PAN Foundation

A couple of years ago, my Oncologist decided to stop my chemo infusions to treat my non-Hodgkin's Lymphoma deciding that I should take PILLS instead...  These pills fall into the category of IMMUNOTHERAPY instead of chemotherapy.  And, because they are pills, my supplemental Medicare insurance puts them into a different category where there is a COPAY...  there is NO COPAY for infusions.

The PILLS I have been taking go by the name of IMBRUVICA although there is another name for them which I cannot remember...  and my COPAY each month is $3,000 which goes down a little bit, the more months that I have been taking them.

FORTUNATELY, I was able to get a grant from the PAN Foundation and my entire COPAY is covered each month by this grant.  However, the grant has to be renewed each year and there is not guarantee that I will receive this grant each year.

My renewal month is February...

I will need to call them in the next couple of days.

Wish me luck mentally if you have read this.

On Eating

 

Oatmeal

 

Government Controlled Healthcare

Robert Moffit, a Senior Fellow with The Heritage
Foundation writes:


Washington’s health policy decisions directly affect the life and well-being of every American.

Americans care deeply about health care. While they admire and respect their doctors, Americans are frustrated with bureaucratic paperwork, the lack of transparency in the pricing of medical services, surprise billing and rising health care costs. As a general rule, most Americans are still satisfied with their private or employment-sponsored health insurance, which is financing their access to medical care. Nonetheless, too many still do not have either good coverage or access to the best care.

A major part of the problem is the impact of increasing government domination of the health care sector of the economy. Today, approximately 143.3 million persons are enrolled in, or heavily subsidized by, the big federal health programs: Medicare, Medicaid, the Children’s Health Insurance Program (CHIP), and the Obamacare health insurance exchange plans. In other words, out of a total estimated population of 331 million Americans, 43.3 percent of the legal residents of the nation are enrolled in these large federal health programs or entitlements. While private businesses and households are still responsible for most American health care spending (55 percent), the total government share of 45 percent is expected to grow while the private-sector share is on track to shrink.

Mere numbers, however, do not tell the entire story. As University of Pennsylvania economist Mark Pauly has demonstrated, government policies, ranging from regulatory interventions to tax policies, directly affect how Americans spend their money on health care; and this “government-affected” spending, as opposed to “market-like” spending, reached “close to 80 percent” in 2016 alone. This growth in the government share of health spending has been accompanied by a rapid growth in government control, which has spawned often ill-conceived, economically inefficient, and outdated government interventions in American health care financing and delivery. The result: health care that is too costly, and health insurance programs, in both the public and the private sector, that patients often find too bureaucratic, complex, and confusing.

Today nearly every American citizen, regardless of income or medical condition, has access to either public or private health insurance coverage, financed by large taxpayer subsidies or generous federal tax breaks. Many Americans, however, do not have a choice of health plans that provide personalized, patient-centered care, meaning the kind of health coverage and care that they personally choose and control and that is directly accountable to them. Key decisions on the kinds of health plans, benefits, and payment arrangements that are available are legally reserved to government officials, corporate human resources officials, or health insurance executives.

On the supply side of the equation, federal and state government policies have contributed to the increasing consolidation of health care markets among health insurers and hospital systems, reducing the number of independent medical practices, restricting patient choices and thus driving up consumer costs. In sharp contrast to other sectors of America’s more open market economy, there is far too little price transparency in health care; consumers and patients often do not know the price of medical goods and services until the mysterious bill arrives.  TO READ ENTIRE ARTICLE, CLICK HERE...

IVIG Brings Me Back To Life

Yesterday, I had my IVIG infusion.  It lasts about 2 hours including pre-meds and my Oncologist has arranged every other month for these infusions instead of monthly because there is still a shortage and my needs are not critical.

AND YET...

one day after the infusion, I feel wonderful...

My sinuses have cleared up to the point where there is no congestion.

My loss of appetite has returned.

My sense of clarity and purpose has returned.

My feelings of lethargy and fatigue has disappeared.

IN SHORT...

I feel really, really good.

UNFORTUNATELY...

it will not last more than a couple of weeks before the IVIG infusion benefits wear off and I will return to the way I was feeling until the middle of MARCH when I have my next infusion...   BUT, that is actually good because at the end of March, the college class I will be teaching at night begins.

SO...

all in all, it is still a good day.

Medicare for ALL

Medicare for All is a proposed new healthcare system for the United States where instead of people getting health insurance from an insurance company, often provided through their workplace, everyone in America would be on a program provided through the federal government. It has become a favorite of progressives, and was heavily championed by Senator Bernie Sanders (D-Vermont) during his runs for the Democratic presidential nomination in 2016 and 2020.

Pros
Universal healthcare lowers health care costs for the economy overall, since the government controls the price of medication and medical services through regulation and negotiation.

