Memories…

Watched a PBS special about memory/the brain. Perhaps I can understand slightly why Balboa didn’t want to publish my memoir. There is a chance that some of what I remember isn’t entirely “true” though it is my Truth. Each of us experiences reality differently and though the abuses I recall have made real pathways in my brain…I’m a writer, given to embellishment.

So I’m editing my book of essays. Much less revealing of the depth of abuse, but still, a memoir of sorts. Plus, let’s face it…just writing the first book helped me finish getting over any real or imagined abuses, so win/win!

That win/win is something I always seek. Found it!

Also whereas I only felt "done" when I sent in the manuscript for the book, NOW I feel "relieved"...again win/win.

All is well. Stay tuned!

SEPTEMBER 28, 2015 EDIT

And the bad news is…

I’ve been notified by Balboa Press that some of the entries in my memoir may be considered libelous. In order to use those poems I would need to get notarized statements from the people who I mention as being abusive (or just generally awful to me) before we can publish the work. Here is an example of something they consider potentially libelous:

Best friend’s brother, Scott

Stumbles through my small, sick world

Lusty, crazy nights!

Well, as it turns out, I don’t have to have a statement from people who are dead. However, in another complication, I DO need their permission (dead for less than 70 years…) to use images of me that were taken of me as a child.

Therefore, I’m thinking I’ve learned a very expensive lesson here. Somehow celebrities can write how horrible their childhoods were, but I can’t mention the things that happened to me! I asked the good people at Balboa Press, “Then, what, pray tell, am I recovering from?” as the book becomes an uplifting tome as I find peace of mind through recovery. (I have received no response though it’s been more than  week…)

At any rate, I’m not going to publish the book. It was a book I needed to write, but apparently not one I needed to publish. I’ll make a few copies for my friends and call it good (and I WILL use the childhood images…so sue me!)

Now I’ve got to notify all the friends who went to the trouble to give me copyright permission. I know they were excited to see their images in print (so was I!) It was a long and arduous process, tracking down people I hadn’t seen in decades, but I did it. Only to discover that I would also need to ask people to admit, in writing in front of a notary, that they had been mean to me ten years (or 50 years) ago! Yep, an expensive lesson.

So goodbye for now, Little Valencia…I’ll tell your story to a select few. But your dream of having other people see that recovery is possible…is dead for now. I’m sorry, dear little hurt child. You are nonetheless, loved by me and many others.

And on another subject all together...

I've recently submitted my memoir to the publisher. It got pretty complicated after submission, but I've already paid for it, so going forward. Here's an interesting note...once I submitted it, I completely lost interest in it. It's done. So am I!

That was not the response I was expecting. I thought I'd be excited (nope), anxious (pretty intense stuff in there), scared (of the reaction of family and friends) - but again, no...or relieved. Instead, I'm just done.

I'm already putting together my next two books in my head. Much of the text is written, just need to spend time putting them in a cohesive format.

Perhaps this isn't actually another subject at all...I do want to "leave" these words as my legacy more or less. So perhaps this is about death as well. Planning for the time when I'm no longer here.

Because I've spent a lifetime putting words on paper, I can't expect anyone to ever wade through them all (I can barely read an entire year's journal myself!) So my memoir is a condensed version of the ups and down of my life. Very condensed. Written in Haiku!

My next two books are written in (1) essay form and (2) fictionalized story form. Those will be easier to read for most people. Whether I publish them or not, I'll make sure to get them into book format before long. Or Valencia Bathe will...one of us!

At any rate, I'm a writer and now things are written. That feels good in a way. Mostly just glad it's over...the book, not my life...! I'll be putting words "on paper" for the rest of my life, whether it's a day or 25 years. Nobody will ever need to wonder how I felt about things! And so it is!

Four articles of interest

Here's a place to read up on "the latest" in death and dying; four interesting posts. It appears to be sponsored by or part of PBS.

http://us3.campaign-archive1.com/?u=f254e8e727c963f12db297d6d&id=c04a302b1f

AUGUST 6, 2015

When I'm Gone by Rafael Zoeler

This is a most amazing, but fictional, story about a man who knew he was dying and left letters for his son. Most are somewhat humorous, some will give you goosebumps, but overall an uplifting experience. Take a few minutes to read it...and maybe you'll want to write a letter or two...

https://medium.com/@rafaelzoehler/when-i-m-gone-f1611ceb759f

The author says it's fiction, but it's powerful nonetheless. It's called "When I'm Gone" by Rafael Zoeler.

