Almost 14 Years

Six months from now, I will be celebrating the 14th year passing since I was diagnosed with cancer...  and, five years into my treatment for non-Hodgkin's 'B' cell Lymphoma and probably because of certain treatments, I was diagnosed with Melanoma that subsequently moved from my foot to my groin to my neck where it was surgically removed and found to be dead because of my radiation and immunotherapy treatments.

After my two cancers were under control, my Oncologist informed me that he wasn't sure if he could stop them from growing because both of them had turned aggressive, but he stayed with the most recent protocols in fighting both cancers and did not back off on either one; consequently and fortunately, the two different types of treatments complemented each other and he was able to get both my cancers under control, at least for the time being.

I told my Oncologist that he should published his treatment of me and get some national credit, which he declined and said he was just fine with his life as it currently was.

Looking back at these 14 years, there were times where I was sicker than a dog and vomiting so consistently that my wife had to take me to the ER...  those were days that I would rather not relive under any circumstances unless I absolutely had to.

• Am I lucky?
• Did I have the right Oncologist?
• Was God looking out for me?

Ya know...  I think it was a little bit of all three...  but, to be quite honest with you (not to imply that I have not been), I have felt and continue to feel that there is something left for me to do...  and, that is why I am being kept alive.  I have no idea what it might be but I have spent my entire life preparing for it nonetheless.

Living with cancer is not as comfortable as one might think it is, especially if one is doing fine and feeling good, but there is a constant threat hanging over one's head as to what might happen...  if this...  or if that...

Plus, one must eat differently than others.  One must not drink alcohol if in very small quantities like a glass of wine once a week or once a month.  One must stay out of direct sunlight with UV clothes of the highest sunscreen.  One must get a good night's rest and one must learn to manage one's stress as it does have an impact.

I find myself eating lots of veges, onions, garlic, peppers, black beans, fruits, and other foods high in anti-oxidants.   I may have a hamburger and/or a hotdog once a year.  But, I may have a pizza every other month.

The killer of all cancers is a LOW IMMUNE SYSTEM and more people die of some other disease that they die of their cancer because of their low immune system.  For example, I would not have survived COVID.

The one thing that I do not get enough of is exercise but my fatigue which is minimal most of the time is still strong enough to provide me with the motivation to exercise...   even just walking around the community for 30 minutes would help.

Cancer Treatment on Dental Care

Most of the literature that revolves around cancer treatments, including radiation, as it pertains to harming one's teeth, states that this might happen if and when the radiation is around the neck or above...  and, while I believe that the literature is correct in its analysis, I believe that it fails to properly address the long term impact of both chemotherapy and immunotherapy on one's teeth.

I say this because, I am in my 14th year of cancer treatments that includes over 150 infusions (both chemotherapy and immunotherapy, 6 radiation treatments, and about 3 years now taking daily immunotherapy pills.  Here recently, I have had 3 situations where parts of my tooth have chipped off while eating, causing 3 crowns, and 1-2 root canals...  and, I say 1-2 because I have yet to find out the exact status of this 3rd chipped tooth.

Interestingly, all of my life, all of my dentists and there have been several have told me that my teeth are very strong and that I should experience minimal cavities, and minimal problems with my teeth...  and, that I should consider myself fortunate.

SO...  why were all these dentists wrong?  Or, were they wrong?  

Sure, I can accept the fact, that as one ages, one's teeth has to age as well but not after being so solid and strong...  I would think...  therefore, the only other factor, and yes I do take proper care of my teeth, is all of my cancer treatments has had a cumulative  effect on my teeth.

Normal Again: Whatever that is

After several days of staying inside, plus cooler temperatures, and elevating my feet, my left foot and ankle has for the most part returned to normal...  as I can clearly see again the veins on the top of my foot and the swelling is just barely noticeable.  As with every other experience, I learn that when riding in the car for two hours or more and regardless of how I try to extend my left leg, I am simply going to need to wear a compression stocking.  

These stockings are easy to find in Drug Stores even though they are less than medical grade, they still provide adequate compression.  I had purchased a medical grade compression stocking at the very beginning of my ordeal...  that is to say after foot surgery to remove a melanoma in 2013...  and, when the leg did not swell as much as was anticipated by the Surgical Oncologist, I was informed only to wear the stocking as needed.

We were all under the impression at that time my melanoma was gone, but in 2017 it returned in my groin area with a vengeance and obvious bias against my body...  I started infusions of Opdivo and Yervoy and a year later my Oncologist suggested that I undergo radiation treatments that would be accompanied by on Opdivo treatments as the radiation was inclined to supercharge the Opdivo...  the concept worked perfectly in my body but my Lymphedema remained.