It would also eliminate the administrative cost of working with multiple private health insurers. Doctors would only have to deal with one government agency, rather than multiple private insurance companies along with Medicare and Medicaid.

Companies would not have to hire staff to deal with many different health insurance companies’ rules. Instead, billing procedures and coverage rules would be standardized.

Hospitals and doctors would be forced to provide the same standard of service at a low cost, instead of targeting wealthy clients and offering expensive services so they can get a higher profit.

Universal healthcare leads to a healthier population. Studies show that preventive care lowers expensive emergency room usage. Before Obamacare, 46% of emergency room patients were there because they had nowhere else to go. 

The emergency room became their primary care physician. This type of health care inequality is a major factor in the rising cost of medical care.


Cons
Some analysts are concerned that the government may not be able to use its bargaining power to drive down costs as steeply and as quickly as Sanders predicts. Thorpe argues that Sanders is overly optimistic on this aspect of the bill.

Other analysts are concerned that insulating people from costs of care will drive up usage of medical care. Drew Altman, who heads the Kaiser Family Foundation, pointed out that “no other developed nation has zero out of pocket costs.”

People may not be as careful with their health if they do not have a financial incentive to do so.

Governments have to limit health care spending to keep costs down. Doctors might have less incentive to provide quality care if they aren’t well paid. 

They may spend less time per patient in order to keep costs down. They also have less funding for new life-saving technologies.

Since the government focuses on providing basic and emergency health care, most universal healthcare systems report long wait times for elective procedures. 

The government may also limit services with a low probability of success, and may not cover drugs for rare conditions.

IVIG Day

Intravenous immunoglobulin (IVIG) is a blood product prepared from the serum of between 1000 and 15 000 donors per batch. It is the treatment of choice for patients with antibody deficiencies. For this indication, IVIG is used at a ‘replacement dose’ of 200–400 mg/kg body weight, given approximately 3-weekly. In contrast, ‘high dose’ IVIG (hdIVIG), given most frequently at 2 g/kg/month, is used as an ‘immunomodulatory’ agent in an increasing number of immune and inflammatory disorders. Initial use of hdIVIG was for immune thrombocytopenic purpura (ITP) in children.

The clinical specialities using the largest amounts of IVIG are neurology, haematology, immunology, nephrology, rheumatology and dermatology. IVIG has had a major impact on the treatment of neurological disorders including dermatomyositis, Guillain–Barre syndrome, chronic inflammatory demyelinating polyneuropathy (CIDP), multifocal motor neuropathy (MMN), myasthenia gravis and stiff person syndrome. 

In haematology it is used to treat immune cytopenias, parvovirus B19 associated red cell aplasia, hypogammaglobulinaemia secondary to myeloma and chronic lymphatic leukaemia and post-bone marrow transplantation. In immunology IVIG is used in the treatment of primary antibody deficiency (PAD), in nephrology, rheumatology and ophthalmology it has been used to treat vasculitis, systemic lupus erythematosis (SLE), mucous membrane pemphigoid and uveitis and in dermatology it is used most commonly to treat Kawasaki syndrome, dermatomyositis, toxic epidermal necrolysis and the blistering diseases.

I started monthly infusions of IVIG about 3-4 years ago because chemo had destroyed my immune system and this would give my body a fighting chance with fighting off diseases.  After about two years, there was a nation wide shortage of IVIG and since my need was not CFRITICAL...  I was prevented from receiving these infusions.  A year or so later and after several months of constant sinus infections, my Oncologist was able to convince the POWERS THAT BE...  that I needed to resume my IVIG infusions.

They agreed, but only allowed me to received these infusions every other month which my Oncologist agreed to and I wonder if every other month is really helping...  but, who I am to fight the system and turn down help...

Today, is one of those days for my infusion.  I have to be at the hospital by 7:00 am and the process takes about 2.5 hours...  some of my pre-meds to keep me from getting sick cause me to sleep for about an hour or so...  therefore, my conscious time does not seem so long...  a silver lining in every cloud can be found...

Currently...

In March of 2020, I decided for whatever reason, to start counting my daily intake of calories.  Doing something like this is not new to me because back in the 1990's, I decided to start counting my daily intake of FAT GRAMS and after collecting that data for over a year, I decided to plot that data on what was called an X bar R Chart to see if I could determine any trends and after calculating was was called statistical control limits, analyzed the data to see if my eating habits were IN CONTROL or OUT OF CONTROL.  I still have that data somewhere.

When I started calculating my calories, my weight was right around 250 pounds although it could increase to 252 and maybe 254 but never went below 248.  After 2 months of collecting calories and trying to convince myself mentally to reduce my caloric intake, my weight dropped down to 240 pounds.  

When I started I was eating over 2,500 calories a day.  Then I tried to reduce it to 2,000 calories a day and then a further reduction to 1,500 calories a day...

A staph infection put me in the hospital for 6 days and the only positive outcome besides being released from the hospital was the fact that my weight was now down to 230 pounds.

