15 September 2011 – Cathy had a terrible time yesterday. She had a stomach ache and diarrhea and nothing helped. I called Dr. Z and he called back and told me to bring her in immediately. I told him I wanted her checked for blood in the stool (it has been black) and I wanted an antibiotic because we ate at a Chinese buffet three days ago and it could be food poisoning. At first he just prescribed a strong antacid, but perhaps because of my insistence he then prescribed an antibiotic too. I felt good. I like it when the doctors listen. He walked out, returned and said “it could be diverticulitis too.” Curiously, Cathy has had that in the past and once was hospitalized for three days. We used to joke that she spent three days in the hospital, passed wind, was cured and sent home. We went straight to the drug store and filled the prescriptions. She took them immediately and within two hours started to feel better.
16 September 2011 – It is one step forward, one step back. Taking the medications, Cathy feels a little better. She wakes up with no pain and is fine until she eats something. Today she made a shake with a banana and before she was done her stomach was bothering her. She has a little gas, and our old friend the nose bleed is back. Even though her blood pressure seems to be under control, that damn nose bleed keeps reappearing. She is now packing her nose with Vaseline trying to stop it. Sometimes it works. This is nine days since the last treatment and she should be coming out of it by now. This stomach problem has thrown the schedule out of whack. She had a little soup for supper, but not nearly enough to keep her healthy. She says that right now her stomach doesn't hurt, but she can feel some spasms from it, kind of like tremors. It would be nice if this was the last gasp of the virus or whatever it was. I sure would like us to be back on track tomorrow.
17 September 2011 – She was up at 0600. She said that she had been up for over an hour and thought it was because she was hungry. This bad stomach is interesting. First you don't eat much and so last night she had soup but hardly touched it. Then, it wakes you up because you are hungry. She made a milkshake with banana again this morning but yesterday this had caused her some pain. So, I told her to just drink a mouthful, and then push the glass away for about two minutes. Perhaps, if she drinks just a little bit at a time slowly it will lessen her reaction. This has to be about day 5 or 6 of this stomach problem, so I would think it is coming to an end unless it is something worse than we think.
18 September 2011 – We are in a regular routine with Cathy now. Every day she gets up and says that she feels good. She then proceeds to eat breakfast and her stomach hurts. The obvious answer is not to eat breakfast, but I don't think I can ask her to do that. She was so perky this morning that she thought the stomach problem was gone. She usually gets her second wind in the afternoon and goes out for some quick shopping, and instead of coming right home, she stays out for maybe two hours. So, when she gets home she is hyperventilating and can hardly move. This has been the pattern the past few days and it is annoying. In the latter case she should time herself and not be out in the heat more than 45 minutes to an hour. You cannot tell her that because she says, "The reason I am out so long is that I am moving very slow." I am left just waiting it out until this stomach problem is history and she bounces back from the last treatment. It is 11 days now and she still is not right. After lunch she complained of a bad stomach. Son Steven says he is having the same symptoms, so maybe it really is a flu going around. I felt good when Steven had the same symptoms, because that meant Cathy’s problems are not food poisoning, drug after-effects or diverticulitis. It is probably the flu. She napped after breakfast, and then got her second wind about 2 p.m. and decided to go out to buy dinner. I told her to get back here quick and not overdo it, but it is now about two hours later so as always she has overdone it. She will come home exhausted any minute now. This is getting monotonous.
19 September 2011 – This morning started off pretty good. Cathy got up and had no pain, although she said she only slept about an hour last night. I am tempted to tell her to stop taking the antacid and antibiotic as it now seems clear that her problem is stomach flu and neither of those drugs can help with the flu. The usual remedy is sleep and liquids. She only has two days left, so I think I will probably let her use them up, even though I believe they are worthless...because I could be wrong. It is like walking a tightrope. It is now day 12 after treatment and last time it was 13 days to normalcy. Of course, each treatment seems to linger on a bit longer. I think the poisons build up in the body, although the doctor said they did not. I trust my statistics over his theory. She wants to go shopping and I reminded her to move slow and not wear herself out. The pattern has been to wake up strong, then go downhill quickly. It would be nice to break that pattern today and not have that sudden descent that causes her to sleep for two hours around noon. She got through a light breakfast without any return of stomach discomfort. By noon she was bleeding from the nose. Bright red fresh blood. We could not stop it with pressure and ice. We called the cancer doctor to ask if he had any special remedy. The drugs affect the veins to stop flow to the cancer. Apparently they mess with the veins in the nose too. Dr. Z didn't get back to me until about 5 p.m. He said, “The drug Avastin causes the nosebleed,” which I knew already, and “We may have to see a nose doctor and stop the Avastin.” I imagine they might want to cauterize the nose, but I don't think we can go off the drug because that is what is beating the cancer. She pulled a clot about an inch and one half long from her nose just before bedtime. I think it must have been down her throat, perhaps dripping blood into her stomach and causing some of the stomach discomfort. I don't know. It is out now so maybe the nose will heal overnight; otherwise it is an eye, ear, nose and throat specialist tomorrow.
20 September 2011 – Cathy feels better today. It is now 13 days since her last treatment and the last time around she came out of it on this day. There was no nosebleed this morning. She still had some dizziness and shortness of breath when standing or walking quickly. I told her not to blow hard or put any pressure on the nose, and if we get lucky and get two weeks without further problems, then we talk about the Avastin with Dr. Z at our next meeting. It is a constant tightrope to keep her body healthy and yet not interfere with the cancer drugs that are doing their job, but just beating the hell out of her.
