I woke up this morning, Day +2, and feel like I got hit by a truck driven by Mike Tyson. The bastard is cheating! The side effects are really piling up. The mouth sores (mucositis) are pretty painful; it feels like I chewed glass shards a few days ago, and the cuts are just starting to heal. I made the mistake today of ordering scrambled eggs with diced ham, onion, and pepper. I should've gone with just eggs. Without going into too much detail, my digestive system is off kilter but I am not nauseous. I take Imodium about every 6 hours.
I am on so many drugs that I can't keep track of them all. That was my reference to Haight Ashbury - the Summer of Love, 1967, was when Owlsley introduced LSD to the Grateful Dead and many others. I feel a bit like a chemistry lab myself, drugs to fight the effects of the drugs that are fighting the effects of drugs that are fighting the effects of irradiation and chemo drugs. Today they will give me PCA, patient control access, which is basically a button that I can push to give myself more painkiller. If the mucositis gets bad enough that I cannot eat, they will feed me with an IV drip. I had a mouthwash of lidocaine and other stuff this morning to make my mouth numb enough that I could take some pills.
Fentanyl or dilaudid for pain
Actigall protects the liver
Benadryl for allergic reactions
Compazine for nausea
Imodium for diarrhea
Triple wash to numb mouth
Cipromax antibiotic
Allopurinol protects kidneys
Bactrim for pneumonia prevention
And at least two or three others I am forgetting.
Yesterday I was visited by the physical therapy nurse, who wanted to make sure I was getting enough exercise. It is true that there are some windows during the day where I feel like I could exercise, if by that you mean get out of bed, and she wants me to do so, so she plans to bring me an exercise bicycle, and left me with a list of exercises to do. We'll do our best.
So basically I feel like crap, as planned, and it is going to get worse before it gets better. Hooah. Taking a shower is a major undertaking, trying to keep all this tubing protected and the port site dry, so I have that to look forward to every day. And to add insult to injury, the Red Sox game was not on last night.
I have prided myself on having an iron gut, but that just ended as I am writing this. I just lost breakfast and all the morning medications into the bowl. Dang, Tyson lands another big shot to the gut. I am wobbly-kneed, seeing double, but I will right myself before he closes. That is all for now.
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Keep hanging in there John; you're doing great.
ReplyDeleteI hope you didn't hurl that omelet onto the keyboard - very messy and I don’t think it will be covered under the Dell warranty – unless you went way out on a limb and bought that Upchuck Option package.
You know, we can build stealth bombers, design heat seeking rockets, put a vehicle on Mars, fly planes into hurricanes, but we can’t figure out how the hell to go through these medical procedures while still being able to take a shower. What’s up with that???
Remember who you’re fighting, e.g. keep those ears taped back.
Mac
John I simply stopped taking showers daily. They covered my catheters with tegraderm patches then some other brand, both burned through my skin, leaving one heck of a rash. My bmt was in May. Had some kidney failure in august due to the immunosuppresent drugs.Every thing is Ok now, started going to the gym last week, I have never been weaker. It took a few months for my appetite to return, now that I can order food out my taste buds are returning. Good Luck Bill
ReplyDeletewell, since I never had the iron gut, I prided myself on being wimp enough to avoid what might make me seasick, but I just read all of what you wrote today.
ReplyDeleteI almost didn't check in, because who thought you could be writing today?!!
but you DID, even if you were seeing two screens.
and you just helped me not to regret the year of enduring one evening/wk at counseling,
because now I know to say that you might want to LOWER YOUR EXPECTATIONS.
for now, getting out of bed is a great achievement!
and if you want to stay in bed, then stay in bed with the intention in mind--it's just a way of stepping aside and letting Mike Tyson push air until the whole possum thing tricks him into looking away and POW, to the moon Alice.
If you're in isolation and you don't take a shower, does a tree falling in the forest know whether you have b.o. or not?
none of us can imagine what you are going through, even though you don't leave much to our imaginations...but it won't always be like this.
reincarnating as a twin takes a little time but you are already well on your way.
