Not so fast, “bucko”

So, remember my last post how I had so easily come to a decision about the chemo plan?   Well, I have changed my mind a bunch of times since then.  Since I found out my cancer surgeon will not put a “port” in my upper arm, I have decided to pursue another option to see if  I can get this procedure at U of M (where my onco-man suggested it is currently being done.)  I have spent hours on the web and on U of M sites in the last day, and I think I am ready to cancel the pre-op appointment coming up this Thursday at St. Anne’s (in Toledo).  

Now, I just have to be sure Medical Mutual will allow me to travel for this procedure……and since I am doing that, I think I want a second opinion on the chemo plan too.  I can hardly believe I am saying that. I’m worried that I am making a big decision too quickly.  I’d do more comparison shopping for a pair of shoes than I have for chemotherapy.  That’s a sobering thought.

I’m worried about the insurance, worried about the “port”, worried about the “plan”, and worried about my kids.  All the while, I keep thinking I should really try to have a good time now, before “chemo” starts and the likely nasty side effects decide to cozy up inside my little ol’ body.

Decisions

Well, yesterday, after a week of great internal fear and debate I amazingly, easily came to a chemo-decision.  By the time I left for the appointment with Dr.Mowat (the oncologist….I have taken to calling him my “onco-man”), I had a page full of questions and a briefing sheet for him.

The “briefing sheet” had a photo of my family this past Christmas at the top.  In big red letters I pointed out each person:  Kay-Lynne is 50.  Lou, her husband is 10 years older. Charlie is only 8, Louie is 10 and has special needs.  KayLynne needs  to live at least 10 more years to get those kids through HIGH SCHOOL, and they must be good years, too, not sick.  Then I outlined what I thought were the important stats from my Pathology report like the tumor size, hormone positivity, lymph node involvement, etc.  You know,  just to have all the facts there and obvious.  Of course I assume onco-man knew all of this already, but I guess I just wanted that color family photo and document of patient involvement in my file.

My decision is to choose the more conservative route of therapy, the TAC chemo cocktail for 6 rounds in 3 week intervals.  I will still need hormone therapy (to block my hormones because my cancer is estrogen and progesterone positive) and I may choose to participate in a clinical trial for that. I’m going to research that trial over the weekend and make a decision on Monday.  If I don’t choose the trial, then it’s Tamoxifan for me.

NOT any “port” in a storm.

Well, I think I may be stirring up a little storm today with my cancer surgeon who is scheduled to put a port in my body to make the next 18 weeks of chemo easier.  Her method, like every other doctor in Toledo is to place the Port in the chest. Let me tell you something about my skinny cut-up chest.  It doesn’t want the port.  My chest is stretched skin (to make up for the loss of skin) big scars and one side “expanded” to 250 cc’s.  So the skin on both sides of my chest is tight, hurts, and would like no more scars.  

Onco-man told me about a method they are using at U of M where they place the port in the upper arm and women love it. It is one less stress to their chest area, one less scar, too.  Wow, did that sound good to me!  When I went on line to research this…..only confirmed my thoughts.  If there are any complications with a port in your chest, the equipment is so close to your heart….infections can be very bad, parts of the port can fall off and travel….ummmm to your heart.  At least if you have a problem with a port in your arm, there is a little distance there, an infection, while serious, may not spread so quickly to the traumatized areas.  So this is my next fight/decision/delimma.  The Port issue.  How do I get what I want in Toledo?  Is there a “Port Authority” for this kind of thing?

Rollercoasters and Lemons

May 27, 2009

Today while I was taking a long shower I had a day dream of a rollercoaster, you know the kind…old wooden framed ones, like they used to have at Cedar Point?  Not crazy with unending loops like the high tech coasters of today.  I’m not sure why my subconscious choose the old version.  I think the choices I have to make now are more appropriate for the gut-wrenching modern corkscrew-kind of coaster.  

So tomorrow I need to be prepared to ask Dr. Mowat, the Oncologist, intelligent questions about various treatment plans so I can choose the one that best improves my chances at being around long enough to see my kids graduate from High School (sure hurts to even write that).  So far, I only have four questions, and that seems pathetically inadequate.  Not only that, I can’t seem to focus long enough to complete any in depth research.  I know that is because I don’t know how to proceed.  Usually when I drag my feet, or distract easily, I have come to recognize that as a reaction to “not knowing what to do, and how to do it”.   Arrrrgghh. I hate indecision.

