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.

'Bye.

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!

Ta-ta.

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.

Attitude

I am up at this God-forsaken hour of the night/morning (about 2 am CST) because I am just not falling asleep. So I carefully slid out of bed and hooked up the laptop, ready to share my thoughts. And guessing that many of you are not wanting to read them, based on the last several posts.

If I didn't know any better, I would think that I am on some kind of "happy" pills. I do feel pretty good (health-wise, which might mean that my body is fixin' to betray me again), and that may be because my hemoglobin count is up a bit. Based on the fact that both chemo and bleeding lowered my red cell count, I was advised to eat certain foods (none that I really like) plus take iron pills. Iron supplements have the charming side effect of constipation. Hmmm... didn't I go thru THAT stuff when I had to take painkillers following surgery? So not anxious to gobble iron. However, L had some of them, and the dose said 300% + on the bottle. I used a pill splitter to halve them and have been taking one half-pill daily or every other day. Plus we put some steaks on the grill tonight and that probably amped up my iron a bit, too.

Pretty much have made up my mind to get most of my hair cut off today (it is already Wednesday) or tomorrow. I am tired of having big gobfuls (trust me, this is NOT an exaggeration) falling out everywhere - jackets, on my gloves, on countertops, etc. And I am guessing that I will cry. And freeze. And feel even less feminine.

Enjoying a cup of gingerbread tea, which I recently purchased. Celestial Seasoning puts this out (a "seasonal" tea), and it is pretty tasty.

I have received several nice cards, some holiday, some not, with words of encouragement from folks in the rv park in the Tampa area. Some are NOT all that close to me or to L, and yet they took the time to write some nice things. I was very touched by each one.

Well, dang it -- I wish sleep would come! Had a wonderfully, deep and long sleep Monday night. And then tonight... after laying there for quite a period of time, no ZZZ's seemed to be in the cards for me.

But anyway... hope you are encouraged that I finally posted a bit of a brighter blog tonight. Next Wednesday is chemo #2. Wondering if I will have the same side effects or if new ones will be added. Not fun to look forward to. But hoping that the end result is that my life is saved.

Down, down days

Damn. I wish this was a an upbeat post. It is so, so difficult to be "up" when your hair is falling out by the handsful. This is NOT an exaggeration. I have been told that I will be bald by the time chemo # 2 starts (Jan. 4th), and the body is trying hard to make that schedule.

I KNOW that I am not the first woman to go thru this. That does not mean that I have to embrace it. Hair is so important to a woman, as it is the image she presents to the world. It means her femininity. I have always tried to make sure my hair is attractive and clean, but I don't over-fuss with it (no hairspray, for example).

I have a friend in Texas who has been very supportive of me. She herself went through breast cancer over 4 years ago, and was successfully treated with chemo from May through September. She did not experience radiation. She said she lost her hair - head, eyebrows and eyelashes. I forgot to ask her about body hair. I am losing that, too. So now I will get to experience looking like an ageing porn star. Just what every woman in my age bracket wants.

Another side effect, chipping away at my femininity. I don't know if I will ever feel "sexy", attractive or feminine again. This saddens me greatly. So it hasn't been a great day (again).

I recently purchased a wig, knowing that this was going to come. And brought it to a very understanding, empathetic hairdresser. She was so nice, so supportive. She said that when it comes time to trim my few remaining hairs (my words, not hers), she will do it in any setting where I would feel comfortable, including a private room at the salon.

And one of the nurses who does my INR (blood "thinner" tests) at the local clinic was so supportive, also, today. Her husband went thru some very harrowing chemo and bone marrow transplant (his own marrow) years ago. So she has been very close to a loved one who has experienced some of this. Yes, a different gender, but she KNOWS that this is a bitch to experience.

By the way, we had a good Christmas Eve. Spent several hours in the afternoon with my sister, her s.o., and her son, daughter-in-law, two grandkids, her daughter, our mother and of course, L. After this gathering, we drove to L's daughter's place and spent the rest of the evening with his family. We ended the evening at a 10 pm church service. A very long day for me, but the two gatherings were very nice, very loving.

You will all have to bear with me. My emotions are very close to the surface and I am told that my lowered hemoglobin can be responsible for depression as well as me not being able to tolerate the cold.

Thanks to those who continue to struggle thru this with me.

Non-eventful week?

Warning: this is not an upbeat post.

Dear God, I know that you cannot give me what I most desire for Christmas, my health. So I am aiming for a little easier-attainable goal.

Could you please give me a week or so, WITHOUT complications?

I had my first chemo Dec. 13th. And I felt pretty good about the whole thing, considering: that I experienced male-symptom heart attack symptoms about 20 minutes after the introduction of the first chemo drug. Yes. It felt like ye olde Mack Truck sitting on my sternum (breast bone). My partner flagged down a nurse, telling her that "we need HELP here". The young gal apparently thought he was kidding or overreacting? Then my gluteus max muscles knotted and constricted, very painfully (I don't cry easily folks), enough to bring me to tears. L went looking for "my" nurse, and she practically ran to the side of my chair. (Didja know they give you chemo in a recliner-style chair?) And stopped the chemo. And asked very pointed questions about the level of pain, location of pain, etc.

