Monday, December 31, 2012
And I could still have a few days of stewing left in me, so I thought I ought get at least the basics down on blog.
Last year, my oncologist's office merged with another oncology business (I say business, not practice, because it is clear after a year where their focus lies), then six months later broke with the MAJOR insurance/hospital group in our area (over money). I had a "continuation of care" to continue seeing him until the end of the year, at which time I would have to change insurance companies or change oncologists.
I worked very hard (or rather, my insurance broker did) to find a Medicare plan for me for 2013 that my oncologist now accepted, which also included my primary care doctor, without whom I would be lost. We felt certain that (in November, during open enrollment) we had found a very good solution for me.
Friday, midday, I saw my oncologist. My oncologist of SEVEN YEARS. I thought all was fine, we had a nice visit, I left my new insurance card info with the front desk. I had my blood drawn through my port in the infusion room, at which time the nurses informed me that as of 01/01/13, they would no longer be drawing any blood through ports in the office. Not even on an exception basis, the basis on which I had been getting my blood drawn there still since the new business tried to nix it. I had JUST seen my doctor, who surely KNEW of this change, who definitely KNEW I was one of the exceptions he had cleared and he said nothing. I told the nurse that I would no longer be getting weekly blood draws then, Xeloda protocol be damned. I have bad veins in the one arm not at lymphodema risk, and frankly I doubt I could even do MONTHLY blood draws in the traditional way without serious mental and physical pain. (long story there) She told me they could set me up to be able to the infusion center on an out-patient basis at the hospital. I asked if she would arrange it at the hospital nearer my home, rather than the one nearer to the oncology office, since obviously, why would I make the weekly drive to the further facility. I also have vowed never again to go into that particular hospital.
Needless to say, I was crying. I was crying on my way out of the building, where I ran into my oncologist. In my tears I said to him, in accusation, that he hadn't told me I would no longer be able to get my blood drawn there. He indicated that the decision had been taken out of his hands this time. I told him I could not use my veins, and that the nurses said they would set me up at the hospital. He assured me that he understood that I needed to use my port.
He KNEW how I am about needles, and KNEW of the policy change, and KNEW that after seeing him I was headed to the infusion room for a blood draw, where surely he KNEW the nurses would inform me of the change in policy.
Frankly, I think he WIMPED OUT (if someone is a woosie, what is the past tense of that? Woosed out?) He WOOSED out on being the one to tell me about it.
I sat on a bench in the building and cried while texting someone for a few minutes, then made my way to my car and sat sobbing for at least 30 minutes. When I was regrouped enough to drive, I headed home, and on the way decided that I needed to drown my sorrows in chow mein.
But wait, this isn't even the BAD part.
About a half an hour later, in the Chinese restaurant, the Oncologist's office calls to tell me that my new insurance, the one I so carefully chose, would not be accepted by them for the new year. Doctor is not on my plan. Oh yes he is! I insisted.
This is where it gets bad, and I haven't sufficiently stewed to be able to tell this part of the story without sending myself back to the sobs in which I spent the rest of Friday.
I have involved my broker, but it is looking like my doctor had a last minute dispute with this carrier and pulled out...AFTER the open enrollment period. (Dirty Pool! Foul! NOT Cool!) They have been messing with patients lives for a year now, ever since the merger.
SEVEN years I've been with this man. That's longer than my marriage lasted. Seven years I've adored him and depended upon him. In those seven years, I think the longest that I've gone without seeing him was 4 months, when we had just barely started lengthening out the period of time between exams, before my Stage IV diagnosis when I started seeing him monthly again.
And now it looks like I will indeed be interviewing new Oncologists. Something I've dreaded and never wanted to have to do, thinking I would be with this doctor to the end of my days. I made an appointment to see my Primary Care Physician next Monday to try and sort some of this out.
Goal for now? Not to fall into the sobbing dark place again.
Thursday, December 20, 2012
To highlight how dependent they might be on a key employee, businesses are often asked what they would do if that employee were run over and killed by a bus - and the answer would point out various problems for disaster recovery and business continuity planning issues.
This is true of all of us, but for purposes of our scenario, let's compare it to putting all of those things off until you are 85. You may have 5 good years left, or more, but maybe not, and frankly, it could be over next year. You just don't know.
Monday, December 17, 2012
brought down the condemnation from (only a couple) the Positive Thinking School of Blowing Smoke Up...well, people who have partaken of "the pink kool-aid" (attribution to The Accidental Amazon).
