OK, I haven't been posting much here

But my SSDI hearing will be January 30, 2008, at 1:15 pm. I just got a call from the attorney; I haven't anything in writing yet but stuff is on its way. Info on the hearing, a video on what to expect...Gods, please, let this go well!

19 months since my benefits were denied. The atty told me it would be 18-24 months, so I guess it happened quickly. I'm happy I have a date set -- it would be nice if that meant this ordeal was going to be over, but I can't feel that optimistic yet.

Good energy and good wishes for the right outcome, where I receive a stipend, would be greatly appreciated. It would also take care of my insurance dilemma at least partially, as I would be on Medicare with some Part B addition to pay for my meds. I guess I need to start researching that soon. Any advice or input welcome.

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On the crochet front, I've been working on gifts -- a scarf for the Worlds Best Teacher, a hat and wrist warmers for a friend, and a black (of course) shrug for the Gothling. I will try to get some crochet pictures posted; maybe even put some recent family photos on Flickr. I'm trying to get some school photos out for the family for the holidays; I hope everyone can live with the fact she has dark blue hair! She loved it. It's finally starting to fade out; that color lasted a long time.

Events upcoming

Halloween is tomorrow, and The Sprog is terrifically excited. Me, I'm looking forward to Thursday, because I get to go to The Lamb Shoppe early Thursday evening, and meet Kim Werker of Crochet Me and get a copy of her new book, Crochet Me: Designs to Fuel the Crochet Revolution. I was told to bring my hook and yarn; I'm working on a fairly intricate scarf using one of my wooden hooks, so I'll bring that. Hanging out and crocheting with other crocheters. What fun!

This is shaping up to be a busy month with all sorts of different events turning up from all over. I need to remember not to overextend, but I plan to enjoy it.

Halloween Crochet!

Felted skulls and a bag shaped like a cauldron. The cauldron was a 2 dimensional pattern, but I crocheted a circle for the bottom and turned it into a 3D piece, though that's not easy to see in the photos.










I'm at a science fiction convention -- MileHiCon -- this weekend; I'm hoping to post more crochet soon. I've got the photos -- it's just getting tem up on the Net and available!

While I'm talking about conventions, Dear Santa, please send me tickets for the whole family to Denvention 3, the World Science Fiction Convention here in Denver next year. I last went to a WorldCon in 1976 -- 32 years ago! We're working like crazy to come up with the fundage; but frankly, it may take my actually getting disability with "back pay" to be able to swing it. I'll keep working on it, though. It's been a really long time.

Fall apparently makes me craft-y

Michael's craft store is having a big sale this week. I bought several little ovensafe stoneware type loaf pans for a buck apiece, and they are now in various spots in the house holding collections of little things that get up and wander off. I got some wooden cutouts for Alyria to color, and did save out one pumpkin for myself. I also got a couple of inexpensive terra-cotta jack-o-lanterns, and a 6 pack of flickering LED tealights. I put one of those in the smaller pumpkin, but I did get a small pillar candle on sale for a buck for the bigger, $2 pumpkin. For a person that can't wear autumn colors, I do love to add them to the decor! I passed on the half-price craft pumpkins and a carving tool for them, though it was mighty tempting. I may go back to get a couple and the tool, since we tend to have rotten luck with actual field pumpkins. Hmm...that idea has merit. Need to run it past the family unit.

I also need to get a ball of Bernat Soft Boucle yarn to swatch with. I think I've settled on it for a hoodie for me and for Alyria, but before I commit to bunches of yarn, I really need to try it out to see how it works up and how it feels. The yarn in a ball feels great, and I think it will be fine, but this garment will be more challenging than what I've made before. Then there's the hoodie dress I have my eye on in Crochet! magazine. I have a yarn that might work, and I have enough of it, I think. That's a big project, though -- and will probably require purchase of a slip. It's on the list, just not at the top! The jacket on the cover is pretty nice, too.

I picked up a copy of Positively Crochet!and I love it! Lots of patterns to choose from, a wide variety of sizes, and projects that even appeal to the Gothling, with appropriate color changes, of course. Most pattern books contain between 10 and 25 patterns; this one has a full 50 to choose from, as well as words of encouragement on every page. I highly recommend it to any crocheter.

Holiday and blog plans

My folks were here for the long weekend, and we spent the whole time with them. It was lovely, though I am in pain now from sitting in my chair so long. I did ask to lie on their hotel bed to talk to Mom yesterday, and that helped. I'm afraid I'm going to be sore for a few days. Hubby kept telling me that they'd understand my limitations, and I'm sure they did, but I know I was frustrated with how little time I could spend with them.

We spent most of the weekend talking, which was wonderful. the sprog, being 13, got bored and wandered around the hotel a lot; on Monday we brought our digital camera and she took lots and lots of photographs. She's been talking about an interest in photography, and she did have some nicely composed pictures. On Sunday, we went to see Mr. Bean's Holiday, and I assure you that is worth its own entry soon, when I have the time. Short review: Don't. I had my suspicions ahead of time, but that was what my folks picked. Hubby and I walked out about half an hour into the movie.

The conversation was wonderful, and I sent a pink ribbon back for both my mom and sister, who had been very supportive during my cancer treatment. It isn't much, but I'm happy I can at least give them a token of appreciation. We went to dinner Monday night, then parted ways, and my parents are well on the road back to Lenexa, KS at this time. Alyria and I both cried after we said our goodbyes; we hadn't seen them in some time and while we were tired from the excitement (we're homebodies most of the time any more), we weren't ready for them to leave.

I'm hoping to have some crochet posts up this week, and also want to put some recipes on my blog. I'll post recipes that I can make without hurting myself, so they are relatively simple but yummy dishes. I'm hoping to turn this blog into a more creative space and less of a health issues space, though of course the health issues are integral to my life and will remain an important part of the blog as well.

crochet, and doctor stuff.

First, Hubby is employed! He starts the first job of his new career at 6 a.m. Monday morning! Whee! He's pretty wiped from the stress; we're both terrifically relieved that he has a job with a reasonable hourly rate, and a promise of a review and a raise after 30 days. I'm very proud of him; he's worked really hard in school and then in job hunting to make this possible.

I've just finished up the chemo caps and thongs for my friend. We have piccies, but I want to wait until she sees it first. Finally, I'm crocheting enough to warrant recording it!

I splurged and stopped at Barnes and Noble and picked up Crochet! Magazine today. I've gotten a few pages in, and am definitely enjoying it. I do need to re-up with the Crochet Guild of America again when our wallets ease up. I'm really enjoying crocheting again, after nearly a year off. It feels good to be making things again. I'm working on some market bags and a capelet for my daughter -- the market bags are easy, so I'm working on them for fun and on her capelet for beauty.

This is roughly the 3 month (plus a little) anniversary monthiversary(?) of my mastectomy, and thus I have seen the surgeon and the oncologist. I've skipped a month's menses, but as long as I'm not having odd bleeding, that isn't an issue. And I'm at that certain age anyway. The addition of the Tamoxifen has increased the severity of my hot flashes, which is good, according to the onco. It may well be involved in the irregularity of my menses, too. I did go through some PMS type stuff a couple of weeks ago -- got really hungry and craving chocolate, but it went away without, erm, issue.

The onco poked and prodded me in various places, including a clinical breast exam on the remaining one, and felt lots of different lymph node locations. He told me everything looked good. The surgeon didn't examine me this time, but plans to in three months, when I will also see the oncologist again. After that, I think it goes down to every six months for both doctors. The plan is for me to have my next mammogram next April, on schedule, and six months after that have an MRI. If the surgeon has her way, I guess I'll be going in alternating every six months for a mammogram and an MRI; if my size stays down where I am or less, that won't be a major issue, though lying on a table with holes cut in it for my breasts to hang through for a good picture is far from a comfortable position.

The surgeon, after checking me over, started to leave, then stopped. She said something like "I really appreciate your positive attitude. You haven't let this stop you or change what you are doing." A bit confused, I said, "Well, the chair really changed more of what I was doing. You told me I was disease free, so I didn't change much after I healed." She replied, "Oh, you are. But you continue to go forward, and plan, and go out and get things done. That's a nice change for me to see from a lot of my patients."

That surprised me; I'm not inclined to think of myself as Little Miss Sunshine. (Although Catherine once called me Pollyanna. A long time ago.) But she was quite definite that my cheerfulness was a welcome relief. I went home and talked to the husband, and his reaction was "Think about who she must deal with every day. It sounds like a lot of them have given up." Most of her patients are cancer patients, but with all the stuff I'd read about a positive attitude helping (although there are studies that say it doesn't really -- it still makes life more pleasant than moping) I didn't expect to be such a shining example, I guess. Plus, I'm told that this incident, while increasing my risk of recurrence, has not itself shortened my life. That feels like a gift, for sure.

So maybe I should become a motivational speaker. Wonder how you do that, and if there is some kind of an agency like a modeling agency for such a thing. That I could probably do for a living, as it's within my limitations.

