We Lose Some ground - Temporarily I hope

02 September 2011 – Cathy was not complaining about anything so I thought we were doing fine, but at 2 p.m. she took a nap. This is the first time she was tired during the day since the transfusion. I wonder if she has run through those new blood cells already. We have another treatment just 5 days away and I want to go there with her in good shape. On the bright side, the new drug regimen for blood pressure seems to be working. Yesterday at about 10 a.m. (at rest) her BP was 115/50. It was so low that for a moment I thought the earpiece was not working. I am used to hearing a thump up around 160. I actually moved her to a quieter room for a second listen. I was amazed that the first sound I heard was down around 115. Today we were so busy that I checked her late, at about 7 p.m. when the drugs had run down in her body. It was still good at 130/64, but you could see that the morning drug was about used up and she had not taken the evening dose yet.

7 September 2011 – Cathy had her last full chemotherapy session today. We had a few minor problems. There was heavy rain so a trip that should take about 27 minutes took us almost an hour. Luckily, I always leave an hour early so we were right on time. The person putting in the IV turned out to be a medical student who went through the vein and caused Cathy's hand to swell up. In the future I will ask if they are registered nurses before I let them use a needle on her. Once the IV was in, I reminded the nurse that she must put in the Avastin last since it sometimes raises Cathy's BP and causes us to be delayed as much as two or three hours. Cathy gave me some attitude because she thought I should not be telling that to the nurse, but it turned out the nurse was not aware of it. I reminded Cathy that we are responsible for our treatment and must be sure the nurses know everything.

The final problem came when we were leaving. I knew we were not due back for one month on maintenance, but the secretary wanted me back in three weeks. She checked once, still said three weeks and I demanded that she check again. It turns out we were both right. There was a lack of communication. Apparently the doctor was going to be away in a month, so although he still wanted Cathy to get the chemotherapy in four weeks, he wanted to see her for consultation in three weeks. We finally got that straightened out. On the bright side, we were done at noon so the treatment took just three hours.

Cathy's RBCs are holding up at 3.47 million. It would be nice to see them higher, but that is a lot better than the 2.1 we were at a few weeks ago.

8 September 2011 – Cathy feels good today but we know from experience that if there are after-effects they will come about Saturday. She is wearing her sea sick bands and hopefully that extra blood from the transfusion will make this post-treatment period easier. Her blood pressure is still fine. I would like to eliminate one of the drugs, maybe the calcium blocker, but she is around 115 every day and it doesn't get much better than that.

9 September 2011 – Cathy had the tremors today. That seems a day early since I think it is usually three days before we start to see problems. Her hands were shaking and she had a bad case of gas. She napped for close to three hours. I reminded her that tomorrow will be worse. We should then have anywhere from 6 to 8 bad days, and hopefully after that everything should calm down.

10 September 2011 – Cathy was shaky again this morning. The after effects have arrived as we knew they would. There is some light-headedness, some dizziness and the sounds of her burping reverberates through the house. She took a gas pill and a nausea pill so hopefully she will settle down in a bit. She was back in bed by 11 a.m. and slept for about two hours. Steven called to invite us over but I told him that his mother was wearing a sweater, wrapped in a blanket and did not seem to have the energy to go anywhere. Tomorrow will be worse.

11 September 2011 – Cathy did not have tremors today, nor was she light-headed or dizzy. She had stomach discomfort, diarrhea, and gas and said that she slept poorly because she could hear the blood moving through her carotid arteries. She thought her BP might be up again but when I checked her it was 110/50. It is actually a bit low so I am thinking of asking our GP to let us eliminate one of the old BP drugs, either Atenolol or the Amturnide.

12 September 2011 – Cathy feels a little better than yesterday. She woke up today and said she felt pretty good except for the tiredness. That is a kind of positive, although not very much. She was doing pretty good, but after a Chinese buffet for lunch she felt a little nauseous and more tired. I got her home; she took a nausea pill and is now out like a light in the bed room with the doors and curtains closed.

13 September 2011 – Cathy is having a rough day. Her stomach has been annoying her and although she has taken Imodium and Pepto-Bismol, she is still hurting. I thought this might be a good day with no problems but the stomach, but it seems bad enough that it might be worse than one of her normal after-effects days.

