Saturday, December 19, 2020
Friday, December 18, 2020
Nowadays
I also learned that my body could no longer perform the physical activities that it used to perform without resting 30 minutes or so every 60-90 minutes... and, since my Melanoma had returned twice, my desire to get out into the sun was discouraged unless I was wearing long sleeves plus a lot of sunscreen. Now, my ability to enjoy my vacations was limited just at the time when I was in a position to take several anytime I wanted. I had little desire to go anywhere but a warm coastal beach.
But, that was not all of the changes... my sensitivity to cold and heat worsened and not only did I get colder quicker once the temps went into the 40's but the humidity of the summer without a strong wind made it almost impossible for me to breathe without air conditioning. Once we got into late fall, the tubes connected my ears to my nose (I think) would fill up with mucus making it difficult for me to hear even when enunciation was clear just not loud enough.
When I was 73 and experienced afib for the first time, I told my Cardiologist that I had felt nothing at all as a warning sign, so now I am on Xarelto and the slightest cut on my face when I save, will bleed for a couple of days and requires two band aids one on top of each other to keep the wound from bleeding. Those bandages remain for at least another two days.
Not only do I sweat during the night but I sweat all over during the day like a fine mist covering my skin and unless I take a shower everyday, my body odor is horrible.,
My appetite comes and comes as does my sense of smell and taste so when I am eating anything, the food is just food without any kind of taste and if there is a taste associated with what I eat, it is not an enjoyable taste so I am not mentally encouraged to eat a lot.
The fatigue that I experience is sporadic and comes and goes at various times throughout the day whereas before it always arrived at specific or general times on which I could plan and make accommodations but now I just have to wait and see
The bruises on my arms and legs come and go as well, but it does not take much to cause a bruise so I have to be careful all the time with what I am doing. I balanced a box of cat liter on my left arm so I could pour with my right hand and the next day my left arm had several bruises on it... even though it hit nothing to cause a bruise to appear. Sometimes, my arms are covered in bruise tats and I look like a member of a street gang.
This is a little of what I live with everyday...
A Work In Progress
Our lives are works-in-progress as they move from one hour to the next, one day to the next, one week to the next, one month... one year... one decade... and, then finally one lifetime where are bodies are destroyed in some humane fashion and our souls disappear forever.
Our heath, especially when one is sick, are works-in-progress... and, while some of us improve, others will not and many of us will continue to be works-in-progress for the rest of our natural lives... always having value being added to us in the terms of treatments and medicines.
- preparing a meal
- eating a meal
- painting a room
- mowing the lawn
- going to school
- taking a vacation
- preparing one's taxes
- writing a text
- answering a phone call
We don't think about it very often but works-in-progress are all around us all the time and yesterday when I took my cat to the Vet, our work-in-progress lasted over 90 minutes waiting in the car because the Vets had been interrupted by several emergencies.... and, emergencies always take priority over other works-in-progress no matter how long others might have to wait.
I spent some time last June/July (I cannot remember which month it was) in the ER and my work-in-progress took priority over the others potential patients who were waiting. I had a staph infection, very low blood pressure, afib, heart and kidney failure... and, if my arrival had been several minutes later, then there is a very good possibility I would not be alive to write about it.
And... while that work-in-progress is over, I have other works-in-progress with which the doctors and I must deal on a daily but mostly monthly basis.
Thursday, December 17, 2020
Health Reflections 1947 to Present
💨Every other month, I am receiving infusions of IVIG to bolster my immune system from all my cancer treatments. I am living with a very low white blood cell count and a low red blood cell count that gives me anemia.
💨Every month... actually, every 4 four weeks (because there are two in December), I receive an infusion of OPDIVO which specifically targets my Melanoma and so far my Melanoma has been kept under check especially after it was exposed to 6 doses of radiation.
💨Everyday, I take two 140 ml capsules of Imbruvica which is designed to keep my non-Hodgkin's Lymphoma under control and so far it has worked... although, since it is a pill and not an infusion, there is an out-of-pocket cost that is very high and I am receiving a grant from the Leukemia & Lymphoma Foundation to pay for it... It is somewhere between $1,000 and $3,000 each month extra.
💨Most of the pills that I take daily are totally designed and focused on my heart (8 out of 12) because of a heart attack I suffered back in 2008/2009... not completely sure... Instead of a triple bypass, I had my arteries cleaned out and stints inserted (5 all totaled over 3 operations) and after being hospitalized for afib and heart failure, I was told that I would now experience afib for the rest of my life.
