Lots has happened since our trip to Gainesville! Steven got accepted into the Bone Marrow Transplant program. Even though we knew that the evaluation was for the purpose of getting into the program, it never dawned on me that he might get passed up. It started to play out when we got back and Dr. Sprawls was SO happy to hear that Steven was accepted. Well what the hell did he expect? That we’d drive up to Shands just for shits and giggles, talk to a few more white coats and then call it a day? That’s when it dawned on me that there were weeks of worrying that I missed because I just didn’t know that there was the possibility of NOT getting into the UF Cancer Fraternity. Right there I learned a little something that I kind of already know concerning worry and plans and the future. But, like a stubborn mule, it’s the constant reinforcement that makes me learn. I guess this was one of those “teachable moments” that have become all the rage with the younger generations. Oooh! Lucky me! I’m on trend!
We’ve been doing cancer for years. It’s been pretty routine. Not that either one of ever wanted this to be part of our routine, but Steven and I are both pretty committed to not being dead. But even with the excitement and glamour of life with tumor boy, this is the first time that the original plans for treatment are so far off course that I’m coming to realize there is no longer a real plan. We’re just heading in the direction of being well. We have a rough outline of how that’s going to happen, but the clockwork appointments that have ruled our lives for the past 10 years are nowhere to be found. Nothing is going according to any schedule! And that is the new schedule!
Steven was supposed to go in for his second, and hopefully last hospitalized chemo treatment, right after we returned from Gainesville. However, the doctor’s office called to schedule labs and an office visit with Dr. Sprawls during the time we expected to have Steven in the hospital. WTF? We were confused, but figured the doc’s office knew what was going on, so Steven went for his labs. That afternoon, the hospital called asking where he was…they were expecting him. Needless to say, that threw a little wrench into last week. Tons of phone calls, messages and “We’ll call you back>” However, Dr. Sprawls finally decided it would give Steven more recovering time after the long trip to Gainesville. (For regular people, you should know this: It takes more energy for the cancer patient to travel wearing a mask to keep away cooties on a trip. All the second-hand breath fogs up the old sunglasses, overheats the brain, cuts down on the oxygen going to your medulla oblongata and scares the shit out of everyone in the turnpike rest stop men’s room!)
So tests were OK last Friday and Dr. Sprawls had Steven set up to go into the hospital yesterday. “Supposed” is the operative word there for all the detective types reading! I took the day off from work to keep him from bolting and to make sure he got settled in OK. It’s getting harder and harder for Steven to get up the mental strength to face 4 days of IV drips that he knows are poisoning him. So now, it’s like tricking a dog to get into the car to go to the vet. Only Steven doesn’t fall for Beggin’ Strips and hunks of cheese. So I have to entertain him and keep his mind off the chemo until I can lure him into the car and lock it down!
Needless to say, when the hospital called on Monday afternoon to tell us they still didn’t have a bed for him, so they wanted him to wait until this morning. I was just thrilled that I stayed home from work. Not that I’m loving work so much anyway these days. It’s general knowledge that the builder I service is trying to boot our company out of the design center business and staff the new Design Center with their own peeps. Yeah! I could be without work. The monumental repercussions of that are so enormous that I can’t even fathom it. Everybody in my company keeps telling me not to worry, but that’s what they told me LAST TIME THEY LAID ME OFF…WITHOUT INSURANCE!!!! Sometimes it’s just so hard for me to pick who I should HATE!
I can’t decide if this is a case of, “Psst! Come here little girl. Look at the box of puppies I have in the back of my van.” Or is it more like, “I’m a Nigerian Prince with ties to your family and I’ll direct deposit this $500,000 if you just give me the account number for your bank and your social security number.” Or is it just simply, “Bend over and spread ’em!”
Whatever is happening at work can’t be something I dwell on right now. We are so deeply entrenched in the insurance game at my current company, that I’d have to sell a kidney, an ovary and all my shoes to get us set up with new deductibles and out-of-pocket payments if I change jobs and coverage. So I’m pulling the BMT evaluation game and not worrying as if I don’t even know it’s happening. Surprisingly it’s working. Except I have had unusual manifestations of aches and pains, really weird dreams, inability to eat anything healthy and the sudden desire to run into traffic. But other than that, I’m fine! My back up plan is one I learned from George Constanza’s girl friend. I’m going with the NO, WE’RE NOT BREAKING UP approach to any impeding doom! Of course I like to keep busy, and I have been today.
I dropped Steven off at the hospital on my way to work this morning. I got into my office, caught up on my emails and was in the middle of a conference call when he texted me. They took more blood at the hospital and his lab work showed unacceptably low numbers for chemo. So they booted him out. 90 minute drive to work, 4 hours on the job, 90 minutes back home to pick up Steven and head for home. There I spent most of the afternoon wondering what the hell is going on and why haven’t I popped my spring yet. I should, I could and I would, if i wasn’t so numb. So Thank You Lord, for that!
If you want to help me take more time away from work and have more time home caring for Tumor Boy writing about our adventures with Cancer, we’d be so very grateful if you’d visit our Go Fund Me Page. Our insurance has a lot of loopholes for things that aren’t covered, and my job has no loopholes for being able to work from home! And I’m gonna do whatever I have to do to keep my husband around. After all, I just got him house broken!
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