Not everyone gets it when I say, "Enjoy" when reading about death, but you just might enjoy this one.

We are gone without leaving...

Stephen Jenkinson is featured in The Sun Magazine with an interview on death and dying. He reminds us not to hide from death, not to hide the fact that we are dying because we need to let those we love know what death looks like. Our society has a disease of "death fear" (my term) that paralyzes us. Jenkinson says it much better than I do. Thanks to his website Orphan Wisdom for this link:

http://orphanwisdom.com/sun-magazine-as-we-lay-dying

You might want to pick up The Sun, or spend a little time on Jenkinson's website or otherwise expand your horizons on this important topic.

And here's an amazing video that may help you see end of life in a different way, too. It's a young doctor doing a rap song...don't be afraid of the music... it's a good way to reach the younger generation. And an eye opener for any age!

http://www.kevinmd.com/blog/2015/07/this-is-the-epic-rap-video-that-will-change-how-you-feel-about-dying.html

Your loved one is NOT starving...

Thanks to Dr. Scibetta for this informative article. 

A False Hope: Artificial Nutrition in the Dying Patient

by Colin Scibetta, MD (@colinscibetta)
GeriPal

My patient was dying and his family was terrified. Riddled with abdominal tumors and engorged gastric blood vessels, Mr. G, a 54 year old Korean man with advanced hepatitis B-related liver cancer would not survive this hospitalization. For weeks, he had suffered from progressive abdominal pain and distention, and had recently lost his desire for food and the ability to take anything by mouth. He had difficulty swallowing anything, and he felt like his abdomen was going to explode when he tried.

His large extended family, his wife in particular, was preoccupied with feeding him. On admission to the hospital she requested placement of a tube or an IV to deliver nutrition since he was no longer eating. She was adamant that we intervene soon, since it was clear to them that he was deteriorating and didn’t have much time. It was hard enough to watch him grow sicker with cancer, but they were not willing to watch him starve to death.

But, of course, he wasn’t actually starving to death. He was dying of cancer.

Anorexia at the end of life can be one of the most agonizing parts of the dying process for families to cope with. As one of the Palliative medicine fellows at UCSF, I am part of a consult service that is often called upon to help other doctors navigate the discussion around artificial nutrition at the end of life. Despite an awareness of what the medical literature tells us about the risks and benefits of these interventions, I struggle with how tough it is to counsel and guide grief stricken families through these complex decisions.

Is it ethically right to subject a dying patient to the surgical placement of a feeding tube when you feel strongly there is no benefit to be gained? What if if the family insists? Even within the team of providers, there isn't always agreement. My attending felt that the moral distress of the family was so grave that perhaps feeding tube placement might be reasonable as a way to give them peace and avoid conflict. But this patient was at the very end of his life, and I was not convinced.

I listened to their concerns and assessed their understanding of his disease (they knew he was dying) before presenting them with information on what we know about artificial nutrition in patients with advanced cancer. I emphasized that there is no evidence it improves survival, quality of life, nutritional or functional status and may in fact hasten death, if long term complications arise as they do 32-70% of the time. Both tube feeds and TPN can contribute to patient discomfort, decreased mobility and the possible need for restraints.

There is evidence that surrogate decision makers tend to overestimate the benefits while underestimating the risks of artificial nutrition. In one study the majority of patients had no improvement in quality of life after feeding tube placement according to caregiver report. In another study, physicians assessed that artificial nutrition was very unlikely to improve quality of life in cancer patients who survived 3 months or less.

While Mr G seemed interested in the information I offered, she continued to demand that we intervene. The patient, depressed and scared, was not interested in weighing in on the decision and looked to his wife to advocate for him. My recommendation that we focus on comfort instead of pursuing artificial nutrition given the risks and benefits was not enough to convince her that her that starvation was not what was killing her husband. She explained to me that food was the center of the their most celebrated ritual -- a weekly gathering of extended family for Sunday night dinner -- and the thought of him dying with an empty stomach was almost as distressing as his death itself.

Of course people are tortured by the concept of “starvation” of their dying loved one; food is the basis of life and defines how we show love for each other. But when a dying person can no longer eat, families can be counseled that showing love in other ways -- like respecting the bodies rejection of food, is possible and essential. I explained that artificial nutrition is not food, but rather an industry manufactured mixture of carbohydrates, protein and lipids. In patients whose bodies were close to dying from advanced cancer, food becomes unhelpful and unnecessary. Artificial nutrition, simply put, is not food.

