2 August 2011 – It has been a tough few days. As always, Cathy was OK on Wednesday when she got the treatment and Thursday the day afterwards. You always think you are going to have an easier time this treatment. Then came the stomach problems; gas, shakiness and tiredness and it has lasted for five days. She looks a little better today, more color in her face and her voice is a little stronger. She may be starting to come out of it. Her BP has been up and down. Not so high as to be troublesome, but high enough to give an occasional bit of blood in the nose. The last few days the BP has been 145/65, 134/58, 144/54, and 150/74. It is always high, but compared to the earlier 180s and 200s, it is acceptable.
3 August 2011 – Another strange day. She started off fine and once again I figured the worst was over for this cycle. It is 7 days since the treatment. Her BP was the best since we started medication at 119/61 (done by machine at CVS). I am not sure I trust that machine. On many days I take the BP and we have it done at the drug store. I am consistently at least 20 points higher than the machine. About 4 p.m. it all went downhill. She had cramps, heavy gas, diarrhea and even a backache. She said that this was one of the worst days she had. So, now we wait and see what tomorrow brings.
4 August 2011 – Another bad one. It is 8 days past treatment. She had all the symptoms of yesterday, lots of stomach distress, heavy gas, and tiredness. I took her BP twice and it was 144/64 and later 150/54. This is better than at first when the BP was up around 200. The drugs are working, but the BP is still not really under control. She felt a little better at about 10 p.m.
5 August 2011 – Nine days since treatment. Her BP was up to 180/72 early in the morning and her nose was bleeding somewhat. I gave her one of the emergency BP pills we keep for such times. Within an hour it was down to 130/60. However, perhaps because of the rapid decrease she felt dizzier than usual. She slept for two hours during the day. She hasn’t been able to eat much. She does not throw up, but she has little appetite and the stomach discomfit makes it difficult for her to eat. Once again, she felt a bit better by nightfall. Dr. Z told me that the symptoms would not change much as we had additional treatments. I thought when we started that each one would be a little worse as the poisons built up in her body. I think I am right. Each treatment seems to be harder on her body and take longer to recover from.
6 August 2011 – She seems to feel better today. I never trust that because she often starts the day off well and then goes downhill rapidly. She has a little bleeding from the nose and that always points to a high BP.
9 July 2011 – We saw Dr. D today about the high blood pressure. It is now 13 days since treatment and Cathy is just getting back to normal. Each treatment takes a longer time to return from. Every day her BP starts around 150 to 160 and after medication drops to 140 to 150. Her BP was 160 this morning, so although it is not life-threatening, it is still high. Dr. D literally sat for about 5 minutes with blackberry in hand and notebook computer on his lap considering his next move. He looked stymied. I then said “We are taking Atenenol in the morning, but when she wakes up her BP is through the roof because it has been 24 hours since she took a pill. Maybe we should take another pill before bedtime to keep the level of medicine up in her body and not allow the BP to rise overnight.” He thought about it, and then said, “That's a pretty good idea, let's try it.” It is amazing that he is so reasonable and willing to try a patient's suggestion. Most doctors would have had a fit at a suggestion from the patient. So, Cathy will now take one Atenenol in the morning and a second in the evening. We will see tomorrow how that works. We were warned that it might make her tired, and since she took a nap today, I don’t know how much more tired we can take.
17 August 2011 – There hasn’t been much to report. Now that we have doubled the blood pressure medicine things seem to be much smoother.
Cathy took her fifth chemotherapy treatment today. One more is scheduled and we hope they keep to that schedule. The IV was slow and took close to three hours.
On the bright side, her heart, lungs and blood pressure were all fine and the doctors were very happy. On the bad side, her red blood count was down to 2.71 million and the hemoglobin was down to 9.1. As I remember it fro my lab technician days in the Air Force, the hemoglobin minimum for women is 12 so that means she is down a good 25%. I wondered how they could fix that problem and they gave us two choices. The least scary option was three shots of a drug that would stimulate the bone marrow to make more cells...but also stimulate the cancer in the same way. The government does not like this drug and we would have to sign a waiver. Option two is a blood transfusion. That is always a danger with HIV and Hepatitis, etc., but you hope that the blood is thoroughly checked. That is a one-time deal and Cathy would walk away with a load of concentrated RBCs. I don't like either option but she has been light headed and very weak (likely due to the low RBC count) so it seemed we have to do one of them. We decided on the transfusion. She will get it next Tuesday at 0800. Hopefully, she will be full of energy (and oxygen) shortly afterwards.
