Tuesday, January 17, 2012

The good news just keeps on comin'

So... met with the radiation oncologist this morning. And I am so, SO looking forward to that process wreaking additional damage on my body.

Here's what will happen: I will have an initial CT scan, so they can identify anything that they think will need radiation. Now this is NOT an ordinary CT scan, since it will also involve a vaginal CT scan. Having experienced a vaginal ultrasound recently, I can tell you that I am NOT looking forward to having another "vaginal" anything done. All dignity, all privacy gone, gone, GONE. They hand you a lubed-up deal and tell you where to place it (3 guesses).

Once the CT stuff is done, then a "plan" will be developed. Basically, I will have 5 weeks of doses (daily, each week, for 25 treatments) of radiation. I am told that they will MARK my body with little dots, to show where the radiation should be directed. I was also told that each session will take about 20 - 30 minutes, most of that to be sure that my body is positioned EXACTLY as needed. This is all while I am naked from the waist down, which I am sure will be EXTREMELY comfortable, right? On a cold, flat, hard surface, in a cold room. Boy, I can hardly wait on this one.

After a couple of weeks, I will apparently have side effects from radiation, which include lack of energy plus internal damage to various parts of my body. Some of those areas include burnt skin or internal tissue, plus damage to my bladder and my bowels. Oh, and to my vagina, too. So: goodbye to what had been a good sex life, I guess. This causes scarring on the upper end of the vagina, and in order to regain full use of this, it has been suggested that I use a vaginal dilator. Oh, more joy and happiness. Not to mention having to buy something that I currently have NO use for, and never wanted to. The bladder damage will cause me to pee more frequently, and the bowel damage will possibly/probably cause diarrhea. The fun, the anticipated laughs, eh? I am only sorry that I have to wait until mid-February to start this round of treatment.

Now, in case you think that all I am doing is feeling sorry for myself, I thought I would share something that I found - written by a woman who also had a cancer diagnosis and did NOT have to have chemo nor radiation. She writes:

I would describe myself as a woman of strong faith with a positive outlook on life. However, with the cancer diagnosis came a deluge of "what-ifs," and cancer began to dominate my thoughts. Fear, anxiety, depression, anger, and sadness were common emotions that plagued me all hours of the day and night. In my quest for information, I discovered the Cancer Concerns Forum on the HysterSister's website. I learned that my "what-ifs" had a name - cancerhead. Time and again this term came up as women described their fears regarding cancer. I found that I was not alone. Psychologists and other experts agree that women diagnosed with cancer respond in similar ways.

1) Denial – There must be some mistake.
2) Anger – Why are you telling me this?
3) Why me? – What did I do, or not do, to deserve this?
4) Resignation – I can’t help myself; it’s beyond my control.
5) Acceptance – I will fight this with everything I’ve got in me.
As I struggled through these various stages, I felt like I was on an emotional roller coaster. I did not want to take this journey or deal with the uncertainty of my future.
End of quoted excerpt.

What some of you may not know, is that I have gone through these pissy stages before, when my husband died unexpectedly at age 56, in May of 2008. I found support via some blogs and web sites. Now I am reading some of the SAME "support" statements from cancer sites. Just TOO MUCH to re-visit, you know? Even from the "welcome to this group that you never wanted to join" greetings. TOO MUCH.

The radiation oncologist (who I did like, btw) also said that the healthy reaction I have been experiencing thus far, following 2 rounds of chemo, will NOT last. So I guess I have deteriorating health to look forward to, also. Goodbye, energy, decent appetite, and so on. At least the hair is just about gone, so I won't have to keep sweeping and vacuuming THAT up in a little bit. Good thing, too, since I apparently won't have the energy for that little household chore.

Funny thing is, before this morning's appointment, I was about at step (5), listed above. Now I feel like I am back at step (1). Don't tell me to cheer up, to have a positive attitude. I just don't want to hear it now - if, indeed, ever.


Tuesday, January 10, 2012

Going forward

Just a few minutes here to update.

Had chemo # 2 on the 4th (Wed.) and the actual process went much, much better. The staff had the info on the problems from my 1st session and took care to introduce the problem-causing drug at a slow rate, initially, then sped it up gradually.

The biggest problem encountered at this second session was actually BEFORE this session. It seems that, since I have now entered the chemo process, I now need to be cleared (okayed) to go forward with the chemo. A nurse-practitioner does this. No problem with any of that. My "clearing" appt was scheduled for 9:30, which was about the time that I was ushered into a room and my "vitals" were done. And then we sat, and waited, and WAITED, and WAITED. I finally went out of the room, looking for someone to tell that we were STILL waiting - and furthermore, the chemo session was scheduled for 11 am, which was fast approaching. Finally, the nurse-practitioner graced us with her presence. She asked some very non-essential questions and I mentioned my chemo appt. And SHE informed ME that SHE had to "clear" me for this scheduled chemo. I disliked her STRONGLY. That's as nasty as I will get, in print. L and I both agreed that she had that "I am in charge" attitude. A wonderful way to endear her to patients - and guess what? We have to deal with her for each and every chemo appt from now on.

Oh, and the reason that she showed up late? She went to the WRONG patient's room, so someone else was in and out quickly, while I sat and sat, becoming later and later. "I'm in charge" never admitted that to us, btw. Someone else on the staff coughed up that info.