My calorie intake started to vary more than I had anticipated where one week, my intake would be between 1,200 and 1,500 and the next week, my intake would be between 1,500 and 1,800 but seldom ever got close to 2,000 and only over 2,000 if my wife and I went out to dinner or celebrated a birthday.

My weight was now below 230 a couple of pounds and for some reason, I lost my appetite just before having to prepare for a colonoscopy...   and, when all was said and done, the day of my colonoscopy, my weight was 213 pounds...  the lowest ever.

Within a couple of days after the procedure, my weight increased to 219, mainly because of fluids I suspect and a couple of days after that and because I got my appetite back, it increased to 221 pounds, but seems to be holding steady as my body reaches a new equilibrium..

My plan is to watch my calorie intake

Maintain 1,500+/- calories each day

Stabilize my weight around 220 pounds

After I am convinced that I have been able to achieve these goals, I will start a plan of action to take my weight down to 205 pounds...  which was actually my goal in March of 2020 when I started.

Healthcare in the USA

According to Gallop.com:

The U.S. healthcare system is in a state of emergency.

Gallup 2020 data show that only 19% of Americans are "very satisfied" with the quality of medical care in the U.S., a figure that has remained largely constant over the past two decades.

And compared with other developed nations, the U.S. ranks highest on chronic disease burden, lowest on access to care and lowest on health system quality -- despite annual national health spending of $3.6 trillion ($11,172 per person).

These problems make post-COVID recovery strategies even more critical. To recover financially, healthcare leaders must unite, collaborate with leaders from other industries and reevaluate traditional practices.

There is no doubt that healthcare leaders have responded to the COVID-19 pandemic heroically, with many using this painful opportunity to embrace new learning and prepare for the next inevitable crisis.

For example, COVID-19 has accelerated much-needed change, such as the digital and technological transformation that many healthcare organizations were trying to actualize before the crisis.

But healthcare leaders still find themselves in a precarious position due to considerable revenue loss. The American Hospital Association predicts that the financial strain on hospitals and health systems due to lower patient volumes "will continue through at least the end of 2020" -- a likely total loss of $323 billion in 2020.

Gallup has conducted research in the field of healthcare for decades, including just before and during the pandemic. A recent review of this research uncovered five forces that are paramount for any healthcare organization's survival -- through the current crisis and beyond.

FIVE FORCES THAT WILL INFLUENCE HEALTHCARE
1. Value based healthcare will change
2. Disruptions in healthcare will be ongoing
3. Healthcare will become more virtual
4. Healthcare organizations will merge
5. The healthcare ecosystem will expand beyond traditional vendors

Health Condition: Excellent

At the present time and with most of my tests behind me (waiting on biopsy results for Upper GI), I would have to say that the state of my health is EXCELLENT...  and, while I am experiencing some fatigue, night sweats, and intermittent nausea, it does not really undermine to any great extent the condition of my health.

Current Reports Indicate

1. Melanoma is under control
2. Lymphoma is under control 
3. No Lymphedema swelling in left leg 
4. Tumor on lung is shrinking
5. No diagnosed arthritis
6. No diagnosed muscle fatigue
7. No blood circulation issues
8. Upper GI reveals nothing
9. Colonoscopy  --  on polyp removed
10. Heart functioning properly
11. Ejection Fraction in normal range
12. No problems breathing - including climbing a flight of stairs
13. Low blood pressure
14. Low bad cholesterol
15. Experiencing positive weight loss
16. Eyes/Teeth experiencing normal wear and tear
17. Quick to recover from operations
18. Positive tolerance to radiation/chemo/immunotherapies
1. Opdivo --  40 Infusions
2. Imbruvica  --  no major side effects
19. Thyroid under control
20. Minimal skin pre-cancers surfacing

At 73 years of age, I would say that my health is in excellent condition considering that I have 2 cancers inside my body...

Meditation

 

ZEN: An Inner Power

 

My New Weight

The morning of my COLONOSCOPY, I weighed a flat 213 pounds and one day after, I weighed 215 pound, mainly returning the fluids back to my body because I did not eat much yesterday on a completely empty stomach that was full of gas.  So, in 10 months, I have lost 35+ pounds since there were numerous times that my weight exceeded 250 pounds...  and, I sat on my chair, on my fat ass, calling others obese...  I was obese as well and those comments were no doubt aimed at myself.

I can again see the veins on the tops of my feet which has not been the case for many years...  not months.  The lymphedema in my left leg will also respond positively because of this loss of weight, especially if I ever fly in an airplane again.  In addition, my heart will function better now that it has to deal with less weight and I should sleep better and have more energy as well...

YES... weight is that important.

My goal still is to get down to 205 pound which means I need to loose another 10 pounds and while that should be relatively easy, my main concern is not allowing my weight to increase that much or rapidly because I think that it is ok to eat a little more because of the lost weight.   Interestingly, the loss of weight did not result from EXERCISE but from EATING LESS.

