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What cancer patients, their families, and caregivers need to know about COVID-19.

Introduction

shadow01's picture
shadow01
Posts: 15
Joined: Oct 2008

I've been posting enough since I discovered (or, apparently, re-discovered) this site, and it's time I introduce myself.

In Jan, 2006, I was diagnosed with testicular cancer.  I had been coughing a lot, but back then, my allergies normally caused severe coughing starting around November, right when mine started, so I thought it was my allergies.  On the night of 26Jan06, around 2300 (11 PM), I was also having serious trouble breathing, and went to the ER.  It wasn't my allergies at all.  The cancer had already made it into my lungs, and had almost completely eaten them up.  They put me on breathing treatments (albuterol), and that helped.  Then, my soon to be one of three oncologists told me I had a 50% chance of just getting out of the hospital alive.  I looked at him and said, "Bulls*** 50%, try 100%...I'm beating this."  Ultimately, I kept my word on that.  But more on that later.

That night (or was it the morning of the 27th by then?), they ran me through countless tests, many of which they had me hold my breath for 10 seconds or more, which, to my surprise, was nearly impossible for me.  I finally got through the tests, and was helped by my nurse for the night into my room at the cancer care center at the hospital.  I told her what I'd told the doc, and she said, "Well I sure am glad to hear you say that, because it's patients who come in here with an attitude like yours that tend to walk out of here alive.  People who come in here thinking they're going to die, usually do."  Around this point, things get really foggy, so I'm not sure when/what happened.  I got the surgery to remove my right testicle, which was abot the size of a tennis ball, and I think they did some other damage while they were in there.....

After a week or so of being an in-patient (which eventually lasted about 4 weeks), they put me on BEP chemo, which at the time, I thought was harsh (boy, did I ever have a lot to learn!).  I had the first one or two (don't remember) cycles in the hospital---they wanted to see how well I would tolerate it.  By that time, my parents were there.  They decided that I would stay with my (then) dad at his farm, about 60 miles from the hospital, and would come back to the oncologists' office for chemo.  So, every weekday, they drove me in for chemo.  And then, they drove me back to the farm.  My dad (he was still my dad back then) wanted me to go out and help him work on the farm right after chemo.  He claimed he knew other people who had gone through chemo and were able to do so, so I should be able to do so.  Truth is, his ego demanded that I not make him look bad by being "weak" (in his mind).  Whatever.

During this time, the doctors had me on Ativan for both stress and nausea.  Funny thing, I kept running out of it far sooner than I should have.  I started to be accused of abusing it, but I knew I wasn't...I wasn't even taking the full prescribed dosage every day.  I didn't know why I was running out so quickly, myself.  On 1April, I'd had enough of the false accusations, saying I was abusing the Ativan, so I just quit taking it.  Screw it...let 'em all deal with stressed out me.  But just in case it turned out not to be quite that easy, I did fill the plastic pill boxes for the day anyways.  When we all got home from my chemo (and something else, don't remember), I'd gone the whole day without needing the Ativan, so I went to empty the pill box slots.  Only about half of it was there...I hadn't touched it!  So I checked the pocket that the pill container had been in .... I found them, along with some others that had come out of the boxes.  Strange thing is, when I went to open them to take the Ativan out, they were fully closed.  Either way, I found out that the Ativan had literally been lost down the drain...in the washing machine.  Did anyone believe me?  No.