💨Everyday, I take a pill for my Thyroid and its regulation because it was damaged by all my cancer treatments over the last decade or so... the pills are good for 90 days only in case the dosage has to be increased/decreased depending upon special tests performed... and, when that is all worked out, I will receive them by mail each month or as needed.
💨I receive alternating CT and PET scans every 3 months which my insurance company has authorized to my Oncologist, but there is no correlation made if my Cardiologist or my Urologist orders one. My last PET scan was CLEAN or showed no metabolic activity however, there was a tumor in my lung that required another CT to be performed in 6 weeks... and, my insurance did not hesitate since it was targeting another concern. This scan is schedule for a week from yesterday.
💨Every two years, instead of every 5 or 10 years, I have a colonoscopy because of the numerous polyps that were removed the last time. I am not sure nor have I been informed that some of my cancer treatments may encourage colon cancer... but, since that is how I contracted my Melanoma, it is high on my list of concerns. However, I have been eating a lot of beans and vegetables all the same.
💨I made several recent trips to my Urologist and finally underwent a biopsy and out of 12 areas tested there was only 1 that offered some concern which the Urologist said would be watched but the odds were that nothing would probably happen.
💨I have been to several Orthopedic Doctors about issues with my lower back and that every once in a while I can bend over wrong and when that happens I can hardly stand up or move my body around in bed, to turn from side-to-side. Exercises can strengthen my back, but my lower back as well as along my spine and in my shoulder joints, I am experiencing more than normal arthritis for a man of my age.
💨While I have never been tested for bipolar disease, my daughter and my mother tested positive and the doctor for my daughter said that in all likelihood I had bipolar disease as well... I remember when I was 19, I was treated for depression because of the MILITARY DRAFT and the Vietnam War but after several months, I just stopped taking my pills. Throughout my life, I have experienced lows and highs but I always managed my own condition by keeping it hidden as best as I could.
Wednesday, December 16, 2020
Middle of December... almost...
Wednesday is also considered to be the middle of the work week and that is true if your work week last only 5 days but for many of us, the work week is at least 6 days and sometimes seven so Wednesday being the middle does not always apply here either.
So, we are left with a day of the week that no one really wants to claim and yet, Wednesdays happen 4 times each month whether we like it or not.
Wednesdays for me marks either the day before I get chemo or the day where I am going to teach a class at night to several evening students, who... like most other evening students hold full time jobs.
Other than that, Wednesdays usually have become that day of the week where I either start to feel better or start to feel worse, depending upon my various circumstances. When I was in the hospital, I was beginning to feel better which was also the case when I had to take antibiotics three times a day for 28 days. However, Wednesdays also represent that day of the week where either the IVIG or the CHEMO has worked its way out of the body leaving me empty and fatigued and looking forward to my next infusion.
If I have not eaten much for a few days prior, Wednesdays are those days where I seem to always eat more than I should have... maybe to compensate or maybe it is the middle of the week and I have plenty of time to return to my diet.
For the most part, I simply wish that Wednesdays did not exist, especially since it always represents either BEFORE or AFTER...
Tuesday, December 15, 2020
Living Until Eighty
Our father died in a hospital room the day after Thanksgiving with no family at all in his room. My brother was in NYC. My sister was at her home. I was with my mother at their house in Chapel Hill, NC and we were on our way to the hospital that morning... I had dropped her off at the main entrance to the Hospital and had gone back to shower as she was up much earlier than me that morning... As I was showering, my sister yelled up at me that he had died before our mother had arrived and she was informed by the nurse once she left the elevator on his floor.
Monday, December 14, 2020
Hypochondriac or What...
As I have mentioned before, it was not until the age of 60 that I began my declining health and while I had a very healthy body at age 60 and it has declined, my overall physical health is still pretty good. Over the weekend, I pruned trees for about a couple of hours and then carried all the cut off limbs across the street to be picked up by our garbage collectors.
However, since I contracted my second cancer and since I have had radiation, and since my age is no longer 60 but 73... I made the mental decision at 70 to start bringing up what I noticed was bothering me at the risk of being considered a hypochondriac. As a result of putting that into action, the doctors discovered that my cancer treatment had screwed up my thyroid.
Then, after stopping IVIG because of a national shortage, I was able to start it again but only every other month instead of monthly because I complained of on-going sinus infections and the doctors agreed that my treatments caused that as well.
