Annotated Journal re: Deciding to Live...?

This runs 5/15 through 6/13. It's a roller coaster and I'm not a fan of carnival rides...

5/15/15

          Found out late today that I do have "a few cancer cells”(swear to god, that's what she said) but now they want to do a dozen other things to me and have me meet with two different oncologists (radiation and medical) before I even get the surgery...to plan to radiation and chemo. NO! I'm going to tell her what I want, in person, and hope for the best. She's a nice lady but she completely disregarded what I was asking for over the phone, telling me what she wanted and what she has arranged for me. I may get fired by a doctor again!

I was only planning to live another 15 years max...modern healthcare may be going to help shorten that to 15 months if I can't find someone who will remove the breast or the lump (really, that's all I'm willing to do) without all the folderol! It was never my intention to fight cancer if I got it. Guess I'll have to fight insurance liabilities instead to get what little treatment I'm willing to have.

I had a wonderful reflexology session today. All is well, except healthcare attempting to intrude upon my health! But Mike is totally supportive and I know that my best friends are, too. I am tired of this whole thing and don't want to talk about it anymore. Didn't take me long to get done with healthcare. It's a conveyor belt I'm not willing to stay on.

OK, well, now I’m no longer scared…I’m pissed. It’s as if they’ve said, “The part of your life where you get to do what you want…is over.”

5/16/15

         I'm just unwilling to be scared into doing things I don't want to do and/or agree with. Mike has swung WAY in my direction after our long talk last night. Up until then he'd pretty much been a "do what the doctor says" ...at least he was when I met him...but last night we had a heart to heart and now he's fully supportive of my choices, whatever they are.

And he is absolutely unconcerned with the cosmetic issue of missing breast or portions thereof, as am I. There may be some slight grief on my part, but mostly I'm just irritated with the process. And if anyone shows me a pink ribbon, I'm gonna deck them! This lesion does not in any way define me. And frankly, if I have to die to prove that...I will. Let's hope it doesn't come to that.

5/17/15

         Roller coaster between “just fine” and “pissed as hell”. At least the fear has passed for now. My body is stressed, though. 

      Also had a dream in which Davena, who died in 1979, and who, in the dream was also Marguerite (hospice director) kept reminding me that she would be taking me home when I was ready to go! OK. Ready. Set. Go! The dream was chaotic and I wasn’t able to do what needed doing, so I wanted to go home but also wanted to finish (and/or figure out) a few things. Still…I’m ready if, in fact, the dream wants me to take the hand of a departed friend (or another friend who works for hospice) and go to the other side. Always been ready for that!

       Just stuck here right now waiting for doctors to decide what other horror show activities to do to me! YUCK!

5/19/15

           Realized that I'd been grieving (textbook) and I seem to have (hope to have) reached  at least a level of acceptance. Of course I'd been in denial for almost five years while this thing (at first didn't and then did) grew, so went straight into anger (at the system, at the cost, at the doctors), followed by bargaining ("Well, I WILL do thus and such but I WON'T do the other"), depression (which was short lived and only required a long nap and a healing meditation)...straight into acceptance. At least for right now.

I'm still going to decline chemo and/or radiation, but WILL have all the diagnostics and whatever surgery is required. Mike says, "Your decision to go ahead with the procedures is a sound one Sweetie."

He's been amazing. I'm satisfied with his level of involvement and grateful for it.

So, gonna have a few more science experiments and then surgery. Then I'll be WELL!!! I believe the metaphysical foundation of this whole thing is my feeling that I was a “bad mother” for all those years. I have overcome that feeling now and I believe, strongly, that that having the lumps removed will be the end of it.

           Work has been challenging today. But a few things I could do to help. One guy came in all stooped over, leaning on a cane, moving slow. I gave him a walker and he stood up straight and zipped out of there. That's rewarding!!

LATER: OMG I’m so tired. That’s the challenging part of this whole thing. No bounce back when I get tired and I’m tired almost every afternoon. Maybe this is why people start thinking they are sick. My mind has reached acceptance, but my body may still be resisting. Gotta nap.

5/23/15

 Roller coaster! A little while ago I wanted to hurt somebody, anybody. Now, after a quick call from Mike, feeling better. I'm just angry at the whole process and at the idea of doing something I don't want to do. I've left a marriage and many jobs just because I just didn't want to do them. Now I'm doing something I don't want to do because it makes sense. But I hate it.

