Where does one begin?

Constant fatigue...
Intermittent nausea...
On-going flu like symptoms...
Weight gain from steroids...
Food has no taste...
Staying out of the sun...
Increased sensitivity to humidity...
Planning life around doctor visits...


After 12 years of treatment, these are the reminders that I am and will always be living with cancer.

At first there was uncertainty.

Then, there were second opinions.

Then, there was complete reliance on the doctors.

Then, there was do your own research and make sure the doctors are on the same page.

It is relatively easy for a well educated and well experienced doctor to "drop the ball" because of all the patients that he/she has to deal with on a daily, weekly, monthly, and annual basis.  Sure, these doctors have helpers and assistants and try to help the doctor remember, but keeping track of each individual person and sorting out the various treatments/responses and paperwork is a monumental task.

I go to a teaching hospital because I want to make sure that others learn from my exposure in "real time."

For about 9/10 years of my treatments or well over 100 infusions and other needle sticks, I used the veins in my arms but after one experience of pain, I decided to have a dual port surgically implanted which I wish I had done from the very beginning, just because of the convenience and to eliminate the nurse who cannot always find the appropriate vein to use on the first attempt.

The length of time for my infusions, until recently was about 6 hours, but now they are only 30 minutes; however, by the time you wait to have blood drawn, wait to see the doctor, and then wait again for your infusion, you might as well count on spending 3-4 hours at the hospital...  even for a 30 minute infusion.

All of my infusions for the first 10 years, came with premeds to prevent nausea which included steroids and as a result, I gained 30 pounds of weight that I have been unable to lose.  Premeds also keep you from sleeping that first night or at least that is what I experienced.  Also, premeds do not always prevent nausea/vomiting from taking place, so the Oncologist should provide you with at least 2 prescriptions for nausea.

Why 2 prescriptions?

Well, my two pills can only be taken every 4 and 6 hours respectively and one pill may not work so if these pills are alternated, then I can take a pill more frequently which, in my case, worked...  and, it is a good idea to start taking your nausea pills as soon as you get home from your infusion rather than waiting until your symptoms appear.

When I waited until my symptoms appeared, I typically ended up in the Emergency Room a day later because I could not stop vomiting...  and, that is a very unpleasant experience to say the least.

What I discovered is that not only did I start taking my nausea pills earlier and more frequently, I also took sleeping pills.  Why?  Because, experienced cancer patients learn the best thing to do is to sleep through nausea/vomiting periods as they only last 1-2 days after the infusions.

Hard to believe that I have been doing this for 12 years...

More later...

The Infusion Suite

While each Infusion Suite is a little different, the above photo realistically depicts its simplicity.  There are some suites where all patients face windows while others just have a window on one side.  Some suites are one large room of 20-30 recliners where others are smaller suites with 6 recliners and 2 nurses.

Some medical facilities provide only nurses and a bathroom whereas others provide drinks, snacks, lunch sandwiches, ice cream, and have volunteers walking around making sure that they attend to your every need as best as they can.

All treatment areas have recliners and a curtain that can be pulled to completely encircled the patient with privacy in case there are any adverse reactions to the treatment or other medical issues manifest themselves...  this might be especially true for older patients.

There is typically a chair with each recliner so that the patient can bring someone to sit with them.

Transfusions can last from 30 minutes to 6+ hours.  Most patients bring an overnight bag with extra items such as pillows, sweaters, books to read, a laptop or tablet, cell phone, and even noise reduction earphones.

Most of the time, patients are given premeds (to prevent sickness) which also include steroids and other chemicals that will typically induce sleep.

My first trips for chemo were filled with uncertainty which created unnecessary stress and anxiety.  My infusions were given in my arm through the most convenient vein that the nurses could find and oftentimes I would be stuck 2-3 times before a cooperative vein could be found.

If one needed to use the restroom, then the device holding the liquid chemo had to be unplugged from the wall, and since it was on rollers could be fairly easily pushed into the bathroom, but it was still uncomfortable to do so with a needle in one's arm.  Patients are told to flush twice because of all the toxins that are being eliminated.

