June - More blood pressure problems

1 June 2011 - Cathy is feeling pretty good today. It is 8 days after chemotherapy. It will be 8 days again when oldest son Peter visits from California on 23 June, so unless the poison builds up in the body and she has a worse time with the second treatment, I am hoping that means that she will be mobile and feeling good when he arrives. I hope to do Harry Potter at Universal Studios with him so it is important that she has some strength. She mentioned today that her arms felt weak so I am going to buy some 5 pound dumbbells for her today and show her how to work biceps and triceps.

4 June 2011 – This has been a pretty good week. After the first 5-6 days, Cathy seemed to rebound and there was little effect of the chemotherapy. She has her appetite and is moving around well. I have been giving her one cup of coffee each morning and will cut her off the day before the next treatment. Another problem arose about 1 June. She started to notice some soreness in her mouth. By 3 June that was full-fledged sores and pain. We called yesterday and got a prescription for 6/03/11 Lidocaine/Antac/diphe mouthwash. This should numb the pain and cure the sores. The main problems connected to this treatment seems to be nose bleeds, high blood pressure, mouth sores and weakness.

9 June 2011 – Cathy has been feeling very strong this week. The mouth is still a problem, thought the mouthwash works very well. We walked this morning and she got ahead of me and gave me a workout. Of course, the next chemotherapy treatment is just 6 days away and we will have to see how she reacts to that. The big question is will the recovery be the same the second time, (about 5-6 days) or as the medicine builds up, will the problems be greater. Very scary.

15 June 2011 - I cut off Cathy's coffee this morning and made sure she took her blood pressure pill so hopefully we won't have a fiasco like three weeks ago when they had to stop treatment because the BP went way up. I will keep her relaxed all morning and then we report at 1:30 p.m. for 3-4 hours of treatment. She is so strong right now that it is shocking. She almost seems stronger than before the treatment. That could just be adrenaline I guess. She goes out walking a few miles and she motors. I can hardly keep up. We are hoping for the same results as last time. If all goes well, she will feel crappy from tomorrow to about next Monday or Tuesday and then rebound and be able to run around like a mad woman. That may be too much to hope for, but that is our goal.

When I was an EMT they taught us that the circulatory system was a closed system. If you lost blood, the BP went down and you went into shock. I suspect much of the problem here is just the opposite. They have reduced the size of all of Cathy’s veins and capillaries with Avastin but the blood is the same. That would drive the BP very high I would think, and cause capillaries in the nose to burst.

This was the second chemotherapy treatment. It went fairly well though it was 3 and 1/2 hours long and we were the last ones to leave. We made the next appointment earlier and instead of 1:30 p.m. it will be 10:45 a.m. Cathy’s blood pressure was very high again, about 190. The nurse recommended we see the doctor about increasing her blood pressure medicine or having a special one for time of stress. She had a slight headache and took a Tylenol.

16 June 2011 – Cathy was full of energy and running around today. I wish she would take it easier. She had those mouth sores just as she had after the first treatment. She said they were worse this time. She was also very gassy. After being active all day, she said at about 10 p.m. that she was getting tired and dizzy. I think tomorrow will be a rough day.

It occurs to me that if every chemo therapy session will have the same results, we should watch the symptoms more closely. Last session there were 5-6 bad days. Let’s be more specific. Dry mouth, painful mouth sores (mouthwash), medium gas, some tiredness, BP 190.

17 June 2011 – Medium mouth sores (mouthwash), some shakiness, heavy gas (took a pill), some tiredness (took nap), some constipation, BP close to 200.

18 June 2011 – Two headaches (took Tylenol and nap twice), some wheezing, weakness, pain in nose and some blood when blowing nose, BP 200.

19 June 2011 – Woke up with headache and took Tylenol. Complained of arrhythmia in her chest and her blood pressure has been so high lately I decided we could not wait until tomorrow to see a doctor. I took her to the emergency room. Her blood pressure was so high the mechanical blood pressure machine could not read it. They had to do it by ear and it was 257. They put her on some Clonidine HCL (two 0.1 pills) and after two hours it was down to a respectable 147/47. It brought the diastolic down below normal. They gave us a prescription for six additional pills to be used singly if her blood pressure climbs over 170. I tested her at 9 p.m. and she was 147/80. Her white count was 6.3 and red count 3.77. Hemoglobin 11.1

20 June 2011 – We saw our general practitioner Dr. D today. He said that her current blood pressure medicine (Atenenol) is a very low dose (5 mg) and some patients take 10 and 20mg. If they knew it was a small dose, I wonder why they didn't up it sooner. The doctor decided to add a calcium blocker called Amlodipine Besylate 5 mg to her medicines. He thinks that working in conjunction with her Atenenol that will solve the problem. I hope so. Her BP was so high yesterday I am amazed she didn't have a stroke.

