Less than a week to go!

Yes, 5 more days and a sleep…more on that in a moment. It’s been a while, but that’s how it is in recovery, trying to wrestle any energy and motivation to do much of anything besides veg out and wish time went by faster until we’re all better. This part of my journey is going to describe what it was like in the months home from the original surgery, with help from Kristine and other friends, Home Health nurses, and with bi-weekly chemo treatments along the way. Sounds like fun right? Ok here goes…

The last time I made an entry on here was a couple of months ago, and that was to describe what it was like up until getting out of the hospital and going home from my original surgery (6/14). So basically the days, and now months from June 14th until today have been challenging for lack of any other way to explain it. It hasn’t been constant 24/7, but at the times where it was most difficult, it was tougher than most anything I have gone through (and that says a lot having been in the military). There have had to be continual adjustments all around, like what foods I could eat, how much exercise or outside activities I could partake upon, mobility in general, lack of stamina, daily exhaustion…and that was mostly from the surgery alone. But then about a month after I had come home from surgery, I did start some rather intense chemotherapy. Lets just say, luckily as has been the trend this whole time, I have been able to graciously depend on a few close individuals to get me through things day by day. A lot of it has been my wonderfully patient girlfriend Kristine helping out with pretty much everything, but another large help has been from my best bud Brian always with the moral support and just all around being someone I can count on, along with his awesome sense of humor. There have of course been others, countless texts, emails, (yes even some calls!) and social media of course, friends and family have really come through for me in ways I was not expecting. I appreciate you all! But I digress…if I were to make this a thank-fest I’d be here forever giving thanks like at the Academy Awards or something 😎

I’ve never been one to ask for a lot of help. But when I do, I inevitably feel pretty guilty about it, even if I shouldn’t or am told specifically not to. So that has also taken some getting used to and adjusting of my outlook on it. I’ve been slowly learning that it’s ok to sometimes let people do stuff for me, and it’s ok to simply show my appreciation and leave it at that. I shouldn’t always feel like I am “indebted for life” for even the smallest thing a person does for me (though in this case I still kinda feel like that). Sounds confusing I know, but that’s how it’s been inside my head. I didn’t think I’d be at the point of needing to be taken care of in this way for at least maybe another 20-30+ years.

So the chemotherapy was definitely a treat (/sarcasm) 🙄. That dirty business came and went every 2 weeks, Wednesdays for the bulk of it sitting for 4 hours at the clinic being injected with all kinds of stuff, as well as getting fitted with the 2 day pump (that went into my chest port I had installed at an earlier time…remember I’m a robot now). And then back Friday to remove the pump. All this for 12 weeks. Originally I was told it would be 8 sessions, not just 6, but thankfully the Oncologist assigned to help and monitor me thought that 6 sessions would be enough. I had a pretty hard time on that magical cancer destroying stuff, so hearing that I was able to safely and confidently shave 2 sessions off made me ecstatically happy. Usually the first couple of days after the injection, I would generally feel tired and run down kind of all day, and definitely even lower energy than I would have normally felt already. And there was also moderate and sometimes fairly severe nausea, in which they gave me 2 different medications to counter that (which included a $600 patch each time…yay insurance!) Then in the few days or so after I dropped off an empty pump, my symptoms described earlier seemed to increase each time, adding to it often a feeling of being intensely out of it and dizzy, as well as an adversity to the cold touch of things, which gave a rather unpleasant spasm in whatever extremity came in contact with a cold object. All of these are the normal side effects of the type of chemo I had administered.

Way too many times (I feel) I ended up having to depend on Kristine to do some of the most basic house activities, including cooking (which she does so well I might add). And too many times I was needing to cancel an outing, or hanging out with Brian who only just lives around the corner, or some other commitment I thought I’d be ok attending. I often felt very bad or embarrassed, but every time I was told not to have to feel that way, that it was ok and more important to take care of myself. And they were right, so I would usually just pass out for as long as I could to hopefully feel better when I woke. And I did, sometimes, though occasionally that feeling would just linger all day, or even all weekend. Life of chemo I guess, but again hey, I got through it!

All the while, this whole time I’m needing to fiddle with this damn ileostomy bag. Having to empty this thing 6-10 times a day (I did that part), and changing the bag every 3 days, I kind of feel like I’m an expert at these tasks now, at least in instructing someone how to do it. Kristine sometimes has had her hand in replacing it, but mostly it was done by St. Joseph’s Home Health nurses. They have sent out a multitude of nurses, though a few kept coming back so I’ve developed a good rapport with them. But it’s a lot harder for me to have changed it by myself, at least as well as the nurses or Kristine can, since their angle is better. And a few other reasons why having help is the best thing, especially when I was just so out of it or feeling low down from the chemo. There were issues in the beginning of the bag leaking (yea it’s pretty gross and I got pretty upset and embarrassed when that would happen). So I’d either have to wait until the morning time when they could send out a spontaneous nurse, or sometimes Kristine would be available to help change it sooner…but often I’d be left just trying to patch it with a towel and hope it didn’t get too much worse until someone could help change it. Ugh…I feel so helpless even describing that right now…and I hate that feeling so damn much. But you know…I got through it. With the help of MUCH trial and error, and just as much patience, plus a special wound care nurse who had some good replacement tricks, we finally figured out a replacement routine that has worked for a while now, no more leaks in about 6 weeks. I’m almost sorry you all even had to hear about that…it’s kind of TMI I guess, though certainly a big part of my journey and experience, but I hope it doesn’t gross anyone out 😔

Honestly, not a whole lot of exciting things have happened in these very long 5 months. Mainly my life has consisted of staying home mostly, sometimes visiting Brian or Kristine at their home and hope that other friends were able to join, my parents ventured out to visit once and that was great, went wine tasting a few times, the movies a few times, but not any ventures much longer than 30 mins away. I kind of feel like I’ve been in a limbo of living life, being limited so much by my inability to be away too long. But this will soon change. As the title of this post depicts, something big is happening soon, and that is my ileostomy reversal surgery, next Friday 11/19. This is where they put my tubing back together so that I’m basically as close to original as I was before, albeit missing a kind of large piece. Supposedly it’s not as impactful of a surgery as my original, so I’m hoping that translates to less pain this time. I know there will be some, but the last time was pushing limits kind of pain, and I was afraid I wasn’t going to handle it. Once I’m done it will again be a period of adjusting to eating different foods again, but this time it will be a means to an end (no pun intended). I’ll not necessarily be limited to just certain types of food as I have for the last 5 months, and instead will be able to digest pretty much anything I did before my original surgery, at least eventually. Oh and finally I’ll NOT HAVE TO MESS WITH THAT STUPID BAG ANYMORE EVER! (/rant over 😉)

So yes this is all finally coming to an end (there I go again with the puns). My last CT Scan a few weeks ago was negative for any remnants, and I had the dye test which showed there were no leaks from the original surgery (I’ll tell ya, that was not a fun procedure). All this adds up to a green light for the reversal, and my re-entry into life again it seems. I’ll definitely post about the upcoming surgery, or any other interesting things that happen in the meantime.

I’m pretty sure my cat is tired of seeing me…and needs a vacation.

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