Columbus and the Valley

Pin Cushion – Part B

With the agony of itching a mere distant memory (I lied, despite all the terrific home remedies — and I diligently tried them all — the itching is not only a distant memory, but is so close I can still scratch it!) we’re steeling up to be the “B” side of a human pin cushion at Duke University Hospital’s high-dose interleukin 2 program. We’ll be leaving again on Sunday morning, if my lab report is clean enough for me to be readmitted for treatment. It was late going up to Dr. Morse’s office and I haven’t been able to confirm with him my creatinine level and whether or not we’re a go for this Monday or the following Monday.

I was able to drop by the office for a few minutes today after I went in for lab work at JBACC. Man, it was good to see my office mates and we got the great pleasure to see former tenants of ours, College Resources Center’s dynamic trio Genie Mize, Hope Phillips and Jean Flowers, who stopped by to bring us a bodacious bag o’ goodies for the trip. I love those three women and we miss them so much. It was serendipitous that we got to meet Genie and get back together with Hope and Jean for the too-short time we had while they were in our building. It felt good to have my whole harem back together again. It is hard to get in a word as the only “male member” of the group. Our building at 10th and 3rd has been affectionately been called One Penis Place (OPP) over the years. Now with videographer, Danny Beard, on hand, my gender numbers have grown by 100%.

An update: the gout is on the way out, I’ve almost completely peeled off the entire top layer of my skin, I’ve pretty much lost the water weight I packed on last week during treatment, Andy Pippas and his entire staff are still THE BOMB, the John B. Amos Cancer Center is an absolute healthcare jewel, we appreciate the readers of this blog and we’re ready for the second part of round number one. I’ve got a giant bag of my dad’s peanut brittle, which we’ll be using to try to bribe our way into one of the larger corner rooms at Duke on the 9100 floor.

We’ll blog from NC to keep everyone up-to-date with our efforts to get this cancer gone.

 

Lizard Man

Despite what it may look like, I respect the readers of this blog so much that I like to bring something decent to read to the table each time I post. Generally, the lapses in information coming from me means that I’m happy, well and going about my life. Sadly, this is not one of those times. I am 50 shades of miserable and I haven’t felt like I could write something that anyone would want to read. I know, though, that our friends want to hear from us to get a feel for how I’m doing. Another reason that I’ve been reluctant to post is that I don’t want to be one of those pitiful people that just sits around and whines about all the stuff that is physically wrong with them. But, let’s be real, this blog might have started out as the life blog of a relatively healthy mid-fifties magazine publisher, but it has become more of a diary of a kidney cancer patient. So, I slog on, and especially with this post, I’m writing just so people can know what is going on. I don’t feel like writing. I don’t really feel like anything at the moment. Well, an empty husk might aptly describe how I feel.

If memory serves me well, I was given the 9th dose of high-dose interleukin 2 mid-morning on this past Thursday. Because some of my electrolytes were out of whack, I received a few infusions that got me ready to travel and we were released on Saturday afternoon. With only a part of a day to drive, we went as far as Kannapolis, NC for the overnight and then came on home on Sunday afternoon. I have been trying to recuperate since.

This illness and my own personal foibles have dealt me considerable one-two punches. You might recall that about a year ago what started as a good turn from my brother in the form of a tainted scrambled dog left me with five days of vomiting and diarrhea in addition to the normal difficulties of getting over major back surgery. Although, one of my most physically demanding weeks, I got through it and survived to write another day.

This HD-IL2 therapy was extreme, in every sense of the word. Every eight hours your body is infused with the HD-IL2 drug and this cytokine therapy is supposed to wake up your body’s natural immune system to fight the cancer. Getting the treatment is tough enough, but the week or so of downtime is even more difficult because you’re awake enough and alert enough to know you are just miserable. But I got another whammy and developed the worst case (of three attacks) of gout I’ve ever had. In addition to the awful itching and peeling, the crippling gout pain has made my life very difficult over the days since we’ve returned from Duke.

Itch update: So far, my entire face, ears, eyelids and neck have completely peeled, leaving behind the nicest skin I’ve probably had as an adult. My torso, legs, feet and scalp are sloughing off skin now, and because I cannot have any type of steroid on or near me, I’m dealing with this using bath treatments, lotions and drugs. The itching is maddening and coupled with gout pain in my right great toe, I’m a hot mess right now.

I know this is going to pass, but damn, I’m like to just get it behind me. Jill has been a constant, patient angel and she goes about keeping all our various balls in the air with grace and courage. I love her so. Hopefully, the gout will be gone shortly to leave me to finish recuperating from the HD-IL2 in peace. Then we’ll be off again on Sunday for the second half of the treatment and have to face this all once again. The prospect of a cure looms bright in my mind and helps make all this misery worth it. Thank you all for continuing to support us through this difficult time. Your prayers and notes of encouragement are continued fuel for the fire of my healing.