Friday, December 2, 2016

Breast Cancer Idiocy

First day of radiation treatment. I look like I'm about to make a run for it which is accurate. Radiation is frightening to me. Something about not being able to see the laser, see the treatment and having this machine moving around you just scares me. I'm sure I'll get used to it but right now.... I hate it. #radiation#radiationmondaysucks #stillfightinglikeagirl

This is a picture of Shannen Doherty, from '90210', as she starts radiation for breast cancer. Why do I call this idiocy? Her business managers allowed her health insurance to lapse. She had to sue them. Can you believe that?

What competent person would allow health insurance to lapse when they were responsible for other people's insurance.

A cancer diagnosis is stressful enough but if the 'moron's (and I use the term loosely) let your insurance to lapse, that would be insanity. Even though insurance regulations have changed so that the pre-existing condition clause is no longer legal, who wants that extra burden on you as well?

If you think what the costs of breast cancer treatment can amount to, that could bankrupt just about any one without insurance.

My message to Shannen: I hope you sued the pants of those idiots. And yes, you can make it through breast cancer treatment. Hugs to you!

Thursday, December 1, 2016

Expectations vs. Abilities

Sometimes expectations exceed abilities. But the real problem is when other people's expectations of me exceed my abilities. For example, last week we saw family friends and agreed we need to make it an annual event. It was suggested to me, actually I was told, that we should alternate hosting and my husband and I should host next year.

Um, that doesn't work for me.

I have major limitations on what I can and can't do. I do not go out much at night because I get too tired. We don't entertain much again because I get too tired. Or end up in pain.

No I am not meeting for drinks at 9pm. I am going to be in bed by then. No I am not going for a little walk because you want to. But we could go out and have a cup of coffee or you could come here and we could have tea. Anytime we plan on doing something, there always have to be an out - can I cancel at any time because I need a nap or to lie down.

I am learning to manage my expectations regarding my abilities, but it is clear I need to learn better how to manage other people's expectations.

When I worked, I was a big fan of managing up. This is where you train your manager to understand what you do well and what you are like. It is clear I need to learn to manage my friends and family. No one more trip down or upstairs is not what I am about to do anytime soon. Nor, once I have said I am exhausted, I am not going to stick around for another cup of tea. I am heading home to lie down.

I feel like a recording when I keep saying 'no' but I will have to keep doing so until they get it, which may be never. In the meantime, we will not be hosting an evening get together next year. Maybe during the day, unless I need a nap

Wednesday, November 30, 2016

Post Cancer Survivorship

So Becky over at BC Becky blogged about developing her post cancer survivorship plan. (Personally, I hate the S word but will suffer through it for this blog post, using it as Becky's word not mine.) Other people call it their new 'normal'. I have found it very elusive. And basically think its a crock of sh*t. However this morning I started thinking (which is dangerous) while reading Becky's post.

I have no way of reaching a new normal because I was living my new normal, post cancer since 1981. I have no way of knowing what it would be like to be an adult without cancer since I was 19 and in college at my first diagnosis.

I always forget this. I am not sure how I am capable of forgetting this. I think I keep going on the bandwagon of let's find our new normal. But I was already living the post cancer 'new normal'. This begs the question is it possible to reach a 'new normal' for a second time?

Along with hating the S word I also have a problem with the blankety-blank 'new normal' concept. But in this case, I may have found the reason why I hate this so much because I have been living it all along.

So this begs the question, what would I be like without cancer? I have no idea because I never really had the change. So you are stuck with me and my post cancer self.

Tuesday, November 29, 2016

I Can Be Such An Idiot

Let me tell you how much:

  • Saturday I was at a craft show. At the end when I was packing up, I could not find my keys. Anywhere. I dumped out my purse twice, looked through everything I packed, checked all my pockets, several times. I was going nuts. I couldn't find them. I asked the few people that were left to see if any keys were turned in. Nothing. Finally, I was calling AAA and dumped out my purse again, and there they were. Talk about 45 minutes of stress!
  • Yesterday while leaving a doctor appointment I pulled out of a parking space and clipped the car next to me. In front of the owners. My car only got a corner broken off one of the hub caps. Their car has a scratch on the bumper. They are going to see what the damage is going to cost and get in touch with me. I was mortified. How can I clip a car when I am pulling out forward of the space I backed into. MORON ME!
  • Today I went shopping and after I was done and paid for my stuff, I couldn't find my keys. Again. I dumped out my purse again. I checked all my pockets. They weren't there. I asked at the desk to see if they turned in by anyone. The manager was helping me look for them. No where. He said I should leave my information at the front desk and they would contact me if anyone found them. Then I realized that maybe I left them at the register when I paid and I went back to check. They weren't there. But someone had found them outside and turned them in.
So how much of a moron am I? I blame chemo brain, fibro fog, and anything else I can think of in my tiny brain. 

