It Will Never Break

Ten Day Rule

Again, I have wanted to write on here for a while, but if it’s not one thing it’s another. Since my last entry I have seen the orthopedic surgeon, the oncologist here in town, received my results from genetic testing, started physical therapy, had a mammogram, a bone density, seen the oncologist in Boston and the Bariatric surgeon for the hernia repair – again. Oh, and I went on an OA retreat!

What do you want to know first? Shall we just go in order? Fine. The orthopedic surgeon says my right hip pain is not caused from cancer or inflammation. This means we can go ahead with the hernia repair. He says it does not look like what he usually sees in a loosened replacement. So, we still don’t know what is causing the pain. He gave me a shot of cortisone in the hip and I see him again June 11.

My local oncologist was more concerned with my emotional pain than my physical pain this visit.  However, it is known that the time AFTER cancer treatment can be more difficult for some patients than during. We look fine, our hair has grown back, yet our bodies and psyches are still battling the pain and fatigue of treatment.

Genetic testing all came back negative for anything out of the ordinary! This cancer was indeed a fluke! I am sure my relatives are all relieved as well.

I began physical therapy with the STAR Program® (Survivorship Training and Rehab) at a nearby facility. I was given a pedometer to help me get over my fear of walking too far. When my legs stopped working in the airport last month I guess I got real scared. The hope is by using this pedometer I will realize that I can walk farther than I think. It is helping and I am able to enjoy my yard and gardening more.

I had my last mammogram before I was diagnosed with cancer last year. That seems real hard to believe. So this was my first one post cancer, and yes, it was difficult. And yes, it was clear, just like all the other ones I have ever had.

My bone density scan does show early bone thinning known as osteopenia.

Next I saw the surgeon again about the hernia repair. This was fun. I like to pretend I never had bariatric surgery. However, in 2002 I had the full Roux-en-y gastric bypass. I lost weight at the beginning and went from 414 to about 280. But it didn’t work for me because the disease is in my head, heart and soul, and I grazed my way back up to 380 lbs. Overeaters Anonymous is what has allowed me to give away my excess baggage – physical and emotional. Anyway, it is a good thing that I am seeing a bariatric surgeon since the reality is I have had bariatric surgery. Before he does the hernia repair I will have an upper GI to see what is happening with the surgery. I have been suffering with reflux and vomiting. I also mentioned that since I had the surgery I have not been able to eat healthy food. Raw vegetables and brown rice make me vomit, but I can eat all the processed foods I want. And I did. Hopefully we will find something he can fix besides the hernia (fingers crossed.) Upper GI will be next week; the surgery will be the week after – June 17^th, maybe.

Yesterday I headed out to Boston to see my favorite second opinion oncologist. He is sorry I am in so much pain still. But he loves that I am in remission – “It makes them look good!” He told me again about the “10 day rule:” if I feel a new pain, wait 10 days. If it gets worse call a doctor, if not let it be. I can relate to this, it is how I learned to handle panic attacks while driving; only it was 10 seconds with sounds and smells, not 10 days.

I have noticed with cancer that even when the actual tumors are removed, the disease seems to remain – in the psyche. The word just takes hold and begins to spread… I was in a meeting the other day and someone asked, “How does not picking up the food restore me to sanity? I just don’t get it. What does God have to do with that?” I realize that God restores me to sanity when I am in the moment. A few weeks ago I was struggling with worrying about sliding back into my depression AND fearing the future. I had noticed myself doing the same ol’ character defects that I thought had been transformed into nice healthy useful ones. Fear. Worry. Control. Indecision.  In the past I would have just eaten my favorite binge foods to cover these feelings up. But since I am abstinent and choosing to feel my feelings, I wasn’t having a pleasant time.

How did I get through this? By getting up each day and reading and writing and sharing with others some of what I was feeling. By going to meetings. Even though I didn’t feel a conscious contact with God, I still knew there was an “unconscious contact” with God. As I once heard, “That cord between us may become tattered and frayed, but it will never break.”

HE IS RISEN; And, It Is Sunday

Happy Easter!