The loss of appetite and the catabolic state that can accompany advanced illness is natural part of the dying process -- and in fact it can even have benefits. The ketotic state generated by the reduction of readily available calories can itself produce a sense of euphoria and is thought to be an endogenous mechanism to ease suffering when we need it the most.

In Jessica Zwitter’s recent NYTimes Well Blog entry, she offers a different perspective on the feeding of our loved ones at the end of life, one couched in the natural history of humanity and caregiving at the end of life. She writes that for the thousands of years, people have hand fed their dying loved ones through until their bodies were unable to take more.

“But hand feeding has increasingly become a quaint piece of human history. We fed until they would take no more, and knew that we had done everything we could. But with the feeding tube, we can, and feel we must, keep going. Patients frequently die with plastic tubes weaving mysteriously under their gowns, entering bodies at unnatural angles, rendering them a little more alien to us. Those who are most needed sit a little further away from the bed, afraid to dislodge tubes that are supposedly keeping their loved one alive. And the patient’s mouth will usually remain dry and empty until the end.”

In our data-driven approach to complex decision making, this refreshingly simple and rational perspective was helpful in my own approach to this issue. The image of directly hand-feeding our sick loved ones until their bodies aren’t able to eat any more is powerful and timeless. It comes from a basic nurturing instinct of our collective existence, one without G-tubes and PICC lines. It is a comforting reminder that death is as old as humanity and since the beginning of time no human soul has escaped its inevitability.

Mr. G died peacefully and comfortably in the hospital before any final decision regarding artificial nutrition was made. In his final days he had a few sips of water but remained unable to swallow much else. While it was not the outcome anyone had ever wished for him, I’m certain that we did him and his family a service by engaging them in a prolonged discussion about artificial nutrition over several days rather than immediately subjecting him to a procedure that would not have helped him.

Of course, it would have been simpler to feed him artificially. While the fee-for-service, time-crunched medical world we operate in certainly would have favored a more interventional approach over the hours spent talking with the family, it would have undoubtedly been of little benefit -- and possibly caused harm -- to our dying patient.

by Colin Scibetta, MD (@colinscibetta)

Thanks but No Thanks, Docs!

I have notified all the doctors that I won't be continuing treatment. I was respectful but firm. While the lump was here, I had to be more or less compliant, but in truth, I'm a very non-compliant patient. We're the kind who live a long time to spite those who said we wouldn't. And I have the win/win perspective of not minding whether I live or (in some non-specific but probably preordained length of time)...die. I am living my truth every day.

There is still some pain. Now my friends who've been operated on are saying six weeks to six months recovery time. WTF??! Oh well, it does seem to be getting better. A generalized tenderness, achiness and occasional deep stabs. Those are quick. There seems to be a little remaining swelling inside. The ice pack helps immensely and the Excedrin keeps me moving around a little. I even managed a few yoga moves today and pruned a few small branches from the apple tree yesterday.

Oh, and saw a hilarious movie just now. Probably explains my oh-so-light mood. It's animated and called Inside Out. Absolutely charming and funny. I really needed that little outing with my girlfriends. Grateful. Go see it! Or rent it, depending on the time frame in which you read this. In fact, buy it. It's probably a keeper.

Yes, I can go from...well...virtually any topic...into a discussion of movies. So there we go. 

Now that it's been established that I will have (more than likely have a better than 80% chance) of staying alive for several more years, I can go back to writing about death and dying.

Some of my friends seemed surprised that I declined all further treatment. I'm surprised that they are surprised. It was never my intent to (have nor) fight cancer. But I did want the lump removed and I'm coping with how much they had to take. Funny looking, lopsided...but acceptable.

Moving on. 

All Done!

Just got a little healing to do still. The wound looks as good as it can. But it's clean and dry and she removed some of the steri-strips and said I could take off the rest in a week.

She had other plans for me that would go on, she said, "...until she retires" ...but no. I'm done. I found the initial lump and will keep a watchful eye. She wants another mammo in less than six months. I reminded her that this lump didn't show on any of three mammos and ultrasounds. Didn't faze her. 

I will follow up with and stay in touch with the PCP I now have. And, of course, if another lump forms, I'll have it seen to (or not). Other docs had warned me not to use local docs because they would "butcher" my breast. Well, it's pretty much ruined now, so oh well!