Actually, my blog gets very little traffic that isn't directed here by cross posts, (thank you Nancy's Point).
I write because it's a therapeutic outlet for ME and possibly validating for women out there who feel as I feel. When I was diagnosed Stage IV, I felt so alone and booted out of the Survivor Club...I searched and searched the internet for info, for others in my situation, and for validation of my feelings. The feelings expressed in my blog profile paragraph are not something I made up last week because I was feeling "bitchy and ungrateful", they are exactly how I felt at the time of my Stave IV diagnosis. Those words actually formed in my head in the hospital after having the "treatable but not curable" conversation with my oncologist.
I finally found some validation from a group of women on a website with a category (I'm not thinking of the right terms...), a section, a bulletin board type thing for women with Advanced (Metastatic) Breast Cancer. I found women who expressed the things I was feeling, who weren't afraid to say how much this sucked, and who weren't afraid to look death in the eye and talk about it.
I had muffins today with a dear friend who is local but whom I met through that website. We were discussing the recent prominence of the fluffy pink crowd, even among the women with metastatic disease. What happened to the voices that used to express what we were feeling?
A woman in Australia, whom I only knew by her screen name of "Flame", was my life-line. Her words validated and strengthened me. She was the first person whose words really touched me and helped me. She called a spade a spade, as they say. She sugar coated nothing.
She died in 2010.
Laura was no-nonsense and realistic.
She died in July of 2010.
Lisa was another who early on was a source of comfort and fortitude to me, who shared my views.
She died in January of 2011.
Barbie was so supportive and accepting of my snark. We would have 'aside' conversations, snarking about something that was said to the group.
She died in 2011 also.
Then there was Mary, who died in October of 2011.
And my dear friend, Kathy, whom I came to love though the internet and had the privilege of flying to visit last December, was willing to talk about death, and what she called her "exit strategy", who was more prepared for what we all face but few deign to accept than anyone else I've met.
Kathy died in July of this year.
So where are the voices we came to love and rely on? So many of those women, from just three years ago, have died. I said to my friend this morning that there were about three of us from that original group of realists who were still here. The influx of the newly diagnosed has beribboned the site. I fear the kool-aid was passed around by the gallon to these women, and they all still had full bladders when drafted to the ranks of MBC.
Some of us have migrated away from that site, and wander around Facebook and the blog-o-sphere...
...which was rocked earlier this year by the death of our beloved Rachel, of The Cancer Culture Chronicles, whose tireless research and advocacy lives on in our hearts.
Where was I going with this? Oh yeah; there is turnover in this group. Heartbreaking turnover that makes one hesitant to form new attachments.
And there is a group of voices who are greatly missed, and whose shoes have not been filled by the newly diagnosed.
I am so thankful for Nancy's Point, and The Accidental Amazon, who "get it".
Over muffins this morning, we lamented that while we wanted recognition and dialog, we didn't just want a new color of ribbon. We didn't want a new shade of the same hype and denial.
My muffin friend, K, just lost her hair for the third time. She is in a chemo regimen that leaves her cognitively barely functioning at times. She is raising two young children as a divorced parent, facing down Stage IV cancer as a single woman. She puts herself through the next treatment, and the next, to try to be around for those children as long as she can.She is trying to teach them as much as she can. I'm sure she would be fine with her son calling her a hero. He's a child. She's his mother. But if someone on the fringes of her life who barely knows her, and certainly isn't there to help out when she is feeling like crap, called her 'brave', I think she would rankle.
In the comments on my last post, Ann, of But Doctor, I Hate Pink, wrote, "Brave isn't appropriate. Brave people have a choice and do what they are afraid of anyway - I have no choice."
And Holly G said, "Save it for the truly courageous battlers out there, like our military, the fire fighters and the police."
I've gone nowhere in a big rambling squiggly line with this. I'm sure the three people who regularly read will at least be amused. Those with their heads in the fluffy pink clouds should probably mark this as a blog they no longer need to read. Am I "bitchy and ungrateful"? Well, bitchy sometimes, maybe; hormone manipulation and chemo and 3 years of scanxiety is enough to leave anyone a little prickly. But hell, I wasn't shooting rainbows and unicorns out of my *** before cancer.
