My Ongoing Battle With Cancer

HEADS UP FOR THOSE IN A SIMILIAR SITUATION

My cancer journey began in 2007 when I was 60 years old.  Prior to that I was never sick (after typical childhood illnesses), not even with a cold or the flu.  I exercised regularly, lifted weight, 80% active, and ate healthy.  I had also stopped smoking and stopped drinking alcohol 20 years earlier.

My first diagnosis was non-Hodgkins Lymphoma (SLL) and went on a monthy infusion regimen of Rituxan (infusion lasted 6 hours).  No side effects.  A few years later, I woked in Northern KY (came home on the weekends) and that Oncologist put me on a regimen of Rituxan, Cytoxin, and Fludara (over two days).  Side effects were extreme and I ended up in the ER two days later to stop cronic vomiting.

HINT:  ask for 2 different kinds of nausea meds with 4-6 hour intervals.  That way, you can take a nausea pill every 2 hours.

HINT: start taking nausea meds two hours after the end of your infusion...  DO NOT WAIT UNTIL YOU FEEL SICK...  TOO LATE...

Twelve (12) months later, I returned to TN, and my original Oncologist put me on a regimen of a monthly infusion of Triandra (2-3 hours).

Three years later, I was diagnosed with Melanoma which some experts say was actually caused by the repeated use of Cytoxin and Fludara.  However, malpractice would have never been proved.

My melanoma started in my foot, moved to my groin, then moved to my neck.  The movement took place 4 years after, a surgeon removed the melanoma from my foot with clean margins.

NOTE:  bear in mind, that my Oncologist had to deal with two cancers simulataneously (and still does) both of which had turned aggressive and surgery was out of the question.  What worked for me was Odivo/Yervoy combination for a few months, then Opdivo and Radiation.  The radiation supercharges the Opdivo.  For me, it worked....

Whenever you are given chemotherapy or immunotherapy you will be given steroid to reduce the risk of nausea plus other meds as well.  These steroids will make you gain weight.  I gain 50 pounds in 10 years and manged to lose 30 pounds.

NOTE:  the way I lost weight, which may not work for everyone, is counting my calories.  I focused on eating 1,500 to 1,800 but not over 2,000.  I also ate small meals five times a day and my focus was on SOUPS.

I am now in my 15th year of being treated for cancer and in my 12th year of being treated for 2 cancers simultaneously.

Here is what I constantly live with:

1. Low white blood count (no immune system)

2.  Low red blood count (anemia)

3. Low Platelet count (blood clotting issuse)

4. Constant fatigue (mild to severe - varies)

5.  Loss of taste

6. Thyroid problems

7. Lymphodemo (moderate)

8. Depression (mild to moderate)

9. Weight gain

10. Diarrhea/Constipation (mild to moderate)

11. Mouth Sores (mild to moderate)

12.  Must avoid direct sunlight exposure (UV Clothing)

13. COVID might have killed me so I was very careful!!!

14.  Must avoid being in large crowds in closed in areas

15.  Must maintain a strict diet

NOTE:  My cancer(s) are made worse by a triple bypass heart attack that I had also when 60 years old.  Plus, a five level lower back fusion.

Surviving & Living With Cancer(s)

When I was 60 years old (2007) I was diagnosed with non-hodgkin's "b" cell lymphoma and was told by my oncologist that this type of cancer would never leave my body.  my cancer was staged at level iv which in many cases is terminal but in my case it was because the lymphoma was in my bone marrow.  

My treatment began with monthly infusions of rituxan which took about 4-6 hours depending upon how busy the chemo nurses were.  For several years my lymphoma grew but grew slowly and slightly.

in 2010, i experienced a heart attack while walking on the treadmill and an angioplasty operation revealed that I had three blocked arteries.  between 2010/2011, I had 3 heart surgeries and had 5 stents inserted and have had minimal problems since.

In 2011/2012, I worked in kentucky for a few months and the oncologist there ordered Cytoxin and Fludara in addition to my Rituxan and it is widely believed that one of those first two drugs caused me contract melanoma.

After my melanoma was surgically removed from my foot, five years later it migrated to my groin and it was difficult to ascertain if it was the lymphoma or melanoma that was growing or both.

My oncologist treated me for both cancers and for a while, he was not sure if he was going to be successful in stopping their growth.  So, in 2017/2018, Radiation was added to my monthly infusions.

Fortunately, the two individualized treatments worked and both my cancers started to experience minimal growth if any growth at all.  Again, with a biopsy, my oncologist was unable to determine if it was the lymphoma or the melanoma that was growing.

After 13 years of chemo treatments, surgeries, radiation, and immunotherapy treatments, I have left with the following situation with which I must live:

1. hypothyroidism
   
2. Lymphodema in my left leg
3. Weight gain of 50 pounds (of which I have lost 30)
4. anemia due to very low red blood cell count
5. no immunity due to very low white blood cell count
6. low platelet count
7. intermittent nausea
8. High susceptability to squamous carcinomas (of which I have had 6 surgically removed)
9. constant mild to not so mild fatigue
10. no taste of food
11. swollen prostate
12. extreme sensitivity to sun rays
13. Extreme sensitivity to humidity
14. constant sinus infections
15. constant facial skin infections
16. Pink skin pigment has disappeared
17. Mouth soars
18. minor loss of hearing
19. intermittant blurred vision
20. intermittant diarrhea 
21. an increase in tooth decay
22. increase risk of afib
23. allergic reactions to bug bites
24. increased risk of deyhydration
25. minor bouts of depression

Are all of these related to my cancer treatments?

Well...

maybe yes...

maybe no...

Some could be related to old age or not...

But, the fact remains that I deal with this list on a daily basis and have gotten to the point where I don't even think about it anymore...  My limitations have just become a part of my life.

I don't really think about living with cancer, I just think about living my life, one day at a time, while trying to make the most out of each day.  If I make the most out of each day, then I consider myself to be living a successful life and living a successful life is, for me, a form of happiness.

There were many days still lodged in my memory banks where I laid on the tile floor in the bathroom, puking my guts out....  I remember my body convulsing and arching as I tried for many seconds to bring up through my throat what my body did not want.

I remember those episodes lasting for hours as my body heaved and pulled from the inside...  my upper body became super hot and broke out in sweat that made me feel I had just gotten out of the shower.

I was completely exhausted from the vomiting and laid on the tile floor waiting for the next episode to grab hold of me...  Sometimes, it would get so bad and of a long duration that my wife would take me to the ER.

i don't like being around stangers in a waiting room when i am convulsing and vomiting and trying to puke out what little is left inside.  It is embarrassing and rather humiliating but necessary.

Those days are gone for good I hope...