Sums it up.

Dirty Pink Truth

There is no cure for breast cancer.

Breast cancer kills when it metastisizes, 

(i.e. spreads to vital organs).

30% of breast cancers diagnosed will metastasize

and 5-10% are metastatic at diagnosis.

150,000 Americans are living w/ metastatic breast cancer

and 40,000 will die this year...

of metastatic breast cancer.

AND YET...

Approx 3% of cancer research funds are spent 

researching metastatic cancer...

the one that’s killing us.

“Cancer is not a ribbon, 

a screening test, 

or a leisure activity. 

It is not a sassy t-shirt, 

a proclamation of survivorship, 

or a gift worth giving. 

It is a disease.” 

-Gayle Sulik, M.A. PhD

A disease that still kills. 

A disease that kills virtually as many people today as it did in 1975.

This is not progress.

Early detection does not necessarily save lives.

Mammograms are not prevention.

It isn’t cute. It isn’t inspiring. It isn’t pink.

When a graph does this...

A skyrocketing graph entry can be good when it shows:

• Grade Point Average
• Net Profits
• Donation Totals

A skyrocketing graph entry can be BAD when it shows:

• Gross National Debt
• My Tumor Markers

Bracing

Goodness it's been a while since I posted. I've thought about it. Thought I should. But I hate sitting in the chair at the table, and can't do it for very long at a time. I ration out the time I can spend there. 

Oh, I stay in touch. I'm on Facebook daily, checking email and reading blog posts when they will load on my phone. I could blog there, but I hate typing more than a sentence in one-fingered android mode. 

I'm starting to see folks bracing themselves for October. That's like stretching it out though, and I am not down with that. I have a few gripes that beg to be blogged. It's like putting it out there to the universe and off my mind, makes me feel like I've spoken it.

I am glad that more folks with MBC are speaking up and seemingly making themselves heard on the inter-waves. Again this year I don't feel like I have to take on the energy of ranting or cyber-picketing. Others are doing it, and that's great, even when I don't agree with every way they are doing it. Maybe I'll just speak my mind now and shut up until November.

I am most anti-pink because it distracts from the truth, misleads the public, and encourages the objectifying of women. The very thing that we are trying to raise our girls to stand up to and shun is glorified ad nauseum in October. So my conservative feminist side objects the most. Others have said it best. The way my brain-vocabulary link -up works these days, I'm better off reblogging. Besides, do we need to reinvent the wheel every year? The things we said about the pink ribbon movement and the objectification of women is as true today as it was two years ago, so why not use those words again. 

Maybe I'm disgruntled by nature. I wanted more public awareness and attention on metastatic breast cancer. But I'm not happy with every way it's being done. I don't think that to stand up to the pink ribbon we need to become more like it. There is a ribbon for every cause, condition and disorder, even dog breeds have ribbons. The ribbon is over done. It's so over done that there are no colors left to be claimed. I don't agree with opting a color combination for MBC, with lighting up buildings in that color combination, or using the striped ribbon. It's just another ribbon, and just another color. If you wanted to be fluffy and ribbon-y, then you could have been happy in the pink ribbon crowd. Cutting MBC with the same cookie cutter doesn't make it stand out. It makes it the same. Metastatic Breast Cancer isn't any fluffier or cuter than Breast Cancer, so why try to cutsie it up? 

Let's lose the cutsie. 

Let's lose the ribbon. Let's not think we need to add some baby blue to the baby pink on the stupid ribbon because, oh my gosh, a small percentage of breast cancers and metastatic breast cancers are also had by men. If you want to join the ribbon crowd, men, then just suck it up and accept the stupid color that breast cancer was landed with (in a marketing ploy, if we all recall) and get over the genderization of colors! I'm really sorry that men get this cancer too. But unless you want to start a new disease and call it baby blue male breast cancer, then just go along with the fluffy feel-good marketing crap already assigned your disease. Or your husband's disease. He probably doesn't really want to wear a ribbon anyway.

I'll say it again. Women and Men get breast cancer. I know that our society has decided that men come first in everything, but we will NOT say Men and Women when talking about breast cancer.

And while I'm making myself wildly unpopular, let me just say that there is a huge, gaping emotional canyon between a woman losing a breast and a man losing a "breast". It's still cancer and it still sucks, but it's NOT the same. All the societal difficulties of losing what defines femininity do not apply to a man. A man doesn't have to get special bras and adapt a whole new wardrobe style after breast cancer. He doesn't have to recover or re-establish his sexuality. If he had a mastectomy, it's a deformity, not an assault on his entire sense of self.

The only thing that can even closely compare to a woman losing a breast or two to breast cancer would be if man lost his penis to penis cancer. The thing that makes him a man, that shapes even his choice in motor vehicle, the thing that has given him power over women throughout the centuries.

But wait, unless you're Tom Jones, your penis doesn't really show through your clothes and visibly make up who you are, so it's still not the same. Just like a man losing a breast, though cancer is cancer and cancer stinks, is still not the same as it is for a woman. 

Hold on, you say. Men DIE of breast cancer, too! Yes, they do. But at the stage of metastasis, do we really need to add stripe to the stupid ribbon just so men will feel more a part of it?  (see above) This year seems to be becoming the Year of the MAN in the metastatic breast cancer world, and while I would not have them ignored or ostracized, what the hell with all this special treatment? 

I'm not finished yet, though, with view points that will surely make me unpopular. Just as breast cancer is not the same for men as it is for women, METASTATIC breast cancer is different from breast cancer, and different from any other metastatic cancer.

Metastatic cancer stinks in a whole other layer of stink than early or beginning stage cancer. Metastatic is "Advanced" or Stage IV. Why are those with Stage III trying to claim the label of "advanced"? This isn't algebra, and Stage III is not Stage IV. Sure it's scary; scary as hell, but it if it hasn't spread, it's not metastatic, so what you're facing is still completely unlike what someone with Stage IV breast cancer is facing. This is one of the reasons I stopped participating at Inspire.com.

*side-bar thought: why have I seen nothing about Ovarian Cancer Awareness this month? No painting the world teal? Well, a) because ovarian cancer does not get the same hammered out attention that breast cancer gets, and b) because ovarian cancer does not get the same objectified, sexualized attention that breast cancer gets. Be glad about that. 

Metastatic Breast Cancer is different from other metastatic cancers in that Stage IV in breast cancer does not mean an immediate death. Compared to Stage IV pancreatic cancer, Stage IV breast cancer has it made in the longevity shade, some might say. I'm sorry. Metastatic breast cancer is now more treatable than it was 10 or 20 years ago. I'm not sure why those strides have not applied across the metastatic board. THAT is why metastatic breast cancer needs more than 3% of the research dollars in breast cancer out there; it needs research dollars that will make strides for any cancer that metastasizes. If we understand why breast cancer metastasizes, should that not help us understand what makes other cancers spread? I would think so, and that is why there should be more funding dollars directed toward research into metastasis, and not just because "we want our share" of breast cancer funds. I find that attitude embarrassing. It sounds like a petulant child who didn't get her share of the pretzels at snack time. Another reason why more research dollars need to be used in studying metastasis is that Stage I, Stage II, Stage III and even Stage 0, are NOT safe places, shielded from metastasis, just because the Komen says you're cured. Stage IV is a possibility for EVERY stage of cancer, and while that isn't happy and fuzzy and warm like a Parade of the Cured, it is REALITY. 