For those of us with eating disorders this is not necessarily a happy day. Food will be everywhere! Food that people “gave up” for the last 40 days. I don’t know about you, but I used to think that Lent was simply a second chance at a New Year’s Resolution that I had already broken, and this time I only had to choose one item and I only had to do it for 40 days. Such a deal!

So what did I do to prepare? I got up early and made sure I read, meditated and wrote before heading off to sing at my church services. “Fit spiritual condition.” That’s what the Big Book says we need to stay in, and reading writing and meditating are ways I do that. I will miss my morning calls today, alas, but we do have to make some sacrifices.

This morning’s writing was on how I used to expect my Higher Power (HP) whom I choose to call God, would remove my weight for me. Remember, I used to weigh over 400 pounds.

[fade to memory] I used to think I could challenge HP to remove my weight. Seriously. I would stand in one of those aisles in the grocery store and throw down a glove, “Go ahead God, keep me from buying something I don’t need.” I usually proved he couldn’t do it. Or I would sit on the couch and challenge him from there to motivate me. Come on! I don’t know much about physics, but even HP would need more than HP to move that immovable object!

The image that helps me most, and I am sure I have shared it before because it is so powerful for me, is that of the relay runner. The relay runner, when preparing to receive the baton from his partner, is already running with his hand outstretched and open behind him. He is not standing still. He is not in the stands watching the race. He is actively participating and ready to win. Now, I am not in a race with HP, but I am in a partnership. I am asking him for something. Am I open to receive it? Or am I standing still or just waiting in the stands watching to see what happens? And another thing, I am not sure God ever let’s go of the baton, or if he does he certainly continues to run right beside me.

So far I have lost over 200 pounds in this program. I have more to lose. To do that I will add more movement as I continue to get my strength back. I am thrilled that I was able to maintain abstinence and my weight through this past year with chemo and radiation and menopause! (Oh my!) God showed me that this year, this WAS my healthy weight as it protected me from more severe radiation side effects.

The Wrens are Here!

I was trying to decide what to do with my blog now that the cancer thing is “over.” I mean, sure, I still have to see the doctors and have the blood tests and be scanned and worry over every ache and pain if the cancer is back or new or … but other than that, it’s over, right? The hair is growing back. No more needles or laser lights or side effects du jour… so, it’s over, right? And the snow is melting, and the birds are twitterpated and it is Easter and… it’s over, right? And it’s not like I had much to report, really. So I figured I would just let it slide.

Well, it seems God has other plans. Yesterday I got 2 messages to keep going. One was from a friend on facebook who found out last week he had cancer. As far as I know he doesn’t even know of this blog, but the message was simply: “You continue to be an example for others!!” The other message was clearer: I opened the blinds on the back porch, and there flitting on a plant right next to the door were my two wrens – waiting for me. Asking for me. “Where are you? Where is our home?”

So I will continue my blog. I will continue to share my journey of using the 12 Step Program of Overeaters Anonymous (OA) to help me live life on life’s terms. If it helps others, wonderful! I surely know it helps me. Remember it is an anonymous program, so if you do know who I am in the real world, please keep that to yourself and refer to me as “Wren” if you comment – in keeping with OA’s cherished Tradition 11. We wish only to promote the miracle of this program – it does work when you work it. That being said, I do talk about religion sometimes in my blog and not just spirituality. OA does NOT endorse any religion – in fact it says “God as I understand him.”* I take that liberty as my church community, as well as my therapy, has been so helpful in helping me recover.

A little cancer update. I did go for genetic screening the other day. I figured since “they” still aren’t definitive in my diagnosis, and it was in my ovaries AND uterus and there is a chance, I might as well see if there is a marker for a second cancer. And this way if it comes back negative for me, my sisters and my cousins and my aunts don’t have to worry. (Gilbert and Sullivan reference there) I know my brothers and my male cousins and my uncles and my nieces and nephews would have to go for testing too if it were positive. I did ask, “If there is a genetic marker, does it increase the risk for a secondary cancer arising from radiation or chemo?” I was told, “Good question.” I hope there is a good answer.