Weight loss can be good for cancer treatment as well...  although, one has to be careful because weight loss can also indicate that cancer is growing as well; but, for me it is good because my last PET scan showed no metabolic activity.

Getting Over It All

Yesterday was my colonoscopy/upper GI and while the doctor took some biopsies in the upper part of my body and removed a polyp from my colon, my overall results were excellent to outstanding...  so, I suppose that is cause for celebration.

The operation itself lasted only 50 minutes as opposed to the 120 minutes I was anticipating and the recovery time was only about 15 minutes and I had my clothes on waiting for the doctor to report.  There was nothing in my stomach or esophagus like a cancer or a tumor or anything that could have caused my loss of appetite and nausea after eating.  But, he will obviously know more about the biopsy results come back which will, like always, take a week or more.

It was odd, but instead of being pushed in a wheelchair to my wife's car to be taken home, I was was escorted by a nurse who asked several times was I doing ok.  My wife had to sign a document saying she had picked me up which she nor I ever had to do at the other places.  Of course, this was TENNOVA and I imagine for profits must need to make sure they are keeping their costs down.

Once home, I took a nap for 4 hours as I was weak and had not gotten much sleep the night before.  In the early afternoon, I had a meal of rice and vege sausage and a couple cinnamon swirl coffee buns and some lemon and peach jello...  all of which was a strange combination but the food was convenient and easily available....   but, only after I had taken a shower and gotten all that hospital smell off of me.

My body still feels a little weird as it fills back up with food and the growling and gurgling of my stomach can be easily heard by those nearby.  It will probably take me until tomorrow before I am somewhat back to normal.

It's A Good Day For A Colonoscopy

This morning I have to report to the local hospital at 6:30 am which is about a 5 minute drive from the house.  Ordinarily, I would not even go to our local hospital to replace a bandage, but my doctor is driving up from Knoxville for the procedure...  He is typically up her one day a week for some reason and I take advantage of his kindness.

My procedure, I have been told is at 7:30 am and I am the second one of the day...  so, I should be done about 8:30/9:30 am (give or take) and out by 10:00/10:30 am if all goes well...  and, there is no reason why all should not go well...   there has never been a problem before...  other than removing polyps.  I am also having an UPPER GI which should add about 30-40 minutes which is the 9:30 am end time...   and, if I feel like it, my wife and I might just drive to our local Perkins for an omelet and pancakes.

This morning, and because of the prep for my colonoscopy, my weight was below 220 pounds which is good...   nice and slow losing program...  and, about 15 more pounds to go in order to get to my 205 goal.  All things, even though they seem negative at the time, end up being positive.

Another COVID Test

Today, I am required because my colonoscopy procedure is set for tomorrow, to have a COVID test at the hospital where the procedure is to be performed.  I have had two previous COVID tests, my first test was when I was hospitalized with a Staph Infection, my second was the day before my prostate biopsy, and this third one will be right before this next procedure.

I have had a Q-tip stuck up my nose to the point that it feels it is at the top of my head (knowing it is not) and I have had to spit in a cup and get my urine tested...  So, it will be interesting to see what happens today.

I was hoping to get this done as early as possible so I can return home and take a little nap before I start drinking that mixture that will begin the evacuation of my colon...   I have put several rolls of TP beside the commode and removed all objects that might prevent easy access in the middle of the night...   lol

Pre Prep Prep

For the last couple of days, I have had to eat what the papers I was given refer to as a light diet...  no heavy foods like pizza and hamburger...  so, I am assuming that rice, fish, and eggs are ok for me to eat...   I also have to stay away from beans and corn and foods with lots of fiber as that clogs the scope.    And, if you have not guessed it by now, I am preparing for a colonoscopy...  I am getting one every two years because of my cancer history and because some pre-cancerous polyps were removed two years ago.  I will be having an Upper GI as well because of a "loss of appetite" issue that has presented a little concern.

While today is not that bad on the body, tomorrow will be the real test as I will be eliminating all waste from my colon while at the same time, I will be putting only liquid back into my system and according to the instructions, will be continuing with the prep at MIDNIGHT which means that in addition to little food, there will be little sleep as well...

I have also contacted the dentist with a tooth ache that has been persistent for the last several days that I cannot or should not do anything about until after the colonoscopy for fear that the procedure may have to be delayed...

It all comes at one time...  or appears to anyway...

Peace Be With You... and You With Peace

 

Our CORONA Pandemic

 

More Than Just A New Norm

My body, over the last 12 years, has been through on-going chemo and immunotherapies, radiation, surgeries, heart attack, heart surgery, Staph infection, hospitalization, afib, heart failure, kidney failure, all sorts of scans and blood tests along with eye issues, sinus issues, dental issues, anxiety or panic attacks, and the general uncertainties that come from having to wait around to have tests performed or wait around for the results of those tests.