21 September 2011 – Cathy seems fine this morning. No nosebleed or stomach problems. It is treatment day +14 and she should be out of the after-effects by now. We visited her general practitioner Dr. D and he checked her BP and was very happy with it. He said that all the other problems; the light-headedness and the shortness of breath would have to be discussed with the Cancer doctor. I knew that already, but sometimes Cathy has to hear it from a doctor. He asked her to come back in a month to check her old cholesterol problem and her liver function. Cathy asked to lower her aspirin intake and he told her she could take two of the small 81 mg pills instead of the massive 324 mg pill. She thinks that may help her stomach.
To conclude, this first very difficult series is over. There were six treatments, each three weeks apart. Each one got progressively worse. After the first treatment it was eight days to recovery and after the last it was 14 days. In addition, the problems got worse; from some mild discomfort, gas and mouth sores at the start to diarrhea, lightheadedness, hyper-ventilation, nosebleed and weakness after the last one. She now goes on maintenance. We know that the drugs will be less severe, but we need to know if the Avastin will still be given in the same dosage or slightly smaller. That seems to be the main culprit. The first maintenance treatment is two weeks away. We are hoping for some much less severe after-effects.
23 September 2011 – Cathy’s full recovery has been rather disappointing these past few days. It is over two weeks after the last treatment and she should be 100%. However, she still hyperventilates very often when standing up or walking and the nose bleed still makes an occasional appearance, although very light compared with a week ago. I expected her to be fine by now but that has not happened. She is still felling some after-effects from the sixth treatment.
26 September 2011 – Cathy seems weak today. This is very aggravating. She should be back to 100% by now but she still has to stop and rest, hyperventilates and says her legs are very weak. We see the doctor in two days and we will really have to discuss this drug Avastin in depth. It beats the hell out of cancer but seems to be doing the same thing to Cathy. We will see if it can be replaced by something almost as powerful, and try to get an idea of how long this maintenance period will last. I am not sure we can answer any of those questions, but it is very troublesome to see her so weak when she should be mostly back to her old self.
27 September 2011 – Cathy is weak again today. We have never had this problem so long after a treatment. She is weak and having trouble breathing.
28 September 2011 – We are off to the oncologist in about 30 minutes. We had a really tough week with Cathy dizzy and hyperventilating, sometimes unable to take a deep breath. Right now I am motivating Cathy by saying, “Would you rather have leg cramps or die?” Of course, that will only work for a while; if the pain gets too bad sometimes dying doesn't seem so awful, so we need her to start feeling better. We should know a lot more by noon.
Later - Good news and bad news. We only saw Doctor Z today to talk about future options, but when they took Cathy's blood her white count was 2.9 which is about 1/3 what it should be and makes her easily prey for infection. Her RBC was 2.14 which is about 1/2 what it should be. So, Doctor Z sent her immediately for two pints of packed blood. The bad news is that she will be in the hospital for the next 6 hours or so, and the good news is now we know why she was hyperventilating and dizzy. It wasn't flu and it wasn't blood pressure; it was plain old fashioned anemia. She wasn't getting any blood to her organs. Last time we got two pints she felt terrific. I am hoping for the same result today. In the meantime; there will be no treatment next week. They will check her blood in two weeks and make a decision in three weeks. Dr. Z also wants another PET scan to see where we are at with the treatment.
29 September 2011 – Yesterday had to be one of our worst days. Not because of any great pain or discomfort, just because it was extremely long and tiring. We were supposed to see Dr. Z yesterday at 11:15 and probably be out of there on our way by noon. Instead, he wanted an immediate transfusion. The last one we had was scheduled and I remember being very annoyed that it was almost an hour wait before we got the blood. I swore never to go back to such an inefficient place. This time there was no schedule and they apparently had to get the type B blood from somewhere else. It was four hours waiting for the blood to arrive. It was well after 3 p.m. when the two pints of blood reached the hospital. Cathy was on the IV until about 9 p.m. That is 10 hours in the hospital.
It had to be about one of the worst days we ever had. We got through it somehow, and I expect today to be much better. It cannot be any worse. We go back in two weeks to get blood drawn and see how things are in general. We consult with Dr. Z in three weeks and then we will discuss the coming drug regimen. In the brief time we were there yesterday he said we might drop from three drugs to one (preciously he said two) and he feels the maintenance period of one visit a month might be for one year. We are not sure exactly what that means, but we would like to think that maybe it means cancer-free in a year. Of course, he did not say that.
30 September 2011 – It is the end of another month. Cathy seems in good shape today. The transfusion worked wonders, although it doesn’t seem the change is quite as great as last time. One good thing that came out of all this is that we now know the signs of anemia; light-headedness and hyper-ventilating. We will not forget that. I worked on the schedule for the coming month. We have doctor’s appointments and a few lab appointments where they will be putting a needle into Cathy. I am trying to make a nice pattern so she won’t get stabbed too often during any one week. So far the pattern looks like this:
October 12 – Draw blood for Dr. Z for CBC to see if transfusion is holding.
October 14 – Have PET scan to see status of the tumors.
October 19 – Consult with Dr. Z to discuss results and future chemotherapy treatments.
October 24 – Draw blood for Dr. D. to check on cholesterol and liver function.
October 26 – Consult with Dr. D to see if cholesterol and blood pressure drugs are working.
If an additional chemotherapy treatment is scheduled we will have to fit it in somewhere.