At one point I thought my days in the Hot Tub were over but after submerging myself in the hot liquids for 30-40 minutes, my left leg show no signs of swelling, so I continued my ritual of hot water relaxation unless I noticed swelling which was typically caused now by too much sitting without legs elevated.

T. G. I. F.

After 13 years of cancer treatments for non-Hodgkin's "B" Cell Lymphoma with 6 years on concurrent treatment for Metastatic Melanoma (Braf negative) along with6 treatments of concentrated radiation, my overall health is good to excellent but I continue to deal with FATIGUE that leaves me with the mentality of not really wanting to do anything... even though there are many things that I need to do, now that the weather has improved...

There are all sorts of projects outside the house that need to be accomplished on a regular basis like mowing the yard and weed eating along with other activities that include transforming flower beds into grass areas, putting down mulch, building up the rock areas around the house, securing the water hoses so that they do not leak, staining the deck boards that were put in last year, and other little maintenance projects which involve wear and tear around the outside of the house.

My FATUGUE stands in the way of these projects and I need to force myself to take action and/or the initiative to get the project started.  Each of these projects will be worked on just a little each day but the fact remains that I needed to get started.

It Never ENDS...

In 2007, I was diagnosed with Non-Hodgkin's "B" Cell Lymphoma which is also referred to as SLL (Small Lymphocytic Lymphoma) and quite interestingly is treated the same way and considered to the be companion of CLL or Chronic Lymphocytic Leukemia.  Leukemia starts in the blood while Lymphoma starts in the lymph nodes...  it is also widely believed that SLL can turn into CLL at some point in time.

In 2012, I was diagnosed with braf negative acral lentiginous Melanoma in the foot which was surgically removed and later moved to the groin and then to the neck.  It is entirely possible that my Melanoma was contracted because of the drugs I was taking for my Lymphoma.

Over the past 13 years (2021 begins my 14th year) I have received:

1. 150+ chemo infusions
2. 60+ Hemoglobulin infusions
3. two surgeries
4. 6 radiation treatments
5. 20+ CT Scans
6. 20+ PET Scans
7. 2 MRI's
8. Immunotherapy 

In 2009/2010, I experienced a heart attack and underwent 3 heart surgeries to install stints rather than enduring a triple bypass.

For the rest of my life, I will have:

1. monthly chemo infusions
2. daily immunotherapy pills
3. 2 CT scans a year
4. 2 PET scans a year
5. 4 full body scans by a Dermatologist
6. quarterly visits to a Cardiologist
7. dealing with constant fatigue and nausea
8. dealing with intermittent night sweats
9. monthly hemoglobulin infusions
10. constant anemia
11. on-going anxiety attacks
12. a non-existent immune system
13. susceptibility to other diseases
14. the anxiety of my cancers turning aggressive

And...  while there may not be that much to report from one day to the day, the items listed above have a direct and cumulative effect/affect on one's state-of-mind which causes sporadic depression...  to mention this every day or even every week or monthly seems kind of REDUNDANT to say the least...  but, let me assure you that having cancer, especially the kind that cannot be cured, is NOT FUN AT ALL.

I Have Watched Myself Grow Old

Ever since 1990, when I moved to TN from NC at the age of 43, I have been aware of myself physically and mentally rather than via instincts and have, for the last 30 years, watched myself grow old...  older and older each day...  each week...  each month...  each year...  each decade...  and, the aging process is not always that pretty or welcomed.  I lost my closest friend along the way who died of colon cancer in his 60's and my other closest friendship was ended when I decided to have my taxes prepared locally.  Losing friends is not so easy...  and, making new ones is harder than one might expect...  so, for the last 30 years, my friends have been my co-workers and/or the friends that my wife brought into this marriage...  who would not really be my friends any longer if we were ever to divorce...

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.

Always Something

If you recall, my cancer was first diagnosed when I was 60 some 13 years ago and there is a good probability that because of all the various chemo regimes through which I went, one of them caused me to contract a second cancer of Melanoma that traveled from the bottom of my left foot to my left groin area in just under 5 years.  And, it is because of this migration that I was given radiation along with an immunotherapy of Opdivo which seems to have substantially reduced it and actually killed a bunch of it.

It is difficult to ascertain whether the dead cells are Lymphoma or Melanoma because they are a combination of both and the only way to be sure is to perform a biopsy which if they are dead seems rather irrelevant.  However, whenever I lay down on my back and feel around the left side of my groin, I can feel the lumps of dead tissue there that will never disappear and be constant reminders of what I have endured with my cancers.