Ungrateful? No, I am not. I am very grateful. I am grateful to my mother, who will go to lunch with me on the days I actually have any money, and who would drive me to a doctor's appointment at the drop of a hat if for some reason I needed to be driven that day. I am grateful for Sujean, who brought dinner over the other night, for no reason at all, other than that she was thinking of me. I am grateful for Stacie, who comes over nearly every week, and chats, or helps me sweep the living room floor, or get the ice out of the bottom of my freezer that has the roast cemented in. I am grateful to my church organization, who makes sure I have groceries in the house, without whom our diet would not have a reliable source of protein. (I didn't say "meat", lest the vegetarians, vegans and cure-your-cancer-with-your-diet people jump all over that one.) I am grateful for David, who though retired and in the early stages of Parkinson's disease, climbed under my kitchen sink on the day before Thanksgiving, and spent hours reattaching the disposal and replacing a faucet. I am grateful to my sister and brother-in-law who helped me with car repairs. I am grateful to my son who does nearly all of the cooking in our house. I am grateful every day for a roof over my head, for food and transportation, and for heath insurance.
But seriously, how interesting would my blog be if I only wrote about that stuff? I personally don't follow any blogs who write through rose-colored
I don't consider myself to be negative. I consider myself realistic.
If even one person like me, who is searching for support, finds validation in something I write, then, as they say, my work here is done. If another person is offended in some way by my attitude, to them I say, "walk a mile in my shoes".
My thoughts and feelings are valid because they exist.
Wednesday, December 5, 2012
Sunday, November 4, 2012
So who am I? I am a conservative Christian who wants to see women respected, I am Pro-Life. I'm not a feminist, though I share and respect many of the views espoused by those who claim feminism. Women are equal to men, and should be respected by them. Women should be respected by other women if they choose to pursue a career, or if they choose to raise a family. Women are capable. To be seen as capable, we must stand up and behave capably. We must value ourselves and each other. We must insist that we be treated with respect, by each other, and by men, at home, in the workplace, or in the club.
Okay, I edited a bit. Now its 2:45. Thanks for reading.
Thursday, October 11, 2012
Can I just take a moment for a couple of smaller things that are stuck in MY craw?
A big push this year seems to be getting the word out that MEN can get breast cancer, too. What galls me is that I keep seeing breast cancer patients now referred to as "men and woman". As in "the American Cancer Society's estimated number of men and women who will be diagnosed with breast cancer this year: 226,870. And the estimated number of men and women who will die: 39,510."
Seriously? Men have to step over women and get listed first? It's still a predominantly female disease, and since the awareness that men can be diagnosed, too, is recently becoming noticed, why can't we all say "women and men"? And if "men" can't handle being listed 2nd, then let's just say "people". It's certainly not anything against any men with the disease, but there, I said it; list it as "women and men" when writing about it. Please!
Wow, I sound like a feminist. (is there such a thing as a conservative feminist?) And I sound like I am tossing out sour grapes. And it's just semantics.
Maybe the inclusion of male statistics in the public view will help put a damper on the continued sexualization of breast cancer. Maybe it will help pale the frickin' pink. But men take over everything. I'm putting my foot down about them taking over (figuratively) breast cancer. Again, I don't direct this toward men with breast cancer. I direct this toward society and men in general.
I know there was something else bothering me...and now I can't remember what it was. Maybe it was that I recently saw the phrase "metastatic breast cancer survivor". What? No one survives Stage IV cancer! It's STAGE IV cancer!
Maybe it was that a local DJ interviewed a friend about her cancer (which is metastatic) and then dubbed her "The woman who skipped her mammogram", seemingly placing the blame on her for her cancer. Like Komen's recent ad campaign, averring that "you are the key" to survival.
Maybe it was that mammograms don't save lives.
Or that a positive attitude or hard work or tireless endurance won't cure your cancer. It's kind of a dice-roll, in my opinion, that all comes down to the biology of your own personal tumor.
Pinktober is a sex-sells marketing behemoth. REJECT THE PINK! Donate directly to a reputable charity who supports research.
p.s. Peripheral neuropathy SUCKS! It's bearable during the day, but every evening I am back at the point of saying that I can't do this (Xeloda) any more! Every night I don't know how I will make it through the end of the week, let alone another cycle. And this is only my 2nd round. And I'm only 3 yrs in to this party. Have I passed the median yet? Every time I get close, it seems the median moves. I guess that's a good thing in the big picture.
