Cancer Survival Guide
Perhaps someone is some curious about my surviving brain cancer longer than expected. I will also offer some observations about health care and prescriptions.
Here is my cancer survival guide based on my experience with GBM. It has 6 'steps.'
My cancer is finally stable with 2 consecutive MRI scans (over 8 weeks) with no unhealthy change in the cancer and no terrible side effects. This is after about 32 months since the original diagnosis.
If you know someone confronted by cancer maybe the following story could be comforting because I am still here, or maybe not because of the many challenges along the way. This is my story and maybe another story is better or worse.
First, here are my health care observations.
for each health situation there is:
1. the objective,
2. the dose
3. the duration or frequency
4. the age of the patient
5. the side effects.
I expect everyone already knows this simple stuff but maybe not stated like this.
Every prescription will have some form of this analysis.
For example for tylenol 1) pain relief, 2) 325 mg adult, 4) lower dose for children depends on age, 3) two tablets at a time, 5) too much can cause liver problems so there is a recommended daily maximum.
In cancer treatment, this cycle of evaluating each dose relative to side effects is repeated with every medication change or every change in blood counts or every significant change in the cancer.
To address any change in the cancer my neuro oncologist must revisit my medications. Just increasing the chemo dose can increase side effects. The current dose came from a reduction to reduce side effects.
My original chemo (temador) is considered the best initial treatment for GBM. Unfortunately for me my side effects were severe with near failure of my bone marrow. Marrow makes three components in blood: 1) white blood cells to fight infections 2) red blood cells to carry oxygen, 3) platelets to stop clotting. In my case all three plummeted. It took a few months to even approach normal counts.
Whenever prescription drug commercials mention side effects I know fatigue is probably low red cells, infection risk is low white cells, bleeding and bruising are low platelets. I had those.
My regimen is a combination of two chemo drugs where each dosage was reduced over time to reduce side effects after a benefit was observed. The combinations of dose and frequency evolve. This is on the path to the quality of life compromise.
My tumor was stable a while but GBM is complex and mutates so a change is needed after an observed increase in the cancer.
The 5 steps:
1) survive the original cancer symptoms.
This is not really a step on the road since the road could end so abruptly.
Mine were: a) I had bad left peripheral vision. The cancer was on the back right side of the brain.
I had two car accidents on the left side, both with only damage, and one dangerous close call also on the left.
b ) I had reduced coordination of my left leg making a jog or walk awkward.
I had many minor body collisions on my left side (and still do) with whatever I walked into but did not see (especially doors and door jambs). I took only a few falls but each time I fell on what I kicked so no harm to me. I survived a few bumps but eventually I adapt and somehow become more careful about what I can't see on the left side.
c) I had reduced dexterity in my left hand (and still do). This is annoying like with a sheet of paper or a playing card. The hand will still shake if I try too hard to grab something though it is strong enough to grip.
2) survive the cancer's initial treatment.
My problems arose with the bone marrow failure from chemo. My blood counts plummeted. I developed a fungal infection on my heart, lung, and eye. I had a nose bleed that would not stop without a visit to ER; I was already at the hospital for radiation therapy and stayed many weeks.
I noticed no side effects from radiation therapy. I had several treatments for different targets.
3) survive the cancer's subsequent treatment.
I have absolutely no memory of certain days in 2017 when many of my family visited.
I had various hallucinations. I told a doctor this and he wanted my eyes tested. I actually knew I was hallucinating, like patterns on the wall, not my eyes were out of focus. I believe I called the nurse to report their HVAC system needed tuning. For a while I was actually two people in the hospital getting different treatments; somehow I was alternately one or the other. I have no idea how that worked but I remember being bothered by it. I thought I was told to use the urinal more often but somehow I figured out that was stupid; I never told this to anyone. That usage resulted in kidney and bladder tests. My sister, not the doctor, suggested a med change without me knowing anything about it, and this stuff stopped. We later changed doctors.
For awhile my blood pressure tended to be low. I got light headed easily. My cardiologist recommended salt tablets which worked but eventually I stopped that and now the BP is usually a little over normal.
I blacked out at the hospital once when my blood pressure plummeted. It took a few nurses to get me off the floor and back into bed but I was not hurt.
I blacked out several times at home, sometimes due to afib (heart is not in correct rhythm) but was never hurt.I got to know the ambulance team.
My afib medication (contained iodine so this was a known risk) broke my thyroid so I must remain on thyroid medication.
My antifungal medication reduced my platelets and it took time to resolve that. After trying a few alternatives, right now I take no medications for afib and antifungal.
In June 2017 I began using a 24-hour per day radiation treatment because chemo alone was not successful and more X-ray therapy to burn the cancer would not be done. This system includes 36 electrodes (2 pairs of 9) on my head with a separate over the shoulder device with rechargeable batteries and a radio frequency generator for what are called 'tumor treating fields.' These arrays are replaced every 3 days, probably the effective time for the gel holding them to the skin.
For a long time I have had a problem picking up an item on the floor. When I stand it feels like my BP dropped but checking BP here or at the clinic shows no change. The doctor suspects after prolonged chemo my circulatory system is slow to adapt when needed. I just sit down if I can and it goes away. After a few months of this I finally realized this head problem is also related to my 24-hour radiation treatment. If I must walk with no risk of stumbling (like with family) I turn it off for a few minutes to keep my head clear.
