Fake Names

Well, here I am the day after chemo. The major issue is that I do not feel like eating and I am also tired.

I had dry mouth last night and can see it getting worse tonight. I will take some precautionary medicine, like Biotene.

I am hoping that I will be back in the swing by Friday, but to be realistic, it may be Saturday.

This morning, I had a major coughing spell that approached throwing up. I think it was caused by nasal drip and have purchased more Claritin. The research manager declared "It's not in the stomach." Apparently she meant "It's snot in the stomach."

I have one more chemo in two weeks and then a petscan the following week. At that point, there are two alternate approaches for maintenance. One is effectively the same routine as I am doing now with the most damaging drug dropped. That would mean a four hour visit every two weeks and the pump. The other is pills. A possible side effect is what they call hand and foot disease, which is lesions on your hands and feet. There is about a 16% chance of this happening .I am leaning to the pills. I think it gives me the best lifestyle choice.

I inquired about immunotherapy and was advised that while it is a possibility down the road, it is not for now. At some point, they would do a test on my tumor. When I pointed out that the tumor was gone, I was advised that samplings from the tumor are kept for the future. So, there is actually a museum of tumors. I asked if we could make the museum public and could I get a royalty on entrance fees. Apparently not.

I do need your help on one issue. When I sign in at the cancer center, I usually use a fake name. Things like Mike Rofone, Ann O. Rexic and Sally Forth. I am running out of ideas. Any suggestions that I could use would be appreciated. I need two each week. Thanks.

Off to Paris?

Well, here we are, a week out of the most recent chemo and I am finally feeling pretty good.

The five days after last Tuesday were a little rough with mouth sores and dryness, neuropathy, lack of appetite and fatigue. But other than that, things were great!

The last couple of days have been great with improving mouth dryness, increased appetite and more energy.

Tennis has been going not badly also. When I have a good partner, I do well. When I have a nice partner, even better. Fortunately. all of the tennis group are nice.

Anything else happen? Well, yes.

My fingernails have gotten brittle and crack at the edges. I decided on the weekend to get a manicure to see if that would help. It did for a day or two, but the rough edges are returning.

Also, new news on the black spot on the toe. It seems to be getting better. The Research Manager who documents everything takes pictures of my toe. The other day, while I was sleeping, she snuck (sneaked?) into the room and took a picture of my naked toe sticking out from a hole in my sock. I have heard of people taking pictures of people while they are sleeping and defenseless and now I am such a victim. Photo evidence shows improvement.

I have two more chemo sessions before the next petscan and at that time, I will have to decide on one of two approaches to maintenance. One involves pills and the other involves more frequent visits to the cancer center and a few days every other week with Bob. The whole issue is what yields the least bothersome and toxic side effects. This is a tough decision.

Speaking and hearing properly remains a problem. Today, I heard the Research Manager refer to "Parisites", which can play a role in getting rid of dead cancer cells. I immediately thought of flying off to France to see the Louvre, the Eiffel Tower and the Arc dueTriomphe, all of which are Paris sites. But apparently she was talking about Pericytes.

I guess I am stuck in St. Petersburg for a while longer.

Thanks again for your interest, prayers and encouragement..

Studying My Bears

Well, here we are the day after chemo and on day 2 of the pump, which will be gone tomorrow.

I find that I am tired and with not much appetite.

So far, I have a little dry mouth, but not bad.

I feel some neuropathy.

The interesting thing is that I have developed a black spot on my big toe. There is a wide range of possibilities for this, but the doctor thinks my tennis shoes are too tight. Time will tell.

I had a good weekend with my son. The only thing of note is that I found myself getting emotional in circumstances where I was watching people excelling in their work. I have always found joy is seeing success and I seem particularly susceptible in my current condition.

Yesterday at the cancer center was unusual for a few reasons.

1. We found out that the dog Bob, who my pump is named after has died. This raises the question as to whether my pump should be renamed. I am thinking of reversing his name, by spelling it backwards.

2. As mentioned last week, the driver was away this week. I had an alternate driver lined up, but the research manager wanted to talk to the doctor and so we went together.

3. This proved to be beneficial for a guy named Walter who is blind and had to go to get his blood typed before getting a transfusion the next day. He had no way of getting there. The research manager offered to take him to the testing center and then to drive him home. Now all the staff at the cancer center love the research manager for what she did.