Tuesday, October 2, 2012
Saturday, September 15, 2012
Day 4 1/2 of Xeloda. The fatigue is starting to accumulate, which lends to the overly-emotional part I'm sure, but my feet are doing pretty well, thanks to my really awesome gel freezer cold pack thing I got from physical therapy three years ago. My biggest complaint today is headache and forehead pain. It's been going on for a couple of days now. Early on in my Zometa treatment, I had at headache at one point for a month and half. The pain is in about the same place that it is now. My forehead, though, feels like I ran into a corner face-first. (I actually have personal experience of this nature, having lost the vision on my left side as a child. Running into corners, people and walls was pretty common for me. Okay, sometimes I still cut it too close on that side, but this pain is on the RIGHT side.) It feels like a bruise, running from just above the inner point of my eyebrow upward to about mid-forehead. At the base of it, there is a small lump. If the pain didn't also radiate upward from where the bump is, and had I not has similar pain three years ago, I would assume I had one of those under-the-skin zit things going on. Those suckers can be painful! Since I know I have mets on my skull, but don't know where, of course there is the side of me that thinks it's cancer. The headache part feels familiar, and headaches are a possible side effect of both Zometa and Xeloda. The bruised tenderness thing is new. The little lump it new.
That was a huge paragraph to say "my head hurts".
We're nearing October. Brace yourself. More and more bloggers are speaking up about Pinkwashing and the pink ribbon culture and the sexualization of breast cancer. Three years ago I felt no one was saying what I felt. Maybe I just hadn't found them yet, or maybe the word and the sentiments are spreading. (I almost used the A-word. Awareness.) Maybe I'm just getting lazier and lazier, but I don't feel like I have to try so hard to express what's wrong with the pink culture because so many great bloggers are saying it. Did I say the same thing a year ago? Well, it seems to be spreading more and more. I'm darn proud of that. I'm super happy about it. I'm so glad I can point to the bloggers who do all the hard work, that I can repost links on Facebook of all the wonderful articles they post and share, that I can add blogs to my blog role so others can find them, too. Sometimes, some issues get too political for me. That exhausts me. I'm more than happy to let others take the lead on those. I comment occasionally. I get really bent out of shape occasionally, too, but usually keep it to myself. I've been thinking for weeks about writing about how irritating it is for something to be wrong and not get any attention for its wrongness until someone trips on one of those politically correct or incorrect hot buttons, and then the wrongness is noticed, but not necessarily for the wrongness perpetrated up to that point. I experienced something similar, back in my professional days, and this recent issue brought the anger back up.
How's that for skirting the issue?
I think I'll chicken out and not write the post I've been contemplating for a couple of weeks. It would probably be okay, since so few read my blog, unless I post a link on my Facebook page, in which case a couple more people read it. I'll admit it, I hate getting shredded by opposing opinions for expressing my own.
This didn't take up nearly enough of my afternoon angst time.
Among my silly things (I know there's a better word than that for it) that bother me, especially in the afternoon, is where to sit. I don't know what to do with myself. The chair is not a recliner (I'm in the market for one), the sofa is only comfortable for so long, and if I spend too much time on my bed during the day, it isn't comfortable at night. The real problem is nothing productive to do. I should dive back in to my crochet and get somethings finished before the weather turns cooler. I have a lot of things to find homes for this winter. There's no use crocheting things that never get worn. Maybe when it gets cooler, I'll go over to my mom's house more often and spend time sitting out in her back yard, which is lush and beautiful in the fall/winter/spring and too hot to enjoy in the summer.
Back to the Xeloda...I want to gripe a little. Sure it's an at-home treatment, but the routine is getting tedious really quickly for me. Getting out of bed and eating breakfast at the same early-morning time every day is a huge thing for me. Then set the timer for 30 minutes and sit with my feet on the cold pack for a while, then take the pills. Really, it takes about an hour, and as much as the morning dose is hard because it's early, the evening dose tends to run into anything else I could possibly want or need to do. With the eat 30 minutes prior thing, and the ice pack on the feet thing, it's not just taking a pill, and really can't be done on the run. Not that I run much, but I'm not one with a regular routine. I start dreading the next dosing session. Then I start feeling restless and useless.
Oh, speaking of prescription drugs, I guess my big news should be that I am all the way off the pain med I was tapering down on. I haven't had any in three days now. I'm taking a different one, milder one, that hopefully won't cause the same reliance issues, but that will hopefully be a little better than plain Tylenol or ibuprofen to keep my pain levels down. I really don't have a lot of cancer-related pain right now, so knock on wood. I don't know what I'll do when the time comes that the pain is back.