Over the last several days perhaps 1-2 weeks or more, I have been putting polysporin on a knot on my penis that grew into an abscess and finally broke open but is still leaking. During this same time, in the mornings when I blow my nose, I notice that there is a lot of blood that comes out which could be another sinus infection. Then, this past Friday while taking a shower, I spit all sorts of died blood and I kept spitting blood for a couple of hours until I washed out my mouth with hydrogen peroxide 3%. At first I thought the blood was also from my nose, but there was a spot on my gums.
During the last several weeks I have also notice my nausea returning as well as afternoon fatigue around 4:00/5:00 pm which may not be fatigue at all because it goes away somewhat if I eat a snack...
My concern is that for 28 days, I took antibiotics 3 times a day after being hospitalized for 6 days with a staph infections and could my body be now retaliating or trying to rebalance after being treated like that... don't know but it is something that I am going to ask my Oncologist at the end of this month when I have my next treatment.
And, isn't is curious how all these infections are clustered together over these last few days.
Sunday, December 13, 2020
Saturday, December 12, 2020
Friday, December 11, 2020
A Spouse's CT Scan
My CT Scan is the week after next and while it is not going to determine if I am in remission, it will provide my Oncologist with a better understanding of the tumor in my lung and if it has grown large enough for me to have a biopsy. Biopsies are not always those kinds of procedures that one looks forward to unless the results are positive and I suppose that there is a 50/50 chance there as well.
While cancer is not always a function of age, age is always a function that something is going to go wrong with one's body (as it is always just a matter of time) and it is that opportunity that older people always must look forward to.
- My physical endurance when working outside has been cut in half
- My ability to walk up the stairs of a cruise ship from bottom to top has been restricted
- My strength to lift objects above my head without shoulder joint pain is limited
- My hip joints hurt when I sleep too long on one side
- My eyes can no longer see the tiny print on a computer screen in dim light
- My back gets thrown out of whack if I bend over wrong
Thursday, December 10, 2020
Thursday
My cancers as well as all my cancer treatments cause night sweats to take place as well, so I am not really sure if it is my body or my cancers or my cancers treatment that are causing these night sweats to happen and here recently the night sweats have been intermittent... and, sometimes they are heavy and sometimes they are light... and, sometimes they happen just after midnight... and, sometimes they happen an hour or two before sunrise.
But, whenever they take place, I can never go more than one day out without having to take a shower for obvious reasons... but, in case you are not following me, my sweating simply STINKS.
The doctors are not really sure what, if anything, there is to do, except ride it out until they happen every night and are excessively heavy.
Fatigue is associated with my cancers and their treatment and also with my Thyroid which the pills have been managing and while my fatigue is not as severe as it once was, it has returned but only in the afternoon, around 3:30 or 4:00 pm... and, when it hits, I can hardly keep my eyes open but sometimes if I eat an early supper/dinner it will go away... so, I am not sure if my fatigue is fatigue or just low blood sugars.
Needless to say, life is interesting these days...
Wednesday, December 9, 2020
Handling Pills
My wife purchased me a pill container that holds pills for each day of the week with AM and PM designations. For some reason, I fill this container up every Friday morning which, in my opinion is neither the beginning or ending of the week and logically makes no sense... but, for some reason that is how it started.
My thyroid pill is intentionally left out.
These pills remain in the plastic bottle container in which they came and this container is left out on the counter each night so that I will see it each morning when I enter the kitchen. This pill is taken, without fail, once our three cats are given their morning treat... after which I make myself my morning coffee.
My pill container is large enough so that I can easily double up with pills if we are going on vacation and planning to be gone more than 7 days... which is more convenient that taking all those plastic bottles.
The pharmacy that handles my IMBRUVICA cancer pills calls me without fail when I only have one week left to arrange my next shipment and confirm my address. Either my Supplemental Health Insurance Provider calls me to see if I need to re-order or I can go online and let them know that way when I need a refill. However, if there are no more refills allowed, then my Provider ALWAYS calls to see if I want them to initiate a call/request to the physician to authorize a new prescription.
All my temporary medicine needs are phoned in to the pharmacy by the physician and I pick them up when it is convenient...
AND... I would assume that this is exactly how other people handle their prescription requirements although one never knows for sure... especially when I see all these older people walking around offices holding a bag of plastic medicine bottles in their hands. I know that doctors ask to see a list of what medicines are being taken but a list can be easily made and carried around instead of a bag of bottles... so, I never know exactly what is on their minds...
Tuesday, December 8, 2020
Creature of Habits -- Sleeping and Whatever...
