On Monday, chemo day 4, test showed my hemaglobin was 8.3, which is good. I had the 2 units blood and 1 unit of platelets on Friday and actually hung on to some of the blood. Unfortunately my platelets were 6. So today I took my chemo early, then went to the infusion center and got 2 units of platelets. For some mysterious reason sitting for hours tires me out. How does that work? My backside falls asleep making me wonder why at least a part of me isn't refreshed when it's over.
When I get chemo daily I stay accessed. You can close your eyes if you want, but here is my port accessed.
They just plug me in. Simple and no needles, blood or bruises......:)
While I was gone today a packet came with papers to fill out, instructions, directions and the appointment to the bone marrow transplant doctor. Whoa. Nerves and chemo do not mix! After everything I've had to do, I did not think I would be so nervous when I had to "go there". I have less than 2 weeks to deal with the nerves. I'll deal with it. I hope......
Tuesday, April 30, 2013
Thursday, April 25, 2013
My 'week off' was over as of yesterday. I started my 4th cycle. On the 18th my numbers were: hemoglobin 7.9 and platelets 11. No infusion. On Monday they were: hemoglobin 7.6 platelets 11. Again no infusion. I did not think that was so bad but I really wanted them to be good. Yesterday they were: hemoglobin 7.2 and platelets 9. White cells stay between .09 and 1.5. They were 1.3 yesterday. No improvement in the numbers. Dr. O said that I would be doing at least 2 more cycles to see if they improved. She is pleased with the bone marrow. So I have day 1 of 7 down.
I am just about ready to go and get day 2 of 7 over with. After a while without Zofran, I am back on. I was actually very sick last night.
On Saturday my eldest daughter will turn 40! Does that make her old or me old? What a conundrum!
Thursday, April 18, 2013
I'm on my 'week off' chemo. I get a week off to see if my numbers will improve. Monday (the 15th) the numbers were the same old thing. Hemoglobin 6.9 and platelets were 14. So Wednesday I spent the day in infusion getting 2 units. Today, it was again test time. After spending Wednesday getting 2 units of blood, my count this morning was: hemoglobin 7.9 and platelets 11. Only get infused when hemoglobin is 7.5 or below and platelets are 10 or under. So the next test is Monday. It takes 2 days to get blood for me because of my weird antibodies. By then, if I don't build up anything, I will be so tired.
My life seems to revolve around numbers. A frustrating way to live, that's for sure, but it could be so much worse. So I will just be grateful for the good things happening.
Monday, April 15, 2013
On Tuesday I got 2 units of blood. I was in the infusion center so it went smoothly.
On Wednesday I had the appointment with Dr. Cripe. First order of business for the appointment was, of course, a blood draw. The results were hemoglobin 8.1, platelets: 23 and white cells: 1.6. Not a great reading, for sure. We talked after the results and he said there had been no change in my blood so continuing the Vidaza was a waste of time. I was concerned that I had fallen into the AML (Acute Myeloid Leukemia) and asked if he would be able to see that in my blood tests. He commented that he would and when I asked if he thought I had he said no. Relief there. But, he said since the Vidaza was not working the option left for me was a hospitalization with chemo, I believe for 30 days. I know the odds of that being a good thing, so I was scared, but I knew I had to do it. He then did the bone marrow biopsy, which was as horrible as I remembered, and let me go home to wait for his Friday call telling me the results of the biopsy and when the new treatment would start. My 'blasts' were 14% in December. That figure put me in the 3rd stage of the disease, High Risk MDS. AML is 20% blasts. Normal is 0 - 3% blasts.
I spent Thursday getting mentally prepared for his call. I was also thinking about what I needed to get done before the treatment , prepare for the worst perhaps.
Friday morning was my 'blood day' at the center. Hemoglobin: 7.9; Platelets: 20. I know where that is going, DOWN. Same old thing............ There was nothing to do but wait for 'the call' for the rest of the day. Long day it was! No call. In my mind the dialog went like this: He had a busier day that he planned. He got called away. He was unable to get me a room in IU just yet. It was so bad he didn't want to ruin my weekend. He was abducted by aliens. . . Ok, that was a stretch. I knew he wasn't in on Saturday, so I relaxed and decided I was lucky to have the weekend.