I also finally pulled together the documentation on my cancer diagnosis and surgery to send to my disability attorney. In addition to that sheaf of papers, I added a form that Health and Human Services asked for from my doctor attesting that I was in fact permanently disabled and not able to work (or stand). I'm hoping against the odds that form might actually circumvent the hearing process and get me administrative adjudication, but I'm not holding my breath for it. On the other hand, this form should be sufficient for me to get my ID as a disabled passenger from the bus company. No one argues when I pay the discount fare from my chair, but the rules do say I need to have that ID -- and now I have a form that they should accept. That means a trip downtown is in my future. I think I'll wait till I have a bit of cash handy so I can at least play a wee bit.

Musings on paper, pens, and creativity

I have a fascination for blank books. My nicest one I haven't written in; although I suspect the beautiful leather covers a replaceable book and I should. use the book. It has completely blank pages, and I hesitate to mark them up with mediocre sketches and ragged looking writing. However, I noticed that the blank books I like to actually use contain grid, graph, or quadrille paper (same thing, name depends on your region, I suspect). I write in all caps most of the time because I spent so long as a programmer, and the graph paper resembles the coding sheets I used to use back in the dark ages when I wrote programs, then transcribed them onto punch cards. With graph paper, I don't put one letter per block, but I do prefer it for writing, I guess so I can make columns. I also like to doodle within the confines of the graphs. I have pads of paper with the graphs on it as well; Levenger, the really expensive "store for writers and readers", has paper with all three formats, and I got the graph version.

I don't write much except while typing; I type at about 60 wpm and it's faster and easier for me to write on a keyboard than on paper. So with paper, I mostly make lists, or jot down random thoughts and things I want to follow up on later. URLs, places that I want to research, that sort of thing. But as much a child of the electronic age as I am, I still like to have paper and pen around; in fact, though I'm not using them at the moment, I want to start carrying and using my fountain pens again. They've been languishing in my desk since I stopped working; I think it's time to take them out and start using them -- there's a definite pleasure to writing with a fountain pen that can't be matched by the gel pens that I use most of the time for check writing and filling out forms. Heh -- fountain pens require heavier paper, too, like the stuff I have from Levenger's. That's undoubtedly part of the pleasure in writing with a fountain pen; higher quality paper. The only time I want to use a pencil is if I'm doing math with the kiddo or sketching something, and I don't like my sketching well enough to do it often. I'd even rather doodle in ink -- though I do like colored pens for doodling. I also prefer a fine-tip pen, whether it's a ball point pen, a marker type, or a fountain pen.

The Squirt likes ruled paper, even though most of what she does is drawing. I know my friend Holly always carries at least one book with blank paper in it for her drawing and sketching pleasure. She will carry pencils and colored pencils or markers to draw things when she decides she wants to have paper around. She really loves the 0.7 mm disposable pencils that you can get fairly cheaply; she's hard on her tools (like her mom, I'm afraid) and these are durable enough to last through most of their lead before they get mangled. I prefer a 0.5 pencil, but at the moment, all I have are the disposable ones because stuff gets misplaced. I'll have to get some 0.5 lead and a pencil or two from the local pen and paper store in the next few months.

What paper do you like to use? Onionskin, copy paper, homemade, heavy stock? Do you like it blank, ruled, or graph paper? What do you like to use to write and/or draw? Do you like ballpoint pens, rapidograph, gel pens, pencils? How do you use your paper and pen/pencil? Do you enjoy the experience? I'm realizing as I write this that I do enjoy actually writing, though it can be hard on my hands. Definitely time for me to clean up and start using the fountain pens more.

On another note, I finally finished a shawl I've had hanging fire for a friend for over a year. I didn't get it done in time for her to take it with her this week to go up into the mountains, but I'm pleased it is done. I'll have pictures when she picks it up; it will look much better on her, as autumn colors suit her and this is a deep gold that made me think of her the instant I saw the yarn. I'm working on a couple of small things at the moment; when those are done I'll start on a Gothic style cape of black and hot pink for the sprog to wear. With some luck and persistence, I can get back into being productive on my crocheting again, and can actually put my other blog back into use as a cooking and crochet blog instead of just a chronicle of my ills.

Bogus!!!

I got a bogus warning on my front door today announcing that a sex offender had moved in to the neighborhood. This is a scam, and they want you to subscribe to their website to get the information. All that information is available for free on the county website; I've already shown the pictures of the two close to my home to the sprog so she's aware, and this is a classic case of marketing by FUD -- Fear, Uncertainty, and Doubt. The folks who run the website at www dot neighborhoodredalert dot com (I will not link to such a dishonorable company) hope to frighten folks into logging onto their website and paying their monthly subscription fee to access (probably outdated) information that is widely available for free on the Web through local law enforcement everywhere.

Spread the word. Don't give these people any of your money; they're dishonestly trying to scare you into subscribing.

This is a relief...

I can has a life, and not spend it worrying about my attitude and diet!

http://junkfoodscience.blogspot.com/2007/07/magical-fruits-and-vegetables-does.html

The tyranny of assigning blame based on food or life choices is debunked.

I'll eat plenty of fruits and vegetables; I like them. But my size, my food choices, and my temperament don't affect my survival. (It doesn't for non-cancer related issues either -- read back a ways if you are interested. Most of the food police nonsense is utterly unjustified and fat does not mean early mortality.)

And I lost a total of 85 pounds since my Acute Renal Failure in October. I did it with a change in appetite after my illness, not through obsessing over food or counting calories. I'd come off of Remeron, which causes weight gain, and several other meds that were not working for pain control. I suspect that's what is most responsible for the weight loss; not being on appetite-stimulating drugs. My weight has stablized at what is still a "high weight;" but I move better, I feel better, and with the movement limitation imposed by my pain, I'm pretty satisfied with where I am right now.

*Breathes sigh of relief.* I'd much rather focus on living than on surviving.

I highly recommend this blog, by the way. And the "I can has" reference? Check out I Can Has Cheezburger!

Personality profile

There are three other profiles to take there; I will probably take them soon as well.

Update

I've been kind of out of it for a couple of days.

My pain has been very high for about a week. My pain level has been between 7 and 9 when I try to move much; even sitting up raises the pain level; but Gods, it is boring lying down all the time. My lower back/top of the pelvis, where most of the damage is, has been spasming any time I move or sit up. Less than fun, and I have no idea what to do to make it better.

The Tamoxifen is starting to affect me. A couple of nights ago I could not get to sleep. Between the hot flashes, the agitation, and my skin crawling, I got to sleep about 5:30 Thursday morning, and slept very poorly thereafter. I still woke up around 10, but I was very very tired. When Housemate came home after work, I told him I was terribly tired, and started to cry. This isn't normal for me. I gave up on making dinner and lay down; I managed to nap for an hour or so till Hubby got home from his evening class. Once I woke and then tried to go back to sleep, I had the same problem again; awake and unable to settle. I'd doze off while reading on the computer, then when I tried to sleep would be wide awake. Again with the hot flashes, agitation, and crawling skin. I made it to sleep a bit after 3, and again woke at 10. At least once I got to sleep last night, my sleep was restful and restorative; there just wasn't enough of it. Again today I've been tired and weepy, but not as badly as Thursday.

I called the oncologist yesterday after I woke. Got a call back from the nurse. Apparently the first med they prescribe for bad hot flashes is Clonidine, which I already take to control my blood pressure. So the nurse had to talk to the onco for another prescription. I'd asked her to call me before calling in a scrip, and she didn't call back till today. Then she called after office hours, and the kid accidentally dropped the call when trying to get it to me. The nurse called back, and it went straight to voice mail. Once I realized that and listened to the message, the nurse said that the oncologist wanted to prescribe Bellespa, but my pharmacy doesn't carry it. She said I needed to find a pharmacy that carries it.

One, that ain't my damn job. To be honest, I'm not sure a pharmacy would tell me if they stock a drug like that -- it sounds pretty potent. Two, I'm a chronic pain patient. I cannot be getting my prescriptions from more than one pharmacy. Third, my cursory research showed that the drug, which is an ergot/belladonna/phenobarbital medication, is contraindicated for most human conditions and many of my other meds. After reading through the monograph on the stuff, I think the hot flashes will be more bearable than the drug. It is indicated for migraines and hot flashes. The nurse had looked at my current medications, but wasn't concerned with most of them, and with the contraindications on this drug, I think that was an error. I can't say I'm particularly pleased at the moment.

On the other hand, she told me I could take cohosh. It may be next month before I can buy it; I need to check local prices, but it is all right for me to take. I understand black cohosh is the preferred one for menopause. The nurse did say "it's just an herb," and didn't know that it would be effective. It also doesn't have two pages of contraindications with it. And based on the price at that link, I should be able to find it affordably here in town.

So Monday, rather than telling the nurse which pharmacy they can call the prescription in to, I'll be detailing my concerns with the medication and having to find another pharmacy, and probably telling them to go hang and just taking herbals. At least herbals don't have common side effects of drowsiness (I'm already tired all the darned time), dry mouth, and constipation (both side effects of my pain meds as well; I don't want to bind up completely and I'd like to continue to be able to talk), and contraindications to most everything else I take, including those essential pain meds. I suspect any other med they come up with will be similarly flawed, so I'm working on getting used to the hot flashes.

I don't think the family grasps how badly I feel right now. It's kinda hard for them to tell when I'm usually in pain anyway, so I suspect it's not obvious to them that at the moment I'm bloody miserable, compared to my usual level of pain and discomfort. I don't want to stand up on a soapbox and announce how I feel, but it would be nice if they could read my mind and tell that I'm feeling worse than usual. I know that's not reasonable, but that's how I feel. Why can't they tell I'm in bad shape without a large-print sign or a monologue? Of course, if they tried to coddle me, I'd probably hate that too. One of the perils of feeling less than spiffy.


