Wednesday, June 26, 2013

I'm Hooked Up

 With much trepidation, I dressed and waited for the daughter to appear. She lives close by so it didn't take long. We left in the Grand Marquis with me driving. She takes over this chore on the  drive back after the chemo.\

This chemo has some very weird side effects and I think I have experienced most of them. Cold is the biggest nemesis. Walking on cold tile floors in bare feet will cause a tingling to begin which quickly turns into a burning feeling. The hands are the same. Gloves must be worn to touch anything cold. Cleaning the refrigerator was done yesterday before this visit to the clinic. Every liquid that is swallowed must be at room temperature. The throat closes up with anything cold. The sub mandibular glands clench and you know you have crossed the line on temperatures.

I've had one episode of vision change on the first run of chemo. I was grateful for the daughter being there to drive me home. On the way we stopped at McDonald's to get a little cheeseburger which caused the episode of lockjar.

The Decadron caused the "roid" feeling. I didn't get to the "rage' stage but I thought I was going to leap out of my skin. A klonopin fixed that feeling and now I know to take one about mid way through my infusions on chemo day.

I am no longer taking the Xeloda. We replaced it with the infusion medicine 5FU. The insurance companies won't pay for the Xeloda and my cost was five thousand dollars a month. 5FU is the old liquid form of Xeloda. The drug companies developed the oral form a few years ago and of course they spend millions of dollars on one page ads in the medical journals pushing it to the doctors to prescribe. They tout the fact that it is so convenient for the patient as they don't have to be accessed and have a pump in a fanny pack for 48 hrs to get the infusion. You come home with the pump and wear it for 44 hrs. Getting in the shower isn't a possibility but I think I have a bath. I'll just prop the pump part of this on a short table beside the tub and be careful around the mediport (infusion port). A sponge bath is an option too. For the cost of 5000.00, I can live with a little inconvenience. I also like the fact that I am not dumping all these chemicals into my stomach.

This pump should be disconnected at 01000 tomorrow morning. That means I wore it from 01400 hrs starting Tuesday to 01000 hrs to Thursday at 01000 hrs. Easy peasy. I don't mind at all. That saves me almost 10 days of swallowing those huge grey pills twice a day. Another upside to this is the oncologist lowered the dose on the Oxilaplatin because the liquid 5FU requires a lower dose of it. I am not having the same intense side effects this time. She (Dr. Johnson) also lowered the dose of the Decadron (the steroid) to half strength and that also cut back on the jitters. I took the Klonapin anyway. I wanted to be ready.

This has been mostly a boring post for those that aren't going through this but for those surfing for information on these drugs, it might help someone prepare and be aware of some of the side effects. Apparently I am one that is extremely sensitive to drugs (but then I already knew how drugs affected me ;-). I caught the tail end of the sixties)

In conclusion, I feel much better after Chemo 4 then after Chemo 3 and I'm so grateful. Today is the day after and except for my fanny pack, I would never know I had Chemo run number four. Hurray for me.

Dr. Johnson has ordered an ultrasound in July. I know what that is leading up to. 2 more rounds of this chemo and it will be time to address the breast issue. I'm sure she will wait until I finish this part of the chemo before she seriously considering my mastectomy. I get queasy thinking about this surgery. I likened it to losing a leg, or an arm. Body image is a strong part of our being. I have had people ask me if I were going to go through reconstructive surgery. Some have even mentioned my age and whether it was necessary.

Right now, the answer is "yes". I don't feel 64. I like to put on clothes that fit correctly. I won't have this same large bosom, and for this I'm REALLY thankful. A nice pair of C's or a single D cup would be acceptable. I'll have to let the plastic surgeon determine that based on my body size.

Enough about my day. I'm thankful I feel so much different today then what I anticipated! I'm thankful that I have a husband and daughter that keep telling me "you can do this" on the day before chemo when I get so emotional. They are ready to offer support because they know the day before chemo is a depressing day for me. I can ignore this illness for the most part but the day before chemo brings it all back in one big rush.

I'm making it. I'm going make it through this. I have no idea what the future holds after I'm finished with all this but I have only one choice and that is to Wait and See and keep on living as we all do to the end.

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