Still there are just enough joyful things to remind me why I want to keep going. There is nothing wrong in my world. Emotions will flare and recede. I don't want to do it, but it's the gentlest way the Universe could find to "make me" do something I don't want to. And so I will. At least for this moment.

And so it is.

LATER: A nice lunch with Margie. Hardly had to talk about cancer at all! Her life is going well and she and Dave are happy. It was lovely to see her.

        Tired of talking about cancer. Tired in general. Of course, eating ice cream probably isn’t helping, but I really do need to eat ice cream right now.

5/24/15

        I WAS going to consider radiation to follow but I'm pissed enough at the whole situation as it stands to say no. 

         Louise Hay (via the little blue book) and I agree that this is the result of poor thinking about my mothering failures on my part. I'll super-extra upwards think about my mothering abilities from this point forward! Had actually made peace with those while finishing up the book, so it shouldn't be difficult to keep thinking (and believing) that I was a good mother and give myself credit for same.

5/25/15

Lonely, sad, scared...but not nearly as much as I would be if Mike weren't here. Sleeping a lot helps me through the day and fortunately today he was nice and quiet and I took naps near him. Work will help me quiet my mind tomorrow. Mike did make me laugh out loud a couple of times today. That helps immensely.

I've just got to stay in or near the light. The living room is way too dark after lunch. But then, coming in my room to nap gets me sleep and light. Walks in the yard help too.               

I have never been this stressed before, ever in my life. Just clinging to normalcy, but barely. Today I burst into tears watching a movie. I would have just cried for a bit, but Mike turned it off thinking that the movie upset me. Bless him. He set up the New DVD player today too.

I'm very, very tired. Possibly depressed, which I hope means I'll soon move toward actual acceptance. At least I hope so.

5/26/15

SLOWLY moving forward with treatment options. Still have to have an MRI and meet with two more doctors (plus my PCP and a bunch of lab tests) before they'll even schedule surgery. Just going to have a lumpectomy. And then they want me to take some kind of estrogen-suppressing pill forever. (OK, only five years). I’m not liking this! They really should have worked harder to get this done before Mike has to leave. Between visiting his parents and his daughter getting married in early August in California, he'll just be out on the road rather than hereabouts.

But Patty has been a trooper and a couple of other friends have really stepped up to say they'll help out afterwards. My recovery won't disable me...just a sore titty and armpit. And of course, I'll feel sorry for myself for a few days while there is pain...

The main thing I've discovered is that, even before treatment starts, giant fatigue sets in. I'm functioning, but I take a lot of naps! And then sleep all night, too. Basically just want to go to sleep and wake up when it's all over. Of course I feel the same way about Christmas!

5/27/15

       My friend Linda’s brother Hunt, who is a doctor, is going to talk to me about getting myself off the “healthcare industry grist mill”! We were emailing about end-of-life things and he offered. I’ll call him this afternoon.

          I just want the operation and then I want to be left alone! Apparently that IS an option! I hope so.

 5/28/15

        At this point, I can go to the rest of the appointments alone. This must well and truly be a woman thing.

          I'll just ask friends to rotate through (and will need a driver for the trip over and home on surgery day). Both the surgeon's nurse and Linda's brother tell me there just isn't much post op pain after anyway. 

Psychic pain I can do alone. Grieving, too. Fear I had trouble with, but that is lessening each day. Patty and Mike and Linda's brother helped with that. Although Linda's brother, my new "doctor friend" did in fact say that breast cancer will either kill me or contribute to whatever does at some point, probably sooner rather than later. Most people just aren't good at facing end of life, whereas I found his candor refreshing, freeing even. 
I feared the pain, which doesn't seem to be an issue. Not afraid of death...just pain...and spiders!

5/29/15

          Patty assured me that women have banded together to get through the hard things from time immemorial because men just can’t face their women being in pain. Still, she said, we’re lucky to have them (she's been married for 45 years, so I'll have to take her word for that!) Glad she’s on my team…and Rita…and LaDonna. I’ll need a bit of hand-holding. Penny can probably drop by with food some evening, too, if I ask her.

5/30/15

          Mike will go with me to the MRI on Monday. That’s a relief. He also fixed my hot tub and put his own tools away in less than an hour, bless him. 

                              

LATER: There is a whole yard full of aster daisies this year. When they are all open, it looks like a sea of white bloom swaying in the breeze. Then they close up after the sun gets off their faces and wait for tomorrow.

5/31/15

I got depressed after lunch, pre nap...about the whole cancer thing. But post nap...felt much better. Mike spent the rest of the day being kind and loving toward me and said tonight, again, almost in passing, that he's happier than he ever has been. I told him that's what a woman wants to hear her man say.