Coffee is never my first task of the day, I urinate (AGAIN!!!), weigh myself before getting dressed, give the cats a treat, take my thyroid pill (which is always in its pill container sitting on top of the counter so I will see it each morning as a reminder) fill up their bowls with a little dry food... and then, make myself 3 cups of coffee that I pour into a YETI. Each cup has exactly two level spoons of sugar free Cappuccino mix before pouring them into that larger cup.
I then sit down in my recliner after making sure I have my composition notebook (into which I write each day) and my computer... I start out with my composition notebook on my lap but within seconds our Siamese cat has decided that my lap is where he wants to lie. I usually write for a half hour or so, mostly just random thoughts, sometimes poems, and then I spend several minutes updating my blogs. In between, I am making more coffee, urinating, and gentle explaining to the Siamese that I have to get up... however, when I return, he is sitting there quietly and after I sit down and get settled, back into my lap he climbs... or actually jumps.
We pretty much stay together, this cat and I, until my wife decides to leave her fortress of solitude and give the cats the wet treat for which they have really been waiting... and... once that is eating and their bodies properly cleaned the cats retire to all sorts of points unknown where they will sleep for the best part of the day.
My habits are only disturbed by the side effects of my daily or monthly treatments and I am still not confident that my thyroid is being properly regulated as my fatigue has seemed to returned but not in the capacity that it once was... however, I am DROP DEAD TIRED each and every afternoon about tea time as the British say and when Americans say it, they are just trying to be clever.
Monday, December 7, 2020
Not Taking Risks
house at all except for doctors appointments of necessity and treatments. Before, my wife and I were going out to eat once or twice a month but not now... and, I was going to the gym even though none of the people in the exercising and weight lifting room were wearing masks but no now...
Since I have been retired for the last 5 years, I don't mind staying at home because I do that a lot now anyway... but, I'll be damn if I want to get the virus just because I am tired of staying inside.
- heart attack
- heart disease
- ongoing afib attacks
- Lymphoma
- Melanoma
- No Immunity
- Anemia
- Tumor on my Lungs
- Possible colon issues
I am the kind of senior citizen that would not fair too well if I were to be diagnosed with COVID... in fact, I could probably kiss my sweet ass goodbye as soon as the diagnosis is made.
Not all old people are as sick as me but there are other old people who are much worse off than me so I can just imagine what all that they might be doing...
Now is not the time for taking RISKS...
Sunday, December 6, 2020
Saturday, December 5, 2020
Friday, December 4, 2020
I Have Watched Myself Grow Old
So... from age 43-60, there was hardly any aging process at all... at least none that I could detect. I was eating healthy, sleeping appropriately, never got sick, never got the flu, and my wife and I were fast walking 5 miles a day around our community (so it was not always flat) and the healthy eating included hardly ever any red meat, no fried foods, minimal sugars and/or sweets, minimal alcohol, and mostly fruits and vegetables...
My blood pressure was low and my cholesterol was low (both the good and the bad) and the only issue that could have bothered me during those 17 years of relative BLISS was the amount of STRESS that I encountered each day. My career had taken off in that I was working 60+ hour weeks and bring work home on the weekends... and, it was not because my bosses demanded that amount of time but because I wanted to give it or that I felt like my job needed it as I always went above and beyond.
AT THE AGE OF 60... my world turned to shit... not literally but figuratively or metaphorically I suppose would be better because my world of health turned upside down... I was diagnosed with non-Hodgkin's Lymphoma (SLL) and started treatment in 2008. In 2009, it was discovered that I had experienced a heart attack while walking on the treadmill and exploratory surgery indicated that I needed a triple bypass.
My LAD (the widow maker) was blocked 100% and two other arteries on the left side of my heart were both blocked 90%. Instead of having a bypass, I had my arteries cleaned out and stints inserted that took 3 operations in 2009 and 2010. There procedures were performed at Presbyterian Hospital in NYC. My Cardiologist said that because I was so damn healthy that my body created its own bypass by created dozens of vessels to transport blood which is what actually saved my life.
In 2012, Melanoma appeared on the bottom of my left foot probably brought by some of the drugs used for my chemo treatments and after being surgically removed reappeared in force in 2017 which resulted in me receiving radiation treatments. Fatigue and nausea were my daily routine until my doctors discovered that my Thyroid was out of whack due to my chemo treatments. And, while the fatigue and nausea have almost disappeared, they are lurking just around the corner I fear.