On the more interesting side, the sprog has announced that she wants to try out for sports. I've scheduled her for a sports physical next week, so she'll be good to go for the school year.

Hubby has passed the last class he'll be taking before starting employment -- he has a few more days in class, and will be sending out resumes and starting to interview next week. This weekend, I'll assist in working on some documentation he needs to finish and helping him on his resume.

He is attending a welding inspection class through the AWS (American Welding Society), which will give him valuable contacts, knowledge, and manuals. That's the week after next. He's planning to find a company that will work with him to allow him to finish the 22 days of classes he has left in order to get his advanced welding certificate. As hard as welders, especially good ones, are to find, I suspect he will find an employer to work with him. Of course, with me, he has to make sure the company has decent health insurance -- so he has several factors to consider in choosing his next job. We're all looking forward to getting back to a more normal life.

Good Boob News!

I have my prosthesis, and I think my back likes having the weight back. It has its own box where it is to rest when I am not wearing it, but I'm supposed to wear it when I'm awake and up. So I have it on now, leaning but not lying in bed, and it feels pretty comfortable.

The second bit of news is that my genetic testing came back negative. I do not carry either of the defective genes they know and can check for. That means no need for prophylactic surgery, and though my daughter will need to start mammograms early, her risk is not as great as it could have been. My sister and mother need to keep up their screenings, but they already know that and do so. Whew.

Heat and hot flashes

It's been pretty darned hot here -- we've broken the heat record with three digit temperatures several times. And July and August are typically hotter than June. Sunday and Monday were 100 or so, and yesterday hit a high of 95. We have an air conditioned house, but the kitchen is poorly ventilated and the a/c can only do so much.

I've also been dealing with hot flashes since Friday -- big ones that leave me feeling nauseated. Heat plus hot flashes is definitely not fun. The hot flashes are definitely worse now than they have been; I do think that it's the Tamoxifen.

So last night after 11 pm, it was finally cool enough to deal with the kitchen. We turned on a fan in the dining area and pointed it into the tiny, narrow kitchen space. I proceed to slice carrots, break apart broccoli florets, slice green onions, make a balsamic vinaigrette, cook tortellini and spaghetti, and make a tortellini balsamic salad and a peanut noodle salad. I enlisted Hubby's assistance to mix up the salads, and at the end of the second pasta salad, I rather stopped functioning. Fortunately, despite the hour, Hubby was still up, and he stirred the peanut noodle salad up while I wilted. I slunk out of the extremely hot kitchen, feeling rather unhappy that I hadn't been able to finish the second salad.

Then I realized that in the space of an hour, I'd essentially made two full meals. I let Hubby put the second salad away and came back in here and laid down in front of the a/c vent and relaxed.

And I don't have to cook today or tomorrow -- Doug is supposed to avoid cheese, hence the peanut noodle salad. Everything should be chilled and ready to eat today.

What's important to you in a computer?

Because Gods above, the most important thing to me when I am looking for one is that the case be pink.

This is one of the most egregious, anti-feminist and anti-female products I have seen in years. The last one that raised my hackles like this was before I was married, and was called something like "HER Tool Kit." It was cheap, contained poor quality tools, and had pink handles on those cheap tools. You could even get a pink garden hose. This is, I think, worse. The ad showed two women admiring the computer, one in a shirt that matched the case. I'm offended enough that I don't think I will buy another Fujitsu computer in my life. And while my current laptop is an HP, the previous one was a Fujitsu. None of my future ones will be, however.

We got to see the Space Station!

The International Space Station (ISS) rose in the West at 9:32 MDT, and processed across the sky for 3 minutes. I missed the very beginning and ending, as I was in my chair, so the trees obscured my view more than the rest of the family. If you live near me, you can find when the space station will pass overhead again at this link: http://spaceflight1.nasa.gov/realdata/sightings/cities/view.cgi?country=United_States®ion=Colorado&city=Denver If you live elsewhere, you'll need to adjust the end of the link, or go back up a ways to where you can select your location. The chance to see it actually pried Girlchild away from the TV.

We tried to see the ISS and the shuttle last night, but we had an overcast sky. I'm glad the skies were clear tonight so we could see.

Genetic Counseling

I saw the genetic counselor. I have a 16% chance of having a mutated breast cancer gene, which she termed "moderate risk." If I have one of those genes, I have a 30-50% chance of ovarian cancer, which is a high enough chance to merit prophylactic removal of the ovaries. I'm unlikely to have BRCA1, the 16% is for BRCA2.

I signed the consent form and they took blood. She believes that Medicaid will pay for the genetic testing but we will double check with the lab first, since the testing is over $3K. Assuming that the testing is covered by insurance, I should hear inside three weeks with the results.

Three weeks is a long time to wait on tenterhooks. Thoughts for normal genes and a negative result from the test are welcome.

It never freaking ends.

Latest Doctor visit

I saw the surgeon Friday. She says I'm healing nicely, and the remaining "swelling" is subcutaneous fat, and the lumps will improve over time. If I can't stand it, she can remove my "armpit boob," though it is definitely smaller than when I first saw it and panicked, and should get smaller and redistribute. She explained that had she taken that, too, I would have wound up with a scar going all the way to my back, and that is not a preferred outcome. And the tissue isn't diseased, so there was no real reason to remove it.

I asked if I was "cured," and was informed she doesn't like to use that term. I am "disease free." I see her again in 6 weeks; after that 3 months, and then 6 months after that. I will continue to see her every six months "forever" as I am now at increased risk for cancer. I get to see the oncologist "forever" as well.

I know other folks who have long term relationships with their oncologist. This is par for the course. She said if I got tired of seeing all those doctors, she'd rather I kept the oncologist. I told her that since I'm disabled, I have plenty of time to go to doctors. I guess cancer is forever.

Whee, new purse!

For years I carried heavier and heavier purses. With the back pain, that became more than a little problematic. So last year, I switched to a backpack, which I could hang over the back of the manual wheelchair. When I switched to the power chair, the chair back was too thick, making me either hunch over or lean against a partially filled backpack. So I switched to a flatter shoulder bag, which was designed to go on the back, but I could wear on the front. As the weather got warmer, the large black shoulder bag was getting cumbersome and overly warm.

We'd gotten the girlchild a cute little waist pack (aka fanny pack in the US, I know it means other things in other countries) for her birthday with skulls on it. Unfortunately, it was a $5 bag, and the stitching failed after a few weeks. So I went to beltoutlet.com, the same place I'd bought my shoulder pack, and ordered her and I each a fanny pack. They're both black leather; mine is a bit larger than hers, and hers came with a water bottle. She's thrilled with her pack, as she won't use a purse, and loves having the water bottle carrier on it. I switched to my new waist pack, too. It held my big billfold, though I did take some of the things in it and stow it in separate smaller pockets in the pack to make the billfold narrower. I'll have to carry my paperback separately, and there are some paperwork things that I can't carry in this pack, but it's small and will be mostly out of my way, which beats the shoulder purse trying to drive my chair.

And swapping purses is always a fun mini-spring cleaning for me. Even if I will spend the next couple of weeks learning where I tucked everything in this purse. There's even a pocket for my bus tickets.

Update

Mental: I'd been seeing a temporary therapist since I got the cancer diagnosis. She's nice, but very formulaic and not someone I really wanted long term. I need someone who seems actually interested in me and my issues to be able to really dig into the old stuff I carry around. So at my last visit, we agreed that I would wait for the new therapist coming on at the mental health center. One should be hired by the end of the month. One of my problems is that when I find someone who understands chronic pain, their own pain gets to them and they have to stop.

I saw the meds NP last week for my usual appointment; He asked what my depression level was on a scale from 1-10. I said 5. He thought that was a terribly high level. I told him I was functional and could accomplish most of what I needed to do, just like when my pain is at a 5. He finally accepted that for me, that was a good level. Honestly, I've had depression for so long I don't know what it would be like to be free of it. I can function and enjoy myself, but I know that the depression is right there, right under the surface. Maybe that makes it a 3 instead of a 5? Those scales are so arbitrary.

Physical: My hair is thinning noticeably, according to my stylist. This was the first time he saw me since before the surgery; I hope the hair recovers somewhat. I am a bit vain about my hair, and if I keep losing it will probably switch to wigs rather than run around with sparse hair. I'm fairly well healed from the surgery at this point. I see the surgeon Friday, and expect to have a prosthesis prescription when I leave her office. Bought some bras with pockets, and the pockets are apparently designed for pouring beans into. The pocket starts at the bottom, of course, and is sewn up onto the strap, where there is about a two inch opening. Hard to put a prosthesis in that small a hole! I need to try on the bras, mark any changes, and send them back for adjustment, including a pocket hole big enough for a prosthesis. I'll probably end up with about 2/3 of the cup having a pocket on the back, which should work.

As I mentioned when I started the drug, I started Tamoxifen at the end of Memorial Day weekend. I have had more hot flashes than before since, and skipped the next period with spotting. Since I'm at that point in perimenopause, I don't know exactly why I skipped; I'm going to ask for hormonal blood tests to see if I am still fertile when I see the GP next week. I rather hope not; it just means hassling with b/c, since I don't think I'm up to bearing another child.

