Day 8 - 22 (Two weeks of recovery)

I have been resting up at home, and have neglected my blog. Sorry about that! 

So here's your update--covering two weeks of recovery, starting from Monday after Easter.

The First Week Home

Overall, it was really quite nice. Each day I expected to get worse, but thankfully didn't until the end of the week as Thursday was my 41st birthday (a prime number which must have some significance to someone somewhere). I had a nice lo-key birthday celebration with my family, and as you can see in the pic below, I had my cake and ate it too. 

(I never understood why it is considered greedy to want have your cake and eat it too. Isn't that why you want to have your cake in the first place? To eat it?)

And if anyone should wonder if forty is rough, I'll have to say yes--I mean you get cancer, your hair all falls out or turns white, and you spend a lot of time in the hospital. :) 

Forty-one promises to be all uphill though...

Drug Confusion

One little snafu of the week was with my prescriptions. I was running out of the all important Vessanoid on Wednesday, and the local pharmacy said the doctor's office wouldn't let me refill it. After many calls and much running around I finally worked out the story.

Apparently,  my doctor contacted my insurance company and tried to setup some prescriptions for my maintenance period (the "phase" that starts after this, my final consolidation.) I have a "patient advocate" at the insurance company--an RN. She noticed that the dosing seemed way off, and asked their doctor to speak with my doctor. 

Well, as I have said all along, I had been told I would be taking vessanoid for a year. Not true! I take it every 3 months for just two weeks. I also will take two other maintenance drugs--one once a week, and the other every day. Of those, my doctor had given me double the dose of what I should be taking on one of, which took it to unsafe levels. 

Thank goodness for my advocate. 

Meanwhile, my doctor's office had told me none of this before I ran out of Vessanoid. I managed to get the Vessanoid over-nighted in the mail, so I only missed one dose.

The Blood Goes Down, The Blood Goes Up

By Monday of the second week was my low-point for the blood. I had a white cell count of .2 and a 6.6 hemoglobin. I had also managed to develop a significant cough that wracked my body and kept me up nights. On Tuesday I had a transfusion--two bags of Red Blood Cells and one of platelets. I managed to get all this without getting a fever--so all was well--or so I thought.

Vision Trouble

On Wednesday (and maybe it started on Tuesday?) I started having blurry vision. My eyes were sensitive to the light, and it was a little difficult to focus well enough to read. 

By Thursday I called my doctor about it, and Friday when I saw her for my checkup.  

After responding to my compliment about her cheery skirt by telling me she was using it to disguise the fact that she was grouchy because she was going to be on call that weekend, we got down to business. She told me she hates being on call. I had a few questions for her and eventually, we talked about my vision. She said: "People sometimes get blurry vision from chemo, and no one knows why." She then told me it could take up to three weeks to correct itself. 

I had another aspect to my vision problem though that she was not familiar with. If I close my left eye, in my right eye I had a spot on my vision--the kind of thing you might get for a moment if you rub your eyes, but it wouldn't go away--it was blocking my view.  She did not know about this, so suggested I see an Opthalmologist.

That was all on Friday. It was not so debilitating that I couldn't get around obviously, but I had taken to watching TV with one eye closed. On Monday, I saw an Opthalmologist.

Vision Quest

The Opthalmologist was really nice. She shares an office with her brother ("Do you have an eye or heart appointment?") near the hospital.

I have not been to an eye doctor since I was a kid. We began with the ole eye chart test. I started by trying to read it with only my right eye. While a few letters on the left side of the chart were legible, most of them on the right were obscured. If I looked away, I could catch a glimpse of the letters sometimes, and they were clear, but basically something was blocking my vision. When I tried with my left eye, I could read the whole chart without any trouble.

(Incidentally I am writing this with my right eye closed.)

All the gear and resting your head in straps while they shine bright lights in your eyes was sort of new to me. She did a lot of that, and a lot of looking at my eye through lenses. She quickly ruled out cataracts and glaucoma, which was good to hear, and then discovered what it was.

Pre-retinal hemorrhaging.

Sounds scary, no? Apparently when my blood counts were so low, I had blood hemorrhages in my eyes. there are several little hemorrhages in both eyes, but they only obscured my vision in my right eye. The good news, is they should go away on their own as my blood levels improve.

I have an appointment in 10 days to check them though.

How, YOU doin'

At this point, I am doing pretty well--feeling a little stronger every day, and I hope to start some minimal exercising this week--as in walking and maybe a few very light weights to build my strength back up to normal.

I am definitely past the worst of it. Weakness, bad eyesight, etc. can sometimes be frustrating, but I know everything from this point on should just keep getting better.

On Friday, I will get another blood test, and am optimistic that that will mark the end of this consolidation. Once its done, I start maintenance for a year--which basically consists of pills and doctors visits.

At some point, I still need to have my gall bladder out, and get this port out. I'm hoping to do both at the same time.

Thanks for Reading!

If you have made it this far, you have read through a lot! Reading all of this may have been as difficult as going through it. :)  You know how wordy I am...

I really appreciate that you kept up though, and went through this journey with me.  It meant and means a lot that you were interested and willing and I am so pleased I was able to reach out to friends and family this way. It has been a wonderful way for me to document it, process it all, keep myself occupied, and share it with those who care.

I will continue to update this blog occasionally to keep you updated, but, like this post--they may be few and far between as, hopefully, there will be a lot less news.

So, thanks again--stay well--and that, for now, is that...