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.

47%

Went to find any support blogs, those kind written by women who have "been there, done that". It's the same method that helped me find other women who had lost their spouses when they were NOT elderly. In the long run, it was very helpful to me following Greg's death.

So, I found one website, which split off the testimonials by cancer types. Helpful, you would think. However, some of what I read (by those whose experiences were several years back) was truly frightening. And so I will have a LOT more questions, specifically in the area of radiation. One woman was horribly blackened during these treatments (it was painful, to the point of tears, for her to urinate and defecate). She did not have chemo, btw. So not sure how to interpret that one. More than one of those mentioned digestive (bowel) problems that did NOT resolve itself fully after treatment. More scary stuff. The woman who had only the radiation, was scarred so badly that she can no longer have sex. Whoa, let's address THIS issue NOW. I am sexually active and I want to continue that.

The worse statistic was when I went looking for prognosis. Should never have done that. More than one site quoted only a 47% chance of survival at the 5-yr mark, for those with my stage 3C cancer. So tell me again - WHY should I go thru all of this misery? More questions... more sadness.

Peace to all at this holiday season. A lighted Christmas tree brings a little bit of sparkle to my life... thanks, sweetie, for cutting a real tree. The first one I've had the pleasure of enjoying for years and years.

Too tough to handle

Well, my life has taken its usual turn into the toilet.

I start chemo next Tuesday, 3 sessions, 21 days apart. Then 21 days after the 3rd session, 5 weeks of radiation, every weekday, weekends off. (cause to celebrate, yes?). Then resume chemo, 3 more sessions. That effectively screws me for the next 6 + months.

Bald and freezing in this frostbitten part of the country. Lowered white cell count (hello, infections), lowered red cell count (hello, fatigue and anemia), disappearance of all body hair. As if the very treatments are not enough, I will spare you (for now) the other probable side effects.

Had to order a wig and pay extra for the expedited shipping. Otherwise, it will not be here soon enough to insulate my bald head. And a cap to just wear around the house and to sleep in. Homes are pretty cool during the winters up here, and if I am too cold, I awaken and shiver. Already bought myself an electric throw (smaller than an electric blanket - just need enough to cover ME). And I regularly sleep with sox on (don't like to be cold AT ALL).

I am angry -- so SO angry. I wish God would find another Job. This particular one wants so badly to resign from the position that she did NOT sign up for. I thought I cried a lot when my husband died. That is nothing, compared to the tears I am shedding so frequently now.

I know that I will be the subject of gossip, although people who DO talk about these kinds of things, just do not see it that way. I have a few CLOSE friends that I do and will talk with. But those phone calls about "how are you doing?" just do not fly. If you can't be supportive and genuinely mean it, don't bother. Don't tell me what has worked for you (unless you have gone thru these treatments). A very nice acquaintance recently contacted me via e-mail. She went thru chemo for breast cancer several years ago and has already mentioned some good things to me.

The septic-system guy told her that someone undergoing chemo can "kill" a septic system. Huh. Poison for me, poison for someone's septic system when I visit 'em. If it was warm outside, I would volunteer to pee outside. But it isn't, so I won't.

Every time I brush my hair, or wash or comb it, or dig it out of the collar of my winter jacket, I remind myself that I won't be doing this much longer. And I am sad. Hair is so much of what a woman perceives herself to be. Those who remark that "it's only hair" (said by those who have NOT had this wonderful experience) - you can take a flying (fill in the blank). This is not comforting to tell anyone, and especially not to tell a woman. I will spend the next 6 + months feeling and looking absolutely crummy. Trying to eat when there is no appetite, trying to sleep when I am absolutely exhausted yet too miserable to nap, trying to keep warm when my body weight is still not that great, trying to avoid infections (yeah, no one ever coughs or sneezes in this wintry area), trying to get things done when the energy level is down.