I honestly believe that my ailments and all my medications cause memory and brain problems. Never mind aging, even though I am still 36. So if you want to be brainless, get ailments... They make life so much fun.

Monday, November 28, 2016

Self-Induced Diagnosis

Over the summer, I noticed (I thought) that there were a couple of moles on my face that were getting a little crusty from time to time. I resolved not to make a big deal out of them but to make sure I asked my dermatologist about them at my annual skin check. In the meantime, I should forget about them.

Of course I totally forgot about them because I have no brain these days. Then a few days ago I noticed they were a little crusty and reminded myself to ask my dermatologist. In the meantime, I self diagnosed myself with skin cancer, probably melanoma, Stage IV of course. I am so smart.

You wonder about this. I am an educated person. I know how to be rational and sane and take a pragmatic approach to my life, and its medical disasters. I have my share of medical ailments and medical disasters. I am not due any more.

But once that cancer crap gets in your brain, its hard to stop self diagnosing with more cancer crap.

My dermatologist said they were nothing and I don't need to come back for another skin check for a couple of years. My poor brain.

Sunday, November 27, 2016

Pre and Post Cancer

There is a picture of me around here from back when we were dating. My then boyfriend-now-husband asked me for a framed photo for an occasion birthday/Christmas done by a professional photographer. So I went to a local studio and had a picture done where I look young and healthy. The picture has been some place packed away for a while but now is featured prominently in his office, also know as our second bedroom.

As I walk by that picture these days, more frequently now considering where it is now positioned, I contemplate, me post cancer. In the picture I have long hair with natural blonde highlights. I was a good thirty forty (lets be honest) pounds lighter. I also look happy, healthy, rested, and younger (well it was 12 or 13 years ago).

But what really strikes me in the picture is changes that have ensued. Since then, besides getting married, I have been through a cancer diagnosis and the ensuing roller coaster, gall bladder removal, numerous back procedures, and diagnoses of degenerating disks, fibromyalgia, and rheumatoid arthritis. I have also battled things like depression (and you wonder why?) and anxiety (figure that one out).

At the other end of this ordeal, I am fighting the battle of the bulge in a serious manner. My hair some how lost its ability to get natural blonde highlights when it grew back after chemo. I now keep it short. I used to have long hair because I was too lazy to go to the hairdresser regularly.  I never used to get my nails done, but their importance grew after I lost several in chemo.

The pre and post (second) cancer me are very different. My life has changed in many ways. I am happily married, I do not work (because of my health). And I cope with my physical limitations, which are not all due to cancer.

We made big changes in our lifestyle. We moved further out from the city because I don't work and I needed one floor living. This was a very positive change. In addition, I have focused on learning more crafts - crochet, knitting, and now weaving. I also started my knitting group at a cancer support center, another positive change. I need to focus on more positive changes in my life.

My life is so different than what it was. The good changes are getting married, living in a one floor house, and learning to be more creative. I wish I had not gone through the cancer crap and other medical sh*t.

I do not consider this a new normal (that whole concept is inane to me), which was supposed to be my life one year(!!!) after cancer. This is my life. I can look at the picture of the younger, healthier me, and wish I was still as young and healthy, and that is it.

Friday, November 25, 2016

Holidays with Ailments

Healthy people have a holiday celebration and they do things like: cook, socialize, eat, socialize, eat more, socialize more, eat more, socialize more. Me? I do things like: cook until my back starts hurting, lie down for a while, cook more, delegate, delegate more, eat, socialize briefly, lie down for a while, eat more, socialize more, fight off sleep while lying down, eat more, socialize more, lie down more, send off guests, sleep, wake up, socialize, go back to bed until morning.

Yes, I had to take breaks to lie down during the day yesterday. I had to take more pain meds than usual. I almost fell asleep while we had a houseful of guests. I did fall asleep while my siblings were driving home relatives and my niece, nephews, and husband were watching a movie. I got up and socialized more. Then I finally went back to bed and slept for nearly 10 hours. 