21 June 2011 – Cathy was a little better than 50% today. She did some shopping and moved around well so I am hoping that this is the last day with a hangover from the treatment. She had some clots in her nose this morning but I told her the medicine had probably used itself up overnight and to take her BP drugs first thing in the morning. Later in the day she said she was feeling better.

26 June 2011 – Cathy had a bad nose bleed today. Her GP, Dr. D, had added a calcium blocker hoping that this would stabilize the blood pressure. She was bleeding fairly badly today so I checked her BP and it was 180 / 130. I still had that emergency medicine clonidine HCL, and since the magic number of 180 had been hit, had Cathy take a pill. I will call Dr. D tomorrow and try to get him to raise the dosage on the Atenenol. She is showing none of the symptoms I was warned about, but this continued high BP is very troubling.

27 June 2011 – I called Dr. D and he agreed to raise the Atenenol to 100mg. Until Cathy gets stronger pills she will double up on her 50s. I called Dr. Z and reminded his secretary that he wanted an X-Ray to see if the treatment was working, but I had no appointment yet. I also mentioned the high BP problems and asked if there was something similar to Avastin that would not push the BP up so far. She was a bit better today, 164 / 86. Dr. Z called me back and said that with all its problems, Avastin was the best thing on the market and we would have to live with the problems it caused.

May 2011 - the fight continues

19 May 2011 – I got Cathy up at 0630 this morning and we left for South Seminole Hospital. I like that place, they are very friendly and super-efficient. We had hoped there would be no more blood tests since she seems to get one every time she enters a hospital. Sure enough, they stuck her and injected some fluid that apparently makes the brain easy to read. We were out by about 0900 and off to Waffle House for a nice breakfast.

Tomorrow we are off to Sanibel Island with the kids. This was planned last winter and although I really would prefer just to stay home and let her rest, all the excitement of going there may keep her mind off what is coming. Any little break from the stress has to be good. 

23 May 2011 - We are just back from four great days at Sanibel Island. We had a second-floor beachfront condo with a view of the ocean and a short path right in front of the house to the beach. The wind and the surf were constant so it was cool and rather soothing. This beach is supposed to be the best in the country for shelling. We went out to a very classy restaurant last night and I had bouillabaisse; Cathy had lobster ravioli. Cathy seems to have had a great time, still has no pain and no symptoms. It was a nice getaway for her. It should be quiet today and tomorrow, and then the following day Cathy has her first chemo.

24 May 2011 – I was looking at the drugs Cathy will be taking. One is a steroid that apparently keeps the chemo from giving the recipient a face rash. She has another pill to use in case of nausea. One of the drugs blocks the blood veins that feed the tumor causing it to shrink; another seems to block DNA for the tumor so it cannot grow. The third does somewhat the same thing.

25 May 2011 - I intend to use a little PSYOP on Cathy today. I started telling her last night that this is just another regular day and will be treated as such. We will do all the usual things, read the paper, watch the news, have breakfast, etc. The only difference will be that at noon we will go in and get an IV. Let's see if that works.

The first day of chemotherapy was a mixed bag. The actual treatment went well, but she had a reaction to one drug that was a bit worrisome. The treatment started at 1:30 and should have been done somewhere around 4 p.m. Cathy had no problems with the actual chemo of Alimta, Avastin and Carboplatin, but her blood pressure went way up due to the fact that one of the drugs tends to close the veins to starve the tumors. With the veins smaller, her already high BP went up to about 170. They took close to an hour resting her and diluting the drugs and then finished up about 5 p.m. She has no symptoms yet and is even thinking about bowling tonight; probably a bad idea. She was warned that she might be really tired about Saturday or Sunday. We shall see. So, with all our worry about terrible reactions and nausea, this first treatment went relatively smooth. Of course, we were warned that the first one was not so bad because the drugs were not yet built up in her body.

26 May 2011 - Cathy actually went bowling last night. I was against it because she was a tiny bit "headachy," felt a little sore around her throat and a bit tight in the chest. That would have kept me home. But, I had made the mistake of telling her that she might feel worse tonight or tomorrow (that lag they talked about), and she decided this might be her one chance to get out and do something. She came home and said she was a little tired but I think she bowled three games.