Hair (on my head) is still falling out. Fewer and fewer strands. Sickening. The hair on my legs? Still growing. Still have hair on my arms, as well as eyebrows and eyelashes. Pubic hair, still leaving. And my "privates", without the protective buffering, are now subject to rubbing and chafing against underwear and jeans. No one ever mentions THIS "delicate" subject. So, folks, I am telling this fact NOW. I consider this blog and its current subject, a public service.

Have been enjoying the record-breaking temps (in the 40's), but that will be over in another day or two. So then I have a choice: an appearance-saving wig (NOT warm) or an ugly hat with no hair under it, and said hat will have to worn ALL the time when I am out in public. Yes, it is ONLY hair...

Okay, trying to be upbeat - and truly, I am feeling pretty good, as far as energy and my appetite is sorta ok.

Well, gotta run. Housecleaning calls (yuck) and I need to pop in the shower before I head into town for a blood test. All the fun you can squeeze into one morning!


Sunday, January 1, 2012

A New Year and...??

(A coupla pix of me when I looked more like the "normal" people do. It's all I have to hold on to, so you gotta indulge me...)

Well, here it is, 2012. And I actually DID make it to midnight (unlike someone else who shall remain nameless), although I watched the ball drop @ Times Square an hour earlier than that.

Had a low-key day (New Year's Eve): Saturday night church, dinner @ a good local restaurant, and then a drink at a local establishment closer to this place. Was probably back here by 10:30.

The hair is just about gone now. But amazing, how much you can still shed, given that so much of your scalp is showing. Now have two wigs, and the first one (which I bought via the American Cancer Society because the color was similar to mine and the style was, also) will need some further trimming. I knew, based on the description, that it would be too long, but as my stylist said, she prefers to under-trim the length and let me wear it, before I decide I need more length removed. I'll try to post some photos.

I cried in the shower again yesterday. The loss, the loss... Ironically, my health appears to be just fine: good energy level, decent appetite, and so on. But it is just so hard to accept the hair loss. Wigs are truly a pain in the ass (if this offends you, you should never read my blog again), because when you are mostly hairless, it is difficult to keep that damned "dead cat" on your head. Think of it: it SLIDES, folks. And truly, I do NOT like the hats and turbans - I don't want something to scream "cancer" the minute I walk into the room, truly I do not. I want to live my life as normally as possible, although being under the medical micro-management that this requires, IS irritating, at best, and at its worst, really pisses me off when I am very down or feeling unjustly "blessed" with another thing that SOME believe is a situation that "God doesn't give you anything you can't handle". Yeah, early widowhood isn't enough, is it? So for all of you blissfully leading happy, carefree lives, you can thank me for handling something that apparently YOU cannot handle? You see how ridiculous that statement is?

Other statements: don't drown in the "pity pot" (said by someone who has NOT talked to me in person and does not read this blog and had not gone thru this, either); and countless folks who say that I am strong and I can handle it. Trust me, I would have to a friggin' brick wall to be THAT strong. Especially when the chemo gave me the heart attack symptoms. I am only 5'3" and weigh under 115. (Maybe less without hair??) How strong should I be, at this size - and at this age, too?

Oh, and I would appreciate it if you do not mention any of your family members who have died from cancer. I already am facing my own mortality in a way that I never, ever thought about before. If you can't say something positive, then don't say anything at all. People told me (following my husband's death) that they could relate, because their father, brother, in-laws died. Not. The. Same. At. All.

Anyway, I am trying to be positive as I face chemo #2 on Wednesday. We will head to the Cities Tuesday afternoon and stay at my nephew and his wife's place for the short drive to the Mpls. campus for a medical check-in plus the chemo scheduled after that. I don't know if they will try to start #2 at a slower rate or not. From what I have been told, each round of chemo can be different from the other one(s). I hope the assigned nurse noted my symptoms from round #1. Plus they do NOT know about the bleeding and lowered hemoglobin which occurred a few days after that, either.

Sorry to keep returning to the hair thing. But. Don't. Tell. Me. It. Is. Only. Hair. So far from being true that I cannot even relate to someone who says that. Just please shut up, if that's the only "supportive" thing you can say.

So (for other cancer sufferers who are also wading thru some of these same statements) what CAN you say? How about a hug, or a comment that you can appreciate what a struggle this is for you. Truly, those same movements and comments also apply to widows and widowers.

Getting off my soapbox. Hope to post some photos with this blog later tonight. I want to be as open as possible (don't worry, none of 'em will be nudes), and I am shedding my desire to hide away, so that others can see just what some of the treatment entails. Not trying to shock, but instead to share.

First photo: all the hair products and accessories that I will not be able to use for probably over a year (if I am that fortunate).

Second photo: hair loss for about a day-and-a-half, before I had most of it cut off. There's a up-ended shot glass behind the pile, just for perspective.

Third photo: hair on its way out, me with my face covered. This openness is not as easy as I had hoped.

Fourth photo: face uncovered. Again, not so easy to do.

Fifth photo: the hat (or something similar to it) that I will be wearing for months (or maybe a year -- who knows), in order to not freeze my naked head and to not look so ugly to anyone who might pop in, or to my significant other. You have no idea what a hassle it is, to wear a wig. Maybe I'll post some wig pix tomorrow.

Anyway, this has been a tough post to publish. So I'm outta here for tonight.