In the fall of 2017 I had shingles; its pain and itch took a few weeks to stop.
4) Be fortunate to have effective health care professionals.
Perhaps this is most important piece but something that is almost out of a patient's control.
I was diagnosed with glioblastoma in 10/2016 with an average prognosis of 14 months; a few weeks later my radiologist admitted that applies to me. In 06/2017 I was told I might have just weeks to live due to muscle deterioration. I recently passed 32 months and still having a 'near normal' life with tolerable limitations so they have done a good job for me.
During that first year or so at the main hospital I eventually vented my frustration at someone from PT about their unscheduled interruptions without considering me and my meals and walks. In my medical chart/report I believe someone noted I was uncooperative. I forgot the actual timing but I remember for awhile I was moved to another floor where the staff was less friendly but later I returned. Many months later several doctors I had encountered earlier happened to see me during their rounds. I believe some of them were rather surprised to see me.
Most of the time much of the staff was great. With so many people working different times over 3 shifts there will be some conflicts; I don't know if terminal cancer patients could be worse. The staff must follow their schedules. For me some were more lenient than others. I feel I made better progress with final recovery after leaving the hospital to be home with family.
I have had a variety of cancer treatments with a diversity in complications but somehow I am still here. For each surprise the doctor considers what has happened and what could happen with a different dose, sometimes in combination with other drugs.
I collapsed (a seizure) on Memorial Day in 2017 and when I called I was able to talk with my assigned neuro oncologist, not someone else, for immediate advice.
I have no idea what my cancer status would be with another doctor. I do not want to try this again.
5) Be fortunate to have family support.
That personal support, including family visits, is important in maintaining a good perspective.
My sister has been critical for me at many crucial moments. I blacked out at home several times with no injury. She was there for me each time even when an ambulance was needed. She also manages my medley of pills.
A few times I needed transportation and someone else in the family took me to an appointment when my sister was unavailable.
6) Have the determination and tolerance to get through the inevitable chaos.
At any time I might be presenting a confusing array of symptoms and it could take time to solve it. Side effects can arise and each must have some impromptu solution, even if it is just hang on to a fence post and wait for my sister to walk home, get the car, and drive me home. If it is more serious then eventually a talk with a doctor or one of his staff might be needed.
6A) Recovery takes a long time.
It took over 2 years for my bone marrow to consistently maintain blood counts at normal or above minumum counts.
Chemo therapy can hinder kidney function. Also after roughly 2 years my kidney function had returned to normal
6B) Adapt to whatever arises with a damaged brain.
When I walk on a paved or unpaved trail or walkway I stay at the right edge because I cannot reliably follow the left edge and walking safely in the middle is not courteous.
I managed to avoid falls by carefully avoiding a stumble. I still walk slowly or I feel I will stumble or fall if I walk too fast.
Several months after leaving the hospital I seemed recovered but I developed on odd symptom. I first noticed it playing a card game at my mother's. I was confronted with playing a card but there was no 'best' card in my hand. Rather than just picking one at random my brain just blocked and could not make a decision. I remember being stuck for awhile but I can't remember how I picked a card.
I told my doctor about that and he said considering the part of the brain affected by the tumor and surgery (a zone involved in concepts and decisions), so I might be lucky to complete a game.
Some time along, I noticed picking up something off the floor makes me slightly unbalanced but not dizzy, both when bent over and after rising. My doctor said this is not unusual because prolonged chemo affects the efficiency of the blood stream and metabolism.
My long term memory is fine but my short term memory is terrible. I can forget something from only a few minutes ago. I rarely know the day or date but my cell phone and its calendar work fine.
My left and right eyes are not always coordinated. Lines on a computer screen might have an unseen mistake. For example depending where the text is on the screen something like 'this is this is' (twice) will look like 'this is' (once) so I have to look closely at everything I type before I think it is right. Sometimes each line on a non-flat page in a paperback is seen as two partial, overlapped lines; the page must be flat and perpendicular to both eyes to avoid this.
My peripheral vision is unreliable. I easily lose the cursor on the screen when moving the mouse if I am not looking directly at the cursor; it can disappear and it is awkward to find it when it is not moving. I must move it to a top edge; after finding it when stationary, then I slowly move it by keeping my focus on it and move it where I need it. Mouse and display are of course fine. My eye-hand coordination is also unreliable. I have to do one finger typing as I do not have adequate control of my left hand for it to participate with my right hand. I still hit the wrong adjacent key. Everything I type must be read again several times.
I was an avid biker averaging over 800 miles/year (many of those after work); I don't have the balance or metabolism for such biking so I walk.
Chemo results in little hair growth on the scalp. Oddly, my beard can be stubble by 5 o'clock.
6C ) Stay positive. My doctors and nurses appreciate a positive patient; I expect that attitude helps one's health in general.
In my mother's later days she would often say, ' I am taking it a day at a time.' That is definitely the correct attitude for this chaos. Embrace each day.
created - July 2019
last change - 07/11/2019
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