So here's another thing...the literature handed out by my oncologist regarding Xeloda states that Xeloda "may lengthen how long a person lives by several months". WHAT? Time for some straight talk with the oncologist. How much does treatment really change the time we have? If it's only months, then the expense and physical toll are not worth it! My biggest worry, however, is fractures, breaks and collapse in my spine. With two hot-beds of activity in my spine, I need to do something about those. Is chemo the only option now that the hormonals have failed? The spot we radiated at my lumbar compression fracture / site of my vertebroplasty doesn't show cancer activity on the scan any longer. Is it worth the risk of side effects from radiation to zap the other two places? One of the activity spots on my spine is down lower in the lumbar than the was the compression fracture. I sure don't want a compression fracture or break down lower! That has nerve pain written all over it!
I got an assistance grant for my Xeloda copays. The grant is good for a year, but is not enough to cover my copays to even the end of this year. After that grant runs out, no more Xeloda for me. Possibly no more anything for me for that grant period, because the grant is for anything related to metastatic breast cancer, not specifically for Xeloda. Is there a medicare plan out there with better coverage of cancer treatment than the one I have this year? (I have an insurance guy to help me.) The grant is from the same foundation that gave me grant money for Zometa. I think the lady at the financial department of the specialty pharmacy said the amounts could be combined, in which case, time to take a break from Zometa, and leave the funds for Xeloda. I wonder how many cycles Xeloda takes to show improvement in the tumor marker numbers or not?
Oh the things that occupy my thoughts constantly...
Tuesday, September 11, 2012
are forging minuscule weapons
and thrusting the tiny swords
out of the white hot coals.
No blissful falling asleep without knowing it...did I take my Ambien too early? Did I eat dinner too late? Is Xeloda going to aggravate RLS? Cuz my whole body feels edgy tonight. I hoped it would make me really sleepy and I would be sleeping more easily. It's only day .5 (since I started with an evening dose)...is this my regular crap, or my imagination, or is it all about to get a lot worse?
Sunday, August 19, 2012
Time for a little blog catch up. The pain meds titrating (or a word something like that) is going well. I was nervous about another step down, as I had a couple bad days with the last step. I did, however, step down right when I saw the doctor, and had Zometa treatment. In retrospect, that was probably a bad idea. But I waited until after my birthday this past week to step down another step, just in case. I think I did it Friday, and so far, so good. I'm getting very close to as low as I can go.
For anyone following my CEA, it was up again...over 180 now, jumping another 40 or so. It's been three months on the Tamoxifen, and those numbers say it isn't working. It is currently in Bonus Month time, a fourth month, and I have a little glimmer of hopefulness that something will improve. I quit taking all antidepressants about a month ago, and while the one I was on wasn't high on the Enzyme Interference list, I guess I can still hope for a difference. As I've said before, this is my last hormonal avenue. The next step is chemo, albeit an oral one first. It's still chemo. I see the doctor a week from tomorrow and if the tumor marker numbers show no improvement, he's going to want me to start the chemo. I think this fourth month on Tamoxifen is my hmmmm-ing and hawing month about it. We need to do something about those hot spots before a vertebrae crumbles or something equally painful. Or spread. I guess the rising numbers mean growth mode, and eventually a cell will hop from bone to organ. Since so very little research is done on metastasis, your guess on the mechanics of it all is as good as mine.
The thing bothering me the most right now is the numbness thing in my leg. My hips are out of whack I think, no surprise, and the Radiation Oncologist assumes there is an unhappy nerve. We can do an MRI to pinpoint, or I can keep doing PT exercises that I learned with the other hip in '08/'09, which seem to be helping a bit. I also have thigh pain along with the excruciatingly annoying and uncomfortable tingling, and increases neuropathy symptoms in my feet and lower legs. Oh, and aching legs, feels like bone pain, which may be weather / fibromyalgia related. Won't know until this monsoon season is over andthe dry heat dries back up. In short, my legs are driving me nuts.
Yes, I mentioned having a birthday. No, I didn't do anything fun, though I'm not sure I know what fun is anymore. That puts me just over three years since the stage IV diagnosis. I know I'm supposed to celebrate each year I'm still here, but for me, loneliness is a big factor, and that feeling of pointlessness. The only reason I feel to celebrate is that each year gets my son closer to that college degree that I really want him to finish while I'm still around. I don't trust that anyone else will see him through that if I'm gone.
Which brings us to that morose contemplating death kind of place that is getting more and more real. So let's skip it.