Some people tolerate this lifestyle better than others which is normal and expected.    

And, when it first started I was 60 years old and tolerated it fine but I have since realized that the older I become the less toleration I have which is exactly the opposite of what I thought would happen to me.  I am more anxious, more concerned, less patient...  while I also understand that this is how I will be living my life for the rest of my life.

• Sensitivity Increases to Hot and Cold
• Increased intolerance of humidity
• Increased eating disorders
• Increased irritability
• Loss of appetite

My nausea comes and goes as does my fatigue and for a while and every now and then, I experience lethargy to the point where, unlike fatigue, I just do not want to do anything other than being too tired to want to do anything.  When that happens all I want to do is sleep as often as I can to offset my lack of motivation...  which always leads me into a series of different levels of depression...   some of which I know are still with me after several months but under a mental type of control not giving credence to their existence.

Out of the Blue

I have wondered once or twice where the "out of the blue" statement came from and someone probably shared its origins with me once upon a time, or I did a Google search and found the answer, or I suppose both could have happened...  but nowadays, I don't really give a shit where these clever phrases come from as long as I use them appropriately...  and, it would appear, at least to some of us who have been battling with cancer for over a decade with infusions of chemo pretty much taking place every month...  that, our bodies sometimes...  instead of feeling good...  feel pretty crappy...  then, we can go for weeks without feeling that bad at all...

These little spells happen...  "out of the blue"...  with no rhyme or reason and no justification...  they just happen.  One can eat normally or too much or hardly at all and they could arrive that morning, afternoon, or early evening.  Sometimes, Prilosec helps but most of the time, it does not.  And, believe it or not, sometimes GAS X helps even though it was never intended for this purpose.

The human body is a great gift and can survive damn near anything as long as it is well cared for...  which in my situation was the case, at least until the age of 60...  And, perhaps that caring is why I have lasted as long as I have...  but, it is still very strange that "out of the blue,"  I just feel like there is nothing that I can do to make myself feel better and that whatever is going on, I just need to ride it out.

Adding Procedures

Last week when I met with my Oncologist and reported some symptoms to him, his response was that I should contact a gastrointestinal doctor to which I replied that I was having a colonoscopy in a couple of weeks...  his response was again to contact him as soon as possible and perhaps they could add a procedure if warranted and I would only have to prep once.

I reached my gastrointestinal doctor and shared the symptoms and an UPPER GI was added to the already scheduled procedure which meant that he had a particularly light day that day and adding would not alter his schedule too bad...

My additional symptoms were:

• loss of appetite
• loss of taste
• loss of 8-10 pounds in a month
• feeling of nausea after I eat
• discomfort in abdomen when getting out of bed as if a muscle has been pulled 

An Upper GI looks for:

• tumors
• ulcers
• hernias
• diverticula
• strictures

When one does a little research without really knowing what to research that can be a problem because all sorts of things could be identified as being a problem...  But, it is more likely that my Melanoma Cancer Treatments have caused or could cause an intestinal toxicity more so that my Lymphoma Cancer Treatments...  Assuming that there are no other kinds of cancers in my intestinal areas....   But again, I am getting ahead of myself.

Full Body Scan

Every 3 months which has been reduced by me from every 6 months, I receive a full body scan from a dermatologist and a full body scan is conducted with the patient being fully nude or partially nude and willing to remove remaining clothes when requested.

Treatment for Lymphoma has caused my Melanoma and treatment for Melanoma causes other skin cancers to appear that are not totally threatening at first but if left alone they can turn very aggressive and deadly.  I have had several of these carcinomas surgically removed, called squamous.  There was a large one removed from the top of my head and have a dozen smaller ones from my arms.

Since I am now prone to CANCERS, I want to get checked as often as possible or as often as the INSURANCE COMPANIES will permit...   which is the biggest irony of all, letting the insurance companies decide healthcare policies and procedures...

Today, is the day that I drive to Knoxville for that scan.  And, while the office is relatively easy to get to, and the wait is no longer than 5-10 minutes, and the scan only lasts about 5 minutes, and the fact that it is absolutely necessary, does not alter the fact that it is still a pain in the ass to have to put one's self through this indignity...  but, after doing this for a good 5 years, I don't really give a shit about that either anymore.

Infusion Addiction

Ever since my recent Opdivo Infusion, my body (relatively speaking) has felt pretty good and this got me to thinking....  could a body build up a need for Opdivo like an addiction.  My Oncologist does not think so, and perhaps it is just all mental, but I swear that my body does feel better after an infusion and the same thing happens when I have an infusion of IVIG.... which is exactly what is supposed to happen with this one, but not necessarily the other one.

Still...  something is going on...   and, there are stories based upon fact that receiving Opdivo over time can cause ADVERSE effects/affects on some bodies and it seems that after #40, I am tolerating ok...  which got me to thinking that maybe Opdivo is having a different kind of effect/affect on my body that heretofore has not really been studied.