A prostate biopsy in 2020 left me with negative results but a high PSA puts me in a situation where I will be monitored often from now on... And, because I had several polyps removed in a 2018 colonoscopy, my new routine for that procedure is now every 2 years instead of 5 or 10... with my next one being scheduled for January 2021.
One would think that this would be enough, but the past July I was admitted to the ER with a Staph infection in my blood and because of afib, heart failure, kidney failure, and a blood pressure of 79/59, I was admitted to the hospital for 6 days. Now my Cardiologist has informed me that once one has experienced afib, it will be with them for the rest of their lives.
My last PET scan that showed no metabolic activity in either of my cancers revealed that I have a tumor in one of my lungs that is just a few CM's in length (too small to biopsy) and I am scheduled for another CT scan in a couple of weeks to see if it has grown.
Because of all the chemotherapy, immunotherapy, and radiation my body virtually has no immune system and is experiencing anemia... so, every other month, I am now receiving an infusion of IVIG which is supposed to help supplement what the treatments have taken away... but, I am still susceptible to catching almost any other disease... especially COVID... and, that scare has kept me in the house unless I have to leave for any doctor's appointment... but, when I do, I ALWAYS WEAR A MASK...
For 17 years I did everything right and was a model of physical health, exercise, and eating habits, but that made no difference at all... and, while I am not angry or feel wrong for what I did, I still don't really understand why it happened to me and not someone else... especially that someone who does not take care of themselves like I did.
Today, except for some major and minor adjustment, I feel pretty good about myself and my health and if you were to see me on the street, you would not suspect that I had a serious heart attack and had been receiving cancer treatments for 13 years.
Thursday, December 3, 2020
My Monthly Infusion of Opdivo
Now that I have lost a little weight, I can feel the hard dead cancer tissues when I rub around the area where the groin meets the thigh... and, it still feels a little weird even though I know the cancer is dead... still, I would like it to be out of my body but that is not possible since surgery in that area takes a long time to heal and could have many complications.
As always, I will stand in line (actually sit) for my blood to be taken and tested and the results given to my Oncologist before my infusion can begin even though this time I am not scheduled for an office visit. This process usually takes about an hour. So, from 7:30 to 8:30 am I will be waiting around playing Solitaire on my phone. Somewhere between 8:30 and 9:00 my infusion will begin and by 9:30 am =/- I will be back in the car, driving home.
I woke up yesterday at 5:00 am for no reason at all... other than, my body taking a practice day for getting up early like it had to do today... it is odd how that happens... and, while I wonder about it, I never question because it always is what it is and never anything more.
Wednesday, December 2, 2020
An Old Letter Found
Today, my wife was looking through her papers and documents not necessarily medical related, looking for a receipt, when she found a letter from one of my doctors and handed it to me. As I read the letter I realized that I had been laboring under a misconception for several months about when I should have my next colonoscopy.
The letter stated because of several polyps found and removed that his recommendation was that I have a colonoscopy every 2 years... when I had been thinking every 3 for some reason. Quite coincidentally, those 2 years will end at the middle of this current month... and on my calendar I had written myself a note to call at the end of 2020 for 2021 which would have been 3 years... so, basically and fortunately, I am still within the range of my 2 year limit as he had recommended even though I was planning on pushing out another year.
Even though the medical letter was misfiled... it was still kept... and, found in the nick of time... so, do I have someone looking over my shoulder and taking care of me?
MAKES ME WONDER...
Tuesday, December 1, 2020
A New Month Begins
For the last couple of nights I have had night sweats, not bad, but still needing to return to bed wearing a bathrobe to keep from coming into contact with wet sheet on the top and bottom. My next infusion of Opdivo is this Thursday and I wonder if that has anything to do with this or not... but, in my mind there seems to be a connection... maybe a weak one, but it is still there nonetheless.
My fatigue has returned as well, but not as bad as it was before, but it is also there and obviously present in my mind, especially in the afternoons when I have done nothing to make my body tired and thus incur its rathe and rathe it is and if you have ever felt fatigued then you understand my choice of words.
Of course and life before, it would always be my thyroid that is going haywire and not my physical body at all... still, my body is old and tired and with the least effort at all, I seem to be developing all sorts of pains and strains in muscles and in my joints: bending over, or kneeling, or lifting above my head.
BEGINNING TODAY
All future articles for this blog will appear on my other blog: JOURNAL FOR DAILY PAGES.... all the internal page links have been switched...
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I met with my Oncologist this morning before my treatment and was informed that my PET Scan no growth with my cancers which is good news, b...














