I’m going to start tonight’s blog with a bit of an apology. I noticed that I really didn’t get much feedback last post and I can only assume that something involves my asking for help financially. You have to understand that making such a request was not something I ever planned on doing with this blog. Asking readers to support a charity was one thing, asking for help myself was another. Desperate times, as they say, call for desperate measures and this out of work nurse was (and is) freaking out about finances and medical expenses. I really hope that asking for help will not taint this blog and that those reading will once more feel free to comment.
That said, I now present you with a week’s worth of information.
I was very excited about the plans before me: radiation, egg harvest and the clinical trial. Still, I was also incredibly nervous about getting back to work. I want to work; it keeps me motivated and gives me something to focus on besides being sick. It also keeps my brain active. I like working and love nursing. Being out nearly two weeks was driving me crazy…
But we’ll get to that.
On Tuesday, I arrived at Dr. Mack’s office ready for what I hoped would be my first radiation treatment. I was wrong. Instead, I was placed in a CT machine where the tech measured the placement of my spinal tumor. She than made five marks with a green marker (which still has not washed off completely!) and rescanned me. When she was certain of the placement, she went back with tattoo ink and inked my skin. What was, until this point, mostly uncomfortable because of the pressure in my back suddenly became rather painful. With a sharp needle, she puncture through the ink to make five small tattoo marks (three along my belly –two above my belly button and one below– and one on each hip). Of the five, only two didn’t hurt much: the highest above the belly button and the lowest. The others reinforced why I will never get an actual tattoo; though, as these are permanent, I guess I already have five. Beat that!
I went to see my boss that day as well and she reiterated that she was uncomfortable with my returning to work. Breaking my back is a huge concern and, given the pain I’ve been in, no one really wants me to risk it. Not even Dr. Brooks –but we’ll get to that too. I left there hoping this would all be temporary and something else would come of it. I still have that hope.
It wasn’t until Thursday that I had my first radiation treatment –and so far they’ve been pretty standard. At the first treatment, they took a few X-rays to be certain that the placement of my tattoos and my body’s position were the same before treatment. They told me this would be done once a week while in treatment. Then, they marked my stomach again in green marker, this time with a box around the area they would focus the radiation on. Leaving me laying flat in a machine that resembled a giant microscope, the radiation techs left the room and closed a special door so they wouldn’t be exposed. Alone, I laid still while they first radiated the front of me and then the back. Once it was clear, they came back in and helped me up. The first day, they listened carefully and helped me up in a way that didn’t jar my back too much. The second treatment, which they had been running late on to begin with, they didn’t listen at all. They simple pulled me up, jarring my back so badly that I cried. I must admit, I’m not pleased with this so far and it’s taken a lot of ice, heat and medication to get my back feeling close to comfortable again.
And still if I sneeze or cough, it feels like someone is jabbing a knife in my spine. Pleasant.
Friday, was a busy day after my treatment. I met with Dr. Brooks for the last time until June as he is turning my care over to Dr. Borad and Mayo clinic. I discussed going back to work with him, but had my disability and FMLA paper work with me just in case he wouldn’t budge. He wouldn’t. I’ve been officially signed out of work and limited to anything that can be done sitting at a computer. He wanted to limit even that, but I drew the line at him taking away my internet. I have to have something to do. I was definitely disappointed that I won’t be returning back to work; as I’ve said, it means a lot to me to keep working. I felt like I was making a difference somehow, but that might have been all in my head. Dr. Brooks said once the radiation was done my spine would heal in time and I had to let it, working as a floor nurse just wasn’t an option. He’s even gone to bat for me by trying to get the hospital to forgive what little bit of my contract was left (two weeks!) Here’s hoping that comes back in my favor.
Finally, I met with Dr. Hutchinson about fertility preservation. They drew some labs and did an internal ultrasound to see if my ovaries had been affected at all. There was one small problem: he couldn’t find them. He became concerned that what he was seeing on the machine was either bowel, which was particularly full, or more tumors. Because I need more tumors. Because of the obstructed view, he wasn’t able to tell me how my ovaries looked, just that my uterus appeared “perfect for carrying a baby once the cancer is gone.” Thanks, Doc, I’ll get right on that.
I then met with Holly, his sister, who educated us on the nearly two dozen injections I would have to give myself in my stomach (to stimulate egg production), as well as the one in the muscle (HCG, for maturation), and some antibiotics Milo and I would need to take (to be sure the sperm and eggs didn’t come with any little bacteria). When all was said and done, I went to check out and was suddenly told I’d be paying for the entire IVF, not just the lab fees. I started to freak out since Fertile Action and Dr. H had told me it would just be the lab fees! Holly came out later and told me that it would just be the lab fees and the anesthesia, the rest would be done at cost because of my circumstances. It’s bad enough the drugs for preservation are ridiculously high priced, but to have a doctor lie about donating his services and blind side me with the costs was almost too much!
The injections, thus far, aren’t too bad. I’ve done two and left small bruises even though the needles are rather sharp. My skill at injecting isn’t so great thanks to it being myself. I hate needles, ironic I know, but I was good at giving them to patients. I only hope I can find someone to do the HCG one because a) I can’t imagine giving myself an IM shot when I hesitate on the subcutaneous (into the fat) ones right now and b) I don’t trust Milo to do it!
I continue with radiation (every weekday at the same time for ten days) until May 9th and will see Dr. H again this week to see if the injections are overriding the Lupron and producing eggs. I sure hope this works; we want children so badly!