I don't know if my speech has become a total mumble or if the research manager is becoming hard of hearing. Last night I told her I was going to eat some berries. She thought that I said that I was going to study my bears. This kind of thing happens all the time.

Time to go to study my bears.

Weekend Away

A lot of little things to report.

In general, until this past Monday, I have been a little under the weather as it relates to the chemo effects. Dry mouth and mouth sores have been a big issue, Mugard, Oragel Rinse and Biotene have all been employed in the battle and the last few days have improved the sores, but not the dry mouth.

My neuropathy still is present, but again, it is slightly better.

I do get tired. More about that later.

Way back when I started this process a year ago, I joked about getting a sore toe from the chemo. I was rewarded almost immediately by a case of athlete's foot. (If I was an astronaut, it would have been missletoe!). Well, we are back to toes. I have developed a black spot under the nail of my big toe on my right foot. The research manager has listed possible causes - fungus, melanoma, bruising. The cancer center says "Chemo effect." We are watching this with interest as things develop.

The blood tests from yesterday tell a tale. My White Blood Cell count is down, but not grievously so. However, my Red Blood Cell count has been slipping steadily. This can cause fatigue and other maladies . The low count is likely caused by adverse effects on the bone marrow from chemo . I don't think we are at scurvy levels, but this is a matter to be pursued.

I am looking forward to a weekend away with my son Graham and then we are back for session six of the new chemo. After that there are decisions to be made re more plain chemo or maintenance and, if maintenance, pills or two days with Bob. Stayed tuned for developments.

I am afraid that my prowess on the tennis court is having a negative effect on attendance. A number of players are not showing up. I doubt it has anything to do with the fact that they are snowbirds.

Even the driver is going to be away next week. I asked if she could drive back from Hilton Head on Monday night, drive me to Morton Plant and then return to be with her family. She thought about it for 0 seconds and declined the opportunity. Surprise announcement on this next week.

Finally, Andy and my daughter Krista independently worked on converting my blog to "Word" format. Andy has then worked hard to make it into a true book presentation and then converted my email conversations with my dear friend Mary Jo, who has pancreatic cancer. It really moves me to read back over those first six months. I am close to being ready for a conversation with a publisher. I am excited about this.

I will be thinking of you all over the weekend and look forward to catching up with you next week.

A pending rubber ducky crisis

This has been an interesting week. It has had it's highs and its lows.

If this blog is less than inspired, it is because today, I am less than inspired. It has been a tough day. Not much appetite and I have been very tired. Exactly what you would predict on the day after chemo.

The interesting thing is that in the days before chemo, I had significant dry mouth and some bowel issues. They were better last night. So who knows. This is a strange and rocky journey.

This past week began on a high with a visit to Moffitt Cancer Center. I was really impressed. I spent an hour with Dr. Haider and found her to be very bright and personable. She clearly cared about what I felt and wanted.

It was suggested that I do two full chemos, not four and then switch to a maintenance regime of some kind. Her recommendation was to do two days with Bob and not the full Bolus of chemo on the first day. This contrasts with the pill form of maintenance. The reason for not doing the pill is that there are some tough side effects possible (irreversible skin damage, for one.} Also, if one is left to do the pills at home, patients sometimes forget.

For those of you that know of my disdain for Bob, this is tough. We have about three weeks to work this out.

A few vignettes.

I met an older man at the post office the other day. He had received some meds in the mail and was complaining about the cost and that he therefore had to continue to work. I said, "Me too."

His response was that I was too old to be working. The implication is that he thought I looked older than him and more frail. I thought just the opposite, but what do I know.

The other vignette is shocking. You know of my feelings about my rubber duckies. A report released yesterday revealed that rubber duckies contain all kinds of bacteria. I will have to think about this. It would be a real sacrifice to give them up. What is more, I read the ending positions of the 5 duckies when the tub drains to determine how things are going.

It is kind of like reading tea leaves.

In any event, thanks for your support in so many ways.

Here's to a stress free life

This past week has been relatively uneventful.

I have managed to play tennis most mornings and also kept up with things at the bridge club.

There are a few days where I could have used a rest and did not get it, but generally things are good.