20 August 2011- This has been one of the easier post-treatment periods so far. We are on the doubled blood pressure medicine and she is still wearing the sea-sick wrist bands and as a result she is in pretty good shape. Three days after the treatment and there has been no nausea, tiredness or light-headedness. I asked her how she felt this morning and she said "shaky." That could mean almost anything so I told her to be more specific. It seems that her hands are trembling, so I think instead of shaky we will say she has "the trembles." About 11 a.m. she has some gas and some heartburn, but other than that so far this has been very easy. By the afternoon she was bothered by gas and stomach discomfort so our luck has run out. She napped for two hours and was very tired and went to bed early.
21 August 2011 – We are back in the "crappy" zone. Cathy is very tired and had to nap about 2 p.m. She recovered a bit by evening but was very tired and went to bed about 10 p.m. As usual, gas, stomach discomfort and some blisters in her mouth.
22 August 2011 – We are back from Florida Hospital in nearby Altamonte Springs. She is very tired and weak today and suspects her red blood count may be under two million. We went over to get her blood typed and they are very careful. They put a band on her wrist today that will be checked tomorrow to make sure they have the right person. We go in at 0800 and get two pints of packed RBCs. Like the Olympic athletes, we are doing a little "blood packing." I just hope that with the addition of all those extra red blood cells she gets some energy and vigor back. She looks like walking death at the moment. She slept poorly last night and napped today from noon to about 2:00 p.m. She should get a second wind about 4 p.m. That has been the pattern so far.
23 August 2011 – We went to Florida Hospital for the two pints of packed red blood cells this morning. It was not a great experience and I do not think I will use this hospital again. As usual Cathy's blood pressure went up during the treatment. Instead of taking care of it they called me at home and asked me to bring in Cathy's medicine. Apparently, they did not want to bother a doctor to write an order for some pill. This really annoyed me. It is a hospital; they do have doctors, what would they have done if I was not available? Cathy's transfusion took six hours instead of four. She seems to have more energy. I have asked her if she notices any difference and she says she does not, but she is moving faster and talking louder. That is always a good sign. I will keep an eye on the BP tonight and tomorrow and see if we actually have a problem.
24 August 2011 – Things might be looking up just a bit today. When Cathy got up this morning with her two new pints of blood I asked her how she felt. It is tough to get an answer and it is all relative anyway, but I asked "are you better, worse, or the same as yesterday morning?" She said "better." By 3:30 p.m. she had not tired, and usually, that occurs about 2 p.m. It looks like the transfusion has been a success. She is still moving around briskly. The next few days I will take Cathy's BP on a regular basis so I have something to tell the doctor when we see him on the 31st. Her BP still is erratic so we may have to find a brand new approach to the problem. Her morning BP was 180/76; later in the day it was 153/68. I am not sure her present medication can do the job. In general, I think we showed some signs of improvement today. I don't like to get excited until we see two or three days, but it looks promising. Cathy went bowling with the kids tonight and although I asked her to just bowl two games, she bowled three.
31 August 2011 – I have added no comments all week. The two pints of blood were miraculous. She has been acting like a young girl; full of energy. I almost wonder if a lot of the problems were caused by the anemia and not the chemotherapy. Her blood pressure is still not under control and she has had nose bleeds on and off all week. We saw our general practitioner today and he decided to add Kapvay ER 0.1mg (Clonidine HCL) to Cathy’s regimen. He said that had been a regular drug for high blood pressure in the old days but with all the new medicines it had fallen into disuse. It works so well on Cathy that we will take it twice a day. I worried about the amount of drugs so he removed one of the Atenenol tablets, returning her to the old one tablet in the morning. There is one thing that I wonder about. I have been blaming the nose bleeds on the high blood pressure. Even after taking the Kapvay, she still has some blood in the nose. Reading the side-effects of Avastin again I see that nose bleed is the first problem listed and high blood pressure is the second. Perhaps the nose bleed is simply an effect of the drug and not necessarily an effect of the high blood pressure. That is something to ask about.
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