Today my back hurts at the place my doctor (who will probably be replaced soon) doesn't think is painful. Why am I not surprised? I was happy to host Thanksgiving dinner but with ailments its not as easy. I can't stand up long enough to cook for so many. I need to take breaks and rest. This also means that I have less time to socialize with family members. 

I guess what this really means is that my life has changed and I don't get to do everything I want any more (I am glad I 'finally' figured that out..... Call me slow.)

But it was enjoyable. I just need to learn to remember to plan my abilities better.

Wednesday, November 23, 2016

I Was Too Busy To Blog

Its the truth. I was too busy to blog. Tomorrow we are hosting Thanksgiving dinner for the first time. My mother, after 45 years of hosting Thanksgiving, has decided that she wants to go to someone else's house for dinner. Now I do admit to doing a fair amount of the cooking for the past 30 years or so, but its the first time at our house. In our new house with its big living room and open to the kitchen dining room which is why we now can host. In our new house with all my health ailments.

That's okay, my husband helped a lot and I can always take a nap if I get tired. Since I have cooked, I do not do dishes.

So anyway, today I have:
  • brined the turkey
  • chopped celery and onions for two kinds of stuffing
  • chopped vegetables for veggies and dip
  • made a pecan pie
  • chopped the Brussels sprouts
  • Set up beds for four guests after finding the sheets, pillows and blankets
  • Went to Michaels (for a frame for the picture that should have gone on the wall weeks ago), the grocery store (for butter - you can't make Thanksgiving dinner with two sticks of butter, bagels and cream cheese), and the drugstore for my two prescriptions that I needed. 

I still have to:

  • Make the dip for veggies and dip
  • Wash and trim the green beans
  • Set up our pill boxes for the next week
  • Order take out for dinner
  • Make a second dinner for our house guests that will show up around 9pm.
So all that being said, I am exhausted (but don't tell my brother or husband or they will start telling me what to do all the time). I need to take care of our pill boxes and go to bed early. And sleep late.

With my health ailments (and even before then), I do not do well with not enough sleep. I need sleep, I need sleep, I need sleep. Last night I was so tired I fell asleep before taking my giant pile of nighttime pills. I did wake up in the middle of the night and took the important ones which won't mess up with my morning pills (some need to be spaced out). 

But I digress. I do not want my health ailments to interfere with my enjoyment of Thanksgiving. I want to be able to enjoy spending time with everyone. After I sleep and take all my pills. And delegate more cooking stuff.

Tuesday, November 22, 2016

Its A Miracle

I have been running around like a crazy person for the last few days, and will continue to over do things all through the long holiday weekend with three days of four house guests, hosting the big dinner, and then two craft shows over the weekend.

Although I was completely exhausted by yesterday afternoon, I noticed a lack of noticeable amounts of pain. I was so tired I couldn't stay awake after dinner - in bed before 8 (and feeling no shame about it). I went to bed, did wake up for an hour or so, but feel rested this morning. I hope to take a significant nap this afternoon as well.

But pain? I have been doing pretty well. I had a doctor appointment yesterday where they asked me my pain levels and I thought about it and said maybe a 2 or 3. That is not bad for me. What was hurting? Back, right shoulder, left hip, and right elbow. But my back was being okay. I have been doing all the good things, such as taking my pills, not carrying things around, etc. But I have been doing a lot.

This is a miracle. Even though I have been exerting myself and doing what many people will tell me is too much (yesterday was one doctor appointment, one PT appointment, gym, Trader Joe's, Bed Bath & Beyond, and Best Buy), I have not been debilitated by significant pain recently. (Knock wood).

My fatigue continues to dominate my life but its nice to be (sort of) pain free. I'll just schedule a daily nap as needed.

Monday, November 21, 2016

Coping and not coping

Finally this morning I have an appointment with my meds therapist. The week I fell and was home with my 'concussion' I was emotionally a mess. I have found I do not do well with staying home for day after day.

My husband works full time and if I don't leave the house, he is the only one I see for a few hours each evening, I feel very isolated. I need to see other people at least every other day.

My socialization is planned. People need people. I think I especially need to see people and socialize. I was concerned about this when we moved out here and I stopped working.