Signing off from my cell phone in bed...here's hoping my legs let me sleep, since I need to be up early tomorrow to drive the above-mentioned college student to school (no, he doesn't drive, and we haven't made a decision on the bus yet, since his classes are at the campus very near our house this semester.)
Saturday, August 11, 2012
My phone was running low on memory today and I had to delete some text messages to clear space. I deleted some from a friend with METS who recently passed away, and it made me sad. I also realized that I haven't seen anything posted anywhere from another friend with METS since June, and she hasn't responded to a text I sent her last week. I'm worried about her. We didn't talk all summer, kids out of school and all.
Friday, July 20, 2012
Thursday, July 19, 2012
PET scan results were good. SUV rate up in several spots, but no new spots noted and no spread to organs.
My dear friend Kathy passed away this week. She had been in hospice for several weeks. She was prepared and I felt peace at the news. She had stopped treatment (liver mets) in December. Her doctor had estimated 3 months, and it was 7. Thank heavens she wasn't in a lot of pain, and was comfortable at the hospice where she was.
I have a blood draw tomorrow, and oncologist appointment Monday. I think he'll be okay waiting longer on Tamoxifen results given the PET results.
Saturday, July 7, 2012
At my doctor visit this week, we thought I had been on the Tamoxifen three months already, but as I'm looking at my calendar, it has only been 2 months. My tumor markers rose more (CEA to 140 - remember, it's the trend that counts) this month, but I think I can safely give the Tamoxifen another 2 months before my doctor will start nagging me about Xeloda or Gezmar (? Gez something).
For anyone keeping track, Tamoxifen, while generally a first line option, is my fourth in line hormonal. Fourth and last option before diving into chemo. I don't know if I want to. How long really can living with side effects from the chemo extend my time?
I had a PET/CT scan done yesterday. I will watch my phone for the next few days (starting Monday; scan was on a Friday...a long time ago I swore never to do that, but it didn't even cross my mind this time). The doctor will be willing to give Tamoxifen more time if the cancer is still contained in the bones. Something is going on, based on the rise in the tumor markers over past six months or so, so the scan results will be interesting. Yes, I have a disc, and they look pretty much the same as the last one. But no, I don't know how to read them, so it's really just an addition to my collection rather than a piece of useful info.
A big issue for me right now is loneliness. I face all these issues ultimately alone. I have no partner to help deal with insurance and bills and decisions. I talked to a fellow stage IV patient at the doctor's office about an insurance issue going on right now, and she wasn't even entirely aware of it...implying that her husband dealt with all that.
(The insurance issue: Banner Health has dropped my doctor's office from its contract. In short, they are dropping all community practices to force anyone on a Banner plan to use the oncologists at MDAndersen at Banner Gateway. Should have seen that writing on the wall. I am now faced with getting a continuation of care processed after the 18th and before my next appointment, or changing my Primary Care Physician to get off the Banner network. I want off the Banner network. I don't want to change PCPs.)
Loneliness. I feel the future and ultimate cancer crap sneaking up on me and I know that even though I have family near (sisters and mom) and my son, I am ultimately in this alone. I'm in charge of everything. Today I went on a day trip up north for an anniversary party for an aunt and uncle. My sister drove, and another sister, my mom and I rode with her. It was so nice for that portion of today to feel like I had turned everything over to someone else. I just had to be along for the ride. I really wish that in my LIFE I could, at this point, just be along for the ride.
My son does so much for me. I've realized how much I depend on him just being with me, as Sunday comes around again, and I realize he's not going to church with me, as he has started attending the Single Adult congregation. Good for him. Really hard on me. Hard for me to go without him.
While loneliness if my big depression issue right now, my son's future is my biggest worry issue. Thank goodness he is not a small child with a mother facing this, and my heart breaks for those who have small children in this situation. But I don't think I will be around long enough for him to graduate from college and get on with his life. If I died tomorrow, he would not be ready to be on his own. He has never had a job. He's struggling through college. I worry about affording his medication (for ADD) that will allow him to get through college. If I died tomorrow, or in a year, would his father step up, and take him in, and make sure he has what he needs to finish college? I don't trust in that. I really REALLY feel I need to be around for him to finish college and follow his dream to go and teach English in Japan. Maybe that means I am going to have to suffer through chemo side effects long enough for him to finish school. Getting him graduated is going to be Herculean. I see it being iffier if I am not in the picture.
Sometimes in the middle of nothing I just burst into tears over this.
Hour to hour is my battle with this depression and anxiety.