My friend (who lives in Texas' Hill Country) told me that Robin Roberts (an ABC news person) merrily went about her "usual" life while dealing with breast cancer. And this friend told me that she discovered that Ms. Roberts was able to do this because she could afford a drug that costs $6,000 dollars and which really beefs up ones energy level. My friend was not that fortunate. Finally, towards the end of her treatment and with her blood counts very, VERY low, she had this drug and realized how nice it would have been, if she could have afforded it all along. There is no justice, no mercy, no equality, where cancer is concerned.

I have some photos of myself with hair. I had them taken, so that I can go into the hairdresser with my wig (delivery next week) and have it trimmed into a reasonable resemblance of my "old" look. When my head is shaved (probably the week after next), I hope to be able to be brave enough to have photos taken and to post them, too. But no promises.

Well, I have probably written a depressing blog that most will not want to read. But it IS my blog, and for me it is a public journal. My life goes on, but I am no so sure that I want it to. Too tough... I will break soon.

Feeling much better!

At last... an upbeat-sounding post. Betcha thought I was never going to write one again, but you were wro-o-o-n-n-g...

Feeling so, so SO much better. And what a relief. I don't think I ever copped to the fact of just HOW much weight I had (thankfully, only temporarily) gained. But is was 14 pounds, readers! A lotta fluid to pack onto my 5'3" frame. I went into this at 111 pounds and emerged at 125. So you can see just why NOTHING fit me. And this extra weight was from my lower rib cage level into my mid-thighs. Not pretty. I had to quickly pick up some medium-sized sweats, 2 pairs, just to get me through. And even then, they were extremely uncomfortable, because they have tie-string tops, and if they are not cinched up a wee bit, you might be exposing your underlovelies to the general public. And my poor gut was so, SO sore, that even having clothing touching it, was not a pleasant experience.

And that giving up on the painkillers? Not such a good idea. The pain was so bad that it made me nauseous, which brought its own set of unpleasant side effects, like NO appetite. And I knew that I needed to eat, in order to help my body heal. So I went back on the painkillers, sparingly, even slicing some of 'em in half. And that was an improvement, as my appetite returned. Unfortunately, so did that ol' evil side effect, so I resorted to some over-the-counter stuff to relieve that. Ugh. Those things are in and of themselves, evil personified. Caused awful cramps and made me afraid to be too far away from a restroom.

Before I forget, I would like to give credit to a wonderful nurse, J, at the Hermantown clinic, where I have my INR tests performed. (That's a test to ensure that the blood-clotting factor is at an acceptable range, for one who has an artificial heart valve.) She was the one who suggested that the PAIN might be causing my awful nausea, and I do believe she hit the nail on the head. She told me this on Nov. 21st (Monday), and she also gave me the GREAT news on that day, that my INR tests showed that I could discontinue the lovenox shots in my gut, my poor, puffy, super-sensitive gut. A wonderful day, that Monday was!

My abdomen was ultra-sensitive to touch, and I think this might be attributed to some internal healing trying to occur. The skin's surface felt like it would, if I had had a severe burn - like raw, exposed nerve endings. I guess, with everything that was removed plus all the rest that was biopsied and moved, there must be a lot that needs healing. I am happy to report that the feeling is closer to normal, and that says a LOT for me.

Now I still have some awful, awful purple bruising along my right side and heavily down that same thigh. And the left thigh was never quite that purple, although it did have some gravitational bruising down the back of that thigh. Plus the cocyx area (tailbone area) has a large purple bruise which did not show until days and days after surgery. All of this bruising is, no doubt, caused by the blood "thinners" that I have to take. And even though I had to reduce that drug before the surgery, it was still necessary to have some of that in my system, so that I did not have a stroke nor throw a blood clot to my heart or lungs. Modern medicine - ain't it grand?

So I am upright, taking nourishment and going forward. Still have NOT heard any results on the post-operative lab tests, and I guess they will let me know what those say this coming Monday, when I go for my post-surgical follow-up. I can only hope and pray that these results say that everything is okay. But one day at a time, as they say.

A special thanks to my high school friend, P, who gifted me with some EXCELLENT chocolates while I was still in hospital. When my appetite returned, I finally felt like tasting them. They are WONDERFUL, especially the spicy ones!! Love, LOVE, LOVE them! Thanks a bunch.