Empowering the Patient

Overall, I think providing the patient with information and asking them to make their own conclusions a good thing, but some decisions are just too big, and seem to have no clear answers.   I think I need more information presented v-e-r-y  slowly.  I feel like a “special needs” patient, please give me the information in small “chunks “, and don’t proceed until I get the first bit of information. Plus, you might need to repeat the information a few times…check for clarification even.  BUT OF COURSE, my oncologist does not function like a Special Education Teacher.  I know he has lots of patients in other waiting rooms, I’m even amazed he spent as much time with me as he did the first time. When I think about all the other Cancer patients that need to see him, it becomes kind of a democratic issue I suppose, one guy splitting the available minutes between many, many other frightened patients.  Or at least that’s how I see it.

By the way….the rollercoaster didn’t have people in the seats, hands held high screaming in delight…..  It had BIG LEMONS in each seat.  They weren’t exactly animated, but they kind of had “personality”.   It was a vivid and unusual vision to have in the middle of the day.  I think I know what it means, but I am waiting for the full story to come into my consciousness.

a little tiny bit jealous

Today, like every other Tuesday for the last 5  years, I picked up the Toledo Blade, glanced at the front page headlines, and quickly flipped to the Foods section to check out the feature story and side column.  I used to check to see if any recipes I personally tested were published and how they were presented. My “job” as the recipe tester for the Food Editor was really more than just a nice little part-time gig for me.

Being the “recipe tester’ was like taking a college class called, “Expanding your Culinary Horizons.”  Each week, I received a couple recipes to test, never knowing exactly what might show up in my “in” box.  I was to evaluate each recipe on a number of criteria very objectively, yet realistically.  It was fun, even when you had directions to prepare something you would never, ever choose to make on your own.   I loved this job so much!  

I can easily say one of the most difficult calls I had to make early in March after breast cancer first seared into my psyche was to call my editor and essentially end my own job.  I knew that I just couldn’t do a good job of “testing” while also trying to focus on the cancer plan pre-surgery, and of course, I had no idea of what to expect post-surgery.

Now, more than 3 weeks after surgery, I can’t even lift a plate out of the cupboard, much less even attempt to “cook”.  Of course, I haven’t even begun the hard work of chemotherapy yet.  So it was with a little sadness today that I read the comments of the Blade’s new “food expert”.  Kind of like watching an old boyfriend you really, really liked going out with a new girl.  I’m a little sad, a little tiny bit jealous, and just wish I could “function” again.

When will that be, anyways?  When do you get to feel normal again?  

Now theres a question no one wants to talk about, eh?

Oncologist to Oprah

Friday

Well, we finally got to meet the oncologist, Dr. M., and I’ll say this much, I think he is smart.  BUT-that doesn’t help me make a decision.

So far, this has been exceedingly difficult to even think about, much less write about, and I can’t exactly figure out why.  Maybe it is because I feel so clueless and immobilized by…..what?  fear? the fact that I really didn’t understand hardly anything he said?  And what he said, well, just had to do with my “odds of surviving” this stinking disease.

Tuesday

so at 3:00 am tuesday morning, I am still wondering how do you choose which type of treatment to do after breast cancer surgery?  We even taped the appointment so I could listen to it again (and again and again) but that hasn’t helped much

I think my choices are a clinical trial, or a more conservative chemo plan AND tamoxifan or a hormone blocking clinical trial.

Dr. M favors the clinical trials, but said if it were him, he would do the conservative chemo treatment. I think that is his way of being diplomatic about it all. We see him again on Thursday, I’m supposed to at least have an idea by then what I want to do.

I do think he is a smart, thinking doctor, but it would be nice to have somebody else decide for me.

Oprah

Taped the Memorial Day Oprah show with Christina Applegate on Breast Cancer, hoping for some pearls of wisdom.  It was a nice show, but for me in the “thick of it” right now, it provided no answers.  Shoot.  Actually, it was something said on that show that woke me up this morning.  A BC survivor made a comment which really bothered me, something about how great God was for giving her a second opportunity at life. Of course, the crowd applauded and cooed approvingly.  I so much can not relate to that kind of belief.

The thought that pulled me out of my now-normal uncomfortable sleep was, the universe is just “what it is” and it is what you choose to do with it that makes it turn beautifully for you, or makes life pass by achingly slow.  Good Lord, I have got to  get back to hanging out with the Unitarians again.

not brave, (pissed off maybe)

It has been sugggested to me a number of times how brave I am for dealing with breast cancer so valiantly and sharing so openly. Thanks, but I don’t deserve it.  Really.  I’m not brave.  I did not have any choice. When the cards were dealt this time, I just got a “bad hand”, and I’m trying to make the best of it.