14 September 2011 –Cathy is having a tougher time than usual. She has had a stomach ache for three days and none of the regular over-the-counter medicines are working. She still has diarrhea and tells me that it is black. That sometimes means blood in the stool. Her nose is also bleeding again and even with all the drugs her BP was 160/58 this morning. I called her cancer doctor and left a message. They reply within three hours according to the message. I called her local doctor and he is off to a conference until Monday. I told her we could go to an emergency room or wait until the cancer doctor calls back. This could be a normal after-effect, but it is worse than usual. Of course, we were told the human body can only take six of these treatments and this was the sixth. Maybe the poisons are just more concentrated now. She might have also picked up something at the Chinese buffet. Who knows? At any rate, if she asks we will head for the emergency room at the local hospital. Right now we are just waiting it out.

We near the end of the initial chemotherapy treatments

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.

We start to show success in the battle

4 July 2011 – There hasn’t been much to say lately. Cathy is almost three weeks from her last treatment. This last week she was fine as the chemicals were mostly out of her body. She has increased her blood pressure medicine, has fewer nosebleeds and hardly coughs at all (which could be a good sign that the growth in or on her lung has shrunk), who knows?

We go back in two days and I am hoping that the increased blood pressure meds will make this visit easier. The first two times we ended up there about 3.5 to 4 hours as they tried to get the BP down at the same time that they were giving her the treatment. If we have an easier time we could be out in 2 to 3 hours. It took longer after the second treatment to get back to normal, maybe 8 days instead of the 6 days after the first treatment, so this could be worse or better.

5 Jul 2011 - We saw our regular doctor today. He wants to check her blood pressure to see how the new meds are doing. The blood pressure was still high at about 180/80. He decided to double her calcium blocker Amlodipine Besylate to 10 mg. The blood pressure was then about 140/80.

6 July 2011 – We are just back from the chemotherapy. It went very well today. They saved the bad drug (Avastin) for last so pushed everything through quickly. The blood pressure only went to about 160/80. We were done in 2 hours and 45 minutes. That is excellent. Cathy was very tired (because they did push the nasty stuff through at the end), so I got her home and told her "don't say anything. Get in bed and shut up." I will let her sleep for about three hours and hopefully she will be back 100% after a good nap.

Later - I feel like they pushed the Avastin at the end to such an extent that she was really tired. She spoke so softly on the way home that it was as if she had a cold or sore throat. I made her repeat herself a few times. We got home about 3 p.m. and I told her to lie down since she was clearly tired. I went in at 6 p.m. to wake her and she said she was getting up, then promptly went back to sleep. I decided that was a good thing. Might as well sleep it all off. She finally woke up at 8 p.m. That is five hours sleep in the daytime.

7 July 2011 - We are going to the dentist this morning. One of the side effects of these drugs is that they slow the growth of "fast growing" cells. Apparently that is what cancer is. The inside of your mouth contains fast growing cells (I guess we are constantly scraping it with food) and because of the drugs, one of the problems is that the mouth will break out. She hasn't had terrible problems, but there have been some aches and pains, not unlike fever blisters. We will have a dentist look at it this morning. On the bright side, her white blood cell count (bone marrow is also fast growing cells) was 11,000 yesterday and that means the body is still ready to fight off infection. After today we have a few days off until a new PET scan when we see if the tumors are any smaller. Her red blood cells were a bit low, 3.55 million, so Dr. Z gave her a prescription for folic acid 1 mg. That apparently helps in RBC production.

Cathy was amazing today. After the first treatment she was not quite right for about 6 days and after the second treatment not quite right for about 8 days. This time with the extra BP medicines, the Avastin last and wearing those little seasick bands around her wrists she has suffered no after effects except a tiny bit of dizziness. This is really amazing. You would never know that she just had chemotherapy.

9 July 2011 – We got fooled again. It looked like we were getting away with a painless treatment but today the tiredness hit again, her head hurt and she had a lot of gas and even some nausea. She took one of the nausea pills. She napped a few hours during the day and again in the evening. It is funny how the chemicals can wait two or three days before striking. She had no appetite and ate hardly any dinner. All we can hope for is that tomorrow she is back to full strength. I now see that no matter how good it looks, a bad day is always just around the corner.

