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
Friday, October 28, 2011
Tuesday, October 18, 2011
October 18, 2011
I have very good news. I was very concerned about the CT scan and just talked with my oncologist. He said nothing he saw was worrisome at all!!!!!
There is a small (7mm) cyst near the bowel. He said it is hollow and he has never seen a hollow cyst become diseased. The vaginal wall is not seen well on any CT scan - that is why he does the vaginal and rectal exam each cycle. He has not seen or felt anything of concern! The lymph nodes are totally unchanged. One is 18 x 11 mm; the other 12 x 10 mm. He still thinks their enlargement is the result of the surgery - even after 5 months. They have to be a certain size to be considered worrisome and there has been absolutely no change from the last CT scan. He is not at all concerned.
So now I am getting nice deep breaths. I will see him on Friday for the 4th infusion. In a way, I'm looking forward to it. I will then be 2/3 through my treatment.
My hair is about an inch long now and when I shampoo it, I actually have to style it a bit. I figure I can start training it to go the direction I want. It is coming in pretty curly. I will have the hair on my neck trimmed tomorrow so it looks as if I intended my hair to be this short.
Ever since the last infusion I have had a stuffed nose. I am using a Neti pot and it does help. I asked him if that could be a side effect of the chemo. He indicated the chemo could cause the nasal passage to become inflamed. That is most of what I am experiencing - I can blow and blow and blow and nothing comes out. It is NOT a cold. There is no fever and no colored discharge. Sometimes there is mucus and blood but that's all. He said my nasal passages are swollen - that's all.
Even though it is cold today, it's a beautiful day. We went into the RMNP Sunday to see elk in rut before the end of that season. We drove out to Moraine Park - we eventually saw a small herd over by the Big Thompson river. There were probably a dozen in this bull's harem - very disappointing. So we drove home. Yesterday we had about two dozen in our yard! No point in having gone anywhere - they were right here!
There is a small (7mm) cyst near the bowel. He said it is hollow and he has never seen a hollow cyst become diseased. The vaginal wall is not seen well on any CT scan - that is why he does the vaginal and rectal exam each cycle. He has not seen or felt anything of concern! The lymph nodes are totally unchanged. One is 18 x 11 mm; the other 12 x 10 mm. He still thinks their enlargement is the result of the surgery - even after 5 months. They have to be a certain size to be considered worrisome and there has been absolutely no change from the last CT scan. He is not at all concerned.
So now I am getting nice deep breaths. I will see him on Friday for the 4th infusion. In a way, I'm looking forward to it. I will then be 2/3 through my treatment.
My hair is about an inch long now and when I shampoo it, I actually have to style it a bit. I figure I can start training it to go the direction I want. It is coming in pretty curly. I will have the hair on my neck trimmed tomorrow so it looks as if I intended my hair to be this short.
Ever since the last infusion I have had a stuffed nose. I am using a Neti pot and it does help. I asked him if that could be a side effect of the chemo. He indicated the chemo could cause the nasal passage to become inflamed. That is most of what I am experiencing - I can blow and blow and blow and nothing comes out. It is NOT a cold. There is no fever and no colored discharge. Sometimes there is mucus and blood but that's all. He said my nasal passages are swollen - that's all.
Even though it is cold today, it's a beautiful day. We went into the RMNP Sunday to see elk in rut before the end of that season. We drove out to Moraine Park - we eventually saw a small herd over by the Big Thompson river. There were probably a dozen in this bull's harem - very disappointing. So we drove home. Yesterday we had about two dozen in our yard! No point in having gone anywhere - they were right here!
Friday, October 14, 2011
October 14, 2011
This whole process is like riding a roller coaster.
I had a CT scan Tuesday. I knew they were looking at two lymph nodes that were enlarged from the first scan. When my oncology nurse hadn't called me by this afternoon, I decided to call her. She hadn't wanted to call me. The two lymph nodes are still there - still enlarged. In addition there is a 1/4" 'something' on the vaginal cuff (where the cervix used to be). When the scan was read, the remark made was that it is most likely scar tissue from the surgery. Dr. Behbakht will read the scan itself and be able to tell us his best estimate of what is going on.
I have asked for the doctor to call me on Tuesday so we don't have to sweat this out all the way to Friday. I don't like it - have cried about it - have thought it through and have decided that I am NOT going to overthink this. I am still feeling well - still not showing severe side effects. So I am going to go with that. We will be discussing what I should be looking for in case this is a recurrence of the disease (oh, the euphemisms they use to avoid saying that terrible "C" word!). My oncology nurse reminded me that how I am feeling is more important than what is only a possibility - and probably nothing about which to worry. That doesn't mean I am in denial. I am taking one day at a time.
