I can't believe how many people I reached with my post. Over 8500 people reached in less then 48 hours. Thank you all for sharing my story! I really didn't expect that. I have blogs saved up because based on how I respond so far to chemo, it looks like I have about 14 days per month of productivity. So, when I am on...> I'm on. I hope you don't enjoy (that would make you a sick bastard) this entry, but I do hope you learn something from it.
Back to the program...
The surgery was supposed to only take about an hour. I went in at about 7:45 PM and came out at about 11:45 PM. At least…that’s the time I remember looking at the clock. I was still pretty heavily sedated, but not so much that I couldn’t function or talk. I just wanted to sleep really. That wasn’t going to happen.
See, when you go in for anesthesia there are some funky things that happen to your systems – mainly your system of elimination and digestion. They get “sluggish” is what the nurse told me. From about 12:30 AM to 8 AM I was woken up every hour or so to ask if I could pee into a big Kool-aid container so they could measure my urine volume, so they didn’t have to put a catheter in and because they explained that because of the anesthesia I might not realize my bladder was full and this could cause some issues later on. The bladder check was interspersed with pills…more pills then I have ever taken in my life in such a short period of time. And remember…I take supplements. Like, lots of supplements.
I just wanted to sleep! I cannot explain to you how tired I was. I am a big believer in sleep (I will write about that later) and the benefits of sleep, and I was in the whole big time. The drugs were in my system along with the anesthesia AND just the emotional effects of surgery and knowing what the outcome might be.
This is where I wish there was a patient history available for the nurses. What ever happened to the charts at the end of the bed that we used to see in TV shows?! Apparently they didn’t know that I didn’t have anything to eat or drink for over 36 hours by the time I was out of surgery. My first meal didn’t happen until around 10 AM the day after surgery while I was still in the hospital. Hospital breakfast – yep, it was as shitty as you could expect AND there was a hair in my eggs. Thanks DHMC.
After the surgery they gave me narcotic pain relievers, OTC pain relievers, anti-nausea medicine, anti-hiccup medicine (?!) and some other stuff, all of it given to me every few hours with very little to eat or drink. The hiccups were THE WORSE! I mean hiccups suck. But now, stick a tube in the side of your body and hiccup. SUCKS. The pain wasn’t that bad, it was the sensation PLUS the pain PLUS the thought of it all – oh man…tube in my side.
I threw up a few times while in the hospital and RIGHT as I was leaving. In the hallway. By the nurse’s station. Still in the ward. I just couldn’t take it. I could feel the pills in my stomach like acid.
The biopsy came back as Lymphoma. The best, worst case scenario I was told. Another week and we got the news, its Hodgkin’s Lymphoma, what my surgeon was hoping for as it has a very high treatment success rate and is very responsive to treatment. No stage yet and the sub-type of HL was still to be determined. But at least I have the name of my enemy.
The next step after the biopsy was to get a PET scan and start chemo. The PET scan would allow them to officially “Stage” the cancer, essentially seeing how wide spread in the body it was. Stage 1-2 was localized, stage 3-5 was more wide spread. However, in HL (I can only speak about HL as all types of cancers are different…I’ll write about that later) the staging did not change the treatment. Essentially once they found out it was HL my treatment plan was set:
2 months of ABVD given in 1 does every 15 days (two doses is one round).
PET scan to determine if the cancer cells were reacting to the chemo.
If the scan showed “-”meaning the cancer cells were reacting, essentially being melted by the drugs, then I finish with 4 more rounds for a total of 6 round and roughly 6 months.
If the PET scan came back as “+” meaning the cancer cells were not reacting (my oncologist told me this happened in about 10-20% of HL patients) then we move to a more aggressive chemo of BEACOPP, followed by a bunch of other things, one of them being radiation, possibly stem cell transplant, etc.
Basically, I wanted a “-“ at the 2 month mark in the PET scan.
I was told this is standard treatment for HL patients.
Once my PET scan came, they were able to further classify it – Bulky Classic Hodgkins Lymphoma. It was bulky because it was at least 10 cm across. So…that’s bad, but, I guess good (but not really) because It allowed me to be entered into a clinical trial to test two hypothesis:
The role of the PET scan – should it be used after two rounds of chemo in HL patients.
I don’t really know. But! I know there was a second question.
It was interesting talking to my Oncologist. He said that whether I did the trial or not, he would most likely follow the same regimen as was outlined for me. That surprised me because I questioned him about the “Standard of care” for this. Basically he told me there was none, and it’s really up to the oncology team and oncologist as to course of action.
Let’s take a step back here. That’s how messed up cancer is. There is no Standard Operating Procedure for cancer, because every person responds differently, every cancer is unique and cancer is VERY adaptable.
