to come to their Extended Care Clinic at 3:00.
When they were checking me in and running through all the questions, they asked if I had eaten today. I had. They wanted to know what… my answer, “a doughnut and a cold piece of pizza.” Bluto’s got nothing on me!
I have come to Smilow every other day since I was released from the hospital. Saturday and today my blood counts have been “tanking”. Both days my ANC has been 0.0 and my platelets have been in the teens. Today my hemoglobin is 7.2, so I need platelets and a unit of blood.
Of course there is a slight complication. I have my pre-SCT PET scan at 12:50. Not enough time to get blood and platelets. We’ll see if I can come back up for the blood after the scan.
I’m feeling pretty good, not great. Lots of headaches, nausea is still lingering, and I’m tired. I also feel oddly, just a little bit shaky most of the time. Not literally shaking. Just not solidly up and able. It’s hard to explain. But I did go on a walk with Scot and Lola yesterday. I took it super slow and stopped and took a breather as needed.
I am going to try and take another walk today if I get out of here at a decent time. I am going to count all of the walking all over the hospital too!