My side effect symptoms could be coming from several sources, not just immunotherapy drugs and infusions but gastrointestinal problems, cardiac problems, not being active for a while, and/or minor infections like sinuses or respiratory.

Bob Ross -- Several Years Ago

 

Bob Ross -- Season 1 - Episode 2

 

New Years Day

 

Good News is Good News Mostly

Good News is always good news I suppose since good news is never misconstrued as bad news and I suppose vice versa is applicable here as well...  but, who in their right mind ever thinks like that???

My visit with my Oncologist was nothing but good news.  All the results from my blood work show improvements in all areas except the number of red blood cells still making me a little anemic and the results from my most recent CT scan show the damn tumor in my lung SHRINKING even though the doctors say it is too early and with a biopsy to define it as cancer.

So, the meds I am taking for my Melanoma, my Opdivo, more than likely were responsible for the results of this shrinking tumor...  which now beg the question:  how did the tumor get here in the first place?  So...  one could probably say will relative confidence that Opdivo KILLS but it does not prevent...  and, I suppose one is just as good as the other...  for  person like me...

Today's infusion of Opdivo marks #40 which in and of itself is a great milestone because many people do not make it past #10 without having some sort of adverse side effects...  but my body tends to tolerate rather well, other that ruining the functionality of my Thyroid that will require medication for the rest of my life

Still...  it was a good day at the doctor's office...  but, there is still this other problem of which we must contend and the Oncologist thinks that I should see a gastrologist since my symptoms are in their area of expertise...  ironically, I am seeing one in a couple of weeks for a colonoscopy but the question is:  do I update the doctor with this new information before or after the procedure?

What an interesting life once one gets beyond 60...

Morning Reflections

What is rather interesting and as I am fond of saying, at least to me, both of my arms are bruised very little; in fact, what bruises that used to be there are almost gone...  what does this mean?  Well, it means that I have not bumped into anything recently either while walking or when I was doing something else which is typically the case for me.

Tomorrow, we I see my Oncologist after 2 months, at least my arms will appear almost as natural as they can get...  although, it is today that I am taking down the outside Christmas Decorations and there is no telling how clumsy I will be.

I have more than normal to present to my Oncologist this time what with sinus infections, an off and on again bleeding nose, night sweats, day sweats, but this time and unlike previous testimonies I have a loss of appetite along with a loss of taste and smell.

Paying attention to all these little details can be a pain in the ass most of the time and I have stopped sharing with my spouse as I believe she simply got tired of hearing and me fretting about all of the possibilities and what I should do if any of them were to happen...   I suppose that is good for business but not always good for family health.

Still... I am who I am...  and, it is not really my fault if others don't like it...  but, they believe that I should change for them rather than them changing for me...  and, therein lies the reason for our 50% divorce rate in America, including THE BIBLE BELT.

Presently

I am going to see the Oncologist on Thursday along with my monthly infusion of Opdivo, but this visit will be more than the normal routine monthly visit because I will be informed of the CT results and if this lung growth is increasing in size and large enough for a biopsy.  Plus, I will be able to share the most recent systems of my physical health which seems to me to be an indication that something negative or less than positive is going on inside me.

I took a shower this morning and almost took one last night before going to bed because my body odor was horrific...  and the odd thing is about that...  I had taken a shower just that morning and sat around all day not even feeling like I was sweating...  but something was oozing out of me...  and, it wasn't pleasant.

The last time I mentioned that, I was further tested and was put on thyroid medicine...  I wonder it it again needs adjusting?  I was lethargic back them as well as I recall but still had an appetite.  Who knows what the hell is going on inside...   all I know is that something is and I just don't feel good anymore.

Back to Basics

The Link Often Overlooked

Over the holiday season, some of us who are still religious, refer to as Christmas, I ate your typical meals including sweets, always making sure that I ate no more than 2,000 calories, but tried to remain under 1,800 more like around 1,500 and did a pretty good job with with goal but never felt like I was actually starving myself or that I was walking away hungry.

I always get on the scales in the morning after I pee and before I get dressed and while our scales might be off a bit, they are at least consistent with that difference and my weight continues to drop about 1 pound each day although sometimes it will go up a pound or two but always drop back down to where it was before...   I am now at 221.6...   Christmas changed my eating habits a little but before I was averaging between 1,200 and 1,500 but hardly ever over although sometimes under was happening when I really did not feel hungry.

When one thinks about weight loss since March of 2020 until our current time, 9 months later, I have lost a little over 25 pounds, about 30 to be more exact since I started out with a weight of 252...  so, there has been a loss of 30 pound over 9 months or roughly 36 weeks which can be easily calculated to less than a pound a week which is an acceptable plan of action in anyone's book

However, about 10 of those pounds were lost in a period of a week +/- due to a staph infection that had me hospitalized for 6 days which undecidedly gave me the advantage when it came to losing weight even though the experience was one I would not want to repeat anytime soon.