Monday, June 25, 2012
It's day 7 of the first dose reduction. Feeling like it will take forever to get out from under this, until the pain pill need is no longer causing crippling anxiety and depression. One day I am feeling positive about it, and the next, stress and worry piles on and the light at the end of the tunnel seems sooooo far away.
Friday, June 22, 2012
I found out, reading things on the web, that another med I am on can have side effects and nasty withdrawal. I've been on it for a while, since before the hospital, and I am thinking it may ne responsible for some of the leg muscle stuff. I looked up side effects Tuesday night, decided it wasn't working well enough to risk it, decided to quit it, then looked up withdrawal Wednesday night...yikes. It can be bad. I'm freaked out a little by the decision, and haven't decided what to do yet. I'm about a day and a half off it.
I did decide not to sit on my pain meds dose. The strengths that I have can be split to reduce the dose by 7 1/2 mg. I wanted to do 5mg, but decided to try the 7.5mg reduction and see if I make it to my doctor appointment and how I feel. If I am doing okay then, I can ask him to write for the next step down.
Today was day three. I had some anxiety today, and a few tears. I feel okay now, getting into bed. I hope it doesn't get worse than this.
One place online was a chat board with lots of anecdotal info on withdrawal from certain prescription drugs, abused or not. It certainly is a good source for possible withdrawal symptoms, but a lot of the posters seem to have been or be going through some serious withdrawal, some from high or long term prescribed dosage, some addiction. It didn't seem like they were seeking a high or recreational use, but prescribed doses got them to the point of dependence and withdrawal. It kinda creeped me out. Doses were prescribed higher than mine and over long term, and I want to get out before I'm in that deep.
One of the drugs in my arsenal, one I took for a couple of weeks then dropped, is a dopamine agonist and the addict board mentioned this as a bad combination with opioid (sp) withdrawal. I actually should probably go there again and make some notes before I see my doctor.
Another step I'm trying to may, six months into a year of being eligible, is to use my Silver Sneakers membership at the gym nearby. Someone I know teaches the movement and motion aquatics class three days a week. I think that would be good for me. I finally worked myself up to going doen there and signing up on Wednesday. The young man helping me behind the counter couldn't find my name in the system and sent me away with a phone number to call. I called when I got home, they found me right away. She put me on hold and called the gym, and this time the gym found me right away. The guy helping me had apparently typed in my birthday incorrectly (this was the only piece of info he had to type) and didn't have the skill, presence of mind or common courtesy to verify, with standing in front of him. I hope I don't get him when I go in tomorrow. I'm going to try tomorrow. I have to also call a number there my friend who teaches there gave me to get a cheap 3-month pass for my boy while school is out and he has no job. I can use his help getting there, and he can use the exercise. So hopefully I can get up and get myself psyched up to make that call and go back in again.
How do people cope with the twilight years, of death approaching? How does one get on with life when it's getting late in the game, especially when mobility is affected?
If I get off this pain med, my mobility may be further limited by increased pain. I think that is desirable over the anxiey and sobbing and worrying over things that could happen in a myriad of hypothetical situations and events. If I get through this, I will never want to cry again, and people will wonder why I never show emotion.
Fingers crossed for phone calls and Day 4.
Sunday, June 17, 2012
As I mentioned briefly in my last post, I am convinced that a dependence on my pain meds is to blame for mood swings and depression. I thought that staying on a regular dose to avoid the black moods was good enough. I'm not happy though, with this control that this has over me, and how precariously I sit at the edge of unreasonable depression.
I woke this morning and took my usual dose. Unlike weekdays, I could not go back to bed and sleep off that first dose, as church meets at 9:00am. So not only do I struggle to stay alert during the meetings because of the pain meds, but also because I am shorted 3-4 hours of sleep from my usual schedule. I came home so sleepy, I took a three-hour nap. I slept through the time for my midday dose. I was so sleepy feeling even when I awoke that I didn't want to take the full dose and need to sleep again. I took half. By late evening I was feeling the anxiety and unreasonable depression scratching at the door. I took my night dose about 3 hours ago, and I still feel on the verge.
I can't stand it. I have other reasons to be depressed, and even other medication that could be a culprit (see possible Tamoxifen side effects), but the connection to the pain meds seems undeniable to me when I can feel the panic mood coming on if a dose is late, or if I take less. I have to get off this pain med.
The idea is frightening. The intensification of these moods, crying uncontrollably, feeling trapped, out of control and helpless, terrifies me, but being so controlled, and not infallibly, scares me as well.
