Steve's Care Page

There are some funny things that I have experienced going though this. Food: All of sudden, I need to gain weight.  It is like the rules of dieting are backwards. You get recipes like, "Take whole milk, jam powered milk in it and add ice cream mix up for a nice treat". You get advice like "Eat a piece of cheesecake in the morning when you are feeling good." I must have missed the health class where they were like "Drop and eat a cheesecake!!"   Propofoal: This is a short acting anesthesia. It seems like a light-switch. I had 3 procedures where they used this to knock me out. The third time, I was like "Let's see if I can stay awake." Well I could not count down from 10. Also every time I wake up I'm like "Hay I'm waking up." They always say "Well you should be as we are done you have been out for 30 min." Alexis tells me that I'm loud when I wake up as I don't know how loud I'm speaking. It's fun...

Day before second round. So, I now have some numbers from my blood test. If anyone is interested, I have a color coded spreadsheet that I can share. The reasons why these numbers are low is that they are cells that quickly reproduce and get killed along with cancer due to my chemo. two high level facts are below: My red blood cell count is decreasing, it is a 4.07 where anything under a 4.2 is considered low. This explains shortness of breath walking up the stairs. If my next reading is low, I will get a blood transfusion with my next chemo session. For more details on the sub values of the red blood cell look here:   https://stevecare.blogspot.com/2018/11/decisions-on-cancer-110618.html The major concern is a low white blood cell count. It dropped from a 10 to a 2.54. Anything under 4.1 is considered low. This makes it tougher to fight infection. So keep everything very clean.  Details on the white blood cells,  White blood cells can be of three typ...

Everyone, I was feeling good enough to pick up my daughter the other day at school. I walked into after-school day care and it hit me, I was scared. Now I'm not normally scared by a room full of children but this was different as I have a new perspective. Let me first share a summary of a story I read on Twitter. Someone's child was undergoing chemotherapy and was accidentally exposed to measles. This kicked off a tsunami of action. First, they needed to isolate their poor 8 year old for a month. Second, they needed to have the infusion center where their daughter received chemo sanitized. This also meant that everyone in the center since she was there needed to be checked. No one seemed to contract the measles and none of them needed painful shots to increase their white blood cell count. The accidental contact kicked off a ton of work and fear. So, I'm in a room of 30 kids and it hits me, my chemotherapy reduces my ability to fight off infection. At home we have pr...

Happy Thanksgiving everyone.  I'm feeling pretty good. I'm less winded, I'm eating more and I have more energy. My ability to eat solids has improved as I'm hoping that is a sign that the cancer blocking my esophagus is shrinking. Many things still seem unappetizing. It seems that I like things with salt. The main problem is that I'm limiting myself trying to determine the impact of how things are going to go during this chemo phase. Also, a mix of apathy and boredom is a tough thing to deal with. I have had a chance to read some documents that I really needed to do for work. I'm really looking forward to my white blood cell count next Tuesday to understand how vulnerable I am to infection. If I'm mostly down the first 2-3 days after chemo I would be pretty happy.  It looks like I should be able to do some walking and yoga for exercise during the off weeks.  Right now the major side effects seem to be dry skin, sensitive mouth skin, and some numbness on m...

Today is day five after the first chemo session of eight.  I'm starting to feel better. I do get winded due to the reduced red blood cells but I'm not in pain. I also seem to be able to eat larger objects which is a good sign that the cancer in my esophageal junction is smaller. Kudos to Kristin and Brian who brought over Pho soup from Four Sisters. It was the first meal that tasted good in several days. I also ate a can of mild chili last night so my appetite seems to be coming back.  While one trip though chemo is not a pattern, it seems that on this path, I do get nauseated until day 5. I'm hoping that I'm not so nauseated so that I can eat more. My weight has leveled out at about 190 and I have no fever.  I'm hoping that this is the pattern as if so, it will be much more tolerable rather than 4 months of totally feeling terrible. The day before yesterday, I left the house and walked a bit. I'm going to have to get a treadmill so that I can walk during the ...

The day after chemo, I'm sent home with a pump that gives me 120ml of FU-5 chemicals over 24 hours. I thought the pump would be in the way but it was not. I slept fine. I was still a bit tired possibly because I felt a bit nauseated and took some medicine for that. and I'm feeling better this morning. The removal from the port also included an injection of heparin, (anticoagulant) to keep the line clear for the next session in two weeks. It was good to hear that one of the side-effects of the medication was hiccups and that I  received a prescription and it worked.