There is no cure for breast cancer, and anyone who has had it is technically at risk for metastasis.

Metastatic breast cancer is what kills.

These are the Dirty truths that need to be accepted. Cancer ain't pretty, even the kind with a pink ribbon slapped on it.That is the awareness that needs to be spread.

I've written too much to continue, but who knows when I'll be at this keyboard again, putting this much time into it, so I keep typing.

I have two consultations this week regarding the compression fracture I have in one of my lower thoracic vertebrae. One with an interventional radiologist, and one with a spine surgeon. I don't want surgery, I would prefer the outpatient procedure of vertebroplasty, like I had in early 2012 in a lumbar vertebrae. The interventional radiologist I am seeing is the one who performed the other vertebroplasty, but I don't want to have it done at his hospital. My radiation oncologist got me in for consult within about a week, while the appt I made for myself with the spine surgeon, although referred by my other orthopaedic surgeon, had a lead time of over a month. I don't want surgery, but I'm hoping he can refer me on at HIS hospital to interventional radiology. Somehow I'll save face with my radiation oncologist, whose department is the only thing about the other hospital I can tolerate. 

After I address the pain being caused by the compression fracture, I will hopefully be able to lie flat on my back on a glass table again for radiation on my right femur/femural neck. Hopefully all before the end of the year and the rolling over of out-of-pocket totals. 

This leads to what I really wanted to gripe about today, but the looming of October got in the way. I have lesions in virtually every spinal vertebrae except the four (?) that have been radiated. They HAD lesions and we zapped them. Also my left scapula is "pretty chewed up", there are lesions unspecified and unnumbered about my ribs, my skull and I think scapula and something fishy on my right humeral head, in addition to what we zapped on the left femur and what has recently appeared on the right femur. I don't read the language of scan reports, and details are never explained, but suffice to say I have a LOT of freakin' cancer. This will be my FOURTH course of radiation to bone metastasis. I am in pain every day. Sometimes I am in level 8-10 pain. I can't seem to get the attention to pain management that works for ME, and I haven't driven myself anywhere in almost a year. It would be unkind to say "buck up" to anyone with bone metastasis, even metastasis to only one vertebrae. So I will stop before I do. I think I need to find a way to feel that I am taken as seriously and given as much thought as my extensive condition deserves. One way will be to stand up for my right to choose a hospital. It won't be the easy way out, but it's the way I need to go with this. 

So thoughts, prayers and juju can be directed at my ability to stand up and take the less easy path. This Tuesday and Thursday are my consultations. Tuesday with the interventional radiologist at the hospital I hate, and Thursday with the spine surgeon at the hospital where I want to be.

Thoughts on standing up for something YOU've needed? Do share.

I read over this in published form and I see words left out and grammar that doesn't agree, but when I go back into edit, I can't find it. You probably don't care, but I had to say "I know" in case you do notice, because that's just still me. 

CT review with Surgeon

Based on the CT and PET scans, the surgeon does NOT feel that this requires surgery (which would have been a hip replacement). Still need to attack this before it gets to that point. I hope the radiologist agrees to treat it sooner than later.

Just a Quickie...

Oh yes, PAFF still in force.

I had a PET scan. Med Onc accepted it all as good news and sort of berated me for not being more excited. I felt that she hadn't even looked at the report before she walked in the room, and wasn't taking some of it seriously enough. That Monday I saw the Rad Onc, whose office I had given the head's up like she told me to in February, so that she could look at the scans before our appt. I don't think she had. She wasn't taking parts of it seriously enough, IMO. We did agree to do some xrays on my back to try and decide if the new compression fracture in the lower thoracic is causing my rib pain.

Rad Onc apparently looked at the scan and went over it with the reading radiologist after our appt. She called me (yes, those dreaded personal phone calls from the doctor!) the next morning after having done so.

Let me just say that here that the part of the report (which I picked up from the imaging center myself, screw waiting for the doctor to call) that had me concerned was....scary drum roll...lesions on the RIGHT femoral neck.Not wanting these to ever get out of hand like the left leg did, and also out of concern that even I know that the femoral neck is the narrowest part of the femur, I wanted to be ahead of this *)#(@-er, and I wanted my doctors to take it seriously.

Well, after 2 doctors being less concerned than I by the report of cancer in my right leg, Rad Onc reads the films WITH the reading radiologist on the phone with him re-reading it to her for his reactions...yep, they are afraid that this has ALREADY caused damage to be of concern. She added CT scan of the femur to the xrays of the back.

Had the CT and Xrays today. I can see in an Xray a compressed vertebrae. I can see in a CT scan which bone is in question in my leg. But that is it. She also has the Ortho Surgeon squeezing me in again. Never a good sign either.

Yes, this could be possible surgery. She didn't know what kind, she hadn't talked to the surgeon about it. He'll see the CT when I walk in his door with the disc in my hand bright and freaking early on Monday.

I could just swear! I really think this is new since the Dec PET, because I know she looked at both legs when she reviewed that one. Really, I'm trying to decide which doctor will be more receptive to swear words right now, because I really would like to swear about this in someone's office. I don't think that would go over too well with the psychologist, though thank goodness I am seeing him Monday afternoon, at which point I could very possibly have another surgery on my plate.

I am not even completely recovered from the last surgery. That was made worse by my rib pain, which I feel confident is caused by the compression fracture. And to remedy that...a surgical procedure (vertebroplasty) which I will apparently have to talk the doctors into. She said she was going to ask the interventional radiologists if they can do a vertebroplasty on a previously radiated bone, but I guess she didn't get that far after getting distracted by ME BEING RIGHT AGAIN!.

Ending this quickie (which really wasn't, was it) here and just please everyone swear for me, Or pray. With which ever you are more comfortable. Or both, but not at the same time.

PAFF??

Pain
Anxiety
Fatigue
Fear

for Hugh

Leave a message for Karen, TC HERE.

Radiation - this time complete with side effects!

I finished my 2 weeks of radiation to the rodded and fractured and becancered femur, and to the lumbar vertebra that had the doctor worried. Stop those pesky cancer cells from growing. Stomp out those hot spots.

This is the fourth time I've had radiation. First go-round in 2006 to the breast, of course, which even with the 2nd degree skin burns I worked right through, doing radiation on my lunch breaks. At least I could walk.

2009, right after stage IV diagnosis, late summer, to the right illiac wing thing. Helped the pain IMMENSELY, and I had almost nothing in the way of side-effects. A bit of fatigue. But I was actually walking better by the end of the treatment.

