After my initial diagnosis and 2 week stint at Grandview in Dayton I started on chemotherapy and all sorts of other drugs to help me not get silly illnesses (prophylaxis medications). I felt 'good' for a few months and then mid-March I started to develop a cough that became increasingly more prevalent and persistent, additionally my appetite waned and stamina dwindled. On the inside, I knew my body was failing but couldn't quite put a nail on the 'why' so I chocked it up to being side effects from chemo. I was attending a chemo session before I was to leave for a vacation in Las Vegas, could barely walk into the hospital without passing out and naturally I was admitted into the MICU at Grandview while the oncologists discovered the chemotherapy had internally not been as successful as they originally thought and the cancer had spread into over 80 tumors filling my lungs. Unsure as to what course of action to take I was transferred to The Ohio State University Medical Center's Arthur G. James Cancer Center d/b/a The James (or the Jimmy). The story from here goes down hill. I really only remember the first night, when I started to become unable to breathe for myself.
- The next part is all second hand as I dont remember any of this -
It was explained to myself as well as my family that because of the rapid progression of the cancer I could chose to be intubated, sedated, and undergo a rigorous radiation treatment regime set up by my specialist at The James, or, I could chose to end my fight in which the physicians promised me they would make me comfortable until I was unable to fight any longer. They explained if I did chose option A, but they were unable to successfully intubate me or if for whatever reason problems occurred, a 're-intubation' would be extremely difficult and nearly impossible given the damage to my throat. With this information I signed a DNR (do notresuscitate) order for the duration of my sedation which lasted somewhere between 12-14 days) Luckily I made it, and the radiation diminished the tumors by over 65-70 percent and my chemotherapy was switched to a more aggressive version.
I woke up not knowing what had happened or the extreme hell I had put my family and very, very select friends through. My legs had atrophied and my arms could barely move. My hair had fallen completely out and I hadnt shaved in 2 weeks. I looked like I had just won Survivor. How humbling to be fed by your parents at age 25 right? So I spent another 6 weeks at The James before being transferred back to grandview for another 6 week stay in their inpatient rehab unit so I could learn to walk again and function. Even after leaving I was only able to walk on my own for, maybe, 40-50 feet. But as time went on I regained my strength and my stamina. Unfortunately the lung tissue that died with the tumors I wont get back, so I have a somewhat 'limited' lung capacity and walking up more than a few flights of stairs causes me to lose my breath quickly.
Last summer was wonderful after I was released from outpatient therapy. I took several trips to Cedar Point, and of course many to Kings Island then we rescheduled our trip to Vegas for late August which was wonderful. I also was so glad I was able to spend a good chunk of time at Lake Cumberland as well. The part I havent mentioned was that after a visit to my specialist at OSU he decided since I had shrunk the tumors so much, and responded so well during rehab etc I could stop chemotherapy. Could I be so lucky? No.
Mid September rolls around and I start to develop more coughing and fatigue but the inability to sleep - constant restlessness is fantastic incase you were curious. By the end of September I was admitted back to the MICU / SICU at Grandview for 2 weeks while my oncologists strategized what to do since the tumors were again growing larger. So it was decided again, to send me to The James, where I stayed for 2.5 weeks undergoing an extensive battery of tests and biopsies, including 2 open chest biopsies to determine why the cancer was so aggressive. I was discharged and sent home from Columbus with a little oxygen machine to help me get my hemoglobin back to an acceptable range.
Six days after getting back to my home my mother came home to find me in my bed unresponsive and barely breathing... not my first ambulance ride but certainly the first time I had the honor of telling the EMT if she tried to intubate me in the squad I would pimp slap her. From the ER at grandview I spent the next 7 weeks bouncing around all the ICU floors the hospital has to offer while being only one step away from being intubated again since my lungs were just unable to supply my body with enough oxygen. If you know what a high flow oxygen therapy is, thats what i was on. The little doo-dad they shove in your nose isnt the regualr cannula its one that forces your nostrils open as big as they go and then, quite literally, forces air down your throat. Six liters is considered "high" for a regular patient, at max the machine i was on was set at 65. I still got chemo as an inpatient and as such with the high flow O2 my lungs started to rebound yet again and I was finally able to go home.
Thanksgiving meals in the hospital - not so yummy in case anyone was curious about that too... I think I had jello and some reheated skyline.
SO - since then i havent been back to the hospital in an inpatient capacity. I still get chemotherapy every 3 weeks and the effects on me have become more minimal as the sessions continue. I just 'celebrated' my 35th chemo session this past week. I still get tired the day of treatment, but as far as nausea and vomiting its very minimal. My stamina is improving and every day truly does get better.
As far as where do we go from here... Is the cancer better? truthfully, maybe a little. Is it worse? No... so we're currently stable and the course of action for now is to just continue the chemo and let my body continue to fight it and that's what we're doing. 9 months without a hospital stay is pretty good all things considered. I think at one point I counted 165 days as an inpatient in 2009, but 0 in 2010 :-) If you were wondering how much this has cost, (its not a rude question btw, and i dont mind talking about it) - My medical bills are somewhere in the neighborhood of 2.25 - 2.5 million dollars... But im not a self pay so all is well!
That was definitely long - and there are obviously many more details I could get into but thats the important stuff about whats happened health wise with me since Jan 09.
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