Transfusion 1; Merle 1

Last Friday I went in to try and get another transfusion of 2 units of blood.  Well the nurses there doped me up with all kinds of meds to avoid allergic reactions which just knocked me out; BUT I was able to get the 2 units.  They helped some, but I think I needed all 4 units because I still have trouble taking deep breathes these days (something to talk with the docs about).

I’m trying something adventurous this week.  I am in Montreal to meet with a grantee and do some analysis.  The adventurous part is all the travel that was involved.  Oy, I could remember when a simple plane trip was just a blip on my radar screen.  Yesterday, by the time we got to the hotel, I was so tired, I ended up napping for an hour.  Good thing I’m only here until Friday.  I miss the family.

The nausea seems to be under control at the moment and despite a less than restful nights sleep, I’m ready to get to work.  The only challenge is that my grantee is in another hotel and we are having some challenges connecting to make a plan for the work we want to do.

So I apologize for not updating sooner.  In general things are going well.  I am still suffering from nausea pretty regularly, but the meds that I have help to battle that.

Just as an FYI, it is likely I will not update the blog next week as I will be spending time with the family while the kids are on spring break.  Hopefully there will not be anything to tell you about, anyhow.  My next appointment with the docs is April 12th, so hopefully I’ll have something to report after that meeting.

Until next time.

Merle

Transfusion 1; Merle 0

So per my last post, MaryBeth and I went to the hospital to get me transfused. Unfortunately, after about 30 minutes I developed a case of the chills, indicating that my immune system was trying to fight off the new blood. What we don’t know if the problem with my and my system or something in the blood. The hospital is checking out the blood and hopefully we’ll be able to get it to work next week.

Merle

Better late than never

I told everyone that I was going to have a doctor’s appointment on Tuesday of this week, but my oncologist was going to be out of town and he wanted to make sure we had a chance to ask him questions if we had them so he rescheduled my appointment to today.  Actually, the week started out with an Email from Dr. Kauh asking to have a phone call with MaryBeth and me.  Did I get worried that this was the first time he had called us, of course not.  Seriously, I was pretty nervous about what he had to say.

The results of my scans indicated that the tumor grew instead of shrunk as a function of my chemo.  It is now 4.1 cm big and as best as we can tell still growing.  My labs revealed another issue, however; I am anemic.  I was going to start a new chemo regimen today, but instead I will be getting 2 units of red blood cell tomorrow (Friday).  And then another 2 units next Wednesday.  But they don’t want to start a new chemo until my red blood cell count is higher.

On the upside, my weight was up this week.  I was 181 today, so there is that.  At any rate, I wanted to let you know what I learned at the doctor’s office today.  More as it becomes available.

Merle

Sureal

So I had my latest trip to the hospital on Tuesday; Dr. Kauh was sending me to make sure I got some fluids into me to avoid my getting dehydrated.   In general, I am feeling better and better every day.  The nausea I had been experiencing has reduced quite a bit (of course, the reduction in nausea might have to do with all the anti-nausea meds I am taking: I have a scopolamine patch, I take Zofran, Reglan, and Ativan; all of which help with nausea).

The surreal aspect of all this is my weight.  For the 3rd week in a row, my weight was around 175lbs.  I haven’t been 175 since middle school.  On Tuesday, I had to fill out some paperwork for my MRI scan and it just felt weird writing that my weight was 175.

In addition to the overall weirdness of acknowledging being a weight I haven’t been at for over 30+ years, I am also struggling with the lack of overall strength deficits I am experiencing.  People likely don’t notice how thin I really am, because of all the layers of clothing I wear.  But, at night, when I get out of the shower and look at myself in the mirror, I notice how small my arms and legs have become and the extent to which I have bones around my shoulder and neck are so well defined in the mirror.

I have to say that I am really enjoying the chemo holiday I have been taking and, truth be told, I am loathe to go back onto chemo this week.  My quality of life has improved tremendously over the past 30 days and I just cannot bring myself to want to go back to a situation in which I am vomiting 2-3 times a day.  I would rather not take chemo (and deal with the potential consequences not doing so might have on my survival) than begin taking chemo again and being miserably sick during that time.

I am refraining from making any final decisions until  I meet with the doc on Tuesday to go over my latest labs and the scans from last week.

At any rate, that’s what’s happening on my end.  As always, I appreciate all the support I have received through this blog and in “real” life.  I cannot tell you how much I appreciate those people who come up to me and ask how I am doing today.

More later!

Merle