10 July 2011 – Today wasn't much better. Her BP was way up again (220/150) and I had to give her one of those emergency pills I have been hoarding. By afternoon she was down to a reasonable 147/50, but it is very tough knowing that not only do we have to worry about cancer and chemotherapy, but also this damn blood pressure.

It actually got me down this weekend. So far I have been the strong one, always upbeat and encouraging Cathy. Yesterday when her BP was up again it started to weigh down on me. It gets tiring always being the strong one. My BP was up over 160 and that hardly ever happens. This woman is going to be the death of me :-)

11 July 2011 - This morning she was a bit better. She had some oatmeal for breakfast and seems to be moving well. She has a little blood in the nose and that usually indicates that her blood pressure is high. It was, 170/80. We may have to see that GP again and see if he has any other tricks up his sleeve. At the present she is at the mall so I know this is a better day for her.

12 July 2011 - It is getting hard to know if any day is going to be a good one or a bad one. Cathy was pretty good yesterday and seemed to be coming out of it. Today when she woke up she seemed fine and I thought that 6 days after chemo she should have shaken it off. Her blood pressure was 144/68. Then she got a stomach ache. I hear a lot of gas coming out of her so I think that even though she has been taking some gas pills to relieve the pressure, this is another big buildup of gas in her stomach. It is just one thing after another. The problems seem to be in order of frequency, nose bleed, high blood pressure, abdominal gas and dizziness. Cathy is doing a couple of loads of wash, but I can see she is in some pain. I don't think she took her Gas-x yet. She needs to take that just about every day to stay normal. She did finally take the Gas-x and says she feels better. She says she has taken it four days in a row.

13 July 2011 - The last few days have been fairly quiet and that is a good thing. Cathy is not at 100%, but she seems to be about 75% and that isn't bad. Her BP is up today as 157/64, but at least it has not climbed over 180 so we have not needed to use the special medicine I am hoarding.

15 July 2011 – Yesterday was very good. There was no bleeding nose and things seemed under control. This morning Cathy was up at 0600 with a freely running nose. Her blood pressure was 200/70. I immediately gave her one of our emergency pills. By 0730 the BP was a normal 120/50 and the blood flow had stopped. We will call Dr. Dawson today and tell him the problem still exists. This blood pressure problem is slowly becoming our major worry.

16 July 2011 – A good day, no pain, no nose bleed. The blood pressure was 170/80 but Cathy felt good and figured the worst was over.

17 July 2011 – The worst was not over. The blood pressure this morning was 190/74 and there was fresh blood coming out of the nose. I gave her my next to last emergency pill and the blood flow stopped.

19 July 2011 – Cathy’s blood pressure yesterday was a little better at 170/78 and today it was 164/70. We saw our GP Dr. D and I pointed out that we did not have control of Cathy’s BP. It runs high on a daily basis and three times this week it was near 200 causing me to give her Clonidine. I asked for a prescription of Clonidine for emergency use and also for a new BP drug for daily use. Dr. Dawson eliminated the Amlodipine Besylate and we will now try a new drug called Amturnide. Cathy cannot exercise or have any carbohydrates today. Tomorrow is her PET scan where we see if the chemotherapy has been working.

20 July 2011 – Cathy took a second PET scan today. The doctor wanted to know if the chemotherapy was working. We will soon know if it is worth going on with the treatments.

26 July 2011 – I have had little to talk about. We are watching Cathy’s BP and it seems to be much better. The new drug regimen is working. Instead of the 180 and 200s we were getting, the blood pressure readings this week have been close to normal, 160/70, 140/90, 149/55, 147/55, 136/62 and 150/58. This should make the chemotherapy tomorrow easier and quicker.

27 July 2011 – Great news. The doctor read us the results of the second PET scan today. Cathy took this test 10 weeks after starting treatment to see if the chemicals were having any effect. The news was about as good as it can be. All of the lymph nodes in the neck and chest were clear. The big lump in the lung was shrinking and its metabolism was down. This was the first good news we have had in about three months. The chemotherapy is working and although nobody said we were going to actually beat it, we are having amazing results. Cathy will take two more of these treatments, and then go on maintenance with one visit a month and just two drugs instead of three.

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.