The surgeon, said that I could get breast reduction surgery so the breasts match again, "after radiation and once I'm on the recommended medications..." Medicare will cover that, she said, hinting that the order would need to come from her. She is a lovely young woman, really, so I'm not blaming anyone. Just saying "NO" to the system. Well, and to follow up treatments including reduction surgery, which at one point I would have welcomed (in fact, in a Twilight Zone moment, I put images of breast reduction in my image book back when I was 28 years old...) But OMG, I'm already 65+. The boobs are what they are! 

So now, onto the next phase of my life which doesn't include having a lump in my breast or any other cancerous growths. The women in my family don't have breast cancer...they die young of heart disease or they die old of...meanness... I guess. I can still qualify for either of those.

Stayin' Alive, Stayin' Alive...

Surgery is over. It went well. I'm alive and, apparently now cancer free. I've had lots of company and phone calls. My body is sore from not being able to move around much. Not supposed to move the boob much so can't use my left arm very much. But I'm doing OK. 

Despite taking showers, I don't like how I smell...must be some left over medicine or the remnants of illness working its way out of me. My sensitive nose. But then, there is a big hole healing in my boob trying to heal. It's clean and clear; no goo or infection…I just don’t like the smell of the medical industrial complex on my skin (or, in this case, IN my skin!)

My sheets, however, are in the washer as we speak. I will figure out how to make the bed with one arm! I need to be clean and sleeping clean. I’m naked now, walking around with the bandages showing…just letting that be the new normal. There are gaping holes. There will be scars. Get used to it!

Of course the docs want me to go ahead and have radiation, which means they will be disappointed! But it was, as I suspected, an anomaly. And it’s gone…leaving me with Sponge Bob Square Boob…but it’s OK at this point because it’s GONE! 

They "got it all". It was stage 1A, clean margins, no node involvement. I will see the doc soon for the one week exam and steri strip removal. Then (much to her disappointment) I will be done. I've decided against radiation and probably won't take the pills she's recommended, either. The side effects (joint issues) seems pretty awful for a woman whose main problem....up until now...has been aching joints.

                

I truly believe this was an anomaly. Will spend my money on massages and reflexology, water aerobics and better eating. Those activities and use of limited discretionary income, will contribute to my overall wellbeing versus focusing on something that is, quite literally, gone.

Within about a week, I got back on my spiritual path, writing what messages I heard: 

First time I've cried since surgery. My spiritual self, comforting my inner child, who is devastated by the ugliness of the wound. A message comes to me. Sweet, soothing voice:

This body is not you. You are not this body.

Words that have now penetrated my deepest consciousness.

You are not this body. You are something else entirely...a light, a fully realized being who is in no way distressed by the state of affairs. The inner child is sad, she was scared. Her pain is real to her. Comfort her with love, not food.

There is no loneliness. There is only peace and health and a deeper sense of wellbeing than ever. Ever.

Now you can play with the body. Learn to see. Let nothing but light shine from you. Be of service to others. Rest. Find your center and stay in that space.

Look toward the stars. Move among them with ease. You are not this body. You may release every obstruction that may have prevented your total affiliation with the Universe. You are welcomed with open arms into the realm of knowing. You may still cry and those tears will lift you higher. Hug your friends with gusto. Kiss away any lingering fears with Mike's beautiful body and help him find his equally marvelous soul. You are not this body though while you're here, you are the role model for others who need to know how to let the soul be in charge.

Healing tears. Comforting the soul. Releasing the pain. Moving past. Spending time within The Light. Being with Lavender. Laughing out loud. Howl like the wounded animal that lives inside. She needs to be heard whenever there is an opening. Just know that you, nor she, nor the damaged inner child, is this body.

Be grateful that you can know this. Be happy. Or sad. Be what you will. Be who you are. That's who I love.

That's Who IS Love. Namaste.

Further notes on Deciding to Live...

An interesting note: everything on my body aches. Little things like the childhood tail bone injuries and the cracked elbow from 30 years ago…aching now and never before. Fingers and toes, ouch! Even my teeth! Weird but true. Knowing that you have cancer is bad for your health! I wasn’t nearly this achy – or fatigued – before I “knew” I had cancer. Denial for almost five years was the right course!

                

The meeting with the radiation oncologist went OK at best. Right off the bat he said he could cure me of cancer. HE could. Bit of a savior mentality.

At first he had some Frankenstein things he wanted to show me. A way to put the radiation inside you through a pinky-finger sized HOLE they drill in your breast (and only takes "about a year" to completely heal). I was grossed out, but it was a quick way to deliver the radiation and “save the skin” he said. 