After a very uncomfortable sticking experience that occurred around my 10th year of receiving chemo, I decided to get a port.  It was a simple surgical procedure but it took my body about 6 months to get used to the device in my chest when I was sleeping.

The needle is about 2 inches long that is used to access the port and it only hurts a lot when they stick it in, but the Oncologist can prescribe a cream that is applied about an hour before the stick that will successfully numb the area.  I typically use the cream, but if and when I forget, if I breathe in deeply when the needle it going in, the pain is reduced.

Most infusion suites have blankets for the patients that are sensitive to cold environments especially since all infusion suites are kept cold rather than warm.

If you ever had to go to an infusion suite either as a guest or a patient prepare to be bored...

Surviving

CLL/SLL

An indolent (slow-growing) cancer in which immature lymphocytes (white blood cells) are found in the blood and bone marrow and/or in the lymph nodes. CLL (chronic lymphocytic leukemia) and SLL (small lymphocytic lymphoma) are the same disease, but in CLL cancer cells are found mostly in the blood and bone marrow. In SLL cancer cells are found mostly in the lymph nodes. CLL/SLL is a type of non-Hodgkin lymphoma. Also called chronic lymphocytic leukemia/small lymphocytic lymphoma.

The survival rate for people with CLL varies widely according to the stage of the disease (see Stages.) The 5-year survival rate tells you what percent of people live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for people age 20 and older with CLL is 84%.

It would appear that I have beaten the odds or at least lived a little longer than normal...   but, what is normal for me?

Costs of Having Cancer

CT Scan $2,500 each
PET Scan $5,000 each
Opdivo Infusions monthly --  $150,000 annually
Opdivo/Yervoy Infusions monthly --  $256,000 annually
Imbruvica pills daily --  monthly $12,000  --  $144,000 annually
Monthly Blood Tests  --  $150  --  $1,800 annually
Monthly Office Visits  --  $2,400 annually

My annual costs have varied from $250,000 to $350,000 depending upon the chemo cocktails I was receiving...  so, an average cost for me would be about $300,000 annually.

After 12 years of treatment, my overall costs have been about $3,600,000

But, I have not included all the tests that I have had over this 12 year period of time, so these cost could easily have approached $4,000,000

Of course, my insurance has paid for all of this except for my recent prescription for Imbruvica which has out-of-pocket costs of about $24,000 to $30,000 for the last two years.  These costs have been offset by grants and what I actually pay out-of-pocket is deductible on my income taxes.

IVIG Infusions

Immune globulin products from human plasma were first used in 1952 to treat primary immune deficiency. Intravenous immunoglobulin (IVIG) contains the pooled immunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors.

IVIGs are sterile, purified IgG products manufactured from pooled human plasma and typically contain more than 95% unmodified IgG, which has intact Fc-dependent effector functions and only trace amounts of immunoglobulin A (IgA) or immunoglobulin M (IgM). [4] Initially, immune globulin products were administered by intramuscular injection.

In 2016, my WBC (White Blood Count)  RBC (Red Blood Count) and Platelets were so low that my Oncologist thought it prudent for me to start a monthly IVIG infusion to support/supplement my weakened immune system.

Recently, my IVIG infusions were halted due to a nationwide shortage of IVIG and my need for IVIG was not considered critical.

Three weeks after I stopped my IVIG infusions, I was under treatment for an ear infection.

Is there a connection?

Perhaps...

Perhaps not, but again an ear infection is not critical.

REMEMBERING

It is difficult going back over the 12 years that I have had cancer and all the tests, procedures, and treatments through which I have had to endure...  sometimes, all I want to do is forget and move on with my life.

Funny in a way or maybe it is ironic, but I kept a notebook of everything at the beginning; however, I have never gone back to look at that notebook during these last 12 years.

I moved from TN to KY for about a year to work and that move forced me to make contact with a new Oncologist, who, according to the research he had conducted, a very aggressive approach towards my kind of lymphoma was recommended; consequently, my new chemo cocktail consisted of:  Rituxan, Cytoxin, and Fludara given over a two day period of time for about 6 hours each day...   and, the needle in my forearm stayed in overnight, so it was wrapped quite securely.