6/1/15

           The MRI went well, but it was a challenge. I can tell you this... a breast MRI is no fun, but it only lasts 30 minutes...laying on your stomach with your breasts hanging down through holes in the thing, balanced on your forehead, lower ribs and your sternum (thus the discomfort), with your arms straight above your head. As a friend put it, "Oh, well, nothing humiliating about THAT!!?!"

Then when we got home, I had a meltdown. Screaming at my cat, abusing him physically, throwing him into the garage right in front of Mike, who was trying desperately to calm me down. I would not be calmed…had to “lose control” to get past a big element of the grief. Apologized later and we worked it out. My kitty will forgive me eventually. I was able to fix the picture that I knocked off the wall and broke in my hysteria.

It’s odd…I’m scared I’ll die AND I’m scared I won’t. 

Can’t seem to find the win/win scenario here. But I’ll take the next step or two and hopefully today was the end of that losing control part of the grief. So tired of all this…no stamina for healthcare.

I asked Mike if he’d ever done this sort of support for anyone and he said no. He did make me laugh a couple of times and did his best to comfort me, but OMG I really needed to throw a fit and didn’t really want him to see it. He did, though, and so far, we’re still together. He says he’s worried about when he leaves if I will be OK. 

It will actually be good for me to be alone for a while. 

6/2/15

Having the MRI yesterday made it real, too real. Sent me into a deep grief and absolute rage. Happily we all survived!

Patty asked me to get “tips” from our friend Marna who is recovering from brain surgery…well, I'm NOT doing the things Marna did (eating pure foods, drinking those green shakes, getting enough exercise, having twenty people to check on me...honestly, the Facebook notes were fast and furious and, after seven weeks, have just begun to taper off!) I am overwhelmed by this and doing my best just to hang on, literally. And some days, like yesterday...I can't.

I'm grateful that Patty and Rita and LaDonna (and little pregnant Shana) are staying in touch and offering to help. Mike's so strong (and to a certain extent, flippant about it all) that I'm calmed and amused.

I've begun to have headaches - a first for me - stress I'm sure, but definitely not something I needed added to my repertoire of aches and pains. Will call this afternoon for a massage. REALLY need one because lying on the MRI table gave me aches in places I've never had aches.

I want to throw up and I want to eat constantly. And, of course, I want to die. Just a nice, peaceful, quick, boom, you're gone death.
BUT FIRST I want to give my stuff to my friends, so I guess I've got to hang on a little longer. Depressed you say? Well, hell yes (fortunately off and on)! It's part of grief and may not pass until I'm actually post op...but I'm still going to give my stuff away, life or death. Books and knickknacks first.

The surgeon’s office ordered everything in the wrong hospital. So we’re starting over, including the appointments with Oncologists, plus the pre-op clearance with my CPC (new term I’ve learned.) Yep, healthcare definitely makes me lean toward just dying instead. 

Must admit, it will be easier to work on my spiritual and metaphysical healing once Mike is gone. His marvelous big energy takes my entire focus. But today was good and I'm OK.

           Since the doc's office screwed up my referrals, I’m just gonna enjoy my appointment-free time with Mike, Shana, work and reflexology. Maybe see LaDonna. I’ll catch up with all my meditation next week while Mike is on his way to see his parents.

            Even though we had already gone to our separate beds, Mike just opened my door to tell me that he’s happy with our relationship. Then said, “night, night.” Made me smile. I’ll be happier when I can get off the roller coaster that has nothing to do with him, but interrupts our flow.

            A quick note from Rita reminded me that there is a reason why I’m not getting prompt service from the docs.

Must be Divine Order.

6/3/15

                I got the results of several tests and now know (although I always knew, so really, have convinced the doctors via evidence-based medicine, blah, blah, blah…) that it's just the one spot and only need a lumpectomy. I will not have chemo. I will not be having radiation, no matter what they recommend (and they DO recommend it). There are several reasons why, the most important of which is that I DON'T WANT TO! My heart, mind, soul and body agree.

Second most important, it "may" add two years to my life expectancy (or not) so that I would live to be 85 instead of 83. I was only planning on living to be 80 anyway, so win/win! It took me a long time to find win/win out of this since I didn't want anything to do with modern medicine anyway and they just kept screwing up and/or costing me time and/or money!!