Then, when he finally looked at my record, he realized that I couldn’t use that method (because I have “skin involvement”) so he said, “Even if I could, I don’t want to do that” (he used the word "I" frequently) and began to explain how much and how long it was going to go: five days a week, for up to seven weeks. And yes, I had to pay him every time as well as co-pays for the treatment. I explained that I'm a woman of modest means and he disregarded that. Again, healthcare believes that everybody will do everything to stay alive, no matter the cost. (I can spend 1/10 as much as my co-pays and have a massage or reflexology every week, which will most certainly extend my life as much as other invasive or poisonous procedures and make my MUCH happier along the way.)

When I asked my questions, which my doctor friend had helped me formulate, the radiation oncologist literally moved away from me, rolling his stool backwards from the “I’m you best friend” space to the “I’m uncomfortable and don’t want to be here” space, arms crossed on his chest. 

His final words of the visit were, “Have the surgery and then we’ll see.” Well, duh. That’s what I wanted all along (but the surgeon insisted that I see the radiation and medical oncologists first). He actually grimaced when I asked about the expected “symptom-free interval”. And he used the word “cure” that my doctor friend had told me is impossible to promise. 

Later that night, I hit the wall. Deep depression, short lived (sleep is a wonder drug.) Woke up with all fears relieved. I thought, perhaps, it would be more difficult to "just say no" to the medical industrial complex. But no. 

Now I've felt the lifting of the latest round of fear. It's as if the hard part is over. All I have to do now (besides meeting with one more doctor, one I've known for many years and have no hesitation with speaking to, asking questions and/or saying no to as necessary) is climb up on the gurney, go to sleep and wake up with the lump removed, my ultimate goal all along. My friends have been wonderful, helpful and supportive. Mike went through the worst of the worst in the midst of the fearful parts and did his best to comfort me...and kept me laughing.

I remember my dad saying, at a late age after many various surgeries, that he had reached the point where anything else they cut out or otherwise removed "will show". Well this will show for sure, but it'll be gone! And I may...later...consider having that creepy fatty tumor on my back taken off (so ugly!) as well as getting my cataracts fixed. But then I'll get back on the "only live until I die" band wagon (unless I get some icky thing on my face...I'm too vain to be ugly, even at this advanced age!) and do my best to avoid modern healthcare.

But better now. The joy of old age is knowing, deep inside, that everything WILL get better. And it does, time and again. Sometimes it takes lots of work or unpleasant challenges (like seeing doctors...or eating right), sometimes a simple guided meditation and nap do the trick...sometimes one has to stand firm in the face of a nation gone healthcare crazy and say "NO"...but every single time...things get better. This is one of those times.

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.

               

And Yet...

Despite my long-held belief that I will only "live until I die", I find myself in a position in which I had to make a decision to stay alive.

I have a pesky patch of cancer that has to be removed and, as a (former) non-healthcare consumer, am finding it challenging to work my way through the system. It was never my intent to "fight" cancer, but this one is ridiculously small and totally accessible, so I'm having it removed. It's grown so slowly that it would take years and years to kill me! I may be pro-death and all...but I'm also pro comfort!

Plus it's interesting to see how my boyfriend (and some of my friends) became VERY pro "stay alive" when it was found. So here I am, staying alive...but using every ounce of energy just to navigate all the doctors and tests and other intrusive (and occasionally invasive) hallways to health.

Interesting psychological aspect: I wasn't particularly tired before it was diagnosed, though I had known it was there for four years (it doesn't show up on mammo or ultrasound and was growing very slowly, so other than repeated mammos and ultrasounds, I did nothing). But once I had the diagnosis, THEN I became severely fatigued. I know it's psychological, yet it's also quite real. I take lots of naps. 

Oh, and it STILL doesn't show on ultrasound or mammo, so I'm scheduled for an MRI next week, more doctor's appointments and tests to come and eventually, a lumpectomy. Fortunately it's palpable and after a growth spurt in the past few months, visible. So despite having no high-tech diagnostic evidence (and trust me, they tried and tried to find it with machinery), we're going forward.

I'm still seeing it as a science experiment (at least consciously...my subconscious is kicking my butt and putting me down for naps every day), but they tell me it will become "personal" once I get the surgery. I found the punch biopsy fascinating...I still admire the small, healing hole next to my nipple with wonder...so perhaps I'll hold that sense of amazement post surgery, too.

