Now this is a story all about how,
my life got flipped turned upside down.
And I'd like to take a minute
Just sit right there
I'll tell you how I became the Prince of a town called [all alone in my room].
Yay!! I'm a PRINCE!! In the land of My Bedroom I have become ruler as far as the eye can see!! How did I achieve such status among mortal men? Stay awhile, and listen!
I started ABVD to treat Hodgkin's at the end of the 2009; November I think. I get my first treatment and then go back 2 weeks later for the next where I am then told that after that FIRST TREATMENT my white blood cells tanked and I was what they call neutropenic. ರ_ರ
From then on out I was given a shot of Neulasta after every wonderful chemical cocktail, told I couldn't eat anything raw, unpeeled or uncooked and I had to be really careful out in the world because risk of infection suddenly became really important. If I got an infection it might delay one of my treatments which were to take place every 2 weeks. Any delay might give the cancer more time to grow and all the misery of chemo would be for naught. (1) Any fevers over 101º meant an instant 2 or 3 day trip to the hospital for IV antibiotics to make sure I didn't have an infection. During this time I was actually really lucky because, for the next 3 years, through ABVD, ESHAP, GDP, my allogenic stem cell transplant, GvH, and Adcentris I never had any infections. I only had fevers up over 101º when I was on ESHAP and they were sure they were just "chemo fevers" where you're body makes a fever as a result of the deadly chemicals that have just been injected into it. NO! I take that back; when I had my transplant and a few times after I was positive for C.Diff. (2) Let's be honest though there's not much *I* could've done to prevent that one (although I do wear surgical gloves now to wipe my butt every time I pewp).
I didn't start having infections until the Graft vs Host caused Bronchiolitis Obliterans and my lungs weren't able to clear the mucus/infectious material out properly (and where I learned my body apparently doesn't make fevers anymore so I have to constantly remind my doctors that fevers are NOT a diagnostic tool to use in their decisions about whether or not I have a lung infection).
So all of that is probably just a bunch of background noise to the reason I thought I should write this post which was about how I became a kind of shut in. A hermit. A germaphobe.
Here's where a bit of that good ole neurosis kicks in. Sometimes my doctors will tell me something and I just don't want to hear it and think of how I know my body better and yada yada yada I do something any way. Like how my pulmonary doctor recently told me that I shouldn't be doing squats. I said ok to them, but then returned to doing them as much as GvH would allow (it wrecks proper muscular development/regrowth). Likewise I also had it in my head that the sun would be fine after my transplant until my doctors and PA's told me how many of their patients had that same mentality and then they would come back with cancers so bad they would have to cut off limbs to try and stave off growth and even that wouldn't stop it. In hindsight I probably should've taken it even more seriously than even they did. (3)
For whatever reason, I took the dangers I was told about possible infections very seriously. I appreciate that my parents took it very seriously too. I apologize for all the trees that have sacrificed life and limb to offer themselves up as paper towels in our household. Back then I had a lot more energy (even despite going through chemo that would zombify me for a week) and I would use disinfectant wipes to wipe down all the cabinets and handles in the kitchen that I would touch throughout the day. I had a squirt bottle filled with bleach/water to sanitize my light switch and door knobs. I kept my distance from people if I had to go to the clinic, taking a WIDE berth of anybody that even sniffled. Used my long sleeves as a barrier if I had to open a door handle but always opted to use my feet to open a door if I could. (4)
Here's the biggest thing that happened: I stopped going out. The way I figured it the more I went out around people, the more I exposed myself to their bacteria and viruses (plus all the problems associated with sunlight and cancer/GvH flares/etc..). (3) Even at hem/onc clinics people in America just didn't care if they coughed and sneezed all over the place (I say in America because if you go to South Korea it's normal for people who "feel sick" to wear a mask to protect those around them. They even come in different styles so girls can wear "cute cat" masks and such.). So if I limit my exposure to those things, even if I WOULDN'T get sick from the exposure, I'm playing the odds. And besides, all of this is TEMPORARY. Eventually I'll get healthy again and go back out in the world!