Every day I take two pills for my Lymphoma and every day I take medication for my Thyroid because it was damaged by my cancer treatments.  Every month I have an infusion to control my Melanoma and every other month, I have an infusion of IVIG to help boost my low immunity and improve my anemia.  Every 3 months, I have alternative CT and PET scans to see if my cancers are still under control and every 3 months I have a full naked body exam by a dermatologist to see if my continued cancer treatments are creating any new skin cancers which is often the case as I have had half a dozen removed since this process was started.  AND...  every three years now because of my cancer treatments, I have a colonoscopy because my treatments could trigger cancer there.

Next month, I have a special CT scan to see if the tumor in my lungs has grown large enough so that a biopsy can be performed.

When one is living with cancer...  there is always something.

Keeping the Faith for Over A Decade

ODYSSEY is a Greek epic poem written by Homer (a poet) about the long journey of a man named Odysseus (Greek King of Ithaca), or a long and eventual journey or experience...

My journey/experience has lasted almost 13 full years and while this journey started with one cancer:  non-Hodgkin's "B" cell Lymphoma, treatments for that cancer resulted in me having to remove 4 Squamous Cell Carcinomas on my upper body and a Melanoma off the bottom of my foot as well as upsetting the balance of my Thyroid.  Interestingly, surgery did not prevent my Melanoma from aggressively returning.  

My body, over the 12+ years, has suffered bouts with nausea, violent vomiting, constant and extreme fatigue, as well as the stress of weight gain (due to steroids) and the anxieties associated with my cancers becoming aggressive and unstoppable.What has been the most traumatic is not the nausea and vomiting because they can be offset or stopped with drugs and/or visits to the ER if necessary which is what I had to do several time; but the constant and extreme fatigue...  pills WILL NOT STOP fatigue from taking place...  Once fatigue starts, it NEVER leaves...  HOWEVER, recently it appears that my body has finally come to terms with its fatigue and is no longer (at least temporarily) present to the extent that I do not want to do anything.

WILL EVERYONE experience what I experienced?  Maybe or Maybe Not, the experience could be the same, no as bad, or worse...  each individual is different...  Last year, radiation was used with Opdivo infusions to KILL THE MELANOMA and it worked whereas in some individuals under similar circumstances, the combination has not worked.

Forgot to Mention

A couple of years ago, I had 6 doses of unusually high radiation over a 4 month period to combine with Opdivo and quickly kill my Melanoma...  at least, those were the results of the clinical trials held at MD Anderson in Texas.  Each dose lasted 20 minutes and I had one each week for 3 weeks.  After a period of 3 months, 3 more doses were administered to me in the same format and after another week, I underwent a PET/CT scan especially designed for Melanoma staging.  My Melanoma had been SUBSTANTIALLY BEEN REDUCED and an interested and very positive result was the fact that my non-Hodgkin's "B" cell Lymphoma had been SUBSTANTIALLY REDUCED as well.

Once the OPDIVO was supercharged by the radiation, no more radiation treatment were required and the reductions of both the Melanoma and Lymphoma continued to take place.  My body was demonstrating exactly how the treatments were supposed to work which made me feel WONDERFUL to say the least.

A year later, there is still some minor reductions in both cancers, but DEAD TISSUE can be felt in my groin at the crease of the upper thigh.  There are numerous lumps of various diameters just below the surface that will remain there for the rest of my life...   they will never disappear unfortunately.  Right now, I can feel them with my fingers and feel them without my fingers when I have sat in a chair for an extended period of time like when watching a movie.

Sometimes, it just feels mentally odd that there is DEAD MELANOMA in my groin.

Living With Cancer

If I remember correctly, I was diagnosed with non-Hodgkin's "B" cell Lymphoma in 2007 but my treatments did not start until 2008 for some reason because they had to watch it for 6 months...  sounds crazy but that was the protocol then.  So, as 2020 began 3 months ago, I had just entered my 13th year of treatment.

And, about 5 years into my treatment and after receiving some high powered chemo toxins, it was discovered (quite by accident) that I had Melonoma on the bottom of my left foot after first thinking it was a wart and having it cut off twice.  The Melanoma tumor was surgically removed and because of the skill of the surgeon, I did not lose any toes in the process.   And, since there was no protocols in place for a tumor that small and in the early stages, I received no
follow-up chemo treatments or radiation.  FOUR and a half years later, the Melanoma can back very aggressively in my groin and because of its extensiveness, could not be surgically removed this time.

Treatment for Melanoma was instituted and even though there was some disagreements between my Oncologist and his colleagues, my non-Hodgkin's "B" cell Lymphoma treatment continued not knowing if the two treatments would cancel each other out or not.  Radiation in my groin was added about 9 months later.

Well...  and, much to everyone's surprise ALL THREE TREATMENTS WORKED IN HARMONY and my cancers with both substantially reduced as was the indication of a PET/CT scan three months later.