This morning when I got up the house was empty. I am always up an hour or so before Cathy so that was strange. I could not find her and began to think she was "raptured" a few days late. About 7 a.m. she came in the front door and it was obvious that she had been out walking. I told her next time to leave me a note. While she was on the IV yesterday and having those high blood pressure problems I had mentioned to the doctor that she has not been doing her exercise and walking lately, probably because the cancer took her motivation. She said then "I will start walking again," but I did not expect it to start the next day.

So, the conclusion is that she seems OK today, and although she said her legs were a bit tired (as should be expected from someone who has not walked for maybe 3-4 weeks) she seems OK. Maybe we have got by that first treatment OK.

27 May 2011 - Cathy and I walked about 7:00 a.m. I did not want her to be out alone in case she got weak. We walked maybe 2 miles. It looks like we might have a good day this Saturday. Assuming that Cathy is OK and has all her energy, we are thinking of seeing the "Star Wars" event at Disney. We and the kids also have some discounted tickets for a Brazilian dinner, so maybe that night we go out and try some Brazilian steak. This all depends on how she feels of course, but if we get in and out of Disney quick, maybe by noon, and she can shower and rest for the evening, maybe we can pull it off.

28 May 2011 – We went to Disney today and stayed until about noon. Cathy got tired toward the end and when we got home she slept for two hours. I guess the days after the therapy are the worst. Not only is she 3 days from chemo but she is also going cold turkey on coffee because of the high blood pressure at the doctors. So, I cannot tell if the tiredness is caused by the treatment or lack of coffee. I would not do the two together. I would maybe have 1/2 cup just to ease the shakes. Cathy is stubborn so there is no talking to her. She was OK at the 6:00 p.m. Brazilian dinner but did not eat much.

29 May 2011 – I forced Cathy to drink a half cup of coffee this morning. I wanted to see if her general poor feeling was from the chemo or the withdrawal. She had a Tylenol for the headache early so I really could not tell. Her stomach bothered her a bit and she took one of the prescription nausea pills. She is also burping a lot. I will have to call the nurse and see if they have any answer for that.

17 May 2011

When the cancer specialist gave us his diagnosis it came as no surprise. I like to think that I can read people and I had examined the face and posture of each doctor we visited over the past two months and it was obvious that none of them thought that my wife was curable. Of course, none of them came right out and said that. We heard various comments about the stage of cancer, where it was, if it was operable, why radiation would not work, etc. The bottom line was that we now had an official death sentence. Cathy was diagnosed with terminal cancer of the right lung, chest, neck and numerous lymph nodes. The cancer was inoperable and also not susceptible to radiation. The doctor recommended chemotherapy, 4 hours every three weeks by IV. He wanted a MRI of the brain to see if the cancer was there too. The only good news we got shortly afterwards was that the brain was clear.

On the bright side, Cathy was also prepared. I had been talking to her for weeks, preparing her for the worst. I talked about the various stages of the disease and what might be done as treatment. I told her there was a chance that the cancer might be such that there would be no treatment. My greatest worry was that she would be told to just go home and die. The doctor speculated that Cathy would die in about a year if untreated, or perhaps two to four years with treatment. There was no optimism. I had prepared myself to hear the worst, that she could not be treated, but the doctor was willing to try chemotherapy to slow the advance of cancer, and I was happy for that very minor victory.

Cathy smoked for most of her life. She claims that she smoked about 10 cigarettes a day, but I have a feeling that she was a heavier smoker than that. In 1995, she had a minor stroke due to those cigarettes. Both her carotid arteries were clogged. We got very lucky had found a very talented doctor who had absolutely no bedside manner. His name was Mauser, like the German armaments company, and he lived up to that name. He told Cathy that he didn’t want to waste his time saving the life of a foolish woman who would immediately light up a cigarette after he spend endless hours saving her life. It was tough, brutal love, but it worked. She quit on the spot. She was soon in the operating room and over the next few weeks had two consecutive operations where her arteries were opened up and the plaque removed. She made a full recovery and seemed in good health afterwards.

We saw a family doctor regularly and there was never any sign of a problem. As I write this in May, 2011, with a death sentence hanging over my wife’s head, there is still no pain, no loss of weight, in fact, no symptoms at all. So, how did we discover the cancer? 

Cathy has been coughing for a while. The problem with something as simple and common as a cough is that you can always justify it. When we lived in New York we had an oil burner that created a lot of dust in the winter with the house closed up tightly. She blamed the cough on dust. A few times she told me “I hate this house.”