I still keep this mentality that it's all temporary. Maybe it's a bit of denial? I don't think so. There were a few other people that went through transplant at the same time as me and some of them just...I don't know. They wouldn't take their medication. They sort of didn't believe they really were going through all of this and understand the seriousness of taking their meds or taking proper precautions. Consequently they were also always getting admitted for infections or complications =(. I feel like THAT's denial but I don't want to judge someone elses' situation; I have no idea what they're going through internally. All I know is that I cling to the hope that this will get fixed. God will send that east wind miracle and I'll be out in the world again. Problem is things just keep piling up so it hasn't happened. YET!
When I was diagnosed with Bronchiolitis Obliterans I had a very rigid schedule to keep with my meds and since putting on weight was one of the best indicators of clearing the wicked bacteria I had growing in my lungs (M.Abscessus 5), eating more calories had increased on my list of important things to do. So now my whole day was pretty much consumed with medication, food, sleep, food, medication, food, sleep, walk, food, medication, on and on and on.
But I keep holding on to that fact that it is temporary. This too shall pass.
So I stay inside.
I have some really amazing friends though, who understood all of these crazy things I had to do to keep clean and keep safe. Even with all the sanitizing and weird house rules would still come up for a few days and subjugate themselves to my insanity. They bring the sunshine in! Having friends like that is such a blessing. A balm for the burn of isolation. It's having a friend like this that can someone help get through a lot of the inane things you'll find yourself doing when you're stuck at home.
So are there any other hermits out there? Temporarily in isolation waiting to get back in the world? What do you do when you're not taking care of your squishy meat bag? What will you do when you can get out there again? Anyone stuck inside for good? Lemme know in the comments!
1 - I should mention here that I really REALLY don't like drugs or medication. Previously I had never even taken a tylenol for a headache. I didn't like the side effects and knew my body could take care of itself. Indeed this seemed quite effective as I never really got sick; just sinus infections at the beginning of Spring (this is baring some of the other genetic things like migraines and digestive issues that I didn't really have any control over). So agreeing to do chemo was a HUGE step for me. I had done a natural treatment that I had seen work on my friend’s grandfather but when it wasn't working for me I decided to go with chemotherapy. So me deciding to do it, I wanted to do it RIGHT and have the best chance of success I could, which meant no infections or anything that might delay getting the optimum course of therapy.
2 - C.Diff sucks. A lot of people who get it have it much worse than I did. Although when I first had it during my transplant I was also pooping out the remnants of my digestive tract from mouth to anus. By the way that buuuuuuurns worse than a triple thai spice pad phet. The other time I was confirmed was another time I was in the hospital. Since starting IV antibiotics to treat pulmonary infections there were 2 or 3 times where the beginning of treatment would duplicate the symptoms of C.Diff and bring back that o so familiar smell (if you've had it you don't forget it) but my body seemed to adjust to the influx of chemicals and patch things up.
One thing you will want to talk to your doctors about if you are dealing with it is fecal transplants. That sounds really gross but fecal transplants are shown to be incredibly effective at treating C.Diff (and hopefully funding will increase to support my own theory shared by other doctors I've spoken with of it having potential to do a whole lot more than just treat C.Diff).
3 - This is where my retreat from sunlight also started. Now you'll notice I was resistant to the idea of abandoning the sun. I love the sun. I love being outside. I love going on adventures and letting the sun beat down on me. So it was really hard to somehow think of the sun as a danger now. I did though. I listened and took their advice. This is why I say I should've taken it more seriously than even they did. You see most doctors will, with varying degrees of success, try to recognize the demands that their treatments are putting on their patients lives. Often this will result in them giving advice that makes you more able to live your life, while keeping your risks low. An example is how my doctors tell me I should go out and live my life more. I tell them that every time I do that I end up getting a pulmonary infection. An infection that puts my life at risk. An infection that causes me to take medication that often wrecks my body in ways my doctors don't always recognize as legitimate until it's putting me in the hospital (see: my worsening migraines for a year and a half until they started causing paralysis). So to ME, the best way I can "live my life" is to stay inside, away from people, away from infectious agents in the world outside my house. This is what I think happened with the sun. The advice I was always given was wear sunscreen, wear clothing that covers your skin like long sleeve shirts and hats, etc.. but "i should be fine so long as I don't get a burn."