My pain pretty much plods on at the same levels. I wish I could walk. Alyria and I did get summer rec center passes which give us access to the pool; the gimp rate for the summer was pretty decent. I can "walk" to the pool from home, and with a pass, can take just the time I need while I'm there. Now, to get the urge to swim on a day when the pool is available -- today is rainy and cool. Pleasant enough, but not for swimming.

We need new beds. Our bed is just tired and needs replacing. I'm really leaning toward the Sleep Number bed; my folks have one and like it, and the adjustability sounds quite appealing. The kiddo is complaining about her bed -- she has a bunk set and now wants a double bed. I told her that once her Dad is working, we would put it on the list, and in the meantime, I would look for an Aerobed on sale to replace her mattress. We bought her bunk bed set used when she was 4 or 5, so yeah, the mattresses are probably about done. All of us get to wait a while yet, though. The worst part about our bed is that Doug thrashes about at night, and that can cause me pain depending on my position. If I'm not flat and solid on my back, I can feel it quite clearly. There are nights while I'm still up and on the computer and he's not sleeping well when he'll change position, and I will have to bite back a yelp so I don't wake him. Hardly an ideal situation.

SSDI is, of course, still up in the air. I will write a note to take to my doctor asking for the full rundown on my back; all diagnoses and the chronic intractable pain diagnosis, and will send that to the attorney in faint hopes of an administrative decision. Doubt it, but I'll try.

Hubby is getting more involved with the American Welding Society, and is enjoying that. He will finish what he can of school in July, start looking for work, go to an AWS class for a week, and then go to work. He plans to find an employer that will allow him to go back and finish his last few classes during the day at some point so he can get his advanced certificate. We're hopeful he can find a decent-paying job with insurance starting right away; I'm expensive to keep without insurance.

I got to go to the zoo for a few hours on Sunday. Regrettably, it wiped Hubby out. I made him promise not to go out with me, even if I'm cabin crazy, if it will impact him the next morning getting to school or work. Going out helped my mood some; I'm still irritable and cranky.

Strange Anatomy

Nerves are funny.

So, my scar on my chest is healing pretty well, but sometimes it feels tight. So when it tightens up (doesn't restrict my arm movement, just feels tight across the chest) I try massaging it.

Now, that's a weird feeling.

Many nerves were cut and destroyed as part of the surgery. I have numb spots on my chest, in my armpit, and even bits of my back on the left side. So I expected it to be mostly numb, but thought I could ease the muscle tension. It's weirder than that, though. When I rub my chest over the scar, my hand can tell I'm on a flat chest. My skin, however, reports that I'm rubbing skin a fair distance from the chest wall and at an angle.

I wonder how long it will take to adjust to this. By which I mean the skin adjusting to report I'm rubbing my chest rather than the top of my breast. It's not bothersome, just odd.

Detachable organs

I made it back to the Open Full Moon this Friday. I'd put a blurb in the newsletter that I would be there after my surgery, and a few extra folk came out to see me. I was told repeatedly I looked great, and I did feel pretty good.

Anyway, at the beginning of the meeting, before the presenters for the month do their ritual, Catherine (the VP of the church of which I'm president) and I make general welcome announcements and the like. This time, I started out by telling people that I was back, and better, and still looked pretty much the same, except that part of me was detachable! I then pulled my fiberfill prosthesis out, and plopped it in my lap (I was in my wheelchair.) The whole room cracked up, and it definitely eased the tension. I couldn't easily stuff it back in while in the center, so I kept it on my lap as we made our usual announcements. When we asked for donations, Mari (dear friend of the family and former covenmate) ran up and tucked her donation in the empty bra pocket.

In retaliation, while going round the circle and asking everyone if they had announcements, I plopped the fake breast in her lap. (This one is a lightweight, fiberfilled one for just post-surgery, before I get the heavier prosthesis actually reasonably fit to me.) She picked it up, and announced it had rocks in it. I said yes, that way it doesn't float up to my neck. She suggested we put a squeaker in the fiber. Hubby likes the idea -- we may well do it for MileHiCon. I retrieved my breast and finished the walk round the circle.

Right at the end, Hearthstone's treasurer and her husband were sitting, and she started telling me to give the breast to her husband. I took one look at him, and the poor man was horrified! So I said that I'd known Mari for a lot of years and that I didn't think I knew her husband well enough to hand him my breast. The whole thing was done in silly and good-humored fashion, and as a result, no one treated me like I was either fragile or contagious, which was a major relief. I don't fancy being treated as either.

Argh...

Gotta do something about those sleep habits. I'm up way too late railing at the Universe, and then when I go to sleep, I have nightmares, and continue to have them all night.

The first one last night was about boiling bats into a stew, and the only bats I see on TV are with Jeff Corwin, who wouldn't stew the bats, he'd cuddle them first.

The last one was about working, in the job I used to have for some software company, crammed in a decrepit two-story mobile home (yes, I know they don't have two stories. My subconscious doesn't.) with everyone else working on the team, and the last thing I remember before the kiddo woke me was discovering that most of us were working for free. Desperate much?

Tamoxifen

The latest study I can find on Medline has this set of statistics:

For women who had a mastectomy, post treatment of A provided recurrence of cancer results of B:

Treatment: Rate of Recurrence:
No Systemic treatment_____________________12.6%
Chemotherapy Alone________________________5.6%
Tamoxifen Alone___________________________4.6%
Chemo & Tamoxifen_________________________5.3%

I'm starting the Tamoxifen tonight.

Cancer stuff

I may have to construct a picture with a single blue footed booby on it, mourning the fact that it's all alone...


I got the results of my blood test, and yes, my body has the enzyme to utilize Tamoxifen. The side effects are pretty ugly and scary, though, although their chances are low. If it happens to me, though, the odds are irrelevant.

I've been digging through Medline, and there's one recent study that shows that in that one study, the chances of recurrence after mastectomy are significantly lower than with radiation therapy or nothing. However, most of the info is on lumpectomies, not mastectomies. I found a study just a year older that said that the benefit to risk ratio makes the use of Tamoxifen iffy. On the other hand, my DCIS was grade three. On the gripping hand, the mastectomy is supposed to be a 98-99% cure; the Tamoxifen is to reduce the risk of developing cancer in my remaining breast. Supposedly, the risk is 5 to 10% without the Tamoxifen, and about 5% without.

Hence my dilemma. I'm leaning towards taking the drug, but that increased chance of uterine cancer, though less than the chance of recurrence of breast cancer, scares me. If I can't come to a decision, I'll wait to take the pills till I can call the oncologist on Tuesday. It really feels like a catch-22 situation right now. Argh. Heavy decisions.

Another passage.

Today is our 15th wedding anniversary. We've certainly been put through our paces in the past few years. We've been through a hell of a lot together. I can't think of anyone better to go through the fires with me. We've supported each other through sickness and poverty -- now for some health and wealth in our future. I love you, sweetheart.

Time passes

The Sprog turned 13 on Sunday. I am now mother to a teenager. "Look on my Works, ye Mighty, and despair!" She did well for herself -- family sent her money; we gave her a season pass to Elitch's, a gym membership, a fanny pack with skulls on it that stirred delight in her Goth heart, and a sketchpad. The Housemate is threatening her with a frilly white dress with pink polka dots and lots of lace. Her Dad told her "Just five more years!" I'd love to pay her way through college, but it looks like she's going to need additional help, which we may be able to get from a grant to the Denver school district.

We were planning on having supper on Saturday at a favorite buffet place with extended (OK, adopted -- the girls are her godsisters) family, but they got stuck in the Colorado Springs area with car trouble. So we implemented Plan B, and on Sunday, we took her and two friends to that restaurant, and let the girls have their own table. They really, really enjoyed themselves.

It's Off!

The mastectomy bra and compression stuff is off. Feels strange. My silhouette has gotten stranger, now that there is no cloth or gauze in place. I do have a soft, light pillow to restore my shape for going out. Right now I'm getting used to being able to breathe again after 3 1/2 weeks in a bra two sizes too small. I figure the dent in my ribs will fill out sometime tomorrow.

The thing hooked sturdily in the front. Eleven hooks worth of sturdy. Ah, breathing!

My nails are terribly soft and tearable -- they're almost all down as short as possible, and one nail has torn into the quick.  Any suggestions?

I'm looking for a grown-up coloring book (I have colored pencils and lots of time) with mythical creatures.  Any leads greatly appreciated.

Other than that, my therapist says I'm entitled to freak out and get upset and that doing so is better than bottling it.  Since most of my freaks take less than 10 minutes, that's not bad.

Sleepy again; I must have left the house today. :^P

And now for something completely different.

For map aficionados like me, a map blog, strangemaps. Political, geographical, satirical, and just plain strange.

I got the drain taken out today. I've had a plastic tube hanging out of my left side for a little over three weeks. The normal amount of time the drain stays in is two weeks, but for some reason (lower body not working so hot...) I use my arms more than most people, so I kept the drain longer. This caused a couple of minor complications, as my flesh had attached to the suture and to the drain. It didn't hurt, exactly; it was just uncomfortable. There was a pull to removing the stitch, as the skin had bonded to it. The part of the drain inside my body was a tube with holes in it to take in the fluid. I had about 8" of the drain inside; as the PA said, larger breasted women need more length in the drain. It felt rather like one of those cheap bead chains being pulled out. I didn't watch -- I've learned that's the best idea.