In June of 2010 we got the opportunity to sell the house in New York and immediately purchased another one in Florida. The climate of course is semi-tropical with lots of pollen. Cathy continued to cough, and I began to get concerned. I must have told her a half-dozen times to get an X-Ray but we both thought it was probably all the pollen in the air. I am an old medic trained by both the Army and the New York City Fire Department and I just didn’t like the sound of that cough. It was hacking and stronger than I would have expected from pollen. I kept insisting that she see a doctor and she finally agreed in April, 2011.

I did not know any local doctors so went on the computer and found one that seemed efficient and was also not too far away. Family Dr. D has a nice personality and seems to know what he is talking about. He will lecture sometimes, but you leave the office knowing exactly what your situation is. He thought it might be acid reflux at first. That would have been like hitting the jackpot. The doctor did not like the sound of that cough so ordered an X-Ray. The X-Ray showed a mass near her right lung.

Since the problem seemed to be in the lung our family doctor recommended pulmonary Doctor F. He immediately asked for a CT scan, and shortly afterwards a bronchoscopy. After the procedure, I watched the doctor carefully for signs of optimism as he explained that he was unable to get far down her right lung because of a blockage. There was no optimism. He then ordered a needle biopsy to get a more definite diagnosis. He also ordered a PET scan to determine if the cancer, if that is what it was, had spread. I wrote at the time:

Cathy is coughing a bit this morning. Before we were blaming pollen and the like and now we know that the lung has an intruder and the cough is probably the body trying to dislodge it. It is awful knowing that there is nothing you can do to stop the cough. It will stay until the intruder is gone. She says she feels pretty good today and that is a relief. We have a full week before we hear the news, good or bad. It is a time of suspended animation. It is hard to get too interested or enthused about anything because the verdict is hanging over our heads. So, I think we shall both just stay in complete denial until we hear the results of the test. The easiest way to put up with a serious problem is to simply ignore it.

I had prepared myself and Cathy for the results of all these tests starting with “it is benign” and ending with “we can’t do a thing about it.” It is a game I play always expecting the worse, and then being pleasantly surprised when things are not quite as bad as you thought they would be. It did not work this time. Things were every bit as bad as I predicted they could be; perhaps even worse. The pulmonary doctor told me that he would not be treating her any further and I told him, “Good, you have given me nothing but bad news you son of a bitch.” Of course, I smiled when I said it. He did wonderful work, but he had to be honest and all he had for us was bad news. I told the kids:

The pulmonary doctor had gone as far as he could with the case so he sent Cathy to a cancer specialist, Doctor Z, to make the final decisions on medical care. In May, 2011, we visited his office and he explained that there was cancer in the lung, above the heart and in numerous lymph nodes. He was drawing a diagram on a blackboard and making all these little circles to show where the cancer was and Cathy told him; “You need a bigger blackboard.”

He said it was too widespread for surgery or to use radiation, but we could take 4 hours of chemotherapy by IV every three weeks and it might slow the growth of the cancer and extend her life. He did not mention a cure, just an extension. He also wanted an MRI of her brain to see if the cancer had spread there. I joked “You know she is Irish, the brain scan won’t show much.”

Cathy was ambivalent about the treatment. She told me very seriously that she was considering just letting the cancer take its course because she was 73 and felt she had lived a long and full life and she had heard terrible things about how the chemotherapy affects your body. She had some general pain from arthritis, the statins she takes for cholesterol and other ills and wondered why she should continue to fight for the right to hurt. She actually had a point, but I told her that she should never give up. I reminded her that son Peter would be getting married soon and both her grandson and granddaughter were engaged. Did she not want to attend those weddings? In order to get her to start treatment I said, “let’s do two treatments and then we can see how it is working. If the drugs have no effect on the cancer perhaps you can make a better decision then.” I was basically stalling for time, but we need to keep her motivated and ready for the fight. I can think of nothing worse than just going home and waiting to die.

As I write this, the first chemotherapy treatment is 8 days away. We picked up two drugs today; the first to help Cathy’s body fight any allergenic reaction to the chemotherapy and the second to fight any nausea and vomiting that might occur. In eight days they will place a needle in her arm and during the next four hours put three different chemicals into her body that are supposed to fight the cancer. I have no idea how bad it will be for her. A friend told me to get some “Sea Sick" wrist bands to help with the nausea. They are just pressure bands designed to help alleviate sea sickness that go on the wrist. I expect nothing from them but they are cheap enough so why not give them an opportunity to surprise me. Of course, I bought them.

Right now the best case scenario is that Cathy will be as sick as a dog for a day or two after chemotherapy and then snap back to normal. The worst case is that she stays sick for a week and is unable to move around or live a normal life. I have no idea what will happen. I hope for the best but expect the worst.