I never got a burn, but I definitely could've made sure to not go on those half hour walks (even though I was covered in long sleeves and put spf 100 sun lotion on) when the sun was going down after 5PM but it was really overcast and call my friends. I remember dodging the sun going from tree shade to tree shade but was it enough? Was my bias towards loving the sun make me more relaxed than I should've been? Were my doctors words about making sure I don't burn a false sense of security?
Who knows. When I started going to Mayo after my post HSCT relapse I do know that my doctor put it bluntly that he was more worried about GvH killing me than the cancer. So when we started Rapimune to deal with suppressing my immune system and halting GvH I took even more stock in watching out for the sun. I was on Bactrim, Rapimune, and Acyclovir which all meant I had to stay out of the sun because of various increased photosensitivity and immune reactions and whatnot. Then there was the transplant itself and the chemo/radiation that increased risks from sun exposure. So... why not just stay inside? I started going for walks ONLY at night or when I knew the sun was nestled safely behind buildings and tall trees. I was real careful. Then with BOS came the A.Terrace infection that meant anti-fungals which messed with my skin even more! On top of that? Photopheresis where my blood gets sucked out and treated with a fig extract that is photosensitive and then a machine shines UV light on my blood whereupon it is reintroduced into my body and begins to kill the Tcells that extract attaches itself to. Ya know what that means? MORE reasons to stay out of the sun. Yipskidoo!
4 - I still wipe down cabinets and door handles but not as often. My immune system is actually doing a bit better? It's mainly just my lungs, clogged with scar tissue and thus a breeding ground for infection, that are the problem. It's still attacking what it ought not attack but it seems to be doing ok with the probiotis I slowly introduced last year and the real brick cheeses I've been eating. This is a tricky topic. Obviously docs usually want their patients on probiotics but since chemo so often causes neutropenia the risk of getting a blood infection is too high. However when I was at the NIH where they seemed VERY aggressive against treating infection (using heavy hitting antibiotics) they seemed comfortable with me using probiotics. So like I said I slowly started adding them to help my microbiome as it was assaulted by IV antibiotics every 12 hours for 18 months and seemed to tolerate it pretty well (it definitely helped the poop firm up a bit).
5 - Wow. Where to start with this little guy. So I get my bronch done at the NIH and they end up putting me in an isolation room because they only had an AFB stain and a CT and had to make sure it wasn't Tuberculosis. It took about a week to identify it (only a few days to identify the Aspergillus Terrace that was also living in my lungs) and another week to figure out how to go about treating it in the presence of everything else that was going on with me. They settled on IV Amikacin every 24 hours for 2 or 4 months (I apologize I can't remember) followed by inhaled Amikacin after that. IV Imipenem every 12 hours and Azithromycin every day. They did some studies however and found out that the Abscessus that was growing in my lungs had "inducible clarithromycin resistance" and that meant that Azithromycin wasn't going to do much of anything. This prompted me to reduce that down to 3 times a week (for the anti-inflammatory properties is has for BOS) and replace it with Linezolid every 24 hours. There was an unfortunate stop in treatment that I talk about in my other post but after that we pretty much resumed therapy except we used Meropenem instead of Imipinem because of a tightness I had noticed while using Immipenem.
Hey wanna learn about what side effects these drugs gave me? I hope you don't have ANY of them!
- Amikacin - Increased scotomal migraine frequency from once or twice a year to once every 3 days during or 20 minutes after my afternoon infusion. Diarrhea. Nausea. Questionable allergic reaction. I could walk up to my clinic before getting an infusion and after getting an infusion and there was an obvious increase in the tightness in my chest, the dyspnea (difficulty in breathing) and cough afterwards. Shut down the stomach.
- Imipenem - Diarrhea (pooped after almost every infusion!) Nausea. Tightness in chest that would last an hour or four. Shut down the stomach.
- Azithromycin - ?
- Linezolid - Neuropathy. Hard to tell if it was just Linezolid or Amikacin or both but I did notice an increase of the visual "exploded rainbow" that persists in my vision while on Linezolid versus being off it.
"..........................." - Anonymous
The Sound of Silence - Paul Simon and Art Garfunkel
Quiet - John Mayer
Edited by Henry