2012, Spring, after repair of compression fracture in the lumbar region, radiated that area and the LEFT illiac wing area. Again, no side-effects, but welcomed pain relief. Walking with walker, though looking back I am amazed that I was walking so far in and out of the facility that way.

2013, Spring again. What a waste of good weather. I've shared my horrific hospital story with the rod being put in the femur, and the long stay (2 weeks, felt LONG to me) in rehab. Walking a little with the walker by the time I left, but I think the attempt to work the leg put more pressure than I should have on the ribs and back. Did one round of Xeloda, since I had been on a break for surgery and rehab, and then a two-week radiation treatment. I wasn't walking very far (down the hall) and so I didn't attempt it for this every day trip. Wheel chair, all the way. I felt bad that my mother, who is almost 70, had to load and unload the thing, and still does, for all my appointments.

Going into this round of radiation, I didn't really have much pain in my back. My pain focus was on my leg.

Let me side-bar here and mention that I had the same wonderful techs for radiation that I'd had for the other two back/hip treatments, especially my most favorite person in the whole medical world, Sam. Kindest, made me feel securest, always patient, always made me laugh or smile. Thank goodness I had Sam.

This time, I think I've had side effects. While my back wasn't really hurting that much, after the treatment, maybe toward the end, it started getting worse and WORSE! Ribs, flank, sides, spine. Oh my gosh, there were days when I felt like every single rib was broken, surely; that's how badly it hurt. Ribs front and back. Sides, everywhere. Oh so much pain.

Surely not from the radiation, says the radiation doctor.

Sounds like inflammation and possible pleural effusion, says everyone else! I was to the point, last weekend, where I was going to go to the ER to have that evaluated. I was in so much pain, I was willing to face the ER and possible needles and junk. THAT's how bad the pain was. I actually put it on my schedule for this past Monday. See family doctor. Go to ER. But Sunday I was feeling a little better and Monday morning, still out of the extreme pain that would drive me into an ER visit. Pain started spiking again midweek. Finally I put 2 and 2 together and correlated the pain with the wearing off of the pain patch (pain meds transdermal patch). Now that I've correlated, if I wait the full 72 hrs for patch use, I am ready for the ER. If I change it 8 - 12 hrs ealier, I can stand it, but definitely feel a dip. The family doctor suggests I talk to the prescriber (oncologist) about changing on a 48 hr rotation, not 72. I think that would be best. Upping the dose I don't want to do again, and I think it would still wear off too soon. If I go the full 72 hrs, it take a day and a half for it to rescue me, and that leaves me about a day before the pain returns. If she will prescribe for 48 hrs, then I think I can handle this pain at a more manageable level. Is it managed? Well, no. I'm still taking add'l oral Rx meds with it, but not every 4 hrs. Ibuprofen seems to help enough. So is it managed? Sort of. I could live (for a short while) with the level at 48 hrs. I am hoping that these obviously caused by radiation symptoms clear out by a month's time. I'm not walking, not even down the hall. Barely getting from bed to toilet with the walker. Front door to car with walker. Wheel chair to recliner with help. Is it an acceptable quality of life? No, but I can take it for a little while longer if I think there is a light not far off.

Tomorrow I am having a full body bone scan, ordered by the radiology oncologist, mostly to calm me down about having broken bones that no one knows about. I think it's a good place from which to move forward, knowing there are no breaks for fractures. If there aren't, and the pain doesn't start to subside, then evaluation for pleural effusion will still be in order, but we've at least narrowed it down, ruled something out.

I hope I don't have any new compression fractures. I hope I don't have anything that will require me to reenter the hospital. I need at least a year between visits to emotionally be able to face that. I hope I don't have anything next spring that returns me to the hospital, or radiation, or pain.

That's the hard thing...one of the hard things...Stuff keeps happening. Recovery times get longer. That's where I am at now. It's the next level of this cursed frickin' disease. It's been hard to wrap my head around. It's been hard to accept that while there may be little "betters", for the most part it's downhill from here. I will have to rely more and more on others. I cried about this to my mother, about facing this alone, about being alone in this. She assured me that I was not alone. But I am worried that a new crisis at the attention-sucking sister's house will pull her away.

I've felt always 2nd to Attention-Sucking Sister. 2007. I was barely finishing up radiation and getting my port taken out. I'm sorry that Attention-Sucking Sister anacronyms down to A.S.S. I didn't plan that. Anyway, she is diagnosed with Stage 0 DCIS and rushes into a bilateral mastectomy. My support is immediately gone.  I wasn't even finished with treatment, and BAM, I am nothing. I am on my own.

2009. Maybe 2010 by now. I'm still reeling from this Stage IV diagnosis and she has major crisis involving one of her children being delinquent. BAM, I am nothing. I am on my own. Her depression takes all the support and attention.

2013. I've been through the wringer this year. I'm not walking or driving yet. I am still completely dependent on my my mother for transportation to doctors, for grocery trips, for prescription pick ups. A.S. sister's delinquent son falls into more trouble. Last night. Mom is out there today. And by out there, I mean this sister moved to another county a couple years ago. I have a few more appointments already on my mom's calendar, including that early-morning bone scan tomorrow. I sit here on the edge of my seat, hoping that I am not completely cut out again. I can already tell that I will not be seeing much at all of my little sister and here kids when they come to visit from out of state later this month. She will spend almost all of her time Out There. Never mind that I could be dead before she is down to visit again next year. I am completely feeling on the verge of being dropped with no support.

I could go on and on about this. I feel like almost no one understands what I am saying when I mention how much help and attention A.S. Sister gets for a cold or a hang-nail, let alone the big stuff. And I'm not saying that she shouldn't get support and help from family in a crisis. But I AM saying that I STILL NEED some. Her newest crisis does not instantly clear up whatever I am facing.

I expressed these things to my mother a week or so ago, before this latest crisis of my sister's. I hope she remembers what we talked about. I hope she is aware of how it may affect how she supports me. I hope having said something a week ago means I don't have to stomp my feet like a child and cry "no fair" to get attention this time. Because I'm not just being a baby; (it is a real phenom, I'm not being a baby about that either) I really DO still need help and support. Not just emotional support, which I am pretty much getting used to being shafted for this sister, but I canNOT take care of myself yet. I canNOT drive myself to appointments yet. I canNOT drive my son to get groceries or pick up prescriptions yet. I am holding my breath to see how the rest of the next week plays out, with appointments and help. Oh, and then there is the handi-craft project my mom and I are working on TOGETHER for Christmas gifts. I'm sure her time over here working on that with me will fade, but at least we've got until Christmas to finish. I recently made an appointment to begin seeing a new psychologist, whom I met in rehab, and it's not on my mom's calendar yet. I really need this. Will I have to find a non-family ride to counseling? Will I have to use dial-a-ride? Will I have to forego it?

I hate that I sound like I am whining and being selfish. I hate that I probably sound selfish to anyone reading for worrying about how this will affect ME when I haven't even given it a chance yet. It would be selfish. It would be petty. HAD THERE NOT been so many precedents already set!