There is one side effect added to my list. I have distance blurry vision - and it is only slightly blurred. I know this will go away at the end of the chemo cycles. I can read and do my handwork just fine. For small handwork like tatting, Hardanger and stitching, I have used magnifying glasses for years. I can see just fine with them. Right now I am repairing a piece of Hardanger for a friend. Honestly, the worst side effect I am dealing with is the constipation. Since this happens around each infusion, I am trying to be creative about possible solutions ahead of time so it doesn't affect me for so many days when I get the infusion.
My lab work was just fine on Thursday, another indication I am doing well: BP 126/76; heartrate 64; wbc 3.7; H&H 13.4 & 40 and platelets: 247. All those mean is that even during week #2 (when numbers tend to be lower) following my latest infusion my body is recovering very well.
I hope the Dr. calls me - probably during his lunch break and doesn't wait until Friday.
At Judy's suggestion, for my last infusion, I developed and designed a table of each day of the cycle by date and by day# and a list of the side effects. I put an 'X' in the box for the day I experience that particular symptom and leave blank days when I don't have the symptom. I presented this to my Dr. and he LOVED it - said he wished all his patients would do this. It makes so much sense because if I experience a given symptom, after three weeks, honestly I can't remember when it was and for how long. So I have prepared some blanks for him to duplicate and pass out to his patients to use. He actually turned to me and said, "I don't have anything more to ask you - it's all right here in front of me! Thank you!"
I do have another piece of good news. I removed my hat for him to see how my hair has not fallen out, but has actually grown. I had a buzz cut seven weeks ago and wanted to know just when it was going to come out. He looked at me and smiled. "If you haven't lost it by now, you probably aren't going to!" I was thrilled and it is now about 3/4" long. By Christmas, I may even have a reasonable 'DO'.
It's time for me to go to bed.
On my facebook page, someone posted a saying I really liked. (Please do not post anything to reference this blog or it's purpose - thank you). I will end with this tonight:
I'm a strong person
But every now and then
I would like someone
to take my hand and say
everything will be alright
I had a CT scan Tuesday. I knew they were looking at two lymph nodes that were enlarged from the first scan. When my oncology nurse hadn't called me by this afternoon, I decided to call her. She hadn't wanted to call me. The two lymph nodes are still there - still enlarged. In addition there is a 1/4" 'something' on the vaginal cuff (where the cervix used to be). When the scan was read, the remark made was that it is most likely scar tissue from the surgery. Dr. Behbakht will read the scan itself and be able to tell us his best estimate of what is going on.
I have asked for the doctor to call me on Tuesday so we don't have to sweat this out all the way to Friday. I don't like it - have cried about it - have thought it through and have decided that I am NOT going to overthink this. I am still feeling well - still not showing severe side effects. So I am going to go with that. We will be discussing what I should be looking for in case this is a recurrence of the disease (oh, the euphemisms they use to avoid saying that terrible "C" word!). My oncology nurse reminded me that how I am feeling is more important than what is only a possibility - and probably nothing about which to worry. That doesn't mean I am in denial. I am taking one day at a time.
There is one side effect added to my list. I have distance blurry vision - and it is only slightly blurred. I know this will go away at the end of the chemo cycles. I can read and do my handwork just fine. For small handwork like tatting, Hardanger and stitching, I have used magnifying glasses for years. I can see just fine with them. Right now I am repairing a piece of Hardanger for a friend. Honestly, the worst side effect I am dealing with is the constipation. Since this happens around each infusion, I am trying to be creative about possible solutions ahead of time so it doesn't affect me for so many days when I get the infusion.
My lab work was just fine on Thursday, another indication I am doing well: BP 126/76; heartrate 64; wbc 3.7; H&H 13.4 & 40 and platelets: 247. All those mean is that even during week #2 (when numbers tend to be lower) following my latest infusion my body is recovering very well.
I hope the Dr. calls me - probably during his lunch break and doesn't wait until Friday.
At Judy's suggestion, for my last infusion, I developed and designed a table of each day of the cycle by date and by day# and a list of the side effects. I put an 'X' in the box for the day I experience that particular symptom and leave blank days when I don't have the symptom. I presented this to my Dr. and he LOVED it - said he wished all his patients would do this. It makes so much sense because if I experience a given symptom, after three weeks, honestly I can't remember when it was and for how long. So I have prepared some blanks for him to duplicate and pass out to his patients to use. He actually turned to me and said, "I don't have anything more to ask you - it's all right here in front of me! Thank you!"
I do have another piece of good news. I removed my hat for him to see how my hair has not fallen out, but has actually grown. I had a buzz cut seven weeks ago and wanted to know just when it was going to come out. He looked at me and smiled. "If you haven't lost it by now, you probably aren't going to!" I was thrilled and it is now about 3/4" long. By Christmas, I may even have a reasonable 'DO'.
It's time for me to go to bed.
On my facebook page, someone posted a saying I really liked. (Please do not post anything to reference this blog or it's purpose - thank you). I will end with this tonight:
I'm a strong person
But every now and then
I would like someone
to take my hand and say
everything will be alright
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