My treatment lasted for 6 months and I went every other week...  I arranged my treatments on Thursdays and Fridays so that I could have the weekend in case I was sick.  But, I never stopped going to work during these 6 months nor did I miss a day of work because I was sick.

With that said, after every treatment, I was taken to the emergency room by my wife because I could not stop vomiting.  It was a horrible experience.  None of the anti-nausea pills that were prescribed for me worked.

When I get nauseous to the point of vomiting, I have to lay down on the bathroom floor on the tiles.  Laying down on the bed or laying down on a wooden floor or carpet will not work as I still feel like I am going to pass out.

I lay on my side with my head on my outstretchd arms and breathe in and out deeply.  My upper body breaks out in a full blown sweat as if I just stepped out of the shower without drying off.  The top of my body feels super heated and I begin haing the dry heaves with my body arching up in the air farther than I think is possible.

This lasts for 20-30 minutes sometimes 40-50 minutes and then I vomit violently even when there is nothing in my stomach left, something is regurgittated out.  Once this is done, I stop sweating and my heated body returns to normal, leaving me very weak and breathing slowly.

My period of rest may last for 30 minutes or it may last for an hour, and then it starts all over again.  I could have the dry heaves for an hour or so before I start vomiting.

This condition usually starts around noon on Sunday and by 7/8 pm I am taken to the emergency room where I remain for about an hour or two until I given an IV of ZOFRAN that IMMEDIATELY makes me feel better and all symptoms miraculously disappear.

Interestingly, my anti-nausea pills are Zofran as well but they must not be that strong.

After a year, I left my job because of integrity issues and returned to TN and my original Oncologist who was upset that I had been given this treatment.  A couple of years later, when I discovered I had contracted Melanoma, my research indicated that a high percentage of patients who are treated with Cytoxin and Fludara subsequently contract Melanoma.

Melanoma is a more serious disease than the type of Lymphoma I have...

What a pisser.

My Melanoma was cut off of the bottom of my left foot.  Then 4 and a half years later, it moved to my groin in mass and surgery was not an option because it was so extensive.  I was treated with Opdivo, Yervoy, and given radiation.  My radiation was a concentrated dosage in selected areas 6 times over a 6 week period of time.

The idea was that the radiation would supercharge the Opdivo and the Opdivo would transform my own cells into killer cells that woud attack and kill the Melanoma. 

IT WORKED...

My Melanoma in the groin was substantially reduced evidenced by a PET scan and when the Melanoma spread to my neck and was surgically removed and a sample sent to pathology...   all they found was dead Melanoma.

That recent surgery was June 2019...

Am I lucky?

Well, one could certainly say that I am lucky.
One could certainly say that the drugs worked.
One could certainly say that God is taking care of me.

I tend to believe all three...

It's Cummulative

After 12 years of taking chemotherapy, immunotherapy, and radiation, I am left with not only a compromised immune system and below the acceptable levels for my White Blood Cells, Red Blood Cells, and Platelets but I am forced to live with constant fatigue, constant nausea, constant loss of appetite, constant feelings of flu like symptoms, and a depressing sense of loss.

Today, I slept 8 hours, woke up and piddled around for another 4 hours, then slept for 6 hours on the couch, and when I woke up felt like I had not slept at all.  I had no appetite and only one meal of rice and peas (1 medium sized bowl).

Tonight, I will go to bed early (no doubt) and sleep for another 8-10 hours which is my new routine.  I eat whether or not I am hungry because I know that I need to.  Rice settles my stomach because I also have constant heartburn.

Typically, my wife and I travel somewhere every other month for a week since we are both retired and while I am still fatigued, I force myself not to lay or sit down and sleep unless I am on a recliner at Myrtle Beach.  We go out to dinner whether we are hungry or not just because there are that many good restaurants at Myrtle Beach.

The key is not to give in to my feelings.