While that seems like an interesting feat to accomplish, I had a little help from my own body because for some reason and without a good explanation (on my end) I have lost my sense of taste along with my appetite and along those two, I seem to be a lot more lethargic than normal which has nothing to do with feeling fatigued...  as instead of feeling tired, I feel like I don't want to do anything at all...  I find myself taking afternoon naps that sometimes last well into the evening when it is time to go to bed again...

My night sweats are back as well but with a very low intensity and there are aches and pains all along my lower back and across my stomach...  but, these do not ache like aches and pains from the flu and seem to be centralized to those two areas as if they are coming from sitting too much or lying too much...  but again, I am no doctor so I cannot say for sure.

I don't feel like I have a temperature although sometimes, I am cold to the point of shivering while at other times, I can lay on the bed without the benefit of sheet or comforter and feel neither heat nor cold as I maintain a comfortable body temperature...  all in the same room with the same temperatures...  seems kind of odd to me but I don't know what it means.

There are no muscle or joint pains in my shoulders, hips, and knees or up and down my backbone which according to all my scans are areas of extreme arthritis; however, sometimes when I reach around my right arm to the left side of my neck and try to wash my back as much as I can, there is discomfort from that joint but that is the only one and that is the only time it hurts.

I can also walk up and down the basement steps without having to breath heavily the second time which is what I just did this afternoon when we were putting up the inside Christmas decorations...  the front yard has yet to be cleared since there is still snow all around all the objects we have out there, even though all our roads except for isolated patches where the sun don't shine are completely clear.

Another Silent Movie

 

Charlie Chaplin

 

Christmas 2020

 

Christmas Eve -- Christmas Carols

 

The Perils of Cold Weather

Every time it gets to be cold weather here in the valley and we have to turn on our electric heat, my
sinuses rebel like a drunk teenager on prom night...  there are some kind of canal connecting the sinus to the ears and the electric heat, for some reason, causes them to clog up and I loose 10-15% of my hearing and I feel like I need to go to the clinic and get my ears cleaned out.

Yes...  we have a humidifier and no...  it does not help...  and, she's a big beauty of a humidifier holding about a gallon of water that is filled up twice a day...  once in the morning and again in the evening around sunset...  give or take.

My body, like my father's body, has a tendency to sweat at night, so it is difficult for me to say if cancer or the cancer treatments, or just my body is causing it to sweat.  Sometimes, the sweating is heavy sometimes it is not, but it is sufficient for me to need to take a shower each morning.  Cold weather makes it more noticeable especially since I have to get up about 2-3 times at night an pee.

Getting out of the bed sweaty is an interesting experience if you don't mind shivering and getting back into the bed with cold wet sheets is another one...  so, I have learned to put on a bathrobe before returning to bed and because of that extra layer encourages me to sweat even more.

Besides, our bedroom seems to be the coldest place in the house which is great in the humid days of summer but not to good when it is cold...  still, it gets the blood flowing.

Another CT Scan

Last month when I was given the results of a recent PET scan, my Oncologist shared with ne that data that indicated there was a tumor in my lung and while there was nothing about which to be alarmed, he recommended another CT just of that area in about 6 weeks.  My first thought was that nothing to worry about does not reconcile with another CT in 6 weeks, but I said nothing.

Today, I am having that CT and in a way I like CT's because I can eat and drink anything that I want right up to the moment I walk into the scanning room, at least theoretically but I would suspect that once you start drinking that tasteless liquid for a hour prior to the scan, they would prefer that you ingest nothing else into your system.

Depending upon the results of today which I will not know about until the end of the this month, there could be a biopsy performed but nothing was discussed after that...   but there are not really that many options out of do nothing, surgery, and/or treatment.

Lucky me it was caught early...   Strange how the tumor grew so fast in 3 months since my previous scan did not pick it up.

Losing Weight

I will not know for sure how accurate our scales are until the end of this month when I see my Oncologist and have my monthly infusion because whenever I see the doctor, my weight is taken and I believe that their digital scales are more accurate than mine. 

And while my appetite has all but disappeared, my weight is steadily decreasing from one day to the next...   it seems hard for me to believe that this current weight is coming from simply eating right around 1500 calories each day.

It is also odd, at least it seems to me, how my fatigue is off again on again along with a couple of days of flu like symptoms and then it all disappears...  My monthly infusions would not suggest that this behavior is associated since its onset was quite immediate and not gradually, nor would one think that receiving IVIG every other month is often enough to prevent what is happening either.

Kinda like being caught between a rock and a hard place and the only open door that is not quite shut is the CT scan I will be having tomorrow on my upper chest to ascertain if the tumor in my lung is growing and if so, is it big enough to perform a biopsy?  Now that could be the culprit of it all.