People who are brave, are the ones who have the choice to play it safe or take a great risk for the benefit of others.  Not me.  I wouldn’t have taken this leap willingly.  Not even to help support and educate others.

KARMA  

I still, despite my very first post, cling to the notion of karma. It is for this reason it is so important for me to share this experience.  It is not even cerebral, it is more “instinct”. Maybe it is because I am a teacher I am driven to write, to talk, to share. I have met so many women in this, my first short trip to Cancerland so far that have helped me with just their conversation, how can I not do the  same?

MET MY FIRST ASSHOLE  

Might have to come back and change that title, but that is how I feel about this as yet unamed person at 5:28  am Friday morning.  Yesterday, I called my oncologists’ office to be sure it was OK to bring along a second support person to my first meeting with the Doctor who will be giving me my plan for killin’ rogue Cancer cells.  

It was some person “upstairs” at the Toledo Hospital Cancer Care Center who said I would have to write a proposal and submit it to the board (at their monthly board meeting for their approval) before I could bring a support person who would be holding a camera.  Yea, OK, he is a photographer and I suppose that makes some PR people weak in the knees, but this is my decision about my health odyssey. Be dammed with HIPPA!  I’d carry my own camera, but the literal truth is I can’t carry more than a couple of pounds without pain in my chest.  Any suggestions about what I should do to reverse this “policy”?

How Breast Cancer Treatment is like automotive maintenence

The “Tune-Up”

So on Monday, I finally got to keep my appointment at the Victory Center*.  The last two appointments were “trumped” by Dr. appointments.  I had a Reiki therapy treatment by a sensitive and careful practitioner, Tom.  His method of reiki includes using sound therapy, also.  By using finely crafted tuning forks, he determines which  tones will best serve the client on that visit by using a “divining tool”, along with his experience and intuition….and he uses his own body as a “conduit” for energy field alignment, with a sort of “laying on of his hands”.

Of course the room was darkened, I was comfortable on a massage table covered in a really cozy and warm flannel blanket, and felt as though I’d been encased in a safe cocoon. After a period of tones from the tuning forks, the sound therapy evolved into a lovely nature CD of water, birds, and mellow chanting.  I relaxed almost immediately to a state of gentle floating, and it was easier than I had expected to release all active thoughts from my mind. Colors of light spring greens, pale yellows, and a bare sprinkling of whites floated in and out of my closed-eye visions.  

At some point during the session, I felt a distinct sensation of super light goose bump-type, energy movement, first across my poor surgeried, breast-removed, manipulated, and short-of-skin chest.  It was so cool, and I wanted it to last and last……but the feeling then migrated around my body, mostly on my entire left side.  It was great.  It truly was a “tune-up”.  And boy, I sure was reluctant to “wake-up” and leave.  

I scheduled a few more appointments for alternative therapies at the Victory Center for the next couple weeks and left for my next appointment with Dr. Barone.

“Fill ‘er up, ma’am?”

After the really mellow session with Tom, I went into Barone’s office not exactly prepared for what was going to happen next. He takes a look at my crazy quilt of a chest and asks if I am ready to insert some saline into the one (and only at this point) expander implant on the “good” right side.  Apparently it is advantageous to begin expansion (translated: stretch the skin some more) as soon as possible and before the chemotherapy treatment begins.

“Sure, why not?”  I thought?  “Expansion” is the ultimate goal anyway, so lets get to it!  A magnet inside the implant guided the teeny needle to the porthole in the expander implant,which was connected to the big fat syringe containing 50 cc’s of saline fluid.  One slow depression of the plunger…….”are you OK” he asks?  Me, ever the stupid optimist, “sure!” Second slow depression of the plunger…….”how do you feel now?”  Again, the least informed person in the room said, “I’m fine!” as I am reclining on the nicest doctors examining table I have ever been on (it is soft as warm butter and sooo comfy).  A final 50cc’s of saline is injected into my only implant.  If you are keeping count that was 150 cc’s of saline injected into an implant which began with 100 cc’s on surgery day.

 

They slowly inclined the table, I stood up and thought, holy moley…..this actually looks like some kind of a BREAST on one side.  It is a pathetic unattractive scar on the other side. And once again, my skin is so tight, and so uncomfortable, and I am bummed out.  There goes that heady sense of independance I had recently acquired just the day before being able to lift my own coffee cup with my right hand.  Now the skin is once again so tight over my chest, it just plain hurts in the sternum.  I can’t even begin to think about being able to open the “child-safe” tops to my pain meds (gotta get my kids to open the bottles for me.)  