Skip forward again.  It's June.  I've moved into the Hotel DeFuniak, which was working on a grand re-opening, and I was to be their night guy (answer the phone at night when guests have problems, have a list of who to call, call, go back to bed).  I was also working at a computer software place in Fort Walton in tech support.   It's now Friday, 16Jun06, and I'm leaving work that evening.  On the way back to the hotel room I'm living in, I stop to buy a cheap DVD/DivX/Xvid player.  I get home, and I start trying to install it info my sytem, but its audio/video cords are very strange...circles that plug into squares, triangles that plug into diamonds, etc.  WTF?  So I went into the other room for something.  That was about 1730 (5:30).  I woke up on the floor about 5 hours later.  I had no idea how I got on the floor, what had happened, etc., except that I felt REALLY sick.  So I called the software place and said I wasn't sure if I'd be in the next morning, and that I'd call in a few hours, after getting a bit  of sleep.  Called later, no way.  Oh, btw, the connectrs were all standard RCA connectors.  Skip forward.  It's just after lunch on Tues 20Jun15.  I'm on a call with a customer at the software place.  Suddenly, he starts speaking some really strange foreign language, and oddly enough, my computer monitor switches to it, too, shoing nothing but a bunch of strange shapes and squgglies.  I looked behind me to see if the guy in that desk could help...nope, on the phone.  Looked in front, nope, on the pho.......  I woke up some amount of time later, in the ER.  They told me I'd had a grand mal seizure (so THAT's what happend Friday night!), and that an MRI had shown that i had 3 brain tumors (2 1cm tumors on either side of the front of my head, and 1 2.5 cm tumor in my left occiptal lobe).  They moved me into the CICU to wait for a room to open up on the fourth floor in the cancer care center.  While in there, one of the nurses (Catholic---I'm not Catholic, so I only understood what she told me), told me and my mom (who had gotten a rush flight from Texas) that she'd had a bunch of St Perrigrin medals blessed by the Pope.  She had two left---she gave one to me, and one to my mom.  I didn't have anything to wear it on, so we used one of the many hospital bands on my left wrist, and a paperclip.  It didn't work.

I was finally in a temporary room in the cancer care center.  The paperclip failed on me, and that medal vanished.  I went through every square cm of EVERY bit of cloth, etc., that was in that room.  It was NOT there anymore.  I was finally moved to the room I was supposed to be in until the surgery.  I laid down on the recliner, and was watching TV.  Nobody came in the room with me the entire time.  When I laid down, that medal was not there, nor was it in the clean hospital gown I had on.  But when I got up, it WAS there.  I was 100% certain that it was not in my clothes, not on me anywhere, and that it had not been there before.  And, I'd been awake the whole time, so I knew nobody was screwing with me.  I only had one explanation, which I still believe to this day.  It was a direct message from God, letting me know He was there with me.  The next day, Friday morning, I was prepped for the brain surgeries, and was wheeled off to the OR.  I woke up during one of the surgeries...that was strange.  I had a very narrow tunnel vision, but sensed a lot of activity around me, and felt this strange tube in my mouth (which I was trying to claw away from me).  The activity, I later learned, was the doctors and nurses trying to keep my hands away from the tube I was breathing through while they knocked me back out...which only took a few seconds.

I woke up, later that afternoon...much to the astonishment (to say the least) of my neurosurgeon.  He went on and on about how I could not possibly be awake...that I was 100% guaranteed to be in a coma for a minimum of AT LEAST a month.  I was not awake..I couldn't be awake.  Meanwhile, I'm waving back saying (with a bit of a laugh) that I AM awake.  Finally, referring to himself, he said, "I'm not that good.  NOBODY is that good."  At that point, thinking back to that medal, and how it had just re-appeared, I thought, there is One who is that good, and I would bet that His hands were on yours, guiding them the whole time.  I wish I'd said that out loud...I really do.

The next day, we're having some kind of family chat...what it was about, I don't remember (so it must not have been important, right?).  At some point during this (which turned out the be the end of it), my dad (still my dad...at least for a tiny bit longer) stood up, and while walking to the door, said, "I never want to see you, speak to you, or hear from you again."  His ego couldn't stand the fact that A) I was still alive, and that B) I did so well with the surgeries.  Yes, his ego really is that huge.  It's bigger than this universe, and if the specific bits of M-theory that call for multiple parallel universes is correct, his ego no doubt spreads out into them, too, where it is no doubt highly unwelcome.

Skip forward to the next Thursday (this is funny....it really is!).  I'm in the Resource Room, trying to get a cup of coffee.  I KNOW that all I have to do is put my coffee mug under the faucet and press the "COFFEE" button...but I had NO idea HOW to do either.  I finally gave up and decided that I needed help getting my coffee, and as I went into the hall, sure enough, one door down, two nurses were just coming out of that room.  I said (or I THINK I said) "I need help" ... The reason I think I actually said that (as oppsed to gibberish) is the response from one of the nurses, who said, "Yes, you do."  They took my coffee mug from me!  I wanted my coffee!  They said they'd get my coffee for me, but right then, they needed to get me back to my room and into my bed.  They did, and then had me raise my left arm, stretch it out, and bring it up and touch my nose with my finger.  I did.  They asked me to do the same with my right hand.  I hit my left shoulder.  They had me try again.  I hit the top of my head.  Again.  I hit my right shoulder.  I heard them say, "Well, I think we've done all of the tests we........"  I woke up, foggy as hell, with a strange woman standing to my left, two strange women at the end of the bed, and a strange guy to my right.  As the fog lifed, I realized that the woman to my left was my mom, the two at the end of the bed were two of my favorite nurses, and the guy on my left was the chaplain, who I'd gotten to know quite well.

