I am 10 days beyond chemo IV and have another week before the next PETscan and brain MRI (5/19 and 20). These and the worry of what they will show, are far enough away that I am now just enjoying finally feeling better from the chemo session.
As the word spreads, I continue to receive best wishes and support via cards, calls, and emails and all of this is deeply appreciated and it makes a great difference. Thanks to all of you for this and your good thoughts.
However, the chemo sessions are harder to take in that I know the routine and the drug regimen and the absence of this mystery increases focus on day and time of getting out of there. Also, the drugs have given me a strong aversion to hospital food mainly because I know the daily menu and have, to put it delicately, seen many of the same meals twice. Another effect of the drugs is on tooth brushing…. Tooth paste tastes terrible and I have an acute gag reflex triggered by trying to clean my wisdom teeth (I should have given up on those 30 years ago). Thus, during IV my stomach turned each time a food tray appeared at the door and I had to ask them to not bring the food into the room. This meant that my nutrition was lessened earlier in the session, although at least in the initial days my kids strategically brought in food…. when I was loaded with anti-nausea meds, and the window was open for pizza and Subway sandwiches…which at least took the edge off for a few days. However, with the daily drugs even water starts to taste rusty and sipping it and lemon lime soda was about all I could do and chewing ice at least partially fills a gustatory reflex need.
As indicated above, I was again in good hands with the presence of my kids in the room. Erin logged a night, Wendy 2, and Jeff the rest. The rooms are small and my IV catheter is so short that there is hardly room for the fold out cot that they sleep on and, as described, earlier, using the “duck”, necessitated by the IV drip, is a close-order drill and involves family every hour or so during the night. So, the kids get about the same sleep level as I do…. You cannot rest in a hospital and my kids are a part of my often urgent bladder de-stretchings.
Although each time differs, my response to food after release took about 8 days. I am gauging this on how many of the nausea pills I need to down each day and whether or not I could taste foods. After several days of not eating anything there was soup…. And about a week at home (and by the way they kept me another day because of a post interferon fever) I had the first sense of enjoying something…. hot sauce on a bean burrito. After a few additional setbacks, I was able to taste Phil’s Barbecue on Friday with my best friend Dick Rosenblatt…and being out and in a restaurant and talking with Dick probably all contributed… but the barbecue sauce, while over rated in our opinion, did just fine in making lunch flavorful and filling. Also, today, I could taste and enjoy the second half of my DZ Akin’s onion bagel and lox…. I could not taste the first half on Thursday.
Beyond this good news all the other news is extremely good. To start grandson Nolan had a virus and cough and ultimately a brush with pneumonia this past week and is now back home in good shape and on the mend. My son Jeff spent the night in the hospital with him. Jeff holds the record for this year of being in the non-nursing bed, with me and now with Nolan. He is a good man. As stated above, on the last chemo run, he got an initial break from Erin who spent a night and then Wendy who spent two…. Lucky Jeff got me on Sunday and he had the added fun of staying that extra night.
Let me say this about the extra night…. The clock went slow and it took all morning to get released. Jeff drove “urgently” to SD so that we could arrive in time to see grandson Tate run his final track meet of the year…. We made it with 5 minutes to spare and Tate took second in the mile.
The big family highlight this week is Hailey’s school performance of Oliver. She is Oliver and our entire family will be there to see her on the night of 5/19. There are also day time performances and I may go to one of those too.
Other good news…. The laboratory continues to hum. MS student Ashley Miller has finished her thesis which is now in the hands of the rest of her committee and her defense is about two weeks away. Post doc Nick got his important paper on mako oxygen utilization sent in and he is off next week to a conference. My colleague John Long sent me an abstract on our joint project on the gills of a fossil lungfish and I have been reading about that all week and see an interesting connection between this and the work that Ashley has been doing. John will present the work in Texas at a paleontology meeting next month. Troy and I are tuning up for a possible project over the summer.
So, I am feeling well and full of hope that this will continue and that the scan news will be good. Thanks to all of you for supporting me and my family with your good thoughts and best wishes for us. Look for something on the scans about May 27.
jbg
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