I had my fourth infusion last Friday. The infusion itself went very well, although there was about a half hour of restless leg syndrome. Luckily it did not last long. This was with the Benadryl cut in half. Darn!
The frustrating part of the day began when we arrived. Lab work usually takes about 15-20 minutes. This involves accessing the port, and drawing blood for the usual CBC. The nurse would not listen to me. I know how the port in MY body needs to be accessed. I have to be tilted back a little. She said she knew how to access and would do it her way. Well - guess what didn't work! She tried several times - finally decided to add TPA because there had to be a small clot at the end of the catheter. TPA is Tissue plasminogen activator (abbreviated TPA or PLAT) is a protein involved in the breakdown of blood clots. For that addition, I had to sit a half hour before she could draw that out. So, she decided to draw blood the old-fashioned way. She couldn't get it. After trying twice, she went and got someone else. That didn't work either, so she got a 32-year veteran ER nurse to come and try. She got it - lickity-split - first try. After sitting for that half hour, the first nurse was able to access the port while I slid down in my chair to get into a tilted position. It worked. I had been in there 1 1/4 hours! Grrrr. I will ask for a different nurse November 11.
Then I was taken back for weighing in, height and BP. Guess what? My BP was high! While I tried to meditate (not very successfully) to get my BP down, she took it again and it was within acceptable range which meant I could receive the infusion.
I was taken to the office for the Dr.'s appointment. When I was ready for his examination, I waited and waited and waited - for a full hour! Finally, Melody (the weigh-in nurse) came by and saw that the nurse had not flipped the flag that says I am ready. She went off, corralled Dr. Behbahkt and brought him back to the room. This was a total hurry-up-and-wait day. However, the doctor reassured me that the CT scan is perfectly fine - absolutely nothing to worry about. That small hollow cyst is on my abdomen (not near the bowel) about where my belly button is and is of no concern. He did a thorough internal and I am fine! He and I discussed the frustration of getting incomplete information. From now on, he will call me personally after a CT scan when he has had a chance to read it. I can also ask for a disc of the scan to send to Dave's cousin, Dr. Fallah, who has volunteered to read them and tell me what she sees. That was actually pretty cute on Friday. I had thanked Dr. Behbakht for sending the scan to Dr. Fallah (Juliet). He said he was absolutely fine with a second opinion. Then he looked kind of sheepish and said, "I hope she agreed with me." I laughed and said she had.
Then I went into infusion. The good news is that at Judy's suggestion, I decided to monitor when the RA symptoms go away. This infusion, by the time we left at 5:30 my knees were fine - pretty quick, eh? Now, a week later, they are still fine.
While I was in with the Dr., I told him I had had to have a haircut. I went Wednesday just to have it trimmed around the ears and at the nape of the neck. Now everything looks purposeful. Dr. Behbakht said he had had a haircut, too, but mine looked cute! I have now ventured out with friends without any scarf or wig. Everyone likes my hair and it is really growing in - curly!
I do have some side effects due to the accumulative effect of the chemo. I still have sinus congestion but can take Sudafed PE, Sudafed or Allegra for it. With the Neti, it is tolerable - something I can live with. I am also showing fatigue and general lack of energy. I still get up and dressed but can fall asleep pretty easily. When I blow my nose I often get blood. This, too, is the chemo. And my voice is a little hoarse at times. So far no neuropathy in either toes or fingers. That is a relief. I also still have the blurry vision. My eyes get very tired easily even when reading.
My lab work from yesterday was as expected - all numbers looked good except the platelets which are generally down a little during this first week. It is expected and will probably show more satisfactory numbers next week. My BP yesterday was 134/84 with a heart rate of 64.
I also have no taste buds to speak of. When I can smell food, it smells just fine, but when I taste it, it kind of all tastes the same. This is not very appetizing. So I eat because I know I have to.
We had a real winter storm this week. It began snowing Tuesday evening and ended mid afternoon Wednesday. We got somewhere between 9 and 14" in Estes Park. It is heavy and wet. Judy got as much in Fort Collins but also lost power. Adam drained the water pipes and power was out until 6:45 pm last night. They were able to stay with Adam's parents, Fern and Alan, also in Fort Collins, but with power. Today Judy is catching up on laundry and putting a load or two through the dishwasher. She agrees that it is amazing how we take certain things for granted - like electricity!
Next infusion: November 11
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