Sorry for the silence. I am still here, and still kicking, but have been oscillating between three very precarious and varied states for the last few weeks:
- Too tired to log in and write anything
- Too lazy to log in and write anything
- Too worried about worrying you with updates that sound dire because there is no progress.
Well, I am here to share where I am on this journey.
About the treatments
I am undergoing chemotherapy in Birmingham every three weeks. But it isn’t the same thing every time. On odd-numbered visits, I have the one-day protocol known as VAC (which includes that wonderful liquid known as The Red Devil.) On even-numbered visits, we go with something else that includes Ifex.
Ifex is quite corrosive to the bladder, and you can’t even take it all at once like the Devil. It is spread out over five days. So instead of going in for eight hours of chemo, I get a full 40-hour week of it. They also pump my IV with steroids, and bladder buffers, and anti-nausea meds, and saline, and God only knows what else. It ends up being about 35-40 liters over the entire five days.
The first time I did the Ifex (session #2,) I ended up gaining more than 30 pounds in the first three days. That is not a typo. Thirty pounds.
I can’t begin to tell you how bloated I felt, how disorienting it is. Your center of mass drastically changes, and getting around is a chore.
Tomorrow, Monday April 15, I start Round Four – which means I will be floating in and out of that clinic all week.
Getting around and getting by
I do get by with a little help from my friends – rides too and from the clinic, and those who bring me lunch. But outside of that time, I really don’t feel all that sociable. Suddenly being bald and 40 pounds heavier than I have ever been will do that to you.
The complications have come in the form of fatigue, and a persistent cough.
Since starting treatment, I am anemic. Not enough hemoglobin, not enough oxygen transfer, so my heart works harder when I engage in strenuous activity like going up a flight of steps, or walking, or standing. It is no fun.
Also, this cough has been following me around for a while. It is more of an allergy cough than it is productive chest cough, with mucus. But to be safe, I had been on a couple of antibiotics, stayed away from humans during my low-immune time, and have been single-handedly keeping local pharmacies in business with my purchases of cough syrup and lozenges.
Long term outlook
So, here is where we have some clarity with the game plan to excise McMurray from my existence.
At the end of the month, I will come in for an MRI, and we will have a basis to compare the mass from December until now. If my surgeon sees enough retreat that he thinks we can go get it, then I will have about five or six weeks to recuperate before surgery. If the tumor is not sufficiently small, then we do rounds Five and Six, then check again.
Here is where it is interesting. If they examine the tumor and find that it is mostly dead, that means the chemo works and I will have another eight rounds of poison. However, if the chemo has not been effective, then the mass is not as dangerous as we thought, and we will simply finish off the area with a couple of shots of radiation.
Either way, I still have a few months to go.
Rarity
What I have is considered a “Ewing’s-like Sarcoma.” It typically hits men in their teens and early 20s. Outside of that age range, there are about 20-25 cases a year in the United States. (Even my diseases prove that I am immature.)
It’s funny, because I get to see a lot of student doctors coming through, who remark about the extra research they had to do on my case.
By the way, my doctor is outstanding. He has only done sarcoma and melanoma his entire career. He really is the go-to guy for what I have. When I am in the infusion center, it is common for there to be people there from many other states. I am lucky.
Thanks and thanks again
I can’t tell you how much I have appreciated the cards, and the unexpected packages. And the notes and messages and phone calls. I am truly blessed to have all of you in my corner.
Now that I know what to expect from these rounds of chemo, maybe I can overcome the fatigue of bloated laziness and be a better correspondent.
And maybe soon we can have some better things to talk about.
Love to you all…
Issac I’m continually thinking of you I wish I was closer!!
I am so glad you posted. I have been wondering how you are doing. Hang in there. I appreciate your willingness to share your journey.
Crazy crazy journey you’re on, Ike….MAN. Sounds like there are at least a few road signs and helpful folks along the way, I hope they bring a small comfort during so many hard days.
Plus it sounds like you’re literally one in about what, 10 Million??? I laughed boisterously about your joke with the disease revealing your true age. You still got it. You’re still you, despite the fatigue and awfulness that you are fighting through. I’m amazed. This is HARD STUFF.
Thank you for checking in with all of us.
Wow. That’s a lot to ask of any human. Please rest, pray and ask for help when you need it. Many many prayers going up for you!
That’s quite a ride you’re on, and sounds like flexibility is an asset. Glad your in good hands. Thank you for the update.
I knew you were unique, but come on! Those are some crazy odds. I wish the treatment side effects weren’t so uncomfortable for you, but I certainly hope your next scan is good news. Thanks for the update! You’ve been on my mind and I’m glad to hear the chemo hasn’t affected your humor or your storytelling.
Thank you so much for mustering the strength to keep us in the loop. I still can’t believe this is happening.
Thanks for the update. I’ve missed your posts.
You got this Ike, You’re on our church prayer chain and certainly in my prayers. Besides, you’re part Herren, a very stubborn bunch. See there, a little smile?
Hang in there my friend. I’m dealing with very minor side effects of a new drug – nothing like what you’re dealing with – and I know how challenging it all can be.
Thank you for the update. Please know that you have so many people pulling for you, and praying. I can’t pretend to know how you feel (except for the chronic cough – which I finally discovered Ricola gives amazing relief), but I am glad you are sharing with us.
Keep up the good fight. Keep us posted when you can, we understand that some days you just don’t want to. We’re waiting for when you do, though.
Wow, you are really quite a hero. I literally HATE you have to go through this but as the saying, when you are going through hell, keep walking. To what address can I mail you obscene and inappropriate cards to make you laugh? Please text that to me at < phone number redacted> Much love and a big hug to you Ike!
wow Ike- what a trip you’re on. You being able to still have a sense of humor about this is astounding. I wish I was closer so I could join your team of in-person helpers. Please know that I’m rooting for you and wishing you wellness. xo
Keep punching, Ike. Beat this fucking thing. As for this line: “Suddenly being bald and 40 pounds heavier than I have ever been will do that to you.” That is the story of my life. Call if you need anything, brother.
BUT YOU NEVER ANSWER!!! (this is a running joke between me and Steve.)
I feel like there’s a light at the end of the tunnel. Im already waiting for those MRI results. The “mostly dead” tumor has me quoting The Princess Bride and I’m all for it. So, here’s for you finding your Miracle Max to pull you out on the other side once this is all over.
Love to you!
You’re going to get through this. Keep on fighting and having a winning attitude.
Thanks for mustering the energy to share your story, Ike. It means a lot you’re doing that, and – despite your altered state – you’re such a naturally coherent and engaging storyteller – you still shine with your words. Sending you mojo to shine with your strength and will, too. Oh, and a hug.
Thanks for sharing this update, Ike. I’m sorry that you are going through this. Glad your sense of humor is intact. Sending love from Toronto.
WOW! What a wild journey you are on! It is great to hear from you, and Thanks for the update. I’m so glad you are in good hands with a Great Dr. That is half the battle, knowledge and understanding of what is going on, a positive attitude, rest & a whole lot of prayers are the other half. We are praying for you daily. May God give you strength, patience, and endurance to finish this race you are in. You’ve got this & you CAN do it!!
Bronwe athan Harthad
Isaac, Thank you for writing about your experiences…you are an inspiration to all who have gone through or are going through the process of treatment. I am late to the message board…but still thinking of you and hoping that each step shows promise. Betsy
Ike,
My heart goes out to you. This journey is a long and difficult one yet, in your classic style, you approach it with a sense of humor! I’m keeping up with you and sending healing thoughts your way. Know that you are loved. Donna