Please, someone out there, get me.

Now, maybe I can sandwich this in between talking about radiation and continue in my belief that no one in my family reads my blog, and that I can therefore speak my mind.

Back on Xeloda. Trying to outlive these radiation side-effects. Bone scan tomorrow. Review of results with Rad Onc on Monday. Oncologist that Friday, with review of meds. Follow-up with ortho surgeon the following Monday. And hopefully new psychologist the Monday after that. Doctors want me to start more physical therapy after radiation. I've worried that this is a lot more appointments to ask of my mom to drive. I probably won't even ask now. We'll see.

My other sister brought me a new (to me) recliner last weekend, to replace the one with the broken handle. She surprises me with things like that. I can't recline without help yet, but it is wonderful. WONDERFUL. Best thing going right now. My bed has been a constant battle since getting home of too high to get into or to low to get out of (isn't that a Michael Jackson song?).  I'm doing pretty well with it, as long as the pain is in check. On the week when I was planning the ER, there was so much pain that I lost my breath and was gasping for air and scared the hell out of my son when he was helping me to bed one night. Is that sort of thing in my future? What will my end-game be like? Who will be there? How drawn-out will it be? These are the next-phase questions. These are questions that resist denial now.

I wish I had the energy and mental wherewithal to write blog posts that read like articles or essays. I barely have it in my to keep up with documenting the happenings. But funny still creeps out when I accidentally almost type MJ lyrics, and I do have the wherewithal to see the humor in that sort of thing. Thank goodness.

for Donna

RIP, Donna Peach, with much dancing.

incompetence or arrogant laziness?

I told the tale of the radiologist who failed to read my PET scan far enough south to find the obvious lesions in my femur a few posts ago (here) as I contemplated the emergent February pattern on my skeletal event horizon. To recap, there is lesion on my femur that was obviously visible in my December 2012 PET scan, providing the one looking actually looked.

The next time I saw my R.O. (Radiation Oncologist), Dr Z, she had the computer in the exam room, showing me the MRI I had done of the thoracic region right before my surgery. I asked her if she would pull up July's PET scan and see if the lesion in my femur had also been there in July.

YEP. There it was. Clear as day, if one but scrolled farther south through the slides.

If your brain isn't connecting the dots right now, let me help. The lesions that in December put me at risk of a femur fracture were also there in July. Also unreported. Had they been viewed and reported in July, would we have been able to stop those cancer cells in their tracks with some radiation, before more damage was done, and avoid this recent surgery and month of hell-pain and expense completely?

I have to think yes.

I saw my PCP/PA yesterday and she recounted to me her "chat" with the reading radiologist when she requested, over a month ago, that he take a re-look at the scan. Apparently, he was an arrogant prick (her words) to her on the phone, told her that if he had seen something he would have written it in the report (obviously he needs to be reminded that he won't see anything if he doesn't look), and that even though he didn't mention past evidences in the pelvis, since there was nothing new or active, no, he wasn't going to make an addendum.

Arrogant bastard. This was before Dr Z called him with evidence that he did, indeed, need to make an addendum, and that he had, indeed, failed to "see" and to "look". Again I hope she was her arrogant best on the phone with him.

When I see her next week, I will ask if she ever received that addendum.

I have cancer all over my bones. A PET Scan scans from mid-forehead to mid-thighs. I expect that whomever reads that scan looks through ALL of it, not just the areas where there was activity noted on the previous scan report. Cancer on the bones spreads. It grows. It travels. One of the reasons I have PET scans is to look for spread, growth and traveling.

While visiting with my PCP/PA yesterday, she confirmed that the same arrogant jerk read the December scan and July scan. My next move is to see if he read the one prior to that, and see if I can tell (by comparing to Dec and July) if the lesions were there, and how far back.

After I compile what I can discern from my reports and CD's that I always insist upon having, I plan to write a letter to the head of whatever practice this A-hole is with, and copy whatever board by whom he is certified. Or write to the board and copy the practice?

Suggestions on chain of command for writing this letter are appreciated. 

What are your thoughts?

What other measures would you take?

Post Acute Care and Rehab

Whooshed out of the hospital with about 10 minutes notice late on a Sunday night for a terrifying ride on a tall gurney (I guess they steer better when they're really high?) in the back of a van speeding down the freeway and into the rehabilitation facility.

Bed to gurney to bed...those transfers are mortifying. People in a hurry who might accidentally move that leg wrong and cause me a world of hurt. (My gurney guy turned out to be very nice and thoughtful though.)

And after the dumping into the bed, I realized that I had been dumped onto...THIS:

Which actually, when in the process, felt like THIS:

And the rest of that first night I hardly slept at all, because of not only the pain, but my roommate insisted that she has to sleep with the lights ON so that if she gets up in the night she won't trip on anything.

She is actually not able to get out of the bed by herself. 

Next night, one of the CNAs turned the lights out after she was asleep, and after a few conspiring eye-rolls I realized that I was not alone in finding this ridiculous. But she was old and infirm. In her mind I'm sure it all made perfect sense. They put me on the list to move to a different room. 

Meanwhile, using the bathroom was still a horrific event, still a bedside commode, and getting into bed still involved yells and loud moans. 

I'm bored with the telling of this, so I'll try to get this up there, brief and unentertaining though it may be.

My sister put me on the list for a single room, no roommate, which was said to be a first come-first-served thing. Since I had the sympathies of all those who make things happen, I was moved to a private room after 2 nights.

Thank goodness and bless the hearts of all who made that happen. I could have ended up with worse than lights on all night and been so much more miserable. 

Thank goodness because I ended up there for TWO WEEKS!  Physical therapy was hard, but not painful like it started out in the hospital. People helped me in and out of bed to use my potty-by-the-bed until I could do it myself, and only one of them made me cry. They gave me my medicine and told me when to eat. Actually I can see why sometimes the elderly LIKE to stay there and they sometimes have to make them leave. Once I got home I had to do a LOT more for myself, and it wasn't easy at first.

To pass the time, I berated and documented the food. The photos I think speak for themselves.

 

 

Now that you're running for the phone to order a pizza, let me just say that yeah, it was that bad. Some was edible, but all in all, worse than school food x100. But people brought me in good food on several occasions and I certainly didn't starve. Among the things brought in to me, Panda Express, Chipotle, Wendy's, Taco Bell, Filliberto's, and that yummy place Stacie took me a while back with the amazing green chili pork. I'm surprised I didn't gain weight while I was there.

Who knows, since weight is suddenly being done in metric everywhere. They didn't check with me first.

As the two week mark began to roll around, I began to worry that the possibility of my discharge was going to be overlooked until it was too late for it to happen before the weekend was over. I was getting myself up and down (though I still needed help most of the time getting the one leg in bed), I was dressing myself, and I could have gone all day and not had a soul check on my except at med times, and to wake me up at odd hours of the night to check my vitals. I knew when I started to be hypercritical of everyone's job performance and the organizational structure of the entire center (oh there were things I could have straightened out and made run much better!), I knew I was ready to go home. We tracked down the appropriate person, she checked reports and came back to me saying that they and my insurance had decided that I was not strong enough and needed to stay longer.