ALL-IN-ALL and over the course of 12 years, I have had regular chemo, wicked chemo, surgery, radiation, IVIG treatment, Immunotherapy treatments and pills....   and, one would think that my body would have been RAVAGED by all this medical abuse.  AND, while I have been extremely sick and had to go to the ER six times to stop vomiting every hour or so, my body has been magically or spiritually resilient.

I have had 3-4 squamous cell carcinomas surgically removed that were typical side effects of the chemo, but NO HAIR HAS FALLEN OUT on the top of my head except that which was supposed to fall out because of my family predispositions.  While not hair has fallen out, my body has gained 30 pounds as a result of over 150 infusions that are always and only given after receiving premeds that are loaded with STEROIDS to prevent/reduce nausea.  It is difficult to lose steroid induced weight gain.


My skin has lost some of its pink pigment making it look like my arms and neck were slightly burned in a fire but other than that, I have more-or-less felt pretty good for the last 12 years, except for daily then intermittent nausea that was EASILY eliminated with pills...   so, it represented only minor inconvenience that is to say...  looking back.

With that said, let me say that for the last THREE YEARS, I have had to deal with chronic fatigue which has been a BITCH to live with, but recently even that has begun to disappear as I believe my body is finally adjusting to the problem...  consequently, I have begun exercising again.

How long with this last?

I have no idea...

ONE DAY AT A TIME, is my new lifestyle...  as I begin to learn what this new pill for my THYROID issues is going to do to me.

Thyroid Issues Now

During my visit with my Oncologist, I mentioned that my body was heating up (not hot flashes) in the morning and afternoons and that in the morning I noticed a light sweat all over my upper body that smelled really bad.  My Oncologist said that some thyroid tests would be done just to make sure that there were no problems.

Unknown to me but known to the Oncologist was the fact that Opdivo can/may cause thyroid problems, especially over a long period of usage and the treatment today was my 34th of just Opdivo alone with the knowledge that I had previously had about 6 treatments of Opdivo along with Yervoy before having radiation.

The Oncologist called the house while I was driving back from the hospital and told my wife that my thyroid levels were too high and that some medicine was being called into our pharmacy.  Armed with this new knowledge, I must now go through the slow process of trying to regulate my thyroid which can be a pain-in-the-ass sometimes.

12 Years, 4 Months, 14 Days, 3 Hours, 8 Minutes

Since I was diagnosed with non-Hodgkin's "B" cell Lymphoma...  I was 60 years of age...  and, was Dean of Students at ITT Technical Institute in Knoxville, TN.  Obviously, it was quite a shock to both me and my wife and totally unexpected.  Actually, it was my family doctor that noticed I had lost 30 pounds in 6 weeks and sent me off for further testing that resulted in a liver biopsy and the diagnosis of Lymphoma.  The specialist then referred me to an Oncologist at UT Medical - Cancer Center...  a Dr. Wahid Hanna from Cairo, Egypt which I took as a good omen because I had attended high school in Cairo, Egypt from 1962-1966.

After having my first PET scan, I began a monthly infusion of Rituxan, a chemotheraphy drug that took about 4-6 hours to administer which included pre-meds for nausea and which, over the years had no adverse side-effects on my body which was amazing to me but totally expected by Dr. Hanna.  I continued with the Rituxan treatment since it was keeping my Lymphoma from growing until I relocated to Florence, Kentucky to work as Director of Education at a proprietary school there and my new Oncologist whose name I cannot remember, decided to add Cytoxin and Fludara to my Rituxan infusions that left me violently sick each month.  I still never lost my hair.

After a year, I returned to Knoxville and Dr. Hanna refused to authorize Cytoxin and Fludara with my Rituxan and a few years later was diagnosed with Melanoma on the bottom of my left foot that all my doctors thought was a wart until it kept returning and a biopsy was taken.  The melanoma was surgically removed and four years later moved into my groin with a substantial presence.   Rituxan was replaced with Triandra for Lymphoma 0and Odivo and Yervoy for Melanoma.  Because there was a substantial amount of Melanom, surgery was impossible.  A year later, Yervoy was stopped and I received 6 intense radiation treatments.

A team of Cancer Specialists at UT Medical - Cancer Center wanted Dr. Hanna to focus on the Melanoma and leave the Lymphoma alone because there was no evidence that these drugs for two different cancers would work well together.  Dr. Hanna refused to follow their advice and 6-9 months later, Dr. Hanna was proven to be correct and a PET/CT scan revealed a substantial reduction of both my Lymphoma as well as my Melanoma.

A couple of months later, a bulge appear on the left side of my neck and after several unsuccessful biopsies, it was surgically removed and along with lymph nodes being removed, dead melanoma was also removed...  MY CANCER TREATMENTS HAD WORKED PERFECTLY...

Radiation Treatment