I hope you get some rest but
thanks for keeping the story going
John,
ReplyDeleteYour story leaves me speechless, almost...
plumes of fog
lift off the trees
along the shore
I see as I speed downward
after cresting the center of the bridge
ninety feet above the water
one mile from shore
I head south on route 1A
I still see ribbons of fog rising
but they are not as distinct close up as they were from a distance
positive vibrations
mo
Hey John,
ReplyDeleteGreetings from down the hall. Sounds like your process is going really well. I am super happy for you. Hopefully I'lll get to meet you out in the halls wearing maksks and exercising soon.
SPencer
Hooha...Remember the diet that you introduced to your boys when they were learning to eat solid food; rice cereal, bananas, apple sauce, plain scrambled eggs...perhaps your iron stomach needs some babying. Take it slow man! Your getting stronger, but baby steps are in order. We (your collective rooting section) will distract Mike with our powerful healing blows, while you catch your breath and get those new cells into mass production. We are with you!!! Mike doesn't know that your arsenal of supporters are jumping into the ring to knock him out and completely smash him to smithereens.
ReplyDeleteoh. my. god.
ReplyDeleteyou are in the bubble but you have already made a friend down the hall.
and he has his mask ready to go trick or treating with you when the time comes!
I'll be curious to see if neighbors in the forcefield start speed-healing around you...
we'll see when he starts wondering why he feels so crowded in isolation, starts banging on the walls, yelling for all us rock-em sock-em fans to keep it down in there.
I could tell you how brave you're being (and you are) and how this will be over (and it will) and that so many people are thinking of you (and we are) but instead I think I'll just say that this sounds like a really crappy time for you right now. Does it help to know that you are surrounded by love (sappy, but again, you are)? In my effort to feel like I'm doing s-o-m-e-t-h-i-n-g, know that I am checking in on your boys. Had a long conversation with young John a couple of days ago and went to see Mikey's temporary digs yesterday. YOU ARE LOVED!!
ReplyDeleteHi everyone, Dana here. John has gone from bad to worse as they told us he would. I saw him briefly this morning, looking really miserable, with dry heaves and a tongue so swollen and sore he had trouble speaking. The docs came in while I was there and decided to put him on continuous IV pain meds and nutrition. He can barely swallow. I think he lost this particular round but all this is right on track with what they told us would happen, so I know he'll come back strong in the next one. He was understandably grumpy this morning and wanted me to go, so I left to take Lisa and Manuel to the airport and then drove back to SLO for the weekend. Our social worker has also encouraged me to take a couple of days off now while I can. Once he is released from the hospital he will need a caregiver (me) 24/7 for about three months up there in Palo Alto.
ReplyDeleteA note on the shower thing. The docs strongly encourage him to get up and shower every day not only to get his lungs expanding a bit and avoid issues there, but also to wash the bacteria and such from his skin as he now has NO working cells to fight off infection.
Bill, congrats on getting through BMT and getting back to the gym. I'm happy to hear your taste buds are working again! Spencer, we look forward to the day you and John can meet mask to mask. I hope you both, along with Rich, will continue to check in here. It's really encouraging to hear from you who have been through this and are coming out the other side.
Ellen, thanks for checking on our boys. Looks like they are doing well and that is a big load off our minds.
Pat and Bruce, thanks for delivering lasagna and flan to Mountain View fer heaven's sake! Gosh darnnit! It was delish!
Lisa and Manuel, what can I say? We are eternally grateful. You have been so gracious and giving. You have some goooood karma coming your way!
Pat, Mac, Mo, and Lisa S, thanks for keeping us entertained. I doubt John will blog for the next few days but I will try to keep you all posted, get it? Posted.
Xs and Ohs,
Dana
John:
ReplyDeleteThe story goes, as I heard it from Mike, that you met in some class room in Warwick, RI. You said to him, move or I will throw your books out the window. Mike responded with, you move or I will throw you out the window. I understand that started a frienship that lasts even today. Two tuff guys who won't take crap from anybody. John, you are one tuff SOB! Not many people can do what you are doing all the while staying as informed as you are. Keep up the fight John. Tyson caved before and he will again. Marian and I are right behind you wishing you and Dana all the best and positive support. I look forward to a beer and sunset over the rock with you and Mike soon. I am sending a big stick to wack BQ as often as necessary.
Matt