So I have a hole in my side and a new bandage -- I get to take it off and shower tomorrow after 24 hours, which works for me. Then 24 hours after that, I can take the evil mastectomy bra off! Yay!!!! I was going to throw it away, but I've discovered that I get a bit sore, so I'll keep it and the towels I'm using for compression for a while before disposing of the darned thing. The PA told me she has patients who insist the bra is too tight (It is; it's about 4" too small in the chest, but that's because it's there to provide compression); and other patients who love it for its "support" and want to buy another one. It has some similarity to a minimizer; it's deliberately tight and presses into the breasts, and the mastectomy side is filled with gauze or towels or other cloth to provide compression. She said the things are $80 bucks. Ugh. It's no secret I hate this one, but I don't have much longer to wear it, thank goodness.

And in two weeks I can have baths and I can swim. My swimsuit will look a little strange, but I am really looking forward to getting in the water and moving around; sleeping and taking the chair places are hardly exercise, even if traveling in the chair is wearing.

Oh yeah, I've started going to the various doctors by myself. Since I'm not driving, it's handy that both I and my doctors are a few blocks off of Colorado Blvd. Hubby built a ramp, and the chair usually stays in the house. (Today, we had the chair in the car, as he went to the doctor's with me for the drain removal.) Monday I went to my GP, who I have to see monthly for my pain meds, and Friday I will be going to therapy. But it's a single bus ride, and all the busses have wheelchair lifts or ramps, so while it takes a little longer, I don't have gas or parking to pay, and gimps get a discounted fare. Plus, I don't have to pull Hubby out of class, or Housemate out of work. It takes me a little longer by myself, but right now my time is inexpensive, so that's OK; after all, it's taking care of me. And there's several little shops and a grocery close enough for me to get to, so I'm not constantly stuck doing nothing. I do have a faint ache in my chest, but I'm sure that it will pass soon.

This weekend should be busy; the sprog turns 13 on Sunday. That means I will be parenting (ominous music) a teenager. As math would have it, she was born 3 days before our second anniversary, so Hubby and I will celebrate our 15th anniversary on Wednesday. Wow. It seems both longer than that and just a really short time ago at the same time. I don't know if we're doing anything for it; maybe we'll manage enough fundage to go out for pizza or something. My folks got us a zoo membership; anyone local who wants to hit the zoo with us, we can bring an adult each and various and sundry kidtypes. I plan to spend some time at the zoo this year -- we have the pass and I enjoy going there. Need to check the bus schedules; I bet I can go there pretty easily from here once I'm stronger. The zoo is also more-or-less off of Colorado Blvd. The museum is in between the zoo and the road, but it's still reasonably close.

Rambling

Saw the surgeon on Tuesday. Finally have the stamina to post about that. I still have the drain, most likely because I use my arms a lot. Since I need them to get me moved around more than most people, since my legs aren't dependable, that's kind of a given. The surgeon said that she wasn't going to ask me to hold still, but she would remind me that moving would make it worse. So I folded clothes in order to do laundry so we could wash the nasty mastectomy bra -- She said I could take it off long enough to wash it and run it through the dryer, so we did. Still, the drainage was less today, and I'm hoping to be able to have this thing out by Friday or Monday. Then I only have to wear the damn bra and pressure artifacts for another 48 hours. At 48.1 hours, the bra goes into the trash, while I sing "I'm Free" from the rock opera Tommy and gently dance around. Then, most likely, I'll take a nap, since that seems to be a lot of my daily schedule these days. I've been wearing this overly tight binder for way too long. The preop estimate was that I'd wear it for two weeks, and that was over Tuesday.

The armpit boob is partially loose skin from the surgery, plus some fat, plus some swelling. She says that it will go down some in the near future, but will take a year for all the rearranging to take place, and even then I'll have some excess skin there. I have excess skin in several places from losing weight, so that's not too upsetting. I'm quite numb from the chest, under the arm, to the back. That's normal, which I already knew, and will improve but not go away. Whee. I'm to see her in 6 weeks, although I need to remember to make that appointment when it's business hours.

I ordered three bras with pockets from Decent Exposures, so when I've healed enough for a prosthesis, I'll have bras to put it in. DE's bras aren't cheap, but they're custom fit and hand made, and less than the mastectomy bras I can expect to get elsewhere. They have high-quality clothes in all sizes, too. I'll eventually be getting more leggings from them as well, I'm sure.

I took the pampering money I was gifted with (Thanks to all of you!) and bought skin oils, some cocoa butter lotion for use on my scar after it heals up, and some nice soaps (of course -- I'm a sucker for good soap. Althaea as usual, came through with lovely products. And folks were so kind that I was able to go shopping for nice new socks at Sock Dreams, where I got toe socks to wear under my sandals, a couple pair of thigh high socks for fun, and some marvelous big cushy chenille socks that are marvelous for tucking my feet into to warm them up. Very luxurious.

I convinced Hubby that I didn't need to go out for Mother's Day -- the sprog wants to go out for her birthday with family and we don't go out so often that going two weeks in a row is kind of overkill. ( I need to make sure local family can all make it.) I did ask for some Breast Cancer Site pink ribbon doodads, and expect to see them around the weekend. Including a toe ring. I have very fine feet and ankles, and reasonably skinny toes. So while rings are usually not available in pudgy square hand size, my toes are in the "one size fits most" range quite comfortably. And I wear sandals as often as possible, too.

Overdue update

I procrastinated writing for a while. My apologies to those of you watching this space for progress -- I've been healing and dealing and haven't been writing. I still have the drain in my side, which I find terribly annoying. It pinches, and I have to continue to wear this ghastly mastectomy bra while I have it and for 48 hours afterwards. Plus, I can't lean on my left side, which is my preferred position for computer use. When I sit my back hurts and my hips cramp, causing me to lay down. I've been laying down and sleeping a lot -- the Bassets love it. "Oh goody, Mom's sleeping again. We get to snuggle!"

So. I've talked to Reach to Recovery, a group from the American Cancer Society specifically for women who have had mastectomies. That was a nice visit, and they gave me a lightweight boob placemarker that I can wear before I heal enough for a prosthesis. It's made with fiberfill and has safety pins to keep it in place in a bra.

And at some point last week I looked in the mirror after a shower and saw that, to my horror, I was growing a breast under my left arm. Let me start by saying I am a big woman, and I had ample breasts. It was about a G cup. Well, when the left breast was removed, there was swelling under my left arm. It looked to me like about a B-cup tucked under my arm. I cried for hours that night, sure I was going to look like a freak. After I calmed down, I realized there is a bit of a fold of fat there on the other arm, it just hasn't had the breast removed from in front of it. Add to that the fact that I'm swelling and still draining a lot, and looking at other large women who have had mastectomies, the swelling should go away for the most part, and the fat left will probably redistribute over the next several months. I was horrified to see it, but now it looks more normal to me. And the swelling has gone down some.

Saw the oncologist on Friday. Turns out that a full pathology report placed the cancer at Grade 3; it was growing fast enough that there were pockets of necrosis within the small tumors. It was still a Stage 0 cancer, with multiple small tumors, but it was throughout the breast, not just in the front left portion, and growing faster than originally thought. That meant the mastectomy was definitely the right choice, and the surgeon got me really good, wide, clean margins, but it still shook me up to hear it was worse than I though. It's still 98% curable with surgery alone, though. I had to get a blood test to make sure my body can utilize Tamoxifen, although it sounds like it's a pretty good chance that it will work as planned. Once the test is back, I need to record the day I start Tamoxifen for the oncologist. I see him in three months, and see a genetic counselor next month. I suspect that there won't be any real reason for a genetic test. I don't know my cousins well enough to know if they have cancer, nor do they know that I have. I guess I should make an effort to contact my cousins and let them know, but that seems a pretty daunting task, especially since I haven't spoken to any of them in many years. I saw a few of them after Hubby and I got married, but haven't contacted any of them since then.

Tomorrow I see the surgeon. I probably don't get the drain out tomorrow, unfortunately, but she can check the drain site and make sure everything is OK. Maybe I can get a second bra (or permission to take this one off for a few hours to wash it) so I won't be grossed out putting it on. That's about the extent of my hopes for tomorrow's visit; a clean bra.

Prognosis

Ah, Hubby didn't post the outcome of the surgery, sorry those of you on the edge of your seats. The sentinel nodes (4 of them) were clear of cancer, therefore, there was no invasive cancer, it was localized to the left breast only, and the surgery cured me of cancer.

I will, however, be taking Tamoxifen for up to 5 years to help protect my remaining breast. I see the oncologist next week and will probably start the Tamoxifen then. I also need to shop at Puritan's Pride for a multivitamin without soy, and possibly a green food for energy. I will also be adding my Calcium and Vitamin D back in this weekend.