For today, as for the last 10 months, I continue to take it one day at a time. One step at a time. Thank you for continuing to take it with me.

for more information on Overeaters Anonymous, please visit www.oa.org

God’s is Not a Quid-Pro-Quo Relationship, or is it?

“I’m doing my part! When are you going to do yours?” This has become my lamentation to God lately. This assumes a couple of things: 1) I know how the relationship with God works; and 2), it is a give and take relationship.

Am I really doing my part? How do I know? Who determined what my part was? And I like this question better: Who determined what His part was? The answer is the same – I did. The great and powerful, I. Me. And I am judging how well He is doing too! Boy, do I have a set!

The truth is, I am tired and angry because I am human. My expectation was if only I can stay abstinent through “all this” then I will be just fine. (Do we all know what F.I.N.E. stands for? Freaking out. Insecure. Neurotic. Emotional.) If I can stay abstinent through all this then I will be able to show others that it is possible to live life on life’s terms without self-medicating. I could be a role-model. Maybe I could help someone else through a hard time. And here I am, still abstinent, barely. But so angry. So tired and beaten down by this treatment and wanting nothing more than myself back. No, that’s not true. I want the relationship I had with my Higher Power back. I want that trusting, fun-loving I would do anything for you relationship we had.

It bothers me that life can get in the way of that relationship so easily. It bothers me that “just putting the food down” and losing weight isn’t enough to keep that relationship.  Apparently God isn’t “a pound of flesh” kind of guy.

So, what does he want from me before I get what I want from Him? Let’s look at that. I believe I already received the Grace from God. I think that happened without my even asking. I believe, I truly, deeply believe I am a spiritual miraculous gift and I receive grace every moment. Now, what can I do in return? I can say Thank You. In my actions. In my words. In my thoughts. God did not give me cancer but he can help me through the treatment. He did not make me a compulsive overeater, but he can show me how to live in recovery, just for today. All I need do is remember. And trust. If I’m not careful I just may learn something.

Reader Discretion is Advised

I’m not having fun. I found out yesterday that I need to show up tomorrow for my pelvic radiation tattooing. I am not looking forward to this. When the doctor briefly described the process he mentioned, “As we scan you we will have something metal up your vagina and a rubber plug up your rectum.” I understand – logically and intellectually – why they are doing this. But my little girl, no, she doesn’t understand. And she doesn’t understand why she has to be alone in the cold room all by herself.

You see, a long time ago by earth rotation counts, I was raped. But some days in my head it might have happened just yesterday. And “something metal” and a “rubber plug” really don’t have a place in every day conversation. Can we just say I am having a difficult time processing this?

So what am I doing to care for myself? I went to see my Primary Care Physician. I needed to see a doctor who knew me and who I knew cared about me. She could see right away that I am stressed and more depressed than usual. She will get on the case of why my port has not been removed yet. She increased my meds (since my psychiatrist up and left without saying a word) until I get settled with a new one.

And where is my Higher Power in all this? I was once told by a therapist, “The cord between us can become tattered and frayed, but it will never break” and it is now how I think of my relationship with my Higher Power. What it means to me is that there is an inner, strong connection that will never be severed – no matter what I do or what I think God has done. I can yell at him and rant and rave, and no matter what, I will still turn my will and my life over to him each day to the best of my ability. Some days I forget to trust. Some days I still think I have it all under control. Some days I really don’t think he has a clue.

Well meaning friends say, “Radiation is a breeze compared to chemo.” To me I see chemo as light and social and non-invasive, just a needle in a vein and some short-term side-effects. Radiation I see as dark and cold and lonely with long term lingering side-effects and objects stuck in and pointed at my nether regions.

How do I talk to my little girl and tell her tomorrow will be okay when I am scared myself? How do I let her know I will be there to protect her when I feel so terrorized? I can imagine angel’s wings covering me. I imagine myself in God’s hands.

Latest on Chemo

After a very frustrating week, I think I have a better idea of what the plan is. Tomorrow (8/27) I will be going in to the local hospital to get a central port put in to make the chemo easier. That and if I need any extra meds or transfusions they won’t have to fuss with needles.