Saturday morning I was relaxed when the phone rang. It was him! He quietly told me he had the results and they were surprising. My blasts were 3%! That is in the normal range!! He said even though my blood work did not reflect any change, the treatment had worked beneath the surface. My bone marrow had responded. He told me a Dr. Nelsons office would be calling, setting up an appointment to get ready for the bone marrow transplant.
So quick and unexpected! I will be talking to Dr. O on Wednesday and I hope my brain kicks in so I can ask intelligent questions!
Sunday, April 7, 2013
I love a rainy night. The air feels all springy and soft, and the rain is banging against the patio. 'Good sleeping weather' everyone always says. I'm afraid I took my nap this afternoon and spent too long at it. I'm going to pay for that now.
Took a zofran a short while ago hoping to at least make a dent in the nausea. I've lost too much weight in the last 10 days. Once you've stopped eating it's very hard to start again. Big surprise to me! I couldn't tell you one thing that I want to eat. I can get it in my mouth but swallowing it is another matter. I stopped watching the Food Network because my stomach would just clench at the sight of food. I love Food Network normally.
Today was the special "blood day". I had to go into the infusion center for a CBC. Blood count was 6.7, which explains the deadly tiredness that holds me in it's grip. Platelets were 27. On Thursday they were 19, and that means that I actually made platelets myself! On Thursday my hemoglobin was 7.6, which means I didn't make any blood. I have an appointment for 2 units of packed cells on Tuesday. It takes that long to get blood for me because I have so many antibodies. I have a hard to match blood, and end up with 'least likely to cause a reaction'. That means a dose of Benedryl through the port, which is a mind-blowing experience and Tylenol. Keeps me groggy for a while.
Well, anyway, I should feel stronger for the trip to Indy on Wednesday for the dreaded bone marrow biopsy. This thing scares me on 2 levels. The first is the painful procedure itself. The second is that it will say if 3 cycles of chemo/Vidaza have made any changes at all.
My laptop came. Just mine, no sharing. I haven't felt like doing much on it, but I am doing this blog post on it. The first one. This thing has Windows 8, which is not so bad when you figure it out. They should all come with a small how-to. Just one instruction on it. How to find "Start". Once you've figured out where everything is, you are ok. My problem now is how to transfer my huge files from the desktop to this one. The DVD burner refuses to work, just quitting in the middle of the burn. The old thing has Vista with 1 1/2 GB memory. A problem to solve when I am feeling better.
Tuesday, April 2, 2013
Well, Monday was blood day yet again. The center was busy, as was the lab. It took awhile to get the results. I knew my blood count was getting low but thought the platelets were fine. The result: blood was 7.8 (they only transfuse at 7.5 or below) and platelets were: 4. Again with the 4! So my Monday night was spent at the hospital, I lucked out and was put on a different floor, getting yet another bag of platelets. It wasn't a bad experience this time but, I had stayed accessed after the labs at the Center. So no one had to do anything except plug me in. I am tired of it, though. There is a bruise over my port from Fridays adventure in platelet getting. I did not bleed very much when they pulled out the access needle, which is a good sign! Now I hope they stick around this time!
The port is a wonderful thing. It's called a Power Injectable Port. It's implanted below my left shoulder. It's accessed by a needle system that can be left in for a few days or taken out each time. When I'm getting chemo each day I leave it in. Between the blood tests I have it out each time unless I have to be transfused. I seldom even feel the needle going in. Love it. No digging around for veins. The lower your blood count, the smaller your veins are. Not a pleasant way to pass time. My lowest hemoglobin count was 4.6 and I fainted in the ER. (A normal level for an adult female is 12.0 - 16.5) Anyway it was very embarrassing!
After a weekend with a killer headache I feel pretty good today. A little tired. It's sunny and looks like spring out there. My first sight at the window this morning was a rabbit out in the grass. Not a bad beginning to a day.