WHAT?

I had just used the real toilet for the Occupational Therapist and satisfied her that there was "no reason" I couldn't go home as far as she was concerned. 

I had walked 200ft with the walker in Physical Therapy the day before.

My staples were out of my incision and the surgeon said I was healing very well.

I am doing almost everything for myself. For whom else do I need to perform? Tell me and I'll do it!

Go back and check with those people again.

Which she did, and realized that she was going off WRITTEN notes that did not match what was in the computer (i.e. were outdated), and that indeed I seemed able, if I desired, to be discharged. DUH!

(Operational and organizational incompetence. My increasing awareness of this is why they needed me out of there and why I needed to be gone!)

So I was discharged and sent home with prescriptions I would need for the interim for pain meds I was taking etc, until I could get to my regular doctors.

Only the prescription for one of the narcotic controlled substance pain meds was written wrong. And there's no phone call to fix narcotic controlled substance pain meds prescriptions. And the rehab facility turned out to be unwilling or unable to correct their mistake (operational and organizational incompetence), so I went down to the wire on this particular med, which turned out to be a total hassle to fill (as all drugs of this level are, because everyone in pain is a criminal trying to scam drugs, dontchaknow) and after a long afternoon at the oncologist yesterday, it took my mother 4 pharmacies and until 9:00pm to get it for me. 

But the important thing is, I am home. My pain is almost managed, and is not severe. I can get in and out of bed by myself, go to a real toilet by myself and get around my house. My son is taking care of everything in the house and my mother is driving me to appointments and I even got a shower with her help.

I have home health care, which entailed a nurse coming once for an evaluation, supposedly another is supposed to contact me, physical therapy, of which I have three more visits, and occupational therapy, of which I have heard nothing. Perhaps they are considering them to be combined. 

As I read back over this post, it is boring and my tenses very often do not match. This usually really bothers me, but today I am playing the pain meds card and letting it ride. I have more to tell in this femur tale, so come back soon.

MRI Madness & Hospital Hell

Hopefully I am writing far enough out from events not to sob at the retelling, not so far out that I've forgotten all the details.

In our last episode, I was scheduled to see the orthopedic surgeon and have an MRI on Monday, two weeks ago tomorrow, if I can believe it. The surgeon was personable enough, leaning toward charismatic. At the office I had an X-ray of the left leg. 

FYI, fat shows in X-rays. The rolls looked to be those of the Michelin Man. Not exaggerating.

The bone looked innocuous enough, as cancer cells on an X-ray don't sport devil horns, but he pointed out the area that was cancer and said it had "moth-eaten" properties. Definitely a candidate for The Rod. The surgery coordinator would set things in motion and call me.

Off to the MRI. I am walking gingerly with the walker, trying to keep as much weight as possible off the leg, as per instruction, and tired already after the exam room at the surgeon's office turned out to be the furthest from the front door possible, down a long hallway.The walk at the imaging center was too far as well. And apparently, regular walkers are not allowed in the MRI room. I guess they might fly through the air and stick to the machine. They actually had me try to walk from the door to the table, with support from two techs.I was stressed about fitting, and about whether or not my port would be used for the contrast. Although I was told by the scheduler that the RN would indeed be available, when I arrived the techs told me that another procedure had been added in and called the RN away from me. They didn't know if she would be done in time there to access my port mid-MRI. 

I did fit, barely, though more smoothly than I recalled from my last MRI. I had to go head-first and be completely squashed/immobilized. I did pretty well though, and thanks to Ativan, did not freak out. My arms were pinned to my body in a way that cut off all circulation to my hands and they were rendered completely numb and useless. There was also a spot where my fat thigh was against the wall containing the hot magnet, and I was sure it was going to leave a burn mark. It was like a game of chicken to see who could hold their hand over a candle the longest. I made it to to the Add Contrast portion of the recipe, and was thrilled to see the familiar face of Maria, the RN, as I emerged from my electromagnetic cocoon, ready to bypass the drama of the vein search and access that port!

MRI finished, hobbled out door, down the long hallway with my walker, and sat to rest from that in the lobby. As I rested, the tech came rushing out, looking for me frantically. The final scan 2 sections had not been properly aligned and they needed me back in the tube. Wholly Freakin' Crap. It was a good thing I was still medicated. Back down the long friggin' hallway, back across the No-Walker Zone and back into the tube for more thigh burning and extremity numbing. This time, as I'm carefully getting ready to dismount, the brilliant idea sparks in the tech's cerebral processor to get the MRI-safe Wheelchair and BRING IT INTO THE ROOM...MRI-SAFE...WHEEL CHAIR...and wheel me out of the room, and back down the long hall, and now that they realize how stupid it was to have me hobbling and hopping about, wheel me all the way out to the car.

I'm so exhausted by the retelling of this,  I need a break.

********

Chatting up senior citizens in the hall was exhausting too! Back to the computer...

The surgeon wanted me in the hospital a day early for "testing". Now that it's over I still don't understand his reasoning. The hospital called when I bed was available on Tuesday. We rushed on down, having been assured that they had all my info by the surgical coordinator, and felt like no one in admitting had access to any of that illusive info. This was a theme that would carry throughout the day and into the next.

The room they took me to was quite nice, and I was encouraged by the height of toilet. It was apparently one of the rooms that had been re-done. So we sat. Sat in that room all day. No info showed up in the computer at all...nothing on me from the past stays, nothing. This new "everything is accessible in the computer" thing is bull crap. When I'm feeling better, I will gripe to the hospital more about that. My profile had to be built from the bottom up, and I was not happy about that. 

And we waited. No testing. Vitals. That doesn't count as testing. When I saw the surgeon, I asked why I was here. Must have chest X-ray. That never happened. In fact, I don't think the blood work even happened until the morning of the surgery. I don't really remember sleeping there that night. I remember the next day the bumbling attempts of two RNs to access my port. They got it in but not well; poor blood return for two days until another RN did a Draino flush on it.

Still no chest X-ray. Apparently it wasn't so critical that we couldn't do surgery without it. I don't think I remember the pre-op drugs or anything. Probably this retro-active memory loss is from waking up in such 

PAIN!

Wholly Mother of Pearl Fracking Son of a Mother PAIN! SHIT! (had to be said)

I don't even know how to explain the next five days without swear words. And crying. And yelling. And screaming. I guess this is the worst pain I've ever had over the course of days. No bedpans...they want you up. I wanted to just pee myself. It was horrible. I wish I couldn't remember this part either. It took three people to get me out of the bed and onto the bedside commode, and it took about an hour and a half, round trip. Some of the nurses and aides were great. Patient, compassionate, helpful. Some made me wonder how they managed to graduate with a degree at all. 

Oh did I mention that I did not go back to the same nice room after surgery? Nope, general surgery, crappy small old room with a miniature toilet. I was not happy about that. Why did I come a day early and do nothing and not at least hold the room?