Griping

My mastectomy bra hurts. It's digging into my ribs with a vengeance. I have to keep the left side packed to keep pressure on the incision, for 48 hours after the drain in my chest is removed. The drain is another fun part of this -- There's a drain pulling fluid out of the surgery site. I can't have it removed till I drain less than 25 cc in 24 hours. The last 24 hours collected 130 cc. That's a fun 3 times a day process, where I have to let Hubby strip the drain hose, and he has to try not to tug on the drain.

My pain management isn't great; right now I'm in tears waiting for the Percocet that I just took to start taking the edge off the pain. No pain is a fantasy that I can't even fathom. I can't get comfortable, because my favorite position for surfing the Web is on my left side, which even if my left arm could stand it, would be lying on the damn drain. I mistakenly thought I could cut back on the Percocet today, and just proved myself very wrong by bursting into tears at nothing.

The healing mood swings have started. I've spent today vacillating between happy, standard, and horribly depressed. Gromit has been pretty good at snuggling up to me when I feel lousy. Bridget has even given me Basset lovin's.

I'm glad the surgery is over and done with; I just wish I could sleep through the healing process. Actually, I kind of am; I wake up, and when I shift to a lying position to give my back a break, I usually fall asleep.

On a sillier note, the annoying "Mr. Barky von Schnauzer" commercial for Petsmart that I mostly see on Animal Planet has led to Bridget having the second name of "Howly von Basset." She doesn't answer to that, either. I can't imagine why not. There are several obnoxious ads on TV at the moment.

When I came home from the hospital, I had an Amazon box waiting for me. It contained the first two books in the Dresden File series, and the package was a gift from someone I didn't know. I wrote her a thank-you note, and she said she lurked on one of the lists I subscribe to, and my story had touched her heart. She also said she'd been intimately involved in the mess that is our current medical system and she sympathized with me.

Oh, and when I was in the hospital, due to a room shortage, they put me in a Suite! It's about $600 more a night for a Suite, and is usually occupied by wealthy folk who are having elective (or not so elective) surgery. The floor is staffed better than the regular floor, and instead of hospital cafeteria food, the Suites have their own chef. I asked his name, which seemed to surprise him. He'd give me my food and tell me to "eat up, you deserve it!" He was a total sweetheart. There was an HDTV in the room, a table, a couch that could pull out into a bed, a dressing mirror, and a recliner. I spent a fair portion of Wednesday afternoon and evening, and my waking time on Thursday, in the recliner. It was nice. Not an extra $600 a night nice, but a nifty luxury to be bumped up to.

Ok, the meds are starting to hit, so I'm no longer in tears. I'm just remarkably uncomfortable. But my left arm, while sore and having an odd burning sensation on the back armpit, appears to be in pretty decent shape -- I can lift it and even hold it over my head, though not for long.

Mostly, I'm bleah. But I think it will get better. I hope.

I'm home!

In some pain, but fairly well medicated. Hubby put a headboard on the bed so I could use a pillow chair(very comfy), and I'll doing a lot of resting. Part of me doesn't get why I'm so tired; after all, I'm not the one who did all the work of removing a breast; I just laid there! However, the rational part of me is aware that losing a body part is a trauma that my body has to recover from.

I'll catch up on email, etc. gradually -- I'm posting this note before checking anything. I managed not to react to tape this time, which is a really good thing considering the amount of Tegaderm(TM) that I had on me. I've looked in the mirror with no clothes on, and it does look odd. However, it still looks like me in the mirror. My belly looks pretty big with no breast above it. I'd prefer not to go through that again any time soon, though. It was hard on the whole family. Everyone is starting to relax again, finally, from the stress. The whole family, with the exception of the kiddo, is utterly exhausted.

The kiddo, though, developed a back and neck spasm yesterday, though. Ask me where I think she puts her stress. She'll be needing Physical Therapy; her father will set up some appointments this afternoon.

Nearly time.

Less than 24 hours. I'm working on a quick crocheted wrap to take with me, but don't know if I'll finish it in time. It'll be different, packing for the hospital rather than being admitted through the ER, like I have the last -- ugh -- three times. I slept in this morning, although my sleep was a bit ragged. The waiting is almost over. Now to keep from going crazy for the last day.

Preop visit

I saw the surgeon today for planning and getting ready for surgery. After talking to her, I went to the hospital across the street and had a blood draw, vitals, and an EKG done. Now it's just waiting.

She marked me up so I could see what's going to be done, and says that my build makes the mastectomy easier -- the breast is not tight against the chest wall, but somewhat loose and saggy. She agrees that the right breast and lymph nodes look clean, but still recommends a sentinel node biopsy, which I agreed to. We're really expecting the sentinel node to be clean and the surgery to stay simple.

I can eat soy -- she said "We're doing this surgery so you can enjoy life, not spend the rest of your life on restrictions!" I can start my supplements as soon as the day after surgery. I need to find a new supplement, though, since the multivitamin I have contains soy. I'll probably go with fish oil, a multivitamin, and start up my calcium and vitamin D supplement again. We're thinking about a green food for me but haven't found one we want to try yet -- many of the more comprehensive ones contain one or more things I'm allergic too. (Flax seed, capsicum, pineapple.) I need to electronically preregister tonight online, as well.

I could have an annual breast MRI to check for problems. I think, discussing it with the doctor, that I'll go every three years and get annual mammograms. No one has any clue why I developed breast cancer -- I don't know how old my grandmother was, but the docs have been less interested in her than in my first-degree relatives (mother, sister, daughter).

I have to talk to the anesthesiologist before Tuesday to schedule my pain meds. The surgeon told me today that she doesn't want me to be in pain, but doesn't want to kill me, either, so if I'm in pain, give her some time to fix it. She is going to give me the patient-controlled morphine drip for the first day or so. The hospital room will be a single.

I'm going to ask you wonderful local folks to refrain from visiting me in the hospital. While I'm in there, I'm not going to be up to having visitors; as soon as I'm feeling even somewhat better I'm hoping to leave. Last October I was in for some time while my kidneys repaired themselves; this time I don't expect to be in for long.

Oh, and I'm getting an excuse for the gym so I don't have to pay for a month and a half while I'm in recovery.

The whole family is taking Tuesday off for the surgery. I have to be there at 7:30; will get tracer dye injected at 8:00, and am scheduled for surgery at 12:30. I'm putting together a call list for Hubby to call after I get out of surgery; he'll also update my blogs when he gets home that night.

I lived in a community with my ex that has a reputation for causing cancer. The doctors both said they hadn't heard of that neighborhood, so if it is, it hasn't been marked enough to reach medical notice. Which means there is absolutely no reason for me to develop cancer so relatively young. Yippee skip.

If you wanna...

Presenting the no-obligation button!

If anyone would like to spoil me slightly, I will get pampering goodies from Althaea if I am gifted with fundage. No one should feel obligated, but I thought I'd make it easy if someone wanted to do something.

My sister sent me a few bucks -- she couldn't afford much either. I'm probably going to go to a used book store with the money she gave me to get a good supply of books for when I can't get on the computer comfortably.

Aaaaaaargh. The Cable Internet has been iffy since Sunday. It's been back sporadically and briefly, but keeps crashing back out. I'm writing this Tuesday night; I'll bet it doesn't get posted till sometime Wednesday. (I was right.)

Saw my GP and and the oncologist today. My blood pressure is still up; we tweaked the meds again. The labs run last week came out good, I don't have acidosis. In fact, my A1C is 5.9, which is in the normal range, rather than diabetic. My kidneys are also back to normal -- I intend to treat my kidneys as a bit fragile, but having the numbers back to normal before surgery is really nice.

And the oncologist got my MRI and told me the results. It's clear the left breast has a lot of microcalcifications, but we already knew that. There appears to be no spreading, the right breast is clean, and so are my lymph nodes. This is excellent news. Because of the level of involvement in my left breast, we'll still need to do the sentinel node dissection, but the odds are excellent that there has been no spread of the cancer. We're all breathing a little easier tonight. I'm wiped out from running around to see the doctors. The less pleasant news -- my mom and sister (and kid) now have a first degree relative with breast cancer, which increases their risk of developing it as well. I will also probably take Tamoxifen for five years, since my cancer is 100% Estrogen positive. That's a good thing; Tamoxifen will halve my risk of cancer in the remaining breast. (If I decided to have the other breast removed, I wouldn't need Tamoxifen. However, I don't believe in damaging or removing a healthy organ, so I won't remove the other breast at this time.)

The oncologist talked about a genetic test to see if I have a damaged gene that makes me more susceptible to breast cancer -- BRCA1 and/or BRCA2. Most women with one or both of these genes are Ashkenazi Jews. My heritage isn't from that part of the country. I'm to talk with the office's genetic counselor after surgery to see if the test should be done. Only 17% of the women with the gene do develop breast cancer, and 85% of all women who have breast cancer do not have the gene. If the risk seems high enough, I'll probably do the test for my kid.

I've been reading various brochures. One was about dealing with the emotional stuff associated with cancer. One of the things that said was "Right now, it is all about you." Hubby agrees, and I'm trying to be that way, but it's hard when I'm hanging tough for the family to allow myself to break down.

Which is not to say I haven't broken down. Repeatedly. I just try to wait till everyone else is asleep and sob soundlessly. That makes it at least partially possible to stay together for the rest of the family during the day.

I am tiring more easily. I think it's the emotional burden that is getting to me rather than a physical response to the cancer. This stage of cancer shouldn't be exhausting, which is why I suspect the emotions to be the wearing part of this.