I planned my schedule to go to the gym Monday, Wednesday, and Friday so I could go out and see people. When I go to the gym, I end up chatting with many people. I think most of there go to socialize as well as work out. Tuesdays I am home and often have lunch or socialize with friends. Thursdays I go to my knitting group.

This isn't the first time I have felt all alone and gotten depressed. But it was the worst. I think because I was home for basically a week by myself. I felt awful, was tired and had to sleep. I was not able to go places and get out of the house with out total exhaustion creeping in.

I was upset and I tried to see if I could get into see my meds therapist sooner than February. But no. Her next appointment was April. I tried to send her a message directly but didn't hear back. So I decided to call her secretary to ask for a prescription or something. It turns out she had a few cancellations and she could fit me in today.

I want to talk to her about how to avoid depression and isolation when I can't get out of the house.  I am sure with my house this is not an infrequent event. I need plans to avoid the stress and depression.

To clarify I am not a massively depressed person. But with every medical set back I seem to lose my ability to cope more and more. If I was a healthy person and able to do everything I enjoy, like hiking into the woods or skiing or..., I might be less depressed.

Thursday, November 17, 2016

Yes I Do Have Back Pain In The Middle of My Back

Yesterday I went back to my pain management nurse practitioner yesterday. I felt like it was pulling teeth to get her to admit that there might be an additional source of pain in the thoracic area if my spine (that's the middle part - lumbar is the lower part, cervical is the upper part including your neck).

She saw my x-rays which my rheumatologist pointed out to me as showing possible sources of pain. She didn't think they could be causing that much pain. She did push on my back to see if it hurt (how thoughtful of her). She nearly pushed me across the room as she pressed on my spine. Yes it hurt. A lot.

Finally she agreed to recommend that I have an MRI on my spine to see if anything had changed in nearly 8 years. Its about time.

I keep saying I get new areas of pain and pain management seems to want to prescribe medication to me and give me injections. They never seem to want to look at the areas that might be causing pain. Whenever I say there is new pain, I get these responses "its your fibromyalgia in that area", "its referred pain from this other pain", "there isn't pain in that area".

I think that there is new pain obviously and finally they are going to look at what is going on in my back. At first the nurse practitioner wanted me to come back and see her after the MRI, but then she said I should see the doctor himself and see if he can do trigger point injections there to resolve the pain.

So now I have the date for my MRI (after Thanksgiving), do I want to call my pain management doctor or do I want to try a different pain management doctor to look at the results? A dilemma for sure.

In the meantime, I am sitting down because my back is hurting a lot in the middle where I have been telling them about.

Wednesday, November 16, 2016

Health Care Crap

So we have a new president elect (who shall remain nameless). My biggest problem with him is that he claims he will dismantle the Affordable Care Act. This is a serious issue. I do not give a rat's a$$ about political partisanship or how Hillary is a liar or whatever label you want to put on anyone. I only care about health care for those of us sick people.

What if health insurance was taken away from all of us chronically sick people? That would be murder essentially for many people who can't afford their health insurance and are seriously ill. And if they don't die, they would be bankrupt.

This is a serious problem. I am not sure how health insurance could be taken away from someone once they get it. But if the insurance was cut back so it wasn't really providing the needed coverage, that is different.

I see this as a fine line that needs to be watched carefully. I can understand if he wants to reorganize it and change how it is funded, but not how he could change the actual coverage and financial benefits it provides.

Hmmmm.... I will be watching.

Monday, November 14, 2016

Germ Exposure and Common Sense

I had a great craft fair on Saturday. I had a table at a busy craft fair and had some great sales. Between sales I chatted with the women in the booth next to me. Both our booths were set up so that we squeezed behind them on the same side. They had several friends stop by and chat with them for a bit.

One woman pushed right up front to talk to them behind their booth, with her cold and told them loudly that she had a bad cold and then about one of her chemo patients who had also stopped by the booth earlier in the day. She sneezed a couple of times while there as well.

I was appalled that she was out at a craft show with her cold. She had shoved into the booth with her germs and sneezed on people. And she was a chemo nurse and treated patients while sick.

And she sneezed on me. With my compromised immune system.

I know, I know that I am the one with the compromised immune system that is way more susceptible to germs than the average person. I know that I am also the one who goes out in public and increases my risk of being exposed to germs. But I do expect that most people will have the common courtesy and common sense of staying home when they have a cold.

I used to work with a guy who would come to work when he was sick. And he didn't seem to care if he shared his germs. I finally complained about him because if I got a cold I would be sick for two weeks.