After the brain surgeries, I had whole-brain/max-dose radiation therapy, just to make sure nothing was left of the tumors.

Skip WAY forward, to Spring of 1997.  A new spot had appeared on my lungs in November, and it was growing.  So the docs put me on VIP chemo. That's Vinblastine, IFEX+MESNA (the MESNA was to keep the IFEX from destroying my kidneys) and Platinol, aka Cisplatin.  The dosages were VERY high, and the duration was 24 out of 25 hours per day (24 on, 1 off) for the first week of each 3-week cycle.  The second week was pain...pain so severe that I had to modify the usual 1--10 pain scale, making it logarithmic.  On this modified scale, for a guy, geting a good SOLID kick to the groin, the pain would rate about a 2--2.5.  Pain from gallstones in a gall bladder that was apparently ready to burst (which I experienced a few years ago) would be around a 3.  The base-level pain I had was a solid 10, and it lasted for every second of every minute for a full seven days.  I also had two other pains to add on top.  Muscle spasms in my arms and legs, which hit about every 15--20 seconds, took the pain up by one order of magnitude (e.g., from 10 to 11).  Stomach muscle spasms, roughly every 40--45 seconds, two orders of magnitude.  When they overlapped......  If I tried to eat or drink anything, even water, the stomach muscle spasms hit and kept going.  I couldn't slep because of the pain.  My doctors, when I told them about the pain later, simply said that they'd told me it would be really bad.  They didn't have a clue.  They gave me Percocet for the pain.

A good, more or less to scale example of how effective Percocet was compared to my pain:  take one of those giant forest fires they have out west in every year.  Now take on single firefighter with a shot glass of water.  Firefighter tosses the shot glass of water on to the fire, then walks back to the others, and says, "Ok, that's it, we're done here.  Let's go have a beer."  That's the Percocet against my pain levels.

The next two cycles were no different.  The fourth cycle, however, was.  My mom was in town, and she was NOT about to put up with that crap.  She knew that my (then) dad had lied to my oncologists, telling them that I was abusing pain meds (while I was at his farm).  Gee, I never knew that only using half of the prescribed dosage, since that's all I needed back then to control the pain, was abuse.  Anyways, we're in the oncs' shot room, to get yet another shot in a futile attempt to keep my neutrophil count from crashing.  The nurse was in the office, just finishing up something.  A warning jolt of the pain hit, tossed me up out of the chair, tossed me around, and slammed me back down into it.  She came out of the office, and with a stunned voice, said, "What the hell was that?"  My mom explained to her that "his dad" had lied to the doctors, claiming that I had been abusing pain meds, and that they were not treating my pain.  At this point, the nurse got this look....guys, you know the look I'm talking about.  It's that look where, when we see it on a woman's face, we hope like mad that we're not the ones who put it there.  In my mind (she hadn't said it out loud yet), I "heard" her say, "Well I'll take care of THAT RIGHT NOW!"  Right after I heard her say that in my mind, she said it out loud.  Then, she calmly, quetly, STORMED out of the room.  A few minutes later, my mom and I were at the nurses station for some reason.  I saw one of my docs, to my left and behind us, trying not to be noticed by us.  He then tried to sneak behind us, got half-way down the other hall, then stopped, stuck his tail firmly between his legs, and skiddishly walked toward us.  He told us that if the pain got that bad again, we were NOT to call them...go straight to the ER, and let THEM call.  Later that night, at 2230 (right on schedule), the pain hit.  I was laying on the bed in my mom's hotel room.  When it hit, it tossed me up about one foot above the bed, spun me around, and slammed me back down.  My mom took me straight to the ER.  We had to park a bit away from the main entrance, and yet, the nurses and techs in the ER's lobby could see the trouble I was in, and they literally dropped everything they were working on onto the floor and ran out to help me in.  As we passed the papers they'd been working on, we trampled right over them, bypassed admitting, and went straight to a room.  They quickly put me on demerol, into either my port or an IV (I don't remember which, but I think they accessed both).  I woke up to the same onc at the end of my bed.  He said they were takiong me off of the demerold, as it had too many bad side-effects, including seizures, and the last thing I needed was another seizure, and told me they were putting me on straight morphine.  I asked about the risk of addiction, and he said to forget about that...we'd deal with it later if we had to.