My first of 6 chemo treatments begins Thursday (8/28). I need to be there at 9:30 and will be there about 5 to 6 hours. I have a friend coming and we have a movie all picked out. Maybe I should bring two. 

I did meet with the medical oncologist on Monday. He believes that with what we are dealing with and because of my age (young), 6 rounds is the way to go if I am responding well. When he left me he went right to call the doctor in Boston. I would have loved to have been a fly on that wall. 

It turns out I am also dealing with a UTI. Just enough of one to be obnoxious and wake me up throughout the night. Not enough to scream, “take care of me NOW!” I have been waiting for a day and a half now for them to call in the script to the pharmacy. I am beginning to feel like a pain in the tuchus. And it hasn’t even begun!

i am really hoping that once it begins I will calm down. The not knowing how it will affect me? I am having a hard time accepting that all will be as it will be. I’m thinking it is about time I do. I still do not want to believe that I am someone who has/had cancer and has to go through this. 

Medical Oncologist Visit 1

I saw the Medical Oncologist yesterday (8/13/14). He admits that he has some homework to do as far as reading up on my case and talking to the Doctor from Boston. He seems very pleasant; he asked questions and listened to my answers. My age (50) and the fact that I am so young plays a large part in my treatment. I still have the rest of my life to live – as do we all. 5 uncomfortable months now are nothing for a little more piece of mind knowing I am doing what I can to protect myself from this cancer coming back.  Of course I don’t know what the future holds, but for these one-day-a-times, I will put one foot in front of the other. 

I am very confused as to my diagnosis. What I saw on a report from Boston yesterday said “Stage 3a.” How is Stage 3A equal to “Early Stage” that the doctor from Boston told me? The Doctor came in saying “Ovarian.” I said “I don’t think so, but I really have no idea anymore what with all the different diagnoses floating around.”  And yes, this is another reason I want the chemo: THEY can’t even tell me what I have or why, so I am doing what I can. 

My next step is to return next Thursday to meet with a nurse practitioner to go over scheduling. I do have a couple of important events coming up – a niece’s wedding and an OA convention – events that cannot be missed. And I want to be my most energetic, not my most lethargic.  

 I want to get my house in order. No, not a 4^th step sillies. Literally, I want to reduce the clutter in my home so the 6 months will be easier for my husband and me to keep up the home. And maybe I can get back to my painting. J I have only put it off for the last hmmmmm, 4 years or so. I should be able to get it done this week. I have boxes and boxes of I’ll-get-to-it-later to go through stacked in my study/studio. Anyone have a match?

More Confusion, but I Made My Decision… I Think

Okay, okay. I understand a second opinion is just that, and the first opinion does not have to agree with the second opinion. But at my meeting today with the surgeon I was more than a little confused.

Let me begin with saying that I was so thrilled with how connected I felt with the medical oncologist we met with yesterday in just so short a time. In 45 minutes he knows more about me than the surgeon who has seen me so often. And anybody who can appreciate my sense of humour is the bees knees with me! Plus he asked about my spirtuality and talked about my depression background. I do believe he has my best interest in mind.

So I get here ready to talk about with whom to meet as my Medical Oncologist, and I am told she completely disagrees with Boston. She hadn’t talked to the med onc, but only with the surgeon, (with whom I had no connection, I see a pattern) and did not have all the info I had. However, or moreover, she did not give me any opportunity to say anything. I don’t know if she knows or believes I am a scientist. She went on and on about how horrible chemo is.

When she allowed me to talk I was able to say some of what the doctor said yesterday about recurrence percentages. But mostly, I need to know that I am doing and have done all I can for my recovery. If the cancer comes back and I have not had chemo I will wonder “what if.”  I told her I am a microscopist. I can appreciate that she has surgically done all she can do and has cleaned me out beautifully. But all it takes is one little cell that no one can see today. I have already lost over 200 pounds which lowers the chance of the cancer coming back. Add the chemo and radiation and it lowers significantly. Why wouldn’t i do all I can?