I have four incisions, three of them pretty small and some serious bruising. And apparently there was a fracture as the surgeon placed the rod. I envision it crumbling in his hand. I'll get more info when I see him again in a week with a clearer mind.

On Friday, I think it was, a Physical Therapist came and tortured me to the point of screaming at the top of my lungs. He rushed me, was arrogant and he hurt me needlessly. I was so pissed off. The next day, the nurse told me PT was in the hall and I was probably next. I asked if it was the guy from the previous day, and described him. It was. I told the nurse I did not want that man ever touching me again, that he had hurt me needlessly, told me "we didn't have time for this" when I objected to being rushed. The nurse told a PT supervisor. I never saw PT again. I hope that guy got in trouble. He was an ASS. I might address him again with the hospital, depending on how faded my memory is when I get out of here.

I was in there five days. Six if you count the stupid pre-op day of purposelessness. Five days and still in horrible pain and not able to do anything.

It was pain and long toileting events and yelling and crying and more and more pain. On the weekend, they told me I might need to transfer to a rehab facility if I wasn't well enough to go home. By Sunday, the toileting ordeal was down to about 45 minutes from the hour and a half, but there was no way in hell I could go home. Sunday night I said goodbye to IV pain drugs and was whisked out of there on a transport gurney and brought to the rehab place. 

It doesn't get much better for a few days. I think the theme to remember here is PAIN. Helplessness and PAIN. Yelling in PAIN. Crying in frustration and PAIN. 

NEXT TIME...The Rehab place in which I am the youngest patient by about 30 yrs.

Does twice a pattern make?

This week I had  routine follow-up visit with my radiation oncologist. I had radiation early last year to some spine and left illiac wing, and she has continued regular follow-up visits. We talked about my pain in my leg, where it came from, etc, and settled on it being sciatica, and she thought it was a great idea to do  physical therapy.

After I left, she looked at my films from my PET in December. At the actual SCAN on the computer, not just reading the report. She would have looked at them before she saw me, but I didn't know I should give them heads up on that, didn't know she would look at the actual scan. It's probably better that she looked at it after we talked about my pain, etc.

She called (personally) me a couple of hours after I saw her, after looking at the scans, and said she didn't like the looks of one of the bones in lumbar area and wanted to evaluate it in relation to the spinal cord, so she ordered an MRI.

That was Wednesday.

Yesterday morning, Thursday, she called me back AGAIN, personally again, which kind of freaked me out from the get-go. She said my description of my pain (that it was nearly constant, at rest even, was never really gone) was sticking in her mind so she went back and looked at the PET again. She looked outward from just the areas that she had treated before, and a spot on my femur jumped out at her, lit up. Not miss-able if one actually looked at the entire scan.

She called the radiologist who read the scan\made the report in December and had him look again.

Now, if anyone remembers, I felt that the report from December was lacking. It was like he got to the spot where I had vertebroplasty and got distracted...mentioned nothing from there down. I had mentioned this to Dr P, and to Dr O, and to my PCP/PA. Dr P and Dr O said they were going to request a re-look. My PCP/PA called him and asked him about that, and he came back with that all was fine in the pelvic area, no change, that's why he hadn't mentioned the area, no addendum needed.

So now my Radiation Oncologist calls him (and I can only hope she said, uh, you missed something obvious; did you even look at the femur?) and has him look again.

He is making an addendum to the report to include the findings on my femur.

She (Dr Z) said the area is on my upper femur near my groin area, and that it shows activity enough that the bone looks weakened. She said it is at risk of a fracture or break. She called an "orthopedic surgeon friend" of hers and he looked at it also, and they agreed that I should have a rod placed in the leg. If it breaks, she said, with the cancer activity, it would be nearly impossible to mend well. She said the rod is a simple, short surgery, with small incisions. She said he could see me on Monday, and had an opening for surgery on Tuesday.

Wholly Cow!

I asked which hospital, she said probably there (where she is) at Dessert. I said oh, I hate that hospital. She laughed and said that's where she is! I said her department I love, and they are the only thing I love about that hosp. She said talk to the orthopedic surgeon. I don't know if I have to stay overnight, or how long the recovery is or anything.

I guess as long as he promises me that I don't have to be in the oncology ward, where most of them hate me and I hate most of them, and that the surgery won't be in the Interventional Radiology dungeon/basement/spare storage room where my vertebroplasty was done, and if I get plenty of good drugs going in, and not at the freaking last minute, I could be okay with it, if that's where his opening is.

Dr Z said it's not an emergency situation or she'd have had me go to the ER, but it is something to be done sooner than later, sooner than soon even. So if the surgeon's opening is at that hospital, I guess I will go with it, after extracting promises from him, of course.

SO, the orthopedic surgeon's office called this morning and scheduled me for Monday morning at 7:45 A.M. to see the doctor.

I don't even get up to use the bathroom that early anymore; 

this is going to be rough. But here's the cool thing; the surgeon, we'll call him Dr M (I skipped over "N" in my backward physician alphabet), his first name is awesome. It's the same as Dr Cooper on the Big Bang Theory. He's also  young, about the age of Dr P, I would guess. I like young doctors; they haven't had as much time to get arrogant or grumpy. I think he works a lot with sports medicine orthopedic stuff, so maybe he is not like most surgeons, i.e. no people skills.

I was a little freaked out yesterday when I talked to Dr Z. It was a surprise, for one thing; surgery in few days! But I think my tears had to do with the fact that I had been complaining about my leg pain since before the PET scan (to both Dr P and my PCP/PA), AND I had mentioned the lacking and seemingly distracted PET report to everyone since then. And at least one of them called the reading radiologist, and until Dr Z actually looked at the scan and called him on it, he stuck by the original report.

I feel vindicated and angry at the same time.

I told Dr Z that she is so awesome. She not only looked at the actual scan, but went back and looked again when something still didn't sit right with her. I feel like I am finally settling in with a "team", and I finally can feel secure that someone is really looking at things. I really like that she doesn't depend on the written report from someone else.

As far as the hospital goes...if anyone recalls my nightmare experience in the oncology ward last year...it was IN FEBRUARY! I don't like this emergent pattern. Yes, two in a row is an emergent pattern. I was thinking, in December, when I was choosing a Medicare plan, that I really hoped I didn't need to be hospitalized in 2013, but in my situation, hope was really against the odds, and better to plan (insurance wise) it as a possibility.

Last February was really a nightmare. I pieced together blog posts about it from texts and Facebook messages sent during my stay, but now I have the mobile Blogger app, so I am set for on-the-spot reporting. Seriously, NO oncology ward.

Here's the plan so far:

Monday 7:45 AM - orthopedic surgeon office visit
Monday 10:20 AM - lumbar MRI

Oh, on the subject of the MRI, I don't know if the RN will be there and be able to use my port. I am going to suck it up if she is not because this needs to be done. Also, I have gained a few pounds since my last MRI and I am honestly worried about fitting in the tube. I will wear the tightest spandex I have and hope for the best. Think sucked-in skinny thoughts for me on Monday.