So, with the verdict that the right breast is fine, I'm keeping it. I prefer to leave a healthy organ alone.

Scheduling

Tomorrow, Apr 12:        09:00 med shrink, after GP blood draw to check acidosis possibility (not likely but needs to be checked).
Friday, Apr 13:         14:30 breast MRI to assure cancer is only in left breast.  (probably need films) Founders Building

Tuesday, Apr 17:        12:45 GP for blood pressure check and adjustment if needed to BP meds
                        17:00 oncologist Dr. Paul (bring films) Founders building 4th floor
Thurs, Apr 19   16:00 housemate, kiddo and I hair cut
Friday, Apr 20  12:00 Pre-op with surgeon, Dr. Miller

Tuesday, Apr 24 Surgery in afternoon, check in to hospital in morning for injection of dye for sentinel node biopsy.  Fasting since midnight. Timing details tomorrow.  The sprog's progress report will be mailed out this day as well.
Wednedsay Apr 25        Most likely still in hospital
Thursday, Apr 26        home barring complications.

Some time the next week the drain should come out.  I'll probably have several follow up appointments, but those are kind of "by ear."  If the sentinel node is clean and the MRI shows no additional problems, it will be a simple mastectomy with sentinel node biopsy. 

        
If the MRI shows involvement of the right breast as well, I'll need to reschedule the surgery.  It'll still be in about the same time frame, maybe a couple days delay.  I'm rather counting on the MRI coming back clean.

I'm going to need reading material, so if you're interested, please check my amazon wish list (This is a suggestion, NOT a demand):

(If you get me something without ordering it through the list, please let me know, so I can take it off the list to avoid duplication!)

More medical stuff...

Got a call from the clinic today. My creatinine is 1.1 -- Yay! I think that's actually in the normal range. Religiously drinking more than 1.5 liters of water has paid off.

But two other values were off -- carbon dioxide was high and one other that shot out of my mind. Indicators of some form of acidosis, which could mean kidney failure. Except -- my kidney numbers are better than they've been, I stopped Metformin in February, and so on. No indications in my body to support the indicators in the blood. After talking to the doc, I did some research, then realized something and called him back. When I caught the bus yesterday morning, it was very blustery and cold, and I was quite underdressed, to the point I was shivering. He agrees that could have caused the problem. So today I'm taking it easy and staying warm, and tomorrow when I have another appointment (shrink meds), I'll stop by for a recheck blood draw. The doc and I both expect it to be normal, as soon as we realized I'd shivered yesterday.

Called Y-me, and they matched me with a woman who had DCIS diagnosed at age 47 and had to have a mastectomy. She was very supportive, said I sounded like I had a handle on things and was making the right choices for me. She's a little thing, though, so I've asked for a match if possible to someone with DCIS diagnosis, no reconstruction, who is er, amply endowed so I can ask biomechanical questions. They couldn't match me with another disabled woman who uses a wheelchair there, referred me to another support group, who just called me with two more referrals. I'll chase those another day -- if I spend too long focusing this stuff I get overpowered. I have to pace myself to keep from drowning.

Still waiting on the scheduling of an MRI. Left a message yesterday, and her voice mail said she'd return the call in one business day. I'll call and schedule the darn thing, if they'll just get me the damned info. I hate waiting.

Saw the GP today.

My blood pressure is up. There's a shock. We tweaked meds, and I go back next week to check it again. It needs to be controlled for surgery, but I think we'll manage that. And I did get an increase in pain meds. I'll see over the next couple of days if that helps. Reducing my pain levels will probably help with the BP too. She sympathized with my diagnosis, but there isn't much she can do except take care of the background things, so she did. Still waiting for the MRI to be scheduled.

Info and some answers

Saw the surgeon today. No surgery scheduled yet; I’m to have an MRI to check for anything near the chest and to check the other breast more thoroughly, and added: see an oncologist after the MRI.  Surgery will be in about two weeks.

I Surgery questions.

What type of DClS do I have? Estrogen positive, intermediate grade (grade 2) DCIS. Since DCIS is non-invasive, it is by definition Stage 0, but I have multi-focal DCIS which means it covers a large area. If there is any invasive cancer, they won’t know till surgery. I have a big lesion, which increases the risk, but she still put the risk of that at 15-20%. She also was unwilling to say that the cancer is 100% curable, but puts it at 97% curable, which is the best odds she’ll give. It’s important to have at least a centimeter of clear margins; fortunately it looks like it’s in the front part of the breast so I’ll have much more margin than that.

What is my risk of recurrence? An additional 1 to 1 ½ % annually. That’s every year, not compounded. 1% chance of recurrence in the same breast, 2-4% overall chance. That’s not bad.

Will this be a radical, modified radical, or simple mastectomy? If the cancer is still in situ and not invasive, it will be a simple mastectomy with a possible sentinel node biopsy. They will check the nearest lymph node(s) (1-6) and if they look abnormal, will take them out for biopsy. If the biopsy shows invasive cancer, then they will take the rest of the lymph nodes out of the armpit, making it a modified radical mastectomy. There is no reason to take out the chest muscles, which would be a full radical mastectomy.

Will I need Radiation, if so, what effect will that have on my heart, since it’s the left chest? With a mastectomy, I won’t need Radiation pending the pathology on the sentinel node. Odds are good the cancer is still non-invasive, so probably not. If I do, I'll need to discuss risk to the heart with the oncologist. Radiation will change the skin and body parts that it affects, and that should be kept in mind as well.

Will I need Chemo? If so, I need a port – blew out a vein in less than a week last fall. Again, no, pending pathology. If I need Chemo I’ll have to argue for a port then.

In addition to fragile veins, tape breaks down my skin pretty quickly. Even paper tape. I’m to remind them of this when I go in for the surgery.

Will you be taking any lymph nodes? Most likely just sentinel lymph nodes, unless they show signs of invasive cancer.

Does it make a difference where I am in my cycle for the surgery? No, at one time they thought it made a difference, but say now that it makes no difference.

I have compromised kidneys that will require support. She said that was important to know.

I also have chronic pain, and am on a fair dose of pain killers already. How will we deal with surgical pain? It’s something they need to be aware of. I’m going to my GP tomorrow to see if I can boost my mscontin to the next dose; pain has been waking me up and that isn’t good.

I need to be sure that I have sufficient anesthesia and pain control for my size. Not a problem.

Will this be outpatient or hospital? 24 to 48 hours in the hospital. I suspect with my medical history, it will be 48. If not longer for the sake of my kidneys.

What about the other breast? Is it at risk? What will having only one breast do to my balance and physiology? There’s a lot of meat there. The other breast is at risk, but not terribly so. I can choose to have both breasts removed. That’s one of the reasons for the MRI; if the other breast is compromised then they can both come off. However, if the MRI is clean, I’m going to opt for keeping the right breast – I’d rather go with less surgery than more. That’s why I’m passing on reconstruction, although Medicaid will pay for reconstruction after cancer treatment. I can also get the reconstruction later if I so choose. The one thing to keep in mind is that if I elect to remove both breasts, I will not need to take an estrogen suppressor, and if I do keep the other breast, then I will probably be taking Tamoxifen or Arimidex. I’m also off soy supplements from here on out, since the cancer is estrogen positive.

II Hospital questions

I have back and other arthritis issues, so the traditional up and walking in the hospital after surgery is problematic. How can we accommodate my disability? She can get Physical Therapy to work with me so I get exercise without hurting myself.

Need to accommodate my food allergies, pineapple, capsicum, aspartame. That’s one for the cafeteria when I get into the hospital. However, once I am eating solid food, the family can bring my food in if that is more appealing. (I know that the food at Rose hospital is better than the food at Porter, where I stayed for my Acute Kidney Failure. I imagine I can find sufficient food to eat there for the relatively short stay.

Sufficient anesthesia for my size. Again, not a problem for the surgeon.

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The surgeon seems quite competent, and got the questions that Doug had before he could ask them. She’s clearly been doing this for quite a while. She gave me the cards for an oncologist, and the office should schedule me for an MRI soonest. I got a whole stack of literature and an organizer, and I ordered an organizer from http://www.livestrong.org . She did seem impressed with my organization and self-education; I managed to follow her entire spiel after she told me I’d overload about two minutes in. She recommends Dr. Susan Love’s Breast Book; I don’t know if we can afford it at the moment – it’s been an expensive month. But I have lots to read without it. EDIT: A friend has offered to buy me a used copy.

Questions for the surgeon tomorrow

Got these all formatted, spaced so I can write answers in.I'll print them out shortly.

I Surgery questions.
What type of DClS do I have?
What is my risk of recurrence?
Will this be a radical, modified radical, or simple mastectomy?
Will I need Radiation, if so, what effect will that have on my heart, since it’s the left chest?
Will I need Chemo? If so, I need a port – blew out a vein in less than a week last fall.
In addition to fragile veins, tape breaks down my skin pretty quickly. Even paper tape
Will you be taking any lymph nodes?
Does it make a difference where I am in my cycle for the surgery?
I have compromised kidneys that will require support.
I also have chronic pain, and am on a fair dose of pain killers already. How will we deal with surgical pain?
I need to be sure that I have sufficient anesthesia and pain control for my size.
Will this be outpatient or hospital?
What about the other breast? Is it at risk? What will having only one breast do to my balance and physiology? There’s a lot of meat there.