Anything not good? Hmmmm...some back and neck pain from the car accident, some neuropathy in the fingers, a little fatigue.

On the positive front, Dr. Patel told me that about 50% of his patients show no improvement after 4 sessions of chemo after a recurrence ( I went three months and then the cancer returned) and clearly the petscan showed decent improvement. Also, he indicated that the two shots that I received to boost my white blood cell counts were responsible for clearly up my mouth sores. My count jumped from 1.9 to 4.9.

I was able to get an appointment with Moffitt Cancer Center for tomorrow (Thursday) and I am looking forward to it. I spent 2 hours this evening answering a lengthly questionaire and then reading instructions to prepare for my visit..

The instructions included questions that one should ask during the appointment and I have come to the conclusion that Moffitt personnel may be miracle workers. I was instructed to ask "Will I be able to have children after my treatments?" If they answer yes to that, I will be impressed.

This week I have been reading a book called "The Cancer Conqueror." I read it many years ago and I have often recommended it to others. I realize that it has helped form my attitude to cancer. It focuses on the ability of the mind to influence what happens.

Negative emotions like fear, guilt and anger have a heavy negative influence on your health. Love, joy and peace obviously have a positive effect.

Right now I am reading about the importance of playing each day. I buy into that big time.

We all need to take control of what is happening in our lives and our treatment.

No summary would do justice to the book which is written as a parable of sorts. I highly recommend it. It is written by Andersen and is available on Amazon. I am somewhat interested in studying this book with others. Let me know if you would be interested. It is good for everyone, in my opinion.

One of the things that should be avoided is stress. I will have to develop strategies for things in my life to achieve this. For example, when I receive coin change from a purchase in the store, do I put the change in the coin holder in the car or do I bring it home and put it in the coin jar on my desk? Maybe I should always pay by debit card?

So......tennis players and bridge players........it would help my health if I could always win and not suffer the stress of losing I am just saying,

It is getting late, I need to go and have my relaxation, detoxing soak and then get to bed. Oh rats, I will have to decide whether to sleep on my left side or my right. Stress is everywhere.

Arrived!

This week brings a number of reports and observations.

The most important is that the results of my petscan show improvement in my liver and my lymph nodes and nothing new.The readings in the lymph node are down to about half of what they were 2 months ago. The liver readings are down about 40%.

What does this mean? It means that the oncologist is recommending another 4 sessions of chemo, not my first choice, but likely right.

Having said that, I am looking at clinical trials and also will attempt to get a second opinion re future treatment from Moffitt Cancer Center.

The second big development is that my white blood cell count was very low yesterday, The associated measure (ANC) was .9 and the minimum acceptable reading is 1.5. Low ANC is called Neutropenia. This prompted the requirement that I have two shots of  Neupogen to help bring it back up. I got one needle yesterday before rushing off to the petscan and one this morning which took a long time, which was frustrating, but I still made it to all my appointments.

One of the effects of Neutropenia is apparently mouth sores and infection. I have experienced that big time over the past three or four days, but it seems to be improving. That will help me feel like eating more, which has been a problem. It sometimes hurts to eat and my taste buds seem to be not functioning all that well.

Notwithstanding all this, I still am playing tennis when appointments or really cold weather don't get in the way. Monday, I was the best player on the court. The fact that it was drizzling and cool may have been a factor as no one else showed up to play. But then today, the best player who usually takes me to make things even, took someone else, which gave me some reason for optimism.

Some people encourage me by saying that at least I am trying. I am quick to observe that the research manager finds me trying often.

Finally, we all try to make it in whatever endeavor we undertake. I learned yesterday that I have arrived! We had about 30 minutes to eat between my petscan and an appointment with my GI doctor with whom I had a followup visit just prior to the one year anniversary of my big surprise. We located a McDonalds for an Egg McMuffin and asked for directions on my phone. When we got there, it told me that I had ARRIVED!  I did not realize that it was so easy to reach that lofty goal.

Finally, I learned today that someone who I see about three times a year on the tennis court (March Break) reads my blog regularly. Wow...all of you who follow the blog are great. I so much appreciate your interest, prayers and support. It gives me energy.

So, I am truly energized to carry on and intend to do so for a long time. Thanks.