And modern medicine (paperwork and other crap) is a mess, even to good, smart people who are trying hard…so avoid it at all costs! Really, truly...being sick is better than going to the doctor! I made a decision five years ago not to look at the bump/lump and have lived a nice healthy, uncomplicated life since...until now. The treatment could be worse than the condition, except I'm declining most of it. Everything except a "simple lumpectomy" (all the docs call it that) and then back to normal...denying that there is anything wrong with me! If I can keep that up for another ten or 15 years...I'll die healthy! Ha!

6/4/15

In order to get the MRI, I had to have a kidney function blood test. All is well there. And today I'll have about half a dozen other (pre-op) tests and find out liver function and get an EKG. Things I wouldn't necessarily have checked. Sometime after the surgery I'll have the Welcome to Medicare tests done while they are free. Then I will decide which conditions to "treat" and which to ignore. Planning to ignore some, obviously, but will address some.

6/5/15

Next door is an estate sale...selling everything. The house is not very fancy...kind of boring inside. But then, people with purple walls think every other house is boring!

I tried, once again, to get the surgeon to go forward with the surgery sans the meetings with the oncologists (especially since it was her office that dropped the ball). She refused. Nicely but still a refusal to do what the patient would like.

6/6/15

        Mike left. I was sad for a little while, but the facts are the facts: he has things to do and I need to get ready for surgery, sans his help. I’m now scheduled for June 23 and still trying to find a ride. I can do that, and focus on that much better by myself. Also do healing work when he’s not here. 

        I got a great round mirror and a nice vase for $11 at the next door estate sale. Yesterday I got an old beat up (but really needed) wheel barrow for $10. Because I moved my fancy round mirror into the living room, the bedroom only had the old, small round mirror. Now I can replace it with a much larger one. 

        My cat had really bonded with Mike in the past little while…even slept with him. He may miss Mike, too. I’ll have to give him a little extra TLC.

6/8/15

        I slept nearly all day yesterday, then all night last night. My body is much more tired than my mind now. Seem to be awake today, which is good. Gotta see a doc, but then…a massage! Yahoo!

        My lovely little house is clean. I'm saving my alone time.I haven’t even reached out to my women friends, except Patty, to be sure she could tend to me on the day of surgery. I’ve just been enjoying my solitude…and sleep.

         I’ve got a couple of weeks to gear up for surgery, mentally, emotionally and physically. The very, very high blood sugar reading will need to be addressed after all this is over. Looks like a steady diet of chicken and veggies (sans rice) for me! But when the fear hit, sugar was suddenly my drug of choice. Glad that’s over. And it was a screeching halt, I’ll admit. I thought I could still have the occasional cookie…but alas, doesn’t look like it!

LATER: Good visit with my PCP I like her. She’s going to open her own office in the fall, so I offered to do a news release for her. We’ll stay in touch. That will work out. She just writes “Patient declined” when I don’t want a test, so we’ll get along.

          Then I had a marvelous massage and/healing with Beverly. She’s amazing and beautiful. We are working on the cancer being “gone” by the time of the surgery. I’m seeing her again next Monday. Hope to see Rita again the Monday before the surgery.

6/9/15

         I worked from 9 to 6:30. Pretty tired, but got 4.5 extra hours! That will help with my time off for surgery. I’m really tired, but wanted to say that Mike sent a note with a heart emoticon on it. That’s a first. He had to go to a tiny little bit of extra work, bless him. Means a lot, plus a heart  = love in my book! Thanks, Baby!

6/11/15

        Just had another nice long talk with my new doctor friend, Hunt. He helped me develop the vocabulary to ask the questions of the Oncologists. Most helpful. His consults are a wonderful asset, freely given. I am grateful.

6/12/15

         I woke up in a bad mood. Kind of a crappy start to the day. I remained whiny for hours. Neither reading nor the hot tub really brought my aura back to center. But oh, well. I’ve recovered from this lack of will to live many, many times before.

      Then I saw Rita and had girly sympathy and tea. She, like Mike, just continuously says, “Everything will be fine. Stop worrying.” Yeah, would that I could turn it off like that. This is the scariest thing I've ever had to face.

          Still not perky, but no longer quite so whiny.

6/13/15

         Just had a wonderful, noisy thunderstorm. A lovely topper for a day well lived. No angst, no anger, no worry today. Big change from yesterday.

          Also thought to run out and go to the Dollar Store or a thrift store and heard myself say, “Nope. Don’t need to shop. You’d just buy things that are bad for you (junk food) or unnecessary.” I literally spoke aloud and said, “Oh, thank the gods for you, whoever you are. Please stay living inside me!” I can use all the “voice of reason” that I can find these days.