II Hospital questions (if needed)
I have back and other arthritis issues, so the traditional up and walking in the hospital after surgery is problematic. How can we accommodate my disability?
Need to accommodate my food allergies, pineapple, capsicum, aspartame.
Sufficient anesthesia for my size.

A link and blathering

http://www.y-me.org/index.php Saw this on TV, have been cruising the site a bit. I got another few questions to ask the surgeon on Monday. Unless I get totally overwhelmed, I probably won't call them till after I see the surgeon, because I'll be clearer on what I need then, but being matched with another survivor sounds like an excellent idea. I wonder if they have any gimp survivors with chronic pain? That would be an utterly ideal match.

I'd read this in other places, but not quite as clearly. DCIS is not counted in cancer statistics. So I'm going to lose a boob without even being a statistic. It still beats having something worse, but I think they need to start tracking DCIS, even if it's as a separate category, because without it their statistics are misleading. I'll take it, though. It may not come with an addition to the statistics, but it comes with a pretty clear future. That's way more important to me.

Keeping a positive attitude with intermittent bursts of sobbing. This is going to be a long weekend. I may have pages of questions for the surgeon by the time I see her. The good news is that even though I'm on Medicaid, the surgeon is one of the best in town; she's been featured in 5280, a Denver magazine, as one of the top doctors. And she accepts Medicaid, which is a miracle.

Poor kiddo thought I was going in for surgery on Monday; I guess when i said that I was seeing the surgeon on Monday, she interpreted that as my going in for surgery. Thankfully, I'm not in that kind of hurry. We talked about it for a while after school and I think she's a little clearer on it now. When my grandmother had (much more severe) breast cancer and died, my mom was 14, and her father kept the kids out of the loop of what was happening. That still bothers Mom. I'm taking a page here and keeping my daughter informed on everything that is going on.

(Funny side note: I dropped the ball out of my trackball today and lost it. [I now have an optical mouse with no parts to lose.] She was looking for the silly ball and got her hips stuck between the bed and a dresser. She started talking about her big hips, and I cracked up. Told her they were still significantly smaller than mine or Hubby's. She announced "I'm full woman sized already!" She's 12. I know she's still going to grow, but she is right, as well.)

This is terrifying and exhausting. I wore out fiddling with my laptop this evening, and have had a couple bouts of sobbing since Hubby fell asleep -- soundless, so I wouldn't wake him. It's going to be a loooong weekend.

Ads

I've added ads to the site. I figure that since I'm mostly talking about my breast cancer, and the ad package is somewhat context sensitive, I might find out about something interesting. If something catches your eye and you click on it, I might eventually get a few cents for it. That's not the point, so don't worry about it.

Addendum to the back post

Before the MRI, I already had a diagnosis of Degenerative Disc Disease (DDD) and arthropathy (arthritis) of the small outer joints of L5, S1, and S2.

Research

Info found by googling "ductal carcinoma in situ":

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DCIS  With a mastectomy, I will only need radiation if there is cancer on the edges after removal of the breast.  About 25 to 50% of DCIS come back as an invasive cancer.  That's not happymaking. (no other site I have found is this pessimistic.  From what I've read, especially because I need the mastectomy, there's actually not a lot of chance of recurrence.  There is a higher chance with a lumpectomy, which makes sense.  That does help me breathe easier.)  It reads, though, like removal of the breast reduces that chance.  They may take a "sentinel lymph node" for pathology to make sure it hasn't spread.

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"Ductal carcinoma in situ (DCIS) is the earliest possible clinical diagnosis of breast cancer..."  "If DCIS is untreated, approximately 30 percent of patients will develop invasive breast cancer an average of 10 years from the initial diagnosis....DCIS can be thought of as a pre-cancerous or early-stage growth of abnormal cells in the ducts of the breast. Historically, DCIS was an extremely uncommon finding in women and little attention was given to defining its optimal treatment. This is because DCIS can be cured almost 100 percent of the time with a surgical mastectomy."  Those odds are a little more pleasant.  I know I have to talk to the doctor to determine my individual risk.

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The American Cancer Society estimates that 41,000 news cases of ductal carcinoma in situ ... will be diagnosed in 2000, making DCIS the most common type of non-invasive breast cancer in women.  DCIS accounts for nearly 25% of all breast cancer diagnoses.

"DCIS may appear on a mammogram as tiny specks of calcium (called microcalcifications), generally too small to notice by physical examination."

That's exactly what was on my mammogram.  This article says that this diagnosis is not an emergency situation; a woman has time to educate herself before surgery.  I think I might be in a bit of a hurry, but I'm also educating myself before seeing the doctor on Monday.

I already know that I will not opt for reconstructive surgery.  The family is fine with that, so I will just get a prosthesis.  Less surgery, less hassle.  I can always choose it later if it bothers me, but I've thought for years that if I had to lose a breast (or both) I would not reconstruct.

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" Ductal carcinoma in situ (DCIS) is a noninvasive, precancerous condition."  The doc said it was cancer, I'll go with that.  I don't know what type of DCIS it is, but the doc said it wasn't the last stage, so it isn't "comedo."  Several places, this one included, talk about "breast conserving surgery."  I saw the mammogram.  It isn't localized.  Sounds like the chances of recurrence after mastectomy are much less, too.

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"We know, in fact, that if a total mastectomy is done (the breast alone), the cure rate for any type of DCIS, no matter the grade or size, approaches 100%."  (About a third of the way down.)  Sounds like even if it were less spread out, i might lean towards mastectomy anyway.

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Many of the articles talk about the psychological impact of waking up with a breast gone.  OK, so it's entirely possible I'm weird, but to me if that breast contains something that could kill me if I leave it alone, I'd rather have it gone.  And with a family history, I guess the possibility of losing a breast has been something I've always had in the back of my mind, so that part isn't a shock.

That's enough for now.  I'm tired, and now I need specific information instead of general.  That, unfortunately, has to wait till Monday.

What's the deal here?

I started this blog last year to chronicle my dealings with pain, crochet, and disability. Then I let it slide for a while. With the latest health challenges, I thought I'd start updating this again so interested parties, like my family in KC, could follow what is going on.

Backstory: I wound up in the hospital around labor day 2006 for intractable pain. I had already applied for disability, and it had been denied with the conclusion I could still do "substantial work" if I minimized my use of stairs. As a matter of fact, except for very short distances in my one-level home, I'm in a wheelchair. I'll be sure and avoid those stairs, though!

In late October, I woke up on a Sunday in the ICU. I'd been admitted on Thursday (Oct 26) with Acute Renal Failure. My memory stops some time before then -- I remember feeling wrong, but apparently I became completely incoherent and the guys (hubby and housemate) took me to the ER. My kidneys did not return completely to normal, so any time I get ill, I run a risk of kidney problems again. It's definitely something that I'll be discussing with the surgeon on Monday.

I just called my disability attorney with the latest two diagnoses. I'm going to get a copy of the breast cancer diagnosis (and eventually, the back diagnoses) and send them in to the attorney. Unfortunately, the chances of me getting an administrative decision and a disability payout before the hearing that has been scheduled is marginal.

More information as I have it -- probably Monday after the visit to the surgeon. I may have researched links between now and then.

Biopsy results

I got the results from the biopsy today. I have breast cancer, Ductal Carcinoma in Situ, stage 2. It's 100% curable, however, I will have to have a mastectomy. I see the surgeon on Monday.

Whatever you do, don't skip your mammograms, and don't wait till age 50 to get one. I'm 47.

Biopsy taken

And I should hear if there is a problem Friday morning.

I had a "vacuum needle biopsy." They numb the skin, cut a small slit in the skin, and then, using ultrasound to make sure they are in the right place, suck some tissue up into a reservoir. The doctor tells me that they took less than a cc of tissue. There's a lot of pulling and poking, but everything was pretty numbed up. So they took a sample, and after taking a picture of it, decided that they needed a little more tissue. Except this time, the tissue they wanted was outside the anesthetized area of the breast.

There's a study out there that those of you with chronic pain will react to with "Well, duh..." It shows that when a person is already in pain (today I was at 8 on the 1-10 scale), drawing blood will be perceived as more painful that someone who doesn't already have a baseline of pain. Multiply that by about 29 for "removing tissue from the breast." I screamed. And this wasn't a little girly scream. This was a full-throated, deep-voiced, full alto scream. After I screamed, I started sobbing and continued to sob for 15 minutes. It's been an hour, and the tears have finally stopped. Jumping Jehosophat, that hurt.

At least I know that I startled the knickers off the nurse and the doctor in the office, and drew every other nurse to the door of the ultrasound room. It was a LOUD scream. Doug didn't hear it in the waiting room, though, which is just as well, since had he recognized it, he would have been frantic.

Moral of the story? If you are well-endowed, and need a breast tissue biopsy, ask for extra anesthesia.

Last week, I had an MRI and a mammogram. The mammogram had suspicious calcifications, and I had to have a biopsy. That's the next post. The MRI came back. I have a narrowing of the spinal column in C4 and C5, a bone spur in T9-T10, and disc degeneration and a spondlyo-something, meaning the vertebra is pushed forward, in L4-L5. None of those conditions require surgery.