I should have pushed the issue with the doctor, but when he didn't have a problem with the dose I was on, I let it drop. I had cut the dose from where I was post-hospital-stay, and didn't have noticeable problem with it. I thought he had been concerned about that prior dose for long term, and he is okay with this new dose. I do need it for pain. I don't want to go back to the pain levels I had right before and after that hospital stay, but this emotional / mental thing is unacceptable to me.
I know I can't reduce by half and be okay, so I want to try for 5mg at a time. I don't want to wait two more weeks until my appointment, which means I need to try to call the doctor and ask him to write a prescription for a reduced dose.
One of the recent unpleasant changes at my doctor's office is the phone menu. They no longer have the option to leave a message for your doctor or nurse. I don't know what they were thinking with that one. The only option is to hold for a really long time for the operator. I didn't make it to the operator the last time I called because the hold was too long and I have up. When I asked someone in the front office about it at my last appointment, she gave me an extension number to try the next time. If I feel like I can't wait for my appointment, I will try that. It's not a solution for the staff being unreachable though, and if that extension doesn't work after working myself up to making the call, I'll be really upset. That's why I may try to wait, and talk to the doctor about it face to face.
Another thing really bothering me right now is this pain and weakness in my legs. I first noticed it during my radiation treatment, right after my hospital stay, but it has gotten worse and longer lasting. When I stand up to walk, there is a tingling and extreme discomfort in my thighs, like after a serious aerobics class or a run (thinking way back for that comparison!). It's gotten worse in the past couple of weeks, to the point where I can't stand much at all and the tingling trembling feeling doesn't entirely go away when I am lying down even. I think this could be a side effect as well, to either the pain meds or Tamoxifen, but it started before I started the Tamoxifen, so I think it's off the hook. Another reason to want to get off this pain medication.
I understand severe depression more now. I understand the warnings on medications about suicidal thoughts, and how something can artificially hijack how you feel, and why someone might take drastic measures to escape it. I just want it all to stop - the legs, the mood, the sleepiness. I know how chronic pain can wear on you and cause depression, but this is worse than what I have experienced along with chronic pain. I need to get out from under this.
Thursday, June 14, 2012
Well, it feels that way a lot of the time. Especially at night. I put off blogging my feelings, even though this blog is about how it feels, fearing that my blog will devolve into a whining journal. If I look at the blog as just for me, a place to vent and dump emotions, then I guess I'm okay.
My tumor markers continue to rise, the CEA having crept toward 40 in the months we gave Faslodex to work , then 70 and now over 100. I've been on Tamoxifen now for less than two months; only a month at my last blood work, too soon to see results. Two months will probably be too soon as well, but I think I will not be able to avoid being hopeful.
I continue on Zometa, and send strong thoughts to my vertebrae, hoping against the odds that the degeneration of my spine can be halted.
I've come to the conclusion that the pain meds I take are responsible for painfully morose mood swings. I had tried cutting back and after weeks of uncontrollable sobbing, it came to me after much prayer that it could be a dependence issue. I went back to my previous dose and the crying jags subsided. Thank goodness, but I don't like the idea of it. I want to taper down more slowly, until I can get off completely, and use something else, which probably wont be as effective. Perhaps pain levels will not allow this. I don't know.
I've taken to using the walker instead of canes. I need the support and stability. Of course I hate my nursing home basic model walker, the kind you generally see with tennis balls at the ends of the legs. I refuse the tennis balls this time around. This kind of walker isn't really for indoor/outdoor, and rough surfaces can be difficult, not to mention hard on the caps on the legs. I've mentally accepted that the walker is probably my new norm, so I'm hoping soon to get one with all wheels, no legs, and hand-brakes. I'm leaning toward one of the three-wheeled models. Saving my pennies.
The car had problems this month, and long story short, ended up needing a new alternator. Ouch. But it could have been worse; at least the car is back in commission. Financial help came from an unexpected source and made it hurt less. I am so grateful for that assistance and thoughtfulness.
I'm typing this on my phone, which takes about four times as long, and I realized that I've only just made it through prefacing remarks and catch-up. I've not even begun rambling on about pain and death, and everything encompassing those topics in my life. Then there are the feelings of loneliness, helplessness, uselessness and ineffectiveness. I was going to try going to bed early tonight, but thumb-typing has drawn it out to the regular up-too-late bedtime that has my daytime schedule skewed.
I didn't solve anything or author any wisdom, but I feel oddly comforted by this sharing time with my smart phone.