Achy Muscles All Over

Weekends always mark the end of a week and the begin of a new week as if one merges seamlessly into the other not just without fail but with too much notice, like the straight line of a cycle.  And, while neither the week nor the weekend means that much to those of us who are retired, this current weekend, ending today marks in my mind at least two days of feeling poorly...  not so much tired or hung over but more like my whole body has been aching whenever I get up and start to move around...  and I sorta wish I had not gotten up at all.

My appetite has been lessening these last couple of months as I have been training myself to eat less at a sitting but eat more often...   aiming for 5-6 times a day or about every 2 hours:  10:00 am, noon, 2:00 pm, 4:00 pm, and 6:00 pm and if there is anything going to be eaten at 8:00 pm it can only be fruit and cool whip or right around a 100 calories, but more importantly...  it is a light snack.

However, these last couple of days,. not only have I lost my appetite when every time I eat and regardless of what that might be, my stomach immediately feels upset...  not bloated or nauseas but like there is too much acid and I need saltine crackers or a Pepto bismol tablet.

At my age it is a strange sensation because I am concerned that I might be over-reacting if I say something or if I don't bring it to anyone's attention that I will regret it later.  They say old age is a bitch....  but, in my situation and because my body has already been exposed to more than is normal, I am a little gun shy when it comes to ignoring a "sickly" sensation...  but, I do think that I should give this journey at least one more day.

Eating Habits Learned/Acquired

 

Nowadays

At the age of 40, I went cold turkey on cigarettes and reduced my consumption of alcohol to just a few glasses of wine on most every holiday...  until I reached the age of 60 when I started my chemo treatments and had to give up all alcohol regardless of the frequency or event.  At 70, I made sure that there were double sheets laying on top of the sheet on the mattress and that a bathrobe was convenient just in case I sweated. 

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

A work-in-progress is a business terms and refers to the raw materials that are in the progress of being improved or having financial value added to them.  Once that value has been added they are referred to a finished goods and are no longer 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.

But, works-in-progress can damn near be considered anything...  for example:

• 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.

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.

Middle of December... almost...

I always think of the middle and end of the month as the 15th and 30th because those were the two days of the month that checks were typically written for most of us...   although, some get paid every Friday and some get paid on the last day of the month...  yet, for me...  those were always the exceptions.

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...

Living Until Eighty

As I recall reading in the Bible, God gave us 80 years of life and I am sure that HE assumed that 80 years would be enough to do whatever it is the HE wanted us to do.  Some of us live less that 80 while others live more and if you are in good health, it is reasonable to assume that you will live more...  My mother lived to 95 and almost to 96 six before she passed away with all her children sitting around in her bedroom at the hospice center waiting for it to happen.  When she quit eating, they told us our mother was near the end.

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.

How will I die?

Who will be around?

Will I be alone or with family?

At 73 years of age right now, I am only given 7 years more to get my affairs in order and make all the necessary arrangements.  However, there are no affairs to get in order and no arrangements to be made...  Everything I own will be given to my wife and my body is being donated to medical science. It will be the responsibility of my wife to dispose of all my non financial property as I see no reason why she should keep any of it.

My brother in NYC and I seldom talk and he has informed me that since there is 8 years difference in our age we have nothing in common.

My sister still lives in Chapel Hill, NC with her husband and the families of their 3 children and while she is my sister by blood, we too like my brother and I have nothing in common and she has decided that she will only communicate to me through my wife.

My daughter lives in China and has a productive, wealthy life and lives with her wealthy British boyfriend and has decided not to communicate with me for about 2 years now...  so, I doubt very seriously that she would be too upset once she learned that I was no longer among the living.

My wife and I have no debt.

We own our home and vehicles.

We have no investments other than the Credit Union.

We have just enough money to pay our bills for another 25 years taking my wife to age 93.

My wife has one son who would inherit everything.

Life and Death for us is really all very simple.

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.

Crosby, Stills, and Nash 1969

 

Jimi Hendrix at Woodstock

 

A Spouse's CT Scan

Today, my wife goes into UT Medical for a CT Scan to see if her Lymphoma Cancer is still in remission as it has been for the last four years and there is a 50/50 chance that it will remain that way so one might say that the odds are in her favor...  although, some people do not believe in odds, nor do they believe in luck as the saying goes, luck favors the prepared.  But luck and the odds also favor the will of God and all those who believe in the teachings of Jesus...   and, if you are not sure what it is that Jesus said or taught about, all his words as they were remembered by Matthew are in RED in most Bibles.

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

OLD AGE IS A BITCH MY FRIENDS...  and, it is bound to get worse before I die, since there is little possibility that it will ever get better.

No doubt, my wife's CT Scan will be clean and her cancer remains in remission and each time I look over at her, she has her earphones in and is dancing about as if she really does not give a damn...  we all need to follow her example.