Yes, I am sensitive to medication. The next few months will be difficult. But I have a direction and an action plan. I have a Program of Recovery and great support group.  I think I’ll be okay.

Oncologist 2: What the ? 7/21/14

Last Monday I went in to the surgery with Stage 1c Ovarian cancer, right? And I was asked a couple of times if I was clear on what was to be done. Remove uterus, cervix, omentum, lymph nodes and repair hernia while taking a look see for funky looking cancer. Okay, we were all on the same page – last week.

Today I met with the surgeon and she began by removing the staples. Thank you God, because for some reason I do not respond to pain relief medication. And narcotics simply let me feel the pain while on drugs. We then went into her office where my app to record decided to not work. And I had to rely on pen and paper.

She pulls out her diagrams and photos again. “What we did was…” Cervix was clear of cancer. Lymph nodes are clear of cancer. Omentum is clear of cancer. Washed the area and checked for free floating cancer cells, all clear. However…

This is the “Do you want the good news or the bad news?” part.

The good news is I don’t need chemo! And it has probably all been removed via surgery.

The bad news is, for today, I have stage 3a Uterine cancer.

 

WTF?

According to the surgeon, the cancer started in my uterus and traveled down my tubes into my ovaries where it presented as endometrial-like, which ovarian cancer can do. My uterus still looked fine as the cancer had only gone in the lining a little bit. So until the surgeon saw the pathologist report she had no idea.  Plus my menstrual cycles have been regular, like clockwork for 12 years. Irregular bleeding is an indication of uterine cancer.  Also, there was a dime size tumor on the ligament behind the uterus.

To say I am confused would be to put it lightly. There is rejoicing that chemo has been taken off the table. I do like being unique.

The next step is to send the tissue out to Boston to see what the bigger machines that go Bing! can see and the different tests can test.

Are you as confused as we are?

Anger is Cancer

Thank you all for allowing me to speak my truth yesterday. I have a couple of things I want to just touch on about what I said: First, before I wrote yesterday I was confused. I knew I was angry, but I still think that is one of those “unallowable” emotions. Let’s be real, I thought ALL emotions were the character defects that were to be removed in Steps 6 & 7, but anger was the biggy. But now I know that it is not the emotion, it is what I do with it that is so important. Anyway, by writing it out yesterday I was able to let the anger go and see where I need to do more work. Easy? No. Simple? Yes.

The other thing I got to analogizing yesterday was Anger and cancer. Like a disease, anger used to get in my body and take over. It begins to multiply and divide with no regard to the host – me. It takes over my mind until all I can think about is “what the other person /god did to me.” It can eat at my organs, my bones, my digestive tract, my nervous system. We know anger turned inward is depression. I certainly know this. I ate at my anger to over 400 pounds!

Why am I so afraid to let God know I am angry with him? My minister says God likes to hear us ask for help. I like to believe God likes a good discussion. Yes, I said discussion, give AND take. Talk AND listen. Remember, in the 12-Steps, we are able to choose a Higher Power of our own understanding. If the one I describe does not work, create your own. If the God you knew from childhood does not work, write yourself a want-ad for a new one. Wanted: a Higher Power to love human being unconditionally with no judgment, rules, criticism or small print. Must have wonderful sense of humor, no sarcasm please (but able to take it.) Large arms for hugging. Able to change species, gender, age, and size at discretion of human. Long white beard and throne optional. Patience a must!

For me, Step 2 is all about my relationship with God. It is constantly growing and changing.  After all, the OA program is all about relationships, so it makes sense. So yes, I let him know when I am angry, when I feel alone and abandoned by him. These conversations don’t have to make sense. No one else is going to hear them. God knows what I mean. And a really cool side benefit is, as I have learned to trust God not to hurl lightning bolts – or leave. I can trust that it is okay for me to get angry with <gasp> human beings and they have not left me either. In fact, some have come back.

Since yesterday, the emotional pain has lessened tremendously. The physical pain quite a bit: partly because of natural bodily movements; partly because of the emotional pain lessening; and partly because, as much as I can, I am breathing deeply into my relationship with God.