This whole journey has made me draw in from all but a few close friends, the ones I know have the wherewithal to be of assistance (mostly moral support, but then afterwards, there will be some recuperative assistance needed.) Like a small death, only the ones we can rely on remain. I have hurt a few feelings declining offers of support (or not asking, or not allowing) from friends who were clearly otherwise distracted. 

And so, thanks to our litigious society and healthcare/Medicare rigors...I wait. Not unhappily, really...I do love to nap...but the inconvenience is massive! If I were dying, I'd just be giving away stuff and hugging friends goodbye! But now, instead, I listen to doctors and walk down high-tech hallways to machines and blood draw stations and strive to be positive.

An older friend (an MD) wrote his own "dementia addendum" to his Advance Directive, saying, "I desire that nature be allowed to take its course so that the first potentially lethal disorder I encounter is allowed to assist me in my final exit." I feel that way, too. I do still plan to refuse life-extending treatment when (if) I reach age 75, but as a robust 65 year old, I'm listening to my doctors (but mostly to my friends.) 

Waiting, not yet dying. 

What IS Your Life Worth??!

A friend told me about an individual she knew who was very excited to get a terminal diagnosis. The person who was ill went about saying, "Did you hear the good news!? I'm dying!!" Not very many of us reach that level of acceptance, but she did (and when she died some time later, it was a well-planned, peaceful death).

For decades I've been urging people to plan their deaths: do the Advance Directive, finish your will, find the person you trust most to be your Medical Power of Attorney and other activities to assure you'll have the death you want.

What I didn't discuss, and am now in the middle of discovering, is how difficult it can be to talk to healthcare professionals when you are NOT afraid of dying.

A wonderfully funny, vibrant 85-year old woman I know told me that her doctors tried to put her on Prozac when she told them that she had quit taking all those prescriptions that were "keeping her alive" in their eyes. In her eyes, she feels good some days and crappy some days and can still do everything she wants to do. Plus, she says with gusto, "I'm 85...how much longer do I want to be here anyway?" Trust me, this dynamic person does not need antidepressants.

Nor do I. A recent diagnosis (as yet indeterminate) has one of my doctors telling me how many other docs I'm going to have to see and what my prognosis may be and what other multitude of diagnostic procedures I need to undergo. And though I'm on Social Security and work for extras (like groceries and other fun things!), she disregarded my question about copays. It has come to my attention that doctors and Big Pharma both like to say things like, "How much is your life worth?" as a way to scare you into doing whatever bit of modern medicine "healthcare" they want you to have. Afraid to let one test go undone because you might sue them. A sad commentary. Another bit of research shows that a woman needs to have saved up more than $131,000 for her part of healthcare expenses post retirement.

I see an advertisement for a cure for Hepatitis C (on TV) and though I don't have that disease, I know people who do. I have heard from reliable sources that each treatment costs $58,000 or thereabouts (I admit, I haven't done further research. Let's just say it's exorbitant!) And your doc, or your pharmacist may, in fact ask you, "How much is your life worth?" 

Well, here's the answer...it's not worth $58,000 per treatment. Just not. Shouldn't cost that much anyway and most assuredly not worth that if it causes me further stress or leaves me homeless. Not worth $131,000 over the next 15 years, either. My life is about how today is going, and today is a great day! (And if I had $58K extra, I'd be giving it to people who need food or shelter anyway).

One of these days I'm going to feel bad and fail to rebound from some disease or another and I will die. So will you. Let's just live every day to the best of our ability and maybe we'll find ourselves - like my aforementioned friend - at age 85 doing whatever we please and laughing at the scare tactics others endure.

Or maybe we'll not make it anywhere near 85, but we will live each day to the fullest (and take as many naps and soaks in the hot tub as we want). We'll tell our family and friends that we love them and get our affairs in order so that if we get hit by a bus, or get a diagnosis that might possibly become a problem (but the docs want to spend thousands and thousands of your dollars treating) ...we'll be ready to go.

In my last blog I wrote that to me "Death is Always a Viable Option"...in this one I want to say, "One of the benefits of having cancer is death." I can already hear the gasps and the docs reaching for their pens to write an RX for Prozac! 

I don't plan to die any time soon, but I live each day as if I may. 

Do you? Are your affairs in order? I plan to be writing this blog when I'm a feisty 85-year-old like my friend, still snubbing my nose at most of what modern medicine has to offer. But if I'm gone by then (even long gone), please know that I'm happy and looking forward to whatever else comes once I leave this life. 

And maybe, just maybe, I will die with $1 still in my pocket! I would sincerely like it to come out even!