Monday, August 25, 2008

Thanks for telling ME

I just found out “he” isn’t performing my surgery. He is having an “assistant” there. But the “assistant” is doing the surgery. Which is ok with me I guess. When I visited the doctor last week, I wondered how he’d do with surgery because his fingers, although not bent, seemed swollen with arthritis. However, I’m not happy that he didn’t even attempt to mention to me that he wouldn’t do the surgery. I found out from the pre-surgical admitting nurse! Ya know, I wasn't fond of him 22 years ago, and now I remember why. And the comment while discussing accidently slicing the kidney tube thing or intestine followed by "knock on wood" didn't help me feel any more comfortable.

Hopefully, the assistant who isn't assisting but preforming does a good job.

moving forward - surgery

A week past what could have been another treatment therefore I’ve had the extra week to heal.
I have been feeling better. My sense of taste has improved but my muscles feel like I haven’t used them in years. Which I have. I didn’t make myself bedridden. But that is the nature of the beast. Affecting muscles among other things. My insides still feel… swollen & burning.

I’ll be meeting w/ radiation oncologist August 26th to find out when that will begin.

Surgery is on August 27th . He’s going to try to go in laparoscopicly, but warned if he has trouble, like the parts coming out may be too large, or he is concerned he might accidentally sever a kidney exit tubie thing, or an intestine, he will then slice me open. I am praying he is precise and exceptionally skilled to be able to do it laparoscopicly and I can go home the same day. I just don’t want to spend 1-4 nights in the hospital with my daughter’s substantial separation anxiety. (Add that to her throwy uppy list.)

wrong cat

I did have a 4 phase ct scan. The doctor reported everything looked good. Which was great news until, I brought up the fact that, they reported on the WRONG THINGS! They talked about the jugular instead of the subclavical looking for clots, the oncologist concurred and went to check it out himself. They didn’t mention the node in the right lung, or pick up on the microcalcifications in the left lung which I’d think should actually still be there since it wasn’t removed & it’s a “waste” like product of rapidly growing & dying cells…. I did get a call that there doesn't appear to be a clot in the subclavical. Which is good. I have yet to ask the doctor to check on the lungs issue (again cos I didn't get an anwer). It just doesn’t seem they were as thorough as they should be. Perhaps it was because it was on a Friday and the tech just wanted to get the heck home for the weekend? But that sure as hell doesn't help me or my doctors now does it.

Friday, August 22, 2008

What Smells or things literally make you sick?

It is really odd how a smell, certain consistency or a thing can trigger strange reactions and often affect us without us realizing it right away.


When I was a young whipper snapper, there was a night I clearly remember when I was sick. Full blown throwy uppy –heaving every 20 minutes kinda sick. In between the horking, I would lay down on the couch. My mother had the, get up to turn the dial, before VCRs, only 7 choices of stations, tv on and it was tuned into the movie Hello Dolly, it may have been the first time it was on tv.


A couple years later, Hello Dolly was on again. And I’m sorry Barbara, but soon as I saw it, I instantly got up, ran down the hall with my hand covering my mouth in case I didn’t make it to the bathroom, and uncontrollably blew it all. I didn’t realize that movie was a trigger until it happened a 3rd time. That sick feeling of viewing that movie stuck with me into my 20’s ever since that first memory of seeing it. I’m over it now. I think.
I guess I really can’t be sure. When I run across it now, I change channels with my remote control to any of the other now 200 channels.

I’ve always been a good hand washer. But going through chemo treatments I diligently and obsessively washed my hands my hands near raw for fear of slipping and making myself sick - er. Halfway through, I found a soap that just smelled divine. Lavender. Quite refreshing. This past week has found me feeling progressively better then I’ve felt in over 6 months. Yesterday, I washed my hands with the lavender scented soap. I began to have a recall moment and developed that tin-y chemical taste in my mouth. I notice a few minutes later, my stomach didn’t feel so hot either. A couple of hours goes by and Sarah washes her hands with the same soap….. I immediately had that taste and stomach thing start again. Then I realized, I now absolutely and passionately hate that smell. I had to ask her to instantly dump that crap out before I blow.

I had a problem with lima beans too.

My daughter’s downfall was hotdogs and “slimy” fat noodles with chicken a-la-king (she was good if it was rice). She’s over it now, but that took about 4
years. When we’d go shopping and she got mad at me she’d start repeating, “lima beans, lima beans, lima beans, lima beans”. I’d fire back “hotdogs, hotdogs” and “slimy fat noodles with chicken a-la-king”. We’d both start
getting queasy then silently finish our shopping and get the heck out of the
store.
.


I would love it if you’d share any stories you have where a thing or smell affects you in a strange way. (IceAngel, I’ll be willing to bet you have a couple!)

Thursday, August 21, 2008

What I’m learning---- From so many people….

So many family & friends praying & have my back ….

and So many strangers out there praying for me….

I carry a tremendous amount of guilt. Guilt of all the people that have sent me well wishes, prayers, cards, gift cards, food… Where the hell was I when YOU were going through a real rough time?