Contrast this to almost any other health problem in medicine – there is almost always a standard operating procedure that says, “Based on the evidence this is the best course of action for the great majority of the people, start with this first, then progress after this SOP has been exhausted.”
So, as I said earlier, yippee that I qualified for the clinical trial, but my SOP for HL would have been the same. However, the trial pays for everything…almost.
Between the biopsy date, which happened in mid feb, and the first day of chemo, March 3rd, I was called into the hospital for:
A pulmonary function test.
Lots of meetings with various oncology people to go over the treatment plan and cancer in general HL in particular. I stumped some of the peeps with my questions, go me.
A bone biopsy because my red blood cell count was low and that made me mildly anemic. So they did the bone biopsy to determine if the lymphoma has spread to my bones. Still waiting to hear back from that test as of 3-03-16.
2 CT scans with contrast. That was interesting. I felt like I was peeing myself during the test because of the chemical they use.
And finally…the night before my chemo, a trip back to the hospital because they found a blood clot in the right side of my neck. Because the tumor was compressing my superior vena cava (main highway draining blood from my head and neck and the main highway leading into my heart that all upper extremity high ways empty into) it was causing secondary problems in my upper pulmonary system (fancy word for the system that moves blood around your body). This required me to pick up an $1100.00 medication that I had to inject into my body twice a day. That was one month’s supply. I had to do it for 3 months. The trial DOES NOT cover medication. A blood clot is life threatening as it could detach and cause death. So I had to pony up the money because death is not on my god damn calendar until I am 100 year olds!
NONE of these tests were on my calendar. They all were done because of findings found (haha, that’s a funny phrase) in the various screening tests they did.
RULE NUMBER 3 CONCERNING CANCER – YOUR LIFE IS NO LONGER YOUR OWN, HAVE RADICAL ACCEPTANCE ABOUT THAT. ON ANY GIVEN WEEK YOU COULD GO FROM HAVING ONE APPOINTMENT TO THREE, THEN FIVE, THEN BEFORE YOU KNOW IT, THREE DAYS OUT OF FIVE ARE SPENT IN THE HOSPITAL.
One thing the trial doesn’t pay for is medication. I don’t have health insurance. It actually makes more sense for me going through this to pay the stupid Obama-care fine at the end of the year because the hospital and the state provide me with pretty substantial medical aid. The fine is less than 3K. Just to have health insurance it was going to be over 3K, AND I still had to pay the deductible of 5K. So, to get health insurance it would have cost me at least $8,000.00 and nothing would have been done to help me out. Without health insurance, the state helped me out and the hospital ended up writing a lot of expensive procedures off. This worked out well (so far) for me, I do not recommend this for you.
In the meantime, between the biopsy, the chemo and still on going, I researched the shit out of HL in my Master’s Nutrition Texts as well as in the material I procured from DHMC and a little bit on the web. Good cure rate, the least dangerous out of the beasts of cancer. Good prognosis. But, still cancer, and still a serious life impactor, that requires pretty aggressive treatment – Chemo.
I bought books:
Cancer as a metabolic disease.
Fighter cancer with a ketogenic diet (this was a PDF from the website www.ketogenic-diet-resource.com)
Beyond the Magic Bullet.
The Death of Cancer.
Anti-cancer (as of this writing, still waiting to be delivered).
Did you know chemo was actually discovered after a horrible accident with mustard gas in one of the world wars? Of course you didn’t. Why would you know that? It’s true though. Basically an allied ship that was carrying 100,000 pounds of mustard got bombed resulting in hundreds of people getting doused with mustard gas. They found that years later, those same people had low immune cells in their body. They hypothesized that if mustard gas could kill those cells, then it could also be used to kill cancer cells.
That's the shit right there. Mustard gas = chemo.
Here’s basically how chemo works – it affects and hopefully kills fast dividing cells. That means ALL fast dividing cells. Your immune system is one of the systems that get attacked. Essentially you are depressing your immune system, which in turn opens you up to a whole host of immune issues and sickness’ in order to kill the cancer cells. Your immune system bounces back…hopefully the cancer cells don’t. Also, hair, nails and your GI system are all fast dividing cells. That’s why your hair falls out when you get chemotherapy.
Chemo essentially slowly kills you so that the cancer doesn't kill you faster.
And in case some of you like pictures over words:
Take that in. That's everything chemo effects.
Think about that.
That's the treatment for Cancer.
In the year 2016, we are still using "shotgun" poision to hunt diseases.
This would be akin to shooting a deer from 100 yards away (about the length of a football field) through trees with a shot gun and hoping that the deer takes enough damage to slowly bleed out and die over the next few days. That's a harsh analogy, but, fitting.
We all have one, right? Do you want to know mine? Would you like to find out how a Warrior Wizard lives their life after being diagnosed with Cancer?