Stay tuned...

We Miss You, Rachel

The Cancer Culture Chronicles was one of the first blogs I started following after my MBC dx. Rachel had a way of expressing what was in my heart, and made it okay for me to feel it, too; and to feel it out loud.

Fellow bloggers who knew her well have expressed their love and grief today, on the first anniversary of Rachel's death.

From Nancy's Point

From Cancerfree2b

From The Accidental Amazon

From Pink Ribbon Blues

I hope Rachel's family feels the outpouring of love today. Rest well, Rachel. 

Darkness & Isolation

I feel I am sinking into a dark and isolated place.

I feel depression's icy fingers around my throat.

I see that I am also feeling very dramatic. I am depressed, however, and feel the need to unload it on you five.

I thought I was over being forced to change oncologists, but I've shed some tears again the past couple of days over it. He wasn't perfect. His office was FAR from perfect. But he knew me, and I knew him. I knew that I could push back on things I didn't want to do, and that it was okay to cry in front of him. He knew I could cry and laugh at the same time, and he knew how scary my entrance into the metastatic world was back in 2009 with the whole hospital/almost dying thing. He knew my file because he is the one who wrote it.

I woke up Friday morning in such pain. I hadn't slept but about 3 hrs the night before, so that, coupled with the pain, was more than I could push through to get dressed and drive across town to have my blood drawn. So I called in tears to cancel. I'm not getting any warm fuzzies from the front desk at the new office, and I didn't have the presence of mind to ask that the nurse call me back about rescheduling. Insomnia/lack of sleep are the fastest route to "over-the-edge" for me. 

I would cave so quickly in the MI-5 (Spooks) torture scenario involving sleep deprivation. I'd turn into a raging, sobbing lunatic, and they'd either shoot me or chuck me off  a cliff themselves.

So I've only so far had one visit to this new oncology office. Part of me fears it is too good to be true.

Maybe I watch too many movies, but it feels like one of those scenarios where something seems really good going in, but once you've committed, you find out they expect you to kill babies and worship the devil.

Okay, I definitely watch too many movies. But think back to school days. It's like you've been at the same school your whole life. You start high school with the same people. You know the grounds, you know the routine, you know where to sit at lunch. Then your parents up and move and force you to start over, with no warning, in a brand new school, new school district, new town. New friends, new teachers, new administrators, new policies.

I feel adrift, still floating in the unfamiliar.

And something has got to give with this pain. Time to stop watching it, time to stop down-playing it, time to stop avoiding scans, and time for one of my doctors to take the reins and figure it the hell out. I meant not to let myself get to this point again. Last time I gritted my teeth until it became unbearable, I ended up in the hospital/torture chamber/hell that made it even worse.

I have a follow-up with the radiation oncologist on Wednesday. Same time of day as the church meeting I couldn't get up and dressed for today. Maybe I'll go to bed with my clothes on, so I can just get up and go. I don't know why I need this follow-up with her. It's been six months since the last one. Almost a year since my last radiation treatment. And seriously, I should probably go in having just had scans. I did have a PET in December, but it feels like there have been changes. Maybe the problems need an MRI to show up.

I feel  like no one wants to be my go-to for the non-cancerous, but probably caused by the cancer, problems that I have with my spine and hips. I feel like I need to bring another specialist into the mix, because my current specialists aren't broad enough, and my PCP is too broad. What is a doctor who specializes in bones and spines and hips? I know there are orthopedic surgeons, but I don't need surgery. Is that who I need? Are they just orthopedists, too, and not solely surgeons?

And don't they spell it differently in Great Britain? Orthopaedic?

Back to my dark place of gloomy isolation, which was really my reason for logging on this morning. When I was working, I saw people every day. I had a core group of people who were my micro-society. I actually used to have some friends too, for actual socializing. Since the diagnosis of Stage IV, since I've stopped working, since I have cancer that will kill me and attitude to go with it, I have no people. My daily micro-society is gone. Going out for fun times is over. Getting invited out for fun times is over. My world is reduced to my immediate extended family, whom I rarely see, and who almost never come to my house, my son, who lives with me, my cat, one neighbor to whom I speak, 1 friend who visits, and church.

My Ward (i.e. church congregation) is my entire social and societal world, in that they are the only group of more than 2 people I see on a regular basis. This pain has made it difficult for me to get to meetings. Between that and not wanting to risk the flu with my slightly suppressed blood counts, I didn't make it out from Christmas until last week, and then again today I did not make it. Getting dressed and ready by myself is difficult, because getting from one end of the bedroom to the other is difficult, and that is not all that is entailed in getting up, dressed and ready to leave the house. Last week when I went, I sat out in the foyer and only stayed for the main worship service, avoiding crowds, small rooms and potential virus-carriers.

Don't you just hate it when the point of a blog is clearly in your mind as you use the bathroom and get dressed, but when you get to the computer and start typing, it somehow gets lost in the whining and complaining?

I think part of my point is that missing church is contributing to my feelings of isolation of late.

I don't know why this definite depression (not just the lurking, simmering, always just below the surface depression of usual) has reared it's head. It seems to come with difficulty with sleep and an increase in RLS symptoms. I take the only antidepressant we found that did NOT aggravate the RLS, so upping the dose is out of the question, as is changing or adding to.

 So what were my points? I'm depressed & my pain is worse. I have a new oncologist who seems nice,

but all is not back in the groove.

Ch-Ch-Ch-Ch-Changes...

I know the five of you who read my blog are waiting at the edges of your collective seats for more news of my doctor dilemma. After stewing and pouting for an additional two weeks, I think it is time to face the changes.

The stream of warm impermanence...

I'm pondering that for a moment here. The stream of warm impermanence. Yes, my heart is still mourning the loss of my dear Dr. P. And no, I haven't talked to him. That seems to be the pattern for men I love...no good-bye, no closure. I'm putting it in a box though, and tucking it up on a shelf. I have to move on.

I had a consult with the new oncologist. I don't know what a consult is supposed to be, this felt more like an appointment, but that's okay. The office in general feels far more patient-friendly. The nursing assistant (?) who conducted me to the exam room and took my vitals recognized me and turns out she used to work where I had my initial radiation done in 2006 and was the one who would call my name and conduct me to the torture. Very sweet that she recognized me. It took a minute for the synapses to connect, but I finally remembered her. She was the best part of that office and experience.

Side bar: the place where I did my initial radiation was an office of the corporation with which my first oncologist's practice merged, and for whom my new doctor used to work.

I say corporation rather than practice, because they are a business first, and doctors later.

Turns out this sentiment is shared at the new office. Let's code name it Flour Wings. The new doctor, a female doctor, Dr. O. (not Oz; many more letters) is very personable and nice. She spent quite a long time listening to my cancer story from the beginning, and listening to my current aches, and my gripes about the old office. She said go ahead and start the next Xeloda cycle (which I had on hand already) and they would get it all sorted out with the insurance and where I should fill it (Xeloda has been dropped from several insurance companies' prescription formularies this year. I know. Don't get me started.)