I always prayed for you. Always. But I never told you I was. And I SHOULD HAVE TOLD YOU. I know now the difference it could have made. You knowing I cared about you. I have learned a great lesson from you. I am thankful for that.

I still get cards & prayer cards, and I still cry each and every time I read them. Part from reality hitting again, but mostly knowing that 8 months later, you have not forgotten me, still care, and still pray. When I feel low or alone, I turn to those cards, re-read them and remember you are there for me. And yes, I cry all over again.

To the people that don’t know me, but are praying for me…

You have humbled me further.

(I’m still scared, so please don’t stop.)

Wednesday, August 20, 2008

Some want to talk but some just clam up

I hope this doesn’t come off as a harsh rant. These are merely the thoughts that run through the heads of some of… “us”. The people that belong to a “club” that no one ever wants to join.

To those calling, leaving messages, I appreciate you so very much! And again, I apologize for not returning your calls.
Some of my own family members are on edge wanting to know what the heck is going on with me that don’t own a computer or have Internet access. Whether you do or do not, please know I’m not avoiding you. Please don’t take it personally, or feel singled out or excluded. You need to understand, I have felt like shit beyond shit for 6 months now, holding my head up for 5 minutes could tire me. At times I didn’t even know what I was saying. I was just not able to communicate successfully. (Think back to a time when you were violently ill.... while you were throwing up, or resting shortly afterward, did you want to talk to anyone in those moments? How about pneumonia? You just wanted to sleep. You didn't have energy to chat.)

And let’s be realistic, there are people out there that ask how you are doing that don’t really want any details at all. Some want you to know they genuinely care. Some are afraid of what they will hear, don’t know how to respond but want to be polite by at least asking. Most legitimately DO want to know. It’s hard for someone on my end sometimes to know just how much information to spew. Essentially, I try to shut it off. However in turn I feel, I have nothing to offer to the conversation when asked “what’s going on?” or “how are things going?”. I feel there has been nothing for me to talk about except what’s going on in my house that I’ve been confined to, only nothing IS going on because I’ve felt like shit and haven’t done anything with anyone. Then there is the, you forget who you’ve told what to. After saying it a couple times, you just don’t feel like repeating it again. The story teller looses the oomph and the story becomes lacking and dreary. So, I have to say, blogging has been a great relief from that.

I’ll try to work on attitude adjustments and better time management now that I’m expecting to start feeling better.
Thanks for listening and being patient with me!
((Now that I'm thinking about it, I am realizing, instead of making excuses from my point of view, there is actually something for me to learn here! Damn))

Saturday, August 9, 2008

Alternate Reality hits a Milestone.....

I’ve never been one to get wound up about finding a tumor. (I’ve had plenty removed in my time.) I went with the flow, had it removed; always assumed it would be nothing to worry about. Others around me would get excited and up in arms about it, but I was always the cucumber. Why worry until you have to? When I first found out I had cancer, I actually remained quite cool about it. I wasn’t surprised. Until I learned more detail. The
aggressiveness & severity.
The dreaded outcome and odds of something this aggressive. THAT surprised me. I really despise that word. Cancer. There are days when I realize I have it and I really really can’t believe it’s happening to me. It’s much like an alternate reality. I think that word should not be associated with me one bit! Not me or anyone around me. Family or friends. It just doesn’t happen to me. Each time I type “that word” I get queasy. I honestly feel like I might blow chunks.

So, in this alternate reality I’m living, that can’t really be my life, a milestone has been achieved. I made it through 6 rounds of TAC chemotherapy and so far I’m still here. I’m not feeling the greatest, but I can honestly say now, I’ve felt worse. With more shots, my CBC came up to a pretty good level, therefore I ventured out to store (with less fear of catching something) with Sarah for school supplies. I was completely wiped out by the time we got home. I had a CT scan yesterday, 4 testes in all, 2
bottles of berry smoothie barium (yum? Not really, but I’ve tasted worse), 3 shots of dye, which I could hear the squirting sounds as it was being injected, then the hot feeling rushed in. Not unbearable, but it wiped me out. I got home, changed clothes and flopped on the bed. I could have slept through the night even though it was only 4:00 when I let my eyes close.

Of course, I’m nervous what the scan may or may not find. It’s a
vicious circle. If they find something, I’ll be totally crushed. If they don’t, I’ll sit and wonder if there really was something there, but it was missed or too small for them to catch, and then by the time another test is done it will
be too late, it will have grown, and I’ll be crushed. If I had a less severe form of canc…((( choke )))… this disease, maybe I’d be thinking a little differently. Maybe I wouldn’t.

Getting close to the 3 week mark of what would normally be another treatment on tap, but being done with them, I’m looking forward to feeling better with each passing day. I may get knocked down a few pegs near the
end of this month when I get the ovary surgery and start radiation. But we’ll cross that bridge when we get to it. My brain is thirsting to go back to
work. Yet, it gets tired and peters out rapidly still. If I were to try to go back today, someone would probably find me staring blankly into space with in 30 minutes and later my face planted in the keyboard inside and hour. I’m not sure what affect radiation is going to have on energy, concentration, and scheduling of my time. That’s the same bridge that is currently under construction.

Can’t cross it till it’s built.