#13 January 5-7

Tuesday, Chemo Day 8 – Today was a pretty good day. We had given our tickets to see Carol King’s Beautiful tonight to our son and DIL, and I was almost regretting doing that since I was feeling so good this morning. It was a good decision; however, because my stamina tanked today big time. Just the slightest exertion, and I was through. (Side note: chemo brain alert – took me two minutes to think of the word exertion. I knew it began with an e, but was lost after that.)

My husband had picked up our Seattle Sutton yesterday to get us started back on our healthy eating, and I was glad to see it back. That’s just one more decision that does not need to be made. I’m sure that eating better will help get my entire gastric system back on track even more than it is.

I’m still dealing with the achies, and I keep taking my temperature to make sure that this low period of my immune system hasn’t handed me some sort of infection. It has been running somewhat higher, and tonight when I went to bed, it was 99.9. That was scary since 100.4 is the number where (according to all my printed instructions) I must Contact your health care provider immediately, day or night! Of course, this is not something I want to do in the middle of the night. I go to sleep, but wake numerous times in the night checking my temperature.

Wednesday, Chemo Day 9 – I send an email to my nurse practitioner telling her about the slow, but steady rise in my temperature, and wondering if this is a trend. She reminds me that 100.4 is the standard to worry about, so not to worry. Right.

I make an appointment today with a wig salon for Thursday. They specialize in wigs for cancer patients, and even though Medicare will not approve, my secondary insurance will cover 75%. A small percentage of cancer patients do not have all their hair return after chemo. I don’t know that I’ll be in that group, but think it’s a good idea to get covered (pun intended) while I can.

I spend a frustrating amount of time talking to my secondary insurance about the coverage. Since I have to front the money, I want to be sure to get reimbursed. Apparently even though they and I both know that Medicare does not cover wigs, I still have to jump through the hoops with Medicare first, get them to say they don’t cover it, and then apply with my secondary. What a waste of effort.

I’m still enormously tired, can hardly get up and down the hall without having to sit down to rest. At least I’m not dealing with pain – there’s a positive! In the afternoon, I lie exhausted on the sofa, both of the dogs are lying on my lap, I’m covered with my Harry Potter blanket, and I cannot get warm. I have my husband check the thermostat – surely it’s set on 60, right? Nope. I take my temperature – 99.9. I drift off to sleep.

When I wake, I feel some better, not cold anyway, and I sit at the computer for a while. My face feels flushed. I decide to take my temperature again. There it is – the magic 100.4.

I page my oncologist who gets right back with me. She’s at the airport about to board a plane. She says I have two possibilities (1) go into the ER, (2) she’ll send out an antibiotic to get me started, and I go to the ER if the temperature comes back. I ask which she recommends, and she thinks the oral antibiotic will be good since I’m so close to the “coming back” time of my chemo bell curve. She also says the ER has been very busy that day, and likely I would wind up sitting there for a long time. I vote for the antibiotic.

I can take Tylenol for the fever (hadn’t done so since I didn’t want to mask it,) and my husband runs down to the pharmacy to pick up the script. The Tylenol makes me comfortable, the antibiotic arrives, and it’s the one my brother was taking for his pneumonia (he had just told me about this) which has a side effect of (I am not making this up,) exploding tendons.  Actually in medicalese it’s “tendon rupture or swelling.”

Oh well, take it anyway. I sleep well and deeply until about 11:30 p.m. when I wake, take my temp, and it’s 99.9. I manage to go back to sleep until 4 a.m. when temp taking is done again with the same result. At this point, knowing my oncologist is out of town, I email my nurse with the background and wonder if maybe I should come in for a check on Thursday. Then I wait.

Thursday Chemo Day 10 – Although my temp is still elevated, it’s not in the bad area, so I wait to hear from my nurse. I’m afraid to take Tylenol again for fear of masking, so I don’t. I email my wig appointment that I’ll have to cancel since I don’t know as yet whether or not I’m going to have to go to the hospital.

My nurse calls me about 8 a.m. and suggests it would be a good idea to come in and get some lab work done, and a checkup. I’m all over that. The worrying about what is happening to my body is worse than what’s happening to my body right now.

We troop off to the hospital. My husband drives since I’m so weak, I don’t think I can do it. They take samples of my blood from my port and my arm since my port might be infected. I also have to do a urine sample in case my bladder or kidneys are the problem. I have to wait a bit since I’m a “work-in” appointment, but eventually my nurse calls me in.

Turns out it’s a good thing I came in. My white blood count is low overall, but the neutrophils (a type of white blood cell) don't even show up on the auto count. The nurse explains they will do a manual count where they might show up, but it will probably be low.

I think of what I’ve read-“If a patient has a fever and low neutrophil count (less than 500/mm3) (febrile neutropenia) they are at risk for infection they may be hospitalized, monitored and receive antibiotics.  The concern is that an infection can develop in the blood and lead to a life-threatening condition - sepsis.  So the patient is admitted to receive antibiotics until the fever resolves, and neutrophils increase to safe levels - if no source of infection is found.” A little knowledge is a dangerous thing.

Thank goodness, they don’t think I need to be hospitalized. My nurse has been emailing my oncologist with the lab results, and my oncologist thinks that I will be OK with a Neupogen shot today and tomorrow.

You’ve probably seen the TV ads for Neulasta (don’t ask me about Pharma ads!) which is the same thing, only different. Neulasta is usually given the day after chemo to prevent neutropenia from happening. I did not have a Nuelasta shot after my chemo. I don't know if that was an insurance thing, or just a wait and see how chemo affects me choice. They could give me a Neulasta shot today, but since there has to be a least 15 days between a Neulasta shot and chemo, that would totally screw up all the rest of my chemo sessions. The Neupogen does not have that time restriction, so I can stay on the original schedule.


Neupogen is a bone marrow stimulant (think Skele-gro from Harry Potter.)  The fun thing about both shots are the side effects of bone pain which is why they both will hereafter be referred to as Skele-gro.
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After the shot is administered, and I get the appointment for one tomorrow, it’s after 1 p.m., and my fragile stomach has been empty way too long. We opt to share a stir-fry at the hospital café instead of waiting to eat at home. It tastes really good.

The whole rest of the day is resting, since stamina is still kaput. Sometime in the early evening, I begin to feel the Skele-gro effects – just twinges at first, here and there, but then it decides to settle in my pelvic girdle – those nice wide bones where it can do the most damage . . . I mean good. By the time I toddle off to bed, I can barely walk. It feels as if my whole lower torso is on a ball joint, and every time it moves, it hurts. Eventually the ibuprofen takes hold, and I drift off to a very hard sleep that really does knit "up the raveled sleeve of care." You go, Will.