One night, the pharmacy got behind, and the morphine was late.  The pain from the stomach/arm/leg muscle spasms was still down, but the base-level pain wasn't...it was on full with the lowered amount of morphine.  I don't remember how we got to this, but my nurse explained my pain level at that point by saying (note, all emphasis is hers, not mine), "Your pain level is at LEAST as severe, if not MUCH MORE SEVERE than what a woman in labor goes through."   Remember, it's that base-level pain that was there for every second of the week.

Third week of each cycle:  in the hospital again, with severe neutropenia (neutrophill counts were at 0.015 each time...normal is 1.15).

Cancer #2:  2011, stage 1 colon cancer.  1 surgery and it's done.

I have really serious permanent chemobrain, vision weirdness caused by the damage in my left occipital lobe, vision geting weaker over time, voice raised around 2 octaves by the radiation therapy, which also damaged my thyroid.  Now, I am on T.CYP injections for the low testosterone, Synthroid for the low thyroid hormone (Free T-4), and B-12 injections, as somewhere in there, for some reason, my body lost the abiliity to process B-12 normally.  Before I was able to see an endocrinologist, my oncs never said anything about the low testosterone causing anythng other than issues with sex.  That, combined with the low Free T-4, and low B-12, made me a wreck, going from happy to very angry in seconds, for no reason.  It also had my horribly fatigued, which led to severe weight gain.  I am STILL fighting off the last 100 lbs of that weight (it was lower, but then started fighting back).  My primary care doc, who is also an internal medicine specialist, is handling all of this now (the non-oncology side), and a few weeks ago, after I asked if there was anything that could help with the severely low energy and thus help me be more active so I could lose the last of the weight, he put me on an amphetamine called Adipex-P.  It's working....

Finally....  The damage to my lungs, which has healed to about 53% of normal now, got together with my allergies, and made asthma.  As an off-topic comment, but still stuff I have to deal with, my allergies include Oral Allergy Syndrome, where certain fruits (in my case, honeydew melon, cantaloupe melon, watermelon, peach, and tomato) have the same protein as found in pollens I'm highly allergic to, and my immune system makes yet another mistake, mistaking that protein in the fruit as the one in the pollen that it mistakenly tagged as an invading microorganism.  I usually find out about new fruits I have to add to that list by going into anaphylactic shock after a bite or two.  And yes, I have a dual-set of EPI pens. 

Since the brain tumors from cancer #1, I've been stuck with Social (IN)Security Disability, which, these days, it seems that nobody knows has anyone on it for legitimate medical reasons...all I ever hear about is the abusers who just can't be bothered to get a fscking job.  Possibly for that very reason, I can't get an answer from my local Representative about what Congress is doing/is going to do to save SSD from crashing at the end of 2016.

Oh, and as for that other parent (the one that's not my mom) ... he's not my dad anymore.  He's just the giant ego now.  His new name, to me, is********, which, in polite company, can be pronounced more like Dumass, only with a very subtle 'b' still just barely in there.

Apologies for any typos, etc., in here.  I've shot WAY beyond my limits (low energy) and hit zero about half-way through this.  I'm into the negative levels now, and my eyes are blurring into a fog, my head hurts, and my fingers are not getting clear signals from my brain when I'm typing.

 

Jerry009's picture
Jerry009
Posts: 2
Joined: Aug 2016

Thank you for sharing your story! 

As a long term surviror, 10 years from the last cancer (4x survivor) and 20 years since my first. I am just now now learning that keeping in my story and not talking about my experiences has had such a negative impact on my mental well being. The Anger and resentment, bitterness and regret...lead me to a diagnosis of PTSD, severe depression and anxiety.  Learning to share my experiences has been an extreme hurdle for me. I have always been afraid to talk about it for fear of boring people, or people think I am sympathy seeking. Also I have always felt that it was my cross to bear and no one elses. 

Keep your head up, stay positive and dont be afraid to talk to others about your experiences and feelings/emotions! 

again, thanks for sharing your story!

-Jerry

 

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