Yesterday I started chemo. Before that, I ate some hard bread and did not chew it and had hicups for most of the day. Even this morning I have had them. First, I had a reaction to the first drug. Started with some pain in the chest and I was very flush. They had to stop and give me more steroids. They mentioned that this sometimes happens on the first chemo session. It took from 0900 to 1600 for the session. Otherwise it was pretty uneventful. I worked a bit. Too many steroids made napping impossible. They gave me an infusion pump that we will go back and remove at 1600 today. The pump gives me 5 ml every hour. Sleeping with it was not hard. When I got home I was wiped out.  Had pain in my tumor area (here is hoping that is a good sign of cells being killed off)

So I learned a lot yesterday. The medication that I will take kills rapidly dividing cells. This will shrink the tumor but also make me loose my hair. Also it will affect my bone morrow this means that 5-9 days from now I will have reduced red and while blood cells. Right now due to the ulceration (cuts) from my cancer, I already have some anemia. So we will see what physical things that I can do next week. I will be able to get confirmation of how this is impacting my blood counts on the 27th, the day before my next treatment. The chemo-class was very informative.  Here is hoping that the shrinking of this tumor will lower my pain level and let me be both more active and be able to eat more. Two of the other high probable side effects are a sensitivity to cold and I might get some numbness in my fingertips or feet. Our meeting with the oncologist went well. It looks like the PE scan did not show any lymph nodes lit up. While there can be false positives, this is a positive pie...

Yesterday I had a port put in. This a small device that is under my skin in my chest.  It has a jell membrane that medical professionals can put a needle in. The can use it to either draw blood or give me medicine without having to stick my arm with a needle.  The unit has a tube that directly feeds into a major vein. While the picture of the chest is smaller, making the unit look bigger, this is what they showed me to show placement. To do this procedure th ey had to use radiology to place the tube.  During the procedure they used propofol to put me to sleep. Seeing that this is the third time in two weeks, I tried to stay awake.  Well, I could not. They recommend  not driving or signing contracts for 24 hours and I agree that there is some residual effects. Today I get ready for tomorrow's  chemo. I have a class on the chemo and what to expect. I also will start the process of always having my blood work  drawn the day before the procedure...

It seems like yesterday everything fell into place for plans. Here is what is up on the schedule. 1. Friday at 1400: PET scan. This is a fancy CT scan where they give you special medication that lights up cancerous areas. The doctor really wants to see how bright a specific lymph node is.  https://www.healthline.com/health/pet-scan 2. Monday the 12th 0645.: Port installation.  They will write me for local pain  relieving  cream (lidocane), d examethasone  (steroid) and anti-nausea medication (compazine)to take before installation. 3.  Tuesday the 13th 09 00-1100: Chemo class, topics are: Preparing for your treatment day Blood counts Infection Anemia Bleeding Fatigue Nutrition during treatment Appetite changes Nausea and vomiting Mouth and throat changes Constipation Diarrhea Hair loss Skin and nail changes Reproductive and sexual changes Nervous system changes 4.  Tuesday the 13th 1130: Review of PET scan 5. Tuesday the...

Yesterday was a big day for decisions. I decided that I did not like the risks from Immunotheropy added to chemotherapy.  After talking to my Dr. we are moving ahead with the following: Put in a port in my chest within 2-3 days. This will help them give me drugs without having to find veins in my arms. It also dumps the drugs into a major blood supply so that toxic drugs are not concentrated in the small veins in my arms. This will be followed 4 months of chemotherapy pre-surgery, don't yet know how many months post surgery. This will come in chemotherapy sessions once every two weeks. He mentioned a FLOT regimen. Visiting a radiation oncologist for radiation therapy Start talking to a thoracic surgeon. PET scan to determine how cancerous one of my lymph nodes are. This may not be covered by insurance. Talk to doctors in Sloan Kettering to see what their opinions are.  What is the difference between chemotherapy and radiation therapy. The doctor had a great analogy. ...

On 10/31, I had some blood drawn.   They ran three tests, a complete blood count (CBC) auto differential, a comprehensive metabolic panel and a aPTT.   It really explains some of my chest pains, and exhaustion when I'm active. I'm going to have to work to keep on eating and make sure I get B12 protein, and Iron. I don't know how much of this is due to the fact that I was not eating and how much was due to the fact that I'm having problems absorbing nutrients due to stomach cancer. For the CBC auto differential, out of 15 tests, I have 5 low values and 1 value that was high.  For the Comprehensive Metabolic panel out of 16 tests I have 3 low values.  For the  aPPT test I have a normal value.  The   Thromboplastin Time Test test clotting and it seems that I can do this well. https://www.webmd.com/a-to-z-guides/partial-thromboplastin-time-test#1 Details of CBC Low values: HGB( Hemoglobin) was 10.1 where the low should be 1...