… or I should say Hair Yesterday, Gone Today.
My hair was getting patchy so I took the proactive route and had Anthony the barber take it all off.
I am FINALLY feeling like my old self again. My energy is high. I don’t wake up feeling hungover. I am getting things done again. I do hit a wall around 5:00 PM and need to rest and I do fall asleep early around 8:30 or 9:00 but otherwise I feel absolutely great and ready to continue my battle with all of the intensity required.
I was watching the American League Championship Series last night and when the Royals won they showed a shot of George Brett. Brett was my favorite baseball player growing up. His intensity was unmatched. I came across a YouTube clip last night:
THAT is the kind of intensity needed to fight Cancer!
Today Helene and I are going to Philadelphia for a second visit with University of Pennsylvania to sign consent forms for their trial. I am very excited about this one. I don’t want to share details until all the consent forms are signed and we are in. I am a little superstitious that way but it looks like there IS a road to remission.
Look out Cancer. George Brett is now on my side!
Many of you have asked for an update on my progress. Generally I don’t write “just to write” something but here goes:
After getting the backpack off last week I went through 3 or 4 days of feeling very weak and tired. The chemo cocktail wreaked havoc on my red blood cells. My hemoglobin was as low as it had ever been. I spent a good portion of the weekend sleeping. I even went upstairs during Yom Kippur break the fast on Saturday night to take a short nap. By Sunday afternoon I was feeling like myself again.
Dr. J said that I would probably bottom out Tuesday or Wednesday (today) but I think I got through that earlier. Good thing because I have a couple of busy work days in front of me.
Even with the low hemoglobin I managed to muddle through appointments at work. I think I had some productive meetings which makes me feel good.
Going forward I am supposed to have my blood work done every Monday, Wednesday and Friday. We set this up in New Jersey so I wouldn’t have to rake into the city three days per week. Thank goodness!
Helene and I went to Labcorp on Monday to do the blood work and it was a shit show. One disaster after another. Not only did they not read the results right away as the prescription was written, they lost one of the vials of blood! Here we are on Wednesday and my doctor still doesn’t have the results of MONDAY’s blood work! All we know is that my platelets were low. No word on hemoglobin. No word on anything else. Good thing I feel well otherwise I don’t know what we would have done.
Today we switch it up and we are going to Overlook Hospital in Summit to do blood work. Thank goodness for the kindness of Dr. L who arranged for that and will read the labs STAT. STAT – a word Labcorp apparently does not know the meaning of. As Helene said, if Labcorp sends us a bill she will go ballistic!
Bottom line is – I feel great. My energy is increasing every day. I am heading into a good period in between cycles that I would like to take advantage of with my family, my work and my friends.
Thanks for checking in everyone.
So as I mentioned, today I got unhooked from the backpack that infused 96 consecutive hours of chemo in me. WHAT A RELIEF! I was able to finally shower after four days. I actually just stared at myself in the mirror after the shower saying “Thank you. Thank you. Thank you.” over and over again!
I feel great. The last month has kicked my ass with HD Carfilzomib, radiation and now 96 hours of a cocktail my Myeloma has never seen. The objective is to get my numbers manageable and in the right direction to proceed to one of the options available to me – Penn, Sloan, Mayo.
I can already feel a difference.
Many, many thanks to all of the friends and family who endured my moodiness, my emotional roller coaster and shared my pain and suffering in ways very personal and specific to them.
Special thanks to my friend Lauren Roth – today’s driver and companion. Not only did she drive me in and back but she literally was my Ray Donovan. My fixer. Thanks to Lauren’s relentless phone skills, my time at Mt. Sinai will be split with a local oncologist in Summit at Overlook Hospital. Dr. L, at Overlook was the original oncologist we saw upon diagnosis before choosing our Myeloma specialist Dr. J.
We have set things up at Overlook with Dr. L to have local treatment while Dr. J will continue to quarterback the overall plan in conjunction with Penn, Sloan, etc. It will be a welcome relief to not have the pressure of having to be in Manhattan so much.
So as I have been saying – #betterdaysahead –
Just the ability to shower “wire free” – that little bit of good news today – that things went off without a hitch for the first time in along time – is a true SILVER LINING and a hope that we have turned the corner.
Has Myeloma given me it’s all yet? I don’t know. But I still have plenty of strength left. Plenty of strength in this old dog.
Backpack off. Feeling great. Check the numbers in a couple of weeks. On my way home to SHOWER! First time in four days. Family should be happy!
Welp – we finally got it done yesterday. After a week of low blood counts, bad calcium counts and fevers I finally got the Chemo backpack.
In this bag full of Chemo is a cocktail that is supposed to get my numbers under control so we can proceed to the next phase of treatment. My brother in law, Jeff, and I went to Penn on Thursday to consult with doctors there about a very exciting therapy. BUT – first things first.
It actually doesn’t feel that bad. There is a bag of Chemo cocktail inside the backpack attached to a pump which is hooked into the port on my chest. I wear it for 96 consecutive hours. It’s lightweight so I can function with it on AND it’s sporty. I feel like a city girl with my little black backpack.
After the 96 hours we will take my myeloma markers again and hopefully see progress toward remission so we can take the next step at Penn, Sloan Kettering or Mayo Clinic – whichever is right. I have options. That is the important thing.
It feels good to finally have a long term plan. It feels good to be driving toward something real and driving toward something that can give me a nice, long lasting remission. The past few weeks have certainly kicked my butt. Not with pain or sickness but with uncertainty. Every day I woke up to something different.
My strength during the last two years has been my ability to organize the many facets of my life – family, friends, work. I haven’t been able to do that over the past few weeks. Now that I have some certainty back and a long term plan I can incorporate that into my day to day life and that makes EVERYTHING much easier.
Special thanks to my friends Joe and Mike for making the trip to Mt. Sinai with me yesterday. It is so great spending that time with good friends. Again, the trip was longer than we planned but nobody batted an eye. Afterwards we went and had dinner with a bunch of friends. Rosh Hashanah leftovers. Me and my backpack. My new companion for the next 96 hours.
Just like Dora the Explorer. I hope that map inside is a map toward the CURE! Or at least toward REMISSION.