Thursday, April 05, 2007

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":




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.




"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.




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.




" 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.




"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.




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.

Wednesday, April 04, 2007

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.

Tuesday, September 19, 2006

Status report

The pain management search isn't going terribly well; the pain management center at Rose apparently only provides pain meds for people with cancer; no prescriptions for any other type of pain. Not only that, but my clinic should have known that before sending me there. I'm going to contact the University of Colorado Spine Center and see if they can get me in. They've been on a couple of news programs, so it could take a while.

In the meantime, Doug and I will be going in to my "regular doctor" on Thursday morning to let our displeasure be known.

Alyria is doinig reasonably well academically; that was half an hour in the powerchair. Then I sat for over an hour discovering the clinic I'd been sent to couldn't help my pain. Doug had to lift me out of the chair after that session; my back was spasmed too tightly to stand up.

I did go to the gym Saturday -- passed today because of the degree of spasm. I worked out for 25 minutes, and that was a bit much; I got stuck on the toilet when I got home. However, after a few hours of rest, I was OK to move around in the house and go to the potty by myself again. Wednesday I'll plan to work out for 15 minutes and see how that goes.

Thursday, September 07, 2006

Trial by fire? Or at least, by back pain?

So, I had my first shot at Diabetes education. There's a waiting list for pain management, but there's always room for one more in Diabetes Education. (As a matter of fact, Rose is part of Health One, so if you don't have United Healthcare, the waiting lists for things at HealthOne facilities should be short. Maybe I should call the hospital doc again tomorrow and see if I can get into pain management earlier.)

In my opinion it's backward, but I'll attend the classes like a good sheep, so I don't develop a reputation as a "problem patient." Testy and opinionated, but not problem.

This was the intro course. I have reading to do, and a couple of day's eating habits to log -- pre-meal plan. They have a 1500 calorie meal plan. At my body size, that might be a little drastic. I want to get into the pool, but am not sure I should till I see the doctor after my hospital stay.

I sat essentially still in my chair for 3 hours, after a rather bone-rattling trip to the education center from parking. It took me a full five minutes to get into the door from the car, with the sprog running the walker out from the house. I hobbled to the bathroom before collapsing, and the effort to get off the pot took a full-throated scream to actually stand. More Percocet and rest improved the situation; I just shouldn't have been sitting so long at this time. I'm planning on the core Diabetes class late in the month, in hopes of better pain management by then. I will prevail and feel well again, and soon.

Night time meds have helped and sleep will help more. I'm heading there presently.

I see my doctor next Tuesday. Gotta get a glucometer, and there are only a couple that handle Vitamin C megadosing, so I'm going to try for one of those.

And one of the fridges seemed to be on the fritz. Turned out, it was a relay that didn't close after the defrost cycle. We did lose some things, and have other things that need cooking in the next couple of days. Nothing earth-shaking. However, hubby decided since we'd already emptied the fridge before roomie came home to reset it, he was going to clean it.

Really clean it.

With bleach.

It's sitting with bleach in it now; he'll finish cleaning it tomorrow, and then -- dun dun DUN -- we tackle the big fridge. I think I've been better about keeping down the science projects in the big fridge, but there are some really ugly spills.

Tomorrow is back-to-school night for the young un's school. She wants us both to go. I want to go, so I'll take the day really easy so I can manage an hour or so sitting. Dinner after, however, may be dictated rather than made by my own hand.

Monday, September 04, 2006

On words and facility with language

My sister-in-law lives in Las Vegas. She housed hubby when he was there after MIL's disappearance and reappearance. She's been living with chronic leg and back pain for years, is on disability, and hubby says that he sees me going through some of the same things he saw with SIL. For example, I lose words. I grope and grope for the right word. SIL warned hubby that I would be going through this. He's more comfortable than I am with the strange difficulty speaking and loss of words. I hope it isn't going to be like this forever. I pride myself on my ability to speak and write well and intelligently.

I fear it will.

End of the long weekend

Well, the Oxycodone with Percocet for breakthrough pain is about 33% effective. If I take two pills of Percocet, the pain goes away, but so does my consciousness; I fall asleep. Only one pill of Percocet will allow me to remain partially lucid, but also doesn't really handle the pain. I'm on one Percocet right now and at about an 8. Tomorrow, I will call the various medical establishments and see what I can do about pain management, and set up the "diabetes education" that I doubt I have. I'll have to set up an appointment for my Family Practice doctor at the same time to see if I can get another blood draw when I've actually been fasting long enough for a fasting blood test.

I so love dealing with doctors...

Saturday, September 02, 2006

Home again,home again, jiggity jig

I'm home. I'm on stronger drugs, so now I'm loopy and in pain. If the meds are working, then I'm real glad they aren't any stronger. The Family Practice doctor at the hospital tried to get me a pain management doc while I was there, but they were all focussed on getting out of work for the three day weekend. The doc was quite pissed; he nearly swore in my presence,. he was so angry.

And while my thyroid is fine, my A1C is 7. I'd think that would mean a second test in a few weeks, because the level was right at the cutoff. No, the hospital declared me diabetic and refused to feed me most of what I wanted. I couldn't even get a glass of Gatorade for my cottonmouth from the pain drugs.