Yesterday I was supposed to go to a friend's funeral but I woke up feeling like I was coming down with a cold. That meant for me I had to stay home to rest and hope I don't get really sick. Grrr. And I missed the funeral.

Where is the common sense in the world these days? Keep your germs at home please.

Sunday, November 13, 2016

Reducing Cancer Care Costs and Hospital Stays

There are two really irritating things about cancer care for me. (Well there are really lots of things that irritate me about cancer care. I could make a giant list of them if anyone really cared but today I am going to focus on two things.

Cancer care is ridiculously expensive. You can take a drug for $100,000 that might increase your lifespan for a couple of months. A single chemo infusion can cost upwards of $20,000.

And at the least sign of germs or low blood counts, you are sent to the emergency room where they admit you. That is a really stupid part. You feel like crap on a Friday night, you call your oncologist and they send you to the emergency room for blood tests and then they admit you after you sit in a room full of car accident victims and finally end up in a really uncomfortable bed with IV antibiotics. Really not a good idea.

The second annoying issue is how quickly doctors throw more drugs at cancer patients. Here, take this too and this and this and this. Let's get you some skilled nurses at home to help you with some fancy new equipment. Each one adds another triple zero item to your bills.

(I could rant on about the annoying part of going to daily radiation for weeks and weeks.)

But finally there are two new ideas that are focused on reducing cancer care costs and hospital stays. (Its about time.) Anyway here are the two new ideas:

Oncologist Dr Barbara McAneny in Albuquerque, NM looked at how her cancer patients dealt with hospital stays and ER visits due to low blood counts and other chemo side effects. She convinced the rest of her practice to provide weekend and evening availability for shots. Then they added other 'off hour' services such as nighttime appointments and same day availability. This resulted in major cost savings and reduced hospital stays. This practice is now being expanded to other clinics across country.

Next, this program above has been expanded even more after July 1 of this year:

"The Centers for Medicare and Medicaid Services has long talked about alternative payment models (APM), and now they are a reality: as of July 1, CMS launched its first APM, for one of the priciest specialties in healthcare, oncology.

The so-called Oncology Care Model (OCM) is now in play in 195 practices across the country, and will last 5 years. Late last June, just before the OCM went live, CMS Acting Administrator Andy Slavitt tweeted: "Big news fr @CMSGov this morning. 3,200 oncologists (double the target) signed up 4 new payment model -- 25% of all cancer care smarter way."

In a nutshell, in addition to traditional E&M codes, the CMS is paying oncologists $160 a month per patient undergoing chemotherapy for 6 months, starting with the patient's first dose. Oncologists are supposed to use that money to set up programs that effectively manage patients' chemotherapy complications "and heighten the focus on furnishing services that specifically improve the patient experience or health outcomes," the agency said.

A key element is that practices must provide "patient access 24 hours a day, 7 days a week to an appropriate clinician who has real-time access to practice's medical records." This and some other aspects of the OCM were drawn from the "Come Home" program pioneered in Albuquerque, N.M., by oncologist Barbara McAneny, MD.
"

Okay, who wnts 24 hour access, 7 days a week during cancer treatment? Me! Look at smart business practices being applied to cancer patients, reducing care costs and hospital stays.

Friday, November 11, 2016

My Body Needs A Pep Talk

I saw my rheumatologist yesterday and she was impressed with how much is going on with me medically these days and none of it was related to rheumatoid. LOL.

Actually, its not very funny. She looked at my x-rays and explained a bunch of stuff to me. Basically each vertebrae in my back has issues around its edges and the bone spur in my neck is pressing on the nerves which cause problems in my neck and shoulder, exactly as I am feeling. She was also concerned with the osteoporosis in my spine.

However, this all sucks.

My body is not doing its share. It needs a pep talk to regroup. No more ailments. Especially ailments that usually occur in the over 80 crowd. (Personally I am sick of the phrase 'you are so young to have this'.) It needs to stop developing new ailments. It also needs to heal from my damn 'fall' last week. I still don't feel right.

I am skipping the gym again today. I was exhausted yesterday and all I did was go to my doctor, visit my mother, and go to my knitting group. I even left early and went home to rest. I have another craft show tomorrow and am running out of oomph.

So body, listen up: No more ailments. No more long healing times. No more injuries. Start getting your act together and no more whining. Thank you. The management.