Thursday, August 28, 2014

Frustrated

I don't know what to say. I didn't think this would be as hard as it has been. I stopped eating solid foods a few weeks ago and have had a very hard time getting back on the horse. The problem is a combination of nausea/vomiting, lack of taste/appetite, psychological.

I don't remember food being this difficult during transplants, but that could be distance painting a rosier picture than what was. To be totally honey, hydrating is a problem too. And these make for a bad pairing.

The last time I was at MDA, my creatinine was 1.6. Normal is between .6-1.o. I've always fallen below the low end of normal, which means healthy kidneys. My transplant doctor asked me to have more blood work done the following week. My creatine was slightly worse. Dr. B. suggested that I was dehydrated and suggested IV fluids. I acquiesced.

The following week I saw Dr. B. again and things were much the same. I confessed my inability to sufficiently eat or drink. He reassured me it was all normal and that things would be better by the second and third week. In the interim, he's prescribed a short course of steroids to help me with what's causing the nausea/vomiting.

I'm slowly trying to get back to solid foods. It's harder than you'd believe. Chris has been very patient with me. I know it's very difficult to see the person you love unable to do the things that you take for granted every day. I'm hoping to give a better report in a few weeks. Hopefully I can start eating normally before too long.

Friday, August 15, 2014

Finished, Maybe?

I had my final radiation treatment on Wednesday. 33 in total. As for what happens now, I don't really know.

My creatinine levels are compromised, so I have to have blood work done locally next week. My transplant doctor has suspended some drugs just in case. The chemo drug I was receiving is known to be unkind to kidneys.

I'm off of solid foods due to my throat and mouth hurting so much. I can't taste anything, either, so it is a strange experience. The next 2 weeks are crucial to my healing. The skin around my neck is a very dark red in addition to peeling and stinging. I'll need to consume enough calories and protein to help it all heal in the meantime.

Most of my time is spent sleeping. The fatigue from radiation is mind numbing. As appointments appear on my schedule, I'll keep you all informed of what happens next.

Sunday, August 3, 2014

Eight Days

I have eight radiation sessions left. Eight. It seems so insignificant to write it out, but those eight sessions feel like they'll never be over. There's also one chemo left. I don't know what happens after that last session with the electron gun. This is so very different from blood cancer.

The sense of urgency isn't there. There's no mad rush to get things done. Treatment happens at a slower pace and it makes me a little crazy. Once I know what will happen, I know I'll feel better about everything. I've already been warned that the effects of radiation will continue for 2-3 weeks after that final session. My skin has broken down on the right side where I'm getting a larger dose of radiation. It is most uncomfortable and very unsightly. I can't imagine it getting much worse, but I've seen pictures.

All of this is so foreign. I wish I could give you all more details, but I'm as much in the dark as you all are. There will be a PET scan at some point after the final treatment to see if radiation and chemo have killed the cancer. Fingers and toes crossed.

Thursday, July 31, 2014

Reminder

Hi All, I just wanted to put out a reminder that my company's fundraiser to help off-set my medical expenses for this latest round of treatment is Friday, August 1.


Saturday, July 19, 2014

Time on My Hands

Three and a half weeks isn't a long time. It's not. 18 more radiation treatments. 3 more chemo treatments. That's nothing in the scheme of things, but it's stretching out in front of me like it will never be over.

I'm sick of feeling slightly ill and shaky. I hate that all of my effort is centered on eating and drinking. I have to keep my calories and protein intake up. I met with the GI center about placing a feeding tube. If I get one, it has to remain for 8 weeks before it can be removed. They've warned of placing feeding tubes in the last week of treatment because the affects of radiation continue for weeks after treatment stops. I don't need one yet since I'm only losing roughly a pound a week. Too much weight in once week and hello PEG tube.

Chris has been a champ throughout all of this. He's working while I'm between appointments.

I don't have very much more to report. My neck is seriously sunburned where I'm getting radiated. It's going to get worse. I'll keep posting as things occur.

Tuesday, July 8, 2014

My turn

It's been a very difficult two weeks for a number of reasons. Patricia, aka PJ, of the Plog has died. She's been by my side blogging since almost the beginning. We used to talk on Sundays and compare transplant notes. She's had the same number as transplants as I, although she was treated for AML. We laughed and cried together and I will miss her very much.

Another friend is currently in the hospital after getting into a car vs. motorcycle accident. I don't have the details and hate that Chris and I are not home to visit him in the hospitals. He's been so sweet to us throughout this latest cancer endeavor and I wish I could return the favor.

Chris and I couldn't get through any of this without our friends. So many reach out, just when you need them to let you know you're not alone. My dear friend Lisa, of http://www.lisabadams.com  checks on me every day and gives me a connection to another woman who gets this whole carnival of a cancer ride. We don't always talk about our cancers which is such a balm. It's so nice to be able to talk about the small things that most people let pass by. There's a healthy dose of snark, which if you know me is a given, and I am forever grateful for her.

Now on to the stuff you're really here for. I'm on my second week of treatment post neck surgery. I've now had 6 radiation treatments and am tolerating them well.  Since I'm being irradiated on both sides, my neck is sunburned and slightly uncomfortable. I know things will get progressively worse. I'm looking forward to a sore throat, mouth sores, esophagitis (sores in the esophagus), nausea and fatigue.

I've completed two of six chemo therapy treatments. The agent I'm receiving was jokingly called "baby-chemo". I'm here to tell you there's no such thing. I thought that since I was only getting one dose a week, it wouldn't be so bad. It's bad. Apparently, cisplatin is highly emetic. Last week, I spent two days constantly vomiting. I expect the same to happen this week. Always Wednesday and Thursday, after the pre meds wear off. Chris has ensured that my weight has remained stable.

If I lose ten percent of my body weight in the first few weeks, then I will be encouraged to get a feeding tube. If mouth and throat sores become too bad, the feeding tube is still on the table. I can't heal if I don't get enough hydration and protein. If it means getting a tube, then I will. Until then, I'll do all I can to hold it off.

The doctors have warned me that the sore throat will creep up on my by the end of this week. I've already got a touch of fatigue. My hair should start falling out by the end of week three. It's already a little thinner up top. These are all temporary things and I will get through them.

I just keep telling myself 5.5 weeks. It's such a small fraction of time when you consider all of the time I lost to 2 transplants and leukemia. This is nothing in the scheme of things in terms of time.

Tuesday, July 1, 2014