She started me on a heavier-dose of Benadryl-style drug(s), which made me sound as though I was auditioning for an understudy role for Foster Brooks (an old-time comedian, who sounded like someone genuinely inebriated). And then she resumed the chemo, but at a much slower drip-rate. Plus still had to administer the second drug. So the expected 5 hours was about 6.5 hrs. Sigh.

But I felt pretty good, and we even went to dinner following this incident. Even had a beer, just like "real" people are known to do.

Returned to Duluth on the 14th, still doing pretty well.

Yeah, dumb me. Expected this would last. On the 16th, I started bleeding. Spent Friday night on the futon, which L had draped with a plastic tarp and then an old towel over that. When I was still bleeding Sat. morning, we went to the emergency room. After tests (don't want to go into details), I was admitted to the hospital, where I spent a restless night on one of those little crib-sized beds. The only good thing I can say about that evening is that L picked up a pizza that we shared. Food of the gods...

Finally begged and pleaded for a release Sunday morning. The wonderful female gyn who had hospital duty Saturday/Sunday said she wanted to see me today (this afternoon). I was glad that she was on duty, for I am switching to her (from the male doc that I never really "warmed up" to). One good thing that came out of this.

Dropped a couple of more pounds (hospital food SUCKS) by Sunday morning, so I am on a "junk food" diet until my weight stabilizes. Any excuse to eat ice cream, chocolate, steak, mmm....

And so it goes...

Oh, folks: please stop telling me that attitude is everything, that I am strong, that I will get thru this, that "it's only hair". When YOU are yourself experiencing this, then I give you leave to make these statements. So far, all a "positive" attitude has gotten me, is another "downturn". So (pardon my language) piss on that positive attitude shit. It is hard enough to be upbeat about where my life has headed. So please, PLEASE back off.

Christmas Eve in two days, and I hope I will be around for yet another one next year. Should we put that on a "board" and everyone can take chances? Not a positive week, can you tell?

Round 1 of chemo

So here's the update. We drove to the Mpls. area Monday night, to be there for the 10 am chemo appointment on Tuesday. We stayed at the Hope Lodge, a facility sponsored by and staffed by the American Cancer Society. Most of us are familiar with the Ronald McDonald houses, for families with children. But Hope Lodge is for adults only. This particular one has 40 rooms on two upper level floors, and the ground floor is for shared dining rooms and kitchen areas. You may bring food and refrigerate it there during your stay, and you may avail yourself of stoves and cooking pots and so on. Very nice, very clean, and completely free of charge to the patient and caregiver. This location was originally funded by the Richard Schulze family (he heads up Best Buy), with matching contributions from others throughout the community. His wife died from mesothelioma. As we so often find out, money cannot buy a cure, nor even (in some cases) a timely diagnosis.

The Lodge is on the shuttle run that goes to several of the hospitals and clinics, so that also cut down on expenses (parking ramp). By the time they had the IV in me (thankfully, I did not require a port), it was about 10:30. The first drug was an anti-nausea one (should help for a few days, I am told), and also some light-weight Benadryl-type drug. Then the fist chemo drug, Taxil (Taxol?). About 20 minutes after that started, I had a classic male-symptom of a heart attack. Felt like a large truck had parked in the middle of my sternum. Lloyd flagged down a nurse (not the nurse who was assigned to monitor me) and said that we needed help NOW. Apparently this nurse did not think it was urgent. Then I had additional side effects, severe, SEVERE cramps in my gluteus max (both sides, and I am talking pain on the level of 8 out of 10). Now I am crying. Lloyd finally tracked down "my" nurse, who practically ran to my side. She immediately stopped the chemo and asked very specific questions about what else hurt, degree of pain, etc. She ramped up the Benadryl (making me pretty fumble-mouthed and sleepy), then resumed chemo drug #1 at a much slower rate. Thankfully, the second chemo drug, Carbo, did not have any apparent side effects. But that one will take my hair away. The infusion was slated for about 5 hrs, but due to the stoppage and then re-starting @ a slower rate, it was about 7.5 hrs.

So now I have one session finished. We "celebrated" by going to Susie's Psycho Bar and Grill, up in Northeast Mpls. I had seen this place several years ago on the Food Channel's Diners, Drive-ins, and Dives. It was okay. I was just glad to have an appetite. Had a beer and felt like a "real" person.

Wednesday, on our way out of town, we stopped at a Macy's store (none are up in Duluth), so that I could buy some lingerie. Also picked up some caps that I'll probably want to have for the next year or longer. Apparently, even after everything has halted (chemo and radiation), it takes forever to get ANY hair back.

The nurse told me that Friday will probably be my worst day for nausea. So I hope that means that I will NOT be nauseated the entire time that I am having treatment. Oh, and then there's the diarrhea that comes with chemo, too. Should be some fun holiday gatherings, as I'll have to make sure that I know where every bathroom is located. "Where's Jess???" Guess they will always know where to look, first.

Bought a wig that was amazingly close to my hair color, and I'll have a local hairdresser trim it closer to my own length. I will probably buy one or two other "partial" wigs, which show around the edges of caps and hats. And a soft cap to protect my head, which I am told will be VERY sensitive. In a week or two, L will clip my hair off. I am sure there will be tears associated that.

Knowing 2 people that have gone through treatments, who are willing to share their experiences with me and answer questions, is so SO helpful. I hope that I can also be supportive to someone in the future.

That's it, folks. Lots of emotions that I cannot even begin to share. Thanks for caring enough to read from time to time.