Then they drew my blood FROM MY PORT and will do so on a regular basis. I'm waiting for a call back with my tumor marker numbers today. The nurse who accessed my port was formerly with Banner Desert (the hospital in front of which I would rather die than be admitted again), and has been with Dr. O, through very serendipitous circumstances, for 8 years (I think that's how long she said). She's very kind also. ("If you've got a port, use it!" was her comment on blood work and ports.)

The office seemed to echo my feelings about my big issues; the machine of the other corporation (we'll call them Ironworks, and my old onc's office before the merger we'll call Dessert Onc, because let's face it, my onc was yummy), drawing blood in the office, patients being the reason they are there. I didn't ask the doctor some things that I wanted to, because I hadn't made a list and I am mentally very easily side-tracked. I have another blood draw in two weeks and will ask the nurse, and then ask the doctor when I see her again two weeks after that. PET scan probably after that.

I am just curious to hear their approach to metastatic cancer, stage IV, death in the cards from the reason for which they are treating me. I declined to see a doctor at the big Cancer Factory in town because I had met her previously at an event and found her to be very pink ribbon / cure / denial -ish. I suppose I should have met her and seen the set up also, but I was ticked that my new insurance's list of doctors online is not up to date, and I'm SURE that the Cancer Factory must have other doctors besides this one D.O. who treat breast cancer, possibly even someone with more experience in metastaticness. Metastaticity. 

I left the appointment at Flour Wings feeling like I had really found a good fit, that this was the place to embrace and feel cared for. And then another part of me piped up with how things that seem so good are often too good to be true, that the curtain comes down upon further investigation. All I can do is continue to have faith in the very high recommendation I received for them from a friend and current patient who is a retired nurse, and see how it goes. It's not like I signed a contract. It's just that after the emotional beating I've taken over the past year with the old office, my jury is hesitant to hand in the verdict just yet.

So I'm going backward through the alphabet of oncologists, from Dr. P to Dr. O. I don't know if there is a Dr. N out there, so I hope this fit holds up through the wash.

How do you "interview" a new doctor?

What questions should I have in mind to ask them next time?

Happy Damn New Year - Update

Thank you to those who left comments on the last Happy Damn New Year post. The indignation, support and occasional swear word were awesome; I've re-read several times and feel bolstered every time by your understanding and outrage at the situation.

I haven't solved anything yet, though, and I'm not okay.

On Friday, that fateful day, the nurse in the infusion room who broke the inane policy news to me, told me that they would arrange for me to have my blood draws in the outpatient center at the hospital. I told her I didn't want to go to the hospital next to them, (the reasons are several) and she said she would call the hospital near my home, at my request.

I wasn't sure if she would actually make that call, since after my appointment it was discovered that I was no longer a patient there.

A nurse/scheduler called me yesterday, from the hospital near me, while I was in a support group meeting (ironically at the hospital near the doctor where I am no longer a patient). Her message said she was calling about lab work orders from my doctor to be drawn there; call her back to schedule.

I haven't called back yet. Here is a list of my reasons.

1. I'm stubbornly refusing to DO blood work this week, Xeloda protocol be damned.

2. The doctor who ordered the labs is no longer my doctor, so what are they going to do with the results when they get them anyway? 

3. I'm afraid the hospital won't be nice about this whole request. I don't like it when the medical community acts "put out" by patients. 

I should re-play the message and reevaluate her tone. Perhaps I was over-reacting in my initial impression.

4. I don't know how my insurance (which is new) will deal with blood draws at the hospital (which is a new thing for me). 

5. I don't know where the outpatient infusion center IS in the hospital, and it could be a good walking distance, of which I am really not capable.

Did I mention I don't deal well with "new" or "unknown"?

I have an appointment to see my Primary Care Doctor (PA) on Monday. She will give me a few moments of coddling (like she always does if I need it) and sympathetically allow me time to cry (like she always does if I need it) and be completely understanding and helpful (like she always is).  Then she will help me put the pieces together and formulate a plan.

This is why I went through so much trouble looking for a new insurance plan where I could keep her AND my oncologist, and why, should push come to shove, keeping her was my top priority.

Well, push DID come to shove, but AFTER the Medicare open enrollment period was over and it was too late to make any changes.

I'm not sure if the blame for the split between my oncologist and my newly chosen insurance company lies solely with either one, suffice to say it was, of course, over money. The fault for the faulty info disseminated out to brokers and not updated during the open enrollment period when changes were made last minute IS definitely the fault of the insurance company. This does't put a very sweet taste in my mouth for them, going forward this entire new year.

I awoke this morning after a bad dream about being stranded and helpless to the realization that I could only be stubborn about blood work for a very few weeks, because I need a port flush in three weeks. DAMN.

But Cynthia (my PCP-PA) will help me sort it all out. She'll talk with me about doctors, and blood draws at the hospital and the painful bump at the base of my spine. Maybe I'll get my blood drawn at her office from my vein (which I can do like once every few months with minimal melt-down and hysteria), but not Monday. It's my personal protest.

And here's another thing...I'm not even sure my former-as-of-Tuesday Oncologist even personally KNOWS yet that I am no longer a patient there. The person who informed me, via phone call, during  my Chinese food on Friday, is in the insurance/financial department. She said something along the lines of "We'll need to get you  referral then", but I'm not sure that means the doctor will even be involved or informed. Then I called Monday to request a copy of my last blood work, a Rx for pain meds be called in, and that the Rx for Xeloda refills be faxed, "since this is the last day that he is my doctor".  His assistant called me back to very cheerfully tell me this had all been done. A little too cheerfully. Normally she doesn't even call back same day, but maybe she took it to mean "since this is the last day of the year". People don't always listen closely.

Either they are all a little too happy happy politey now that I'm NOT a patient, and doctor doesn't even KNOW yet, or none of them, including doctor, gives a rat's fanny that I've been cut off like this. After seven effin' years. With no warning.

I'm think I'm over the initial grief of the sudden painful break-up with no good-bye. Not sure if I'll ever get any closure with him. Not sure if I'll send a card or a note. I would be very angy if that were the way he found  out, and had seen nothing come across his desk internally.  I would be very hurt if he didn't actually end up caring either way.

The practice with which his practice merged last year is a big, impersonal, money-over-patient care, BUSINESS machine and that office has been a hot MESS all year. There is so little communication between the infusion room - front desk - doctor's exam sides, that I wouldn't be surprised if they haven't taken my February appointment off the books.

I am in no way sad to be leaving the practice business.

I am stressed to the breaking point over the transition. I awoke *this* close to losing it this morning.

The sobbing dark place I avoid because it's hard to climb out of for me. I cry. I cry plenty. But I avoid the hard sobbing because it is so emotionally painful.

What I awoke feeling this morning was cornered animal panic.

Did I mention I don't deal with change or the unknown well?