I'm home, and if I don't move, it doesn't hurt too much. If the pain is in fact being reduced by the meds, I would be screaming.

Now to catch up on Email.

Wednesday, August 30, 2006

Been a while, but...

First, before we get to me, my Dad is in Cardiac Care. One of the valves between an upper and lower chamber of the heart (Mom didn't know which side of the heart when she called me) has failed. 6 months ago there was a hole that was 2.5 cm squared allowing blood through, and he was in a "watch it and see status." Today the hole was on .5 cm squared, drastically reducing bloodflow. He'll be getting a pig valve to replace the failed valve. As of this morning, he was running a fever from something unrelated, and they want to do an angiogram and see if there are any blockages that should be bypassed while they're in there -- no one wants to have to crack his chest open twice. I checked, and prayers, good vibes, good wishes and healing energy are all gratefully accepted by Al C, roughly in Kansas City, KS. Shawnee Mission hospital, I believe.

My Mom had a quad bypass the day after Labor Day last year. The staff all recognize them. It's my strong desire and hope that they won't be spending Labor Day -- and Mom's birthday -- in the hospital next year, but that the two of them will have a pleasant and relaxing holiday together. So mote it be.



As for me, I've been very frustrated with my doctor at the clinic I go to; she has yet to write a prescription for my pain meds correctly. I thought I was seeing her today. Instead I saw Dr. Young, who will soon be opening private practice in Golden. journeyrose, if you still lived in Lakewood, I would send you to him when he opens he practice.

First thing he asked, after skimming the intake sheet, which stated my pain level was once again a 9, was "Why are you on Tramadol?" He took me off the Tramadol and Sulindac, and wrote me 20 day's prescription of Oxycontin 10 mg. In his patient notes, he says he's starting on a small dose because I'm "opiate naive." I should be scheduled for an MRI (I'll try to get a mammosquish that day too) soon, full spinal series, and I will be referred to a pain management specialist.

So for right now I can't drive, until I know how the opiate affects me. If past experience, which is minimal, and the experience of others is a good rule, it will either all go to easing my pain and I won't get fuxxy, or if I get fuxxy, I'll become clearheaded after a couple of weeks.

The doctor also announces while I'm there "You should get your stomach stapled." I said, "No." He said "Why?" and I replied that I preferred to lose weight in a healthy manner. He said, "OK," and we went back to the pain issue.

He took my case away from my previous doctor, saying he believes in aggressive treatment. Since her treatment was certainly not aggressive, I was quite willing to become his patient instead.

Towards the end of the rather rapid-fire visit, we slowed down, and I explained to him that I don't believe in weight loss surgery. He said "neither do I." I apparently look surprised -- I mean, he'd suggested it to me within two minutes of meeting me -- and he explained that most patients are not motivated to lose weight in a healthy manner, they want the quick fix. From what he heard from me and Doug, he now believes I am motivated to actually exercise and eat right to improve my health, so the weight loss surgery has been taken off the table. Whew.

If we can reduce my pain levels, I can take myself to the gym, and unship and ship up the power chair without much problem. Up till now, I was in too much pain to pull out the ramp, roll out the chair, bundle up the ramp, put it away, do what I want to do, and then reverse the process. Lifting the ramp while in pain was the sticking point.

I'm a lot more hopeful about my pain situation now than I was going into the doctor's office early this afternoon. I'm relieved as well. With my pain better controlled, then we can explore the reason my hands go numb; I wouldn't be surprised if it were something like Thoracic Outlet Syndrome. But that has been less pressing than being in extreme pain for some strange reason.

I do need a new swimsuit. At the moment I'm supersized, which limits my selection, but I'm going to browse around and see if I can find a clearance swimsuit to replace the one I have, which is at least 10 years old.



On the crochet end, the Crone's shawl is completed, and She liked it a great deal. The reason I needed it was apparently a success, and my Lady has announced that the shawl is Hers. I know better than to argue, so apparently my paphernalia needed for Drawing Down formally has gotten one item bigger.

Now that I'm back from my trip, and especially if my pain is better managed, I can make the shawl for my friend C that she bought the yarn for a year ago. Hopefully, I can get it done for her quickly, as it won't be long till it's cool enough for a shawl in Denver.

Monday, July 10, 2006

The food processor is your friend!

Eggplant Caviar.

It's cooling in the fridge right now. I added garlic, of course. And I made it with three eggplants, tripling the recipe.

The food processor gave me a really fine mince of the onion with minimal effort; cut onion in quarters or sixths, toss in processor, pulse till fine.

It took me 25 minutes broiling time, and could probably have used another five. However, the food processor came to the rescue again; the scraped out eggplant was stringy, so I plopped it into the food processor as well rather than trying to stir it to break it down. I added the oil, dill weed (dried) and salt. We don't use pepper much; it upsets K's digestion.

I also knocked together Hummus from a Fantastic Foods box mix. However, I think that next time I may try fresh ingredients and the food processor for that as well -- I noticed an unopened jar of tahini in the kitchen today. Okay, fresh except for the chickpeas/garbonzos -- I'll either have to reconstitute them from dried or use canned ones, as they aren't a fresh option.