The moral to this story is:  Don’t overinflate your tires.  It will severely impact your good mood and ability to function as a normal person.  I’m thinking that by Friday the sensitivity and pain should subside a tiny bit, because I am “willing” it to improve.  On friday I get to meet my oncologist for the first time, and hear about my odds for survival with all the neat cancer drugs available today.

*  The Victory Center is an amazing place.  It’s purpose is to serve cancer patients and their caregivers by serving their minds, body, and spirit through a variety of free services, both individual and group counseling, and unique alternative therapies which comfort and ease pain.  This is a nonprofit organization worthy of your support.  www.thevictorycenter.org

 

Random thoughts of gratitude

“take me to St. V’s”

It occurred to me the other day that I had not mentioned how nice all the nurses, supervisors, and other staff were on the “Burn Unit” at St. Vincent’s Hospital.  I was too “out of it” to remember their names, but I truly felt well cared for.  The floor was nice and quiet, food was pretty good, and all the nurses actually seemed to care about me and my recovery. It was kinda weird when they were so happy about all the “pee”, but I guess body fluids are their thing.  I appreciated all you did for me!

xoxo to AWJH students

I have always known I loved teaching Junior High School, but after this experience, I don’t know if you could ever separate me from 7th and 8th graders. The large stack of “get well” and “you can do it” and  “don’t give up” cards I received from my many students (and even from some kids not in my classes!) is just the best mail I have ever received in my life!  To my students: you are the BEST ever…you really “get it” and I am the luckiest teacher around!  JBN!

 XOXOXOXOXO to administrators and teachers, too  

I really do know that I have the best job in the market.  My teacher friends have gone “above and beyond” to help and support me, and the administrators have demonstrated love, care and concern.  What more can you ask for?  How did I ever get so lucky?

Friends and Unitarians  

Wow.  You know, some of you I know I must have shocked a little, and I was so selfish.  Please forgive me.  I needed to practice saying that awful word “cancer” out loud when I really barely believed it myself, and I am sure I was insensitive to your responses.  Probably seemed a little cavalier about it even….  I told you first because I felt safe with you.  Again, know that I love you and appreciate you.

To the friends I told last  

You are the ones I couldn’t tell right away, because I was afraid any fear or sympathy or concern you might express might just reduce me to a puddle of emotions, and I knew I wasn’t strong enough yet to handle that.  For a few of you, it is the depth of our friendships and the breadth of our love and our lifes’ connections…..I didn’t have the inner strength to tell you because I didn’t want to hurt you….oh, I know it all sounds so ridiculous now, but just know it is because I love you all so much. 

This is only a partial list of everyone I owe a debt of gratitude.  I thank the universe for putting the right people in my life at the right times.

A Good Day

A few weeks ago, super-nurse-angel Juli told me I would have some good days and some bad days, and then just some “days”.  But yesterday, well, it was definately a GOOD DAY!  

On Tuesday, we knew the Pathology report was in, but could not receive the results as the submitting physician was out of town.  So the phone call from her office was just kind of a “tease”.  Just enough to heighten our anxieties.  Lucky for me, I have a prescription specifically for anxiety (says so, right on the bottle!) and I, of course, took advantage of that.  

On Wednesday we had an appointment with Dr. Barone, the plastic surgeon. Once again he had nice things to say about my scars on my FLAT CHEST, and removed the last of my medical devices, the drainage tubes and bulbs.  The interior part of the drainage tubes were probably about five inches long by 3/8 inch wide, in the lower portion of where breasts used to be, one on each side.  It was such an odd sensation to watch and feel them removed.  Exciting to lose the tubes and bulbs, but a tiny bit worrisome, too. Where is that 50mL of drainage fluid from the right side going to go now?  I am told “the body just absorbs it”. Okey-dokey, doc.  Guess I’m just going to have to believe you on that one. 

The immediate instructions were for more rest, and no exercise yet.  Sure, I can handle that.  He did explain why it feels like a TRUCK is parked on my chest though.  Apparently, a large section of tissue and skin was removed from the left breast where the tumor was very close to the skin on the upper portion of the breast, plus the nipple and the normal amount of skin below the nipple for the mastectomy.  That coupled with the skin removed from the right side, well, it added up to a loss of a lot of skin.  So…Dr. Barone just “borrowed” skin from my left side, the area under my arm, disengaged it from the muscles and PULLED IT to the front of the chest area to be able to sew my chest closed.  So, there it goes.  Take out a couple of breasts, a bunch of skin, and stretch the rest of the skin around the same body.  Kind of like a size 10-12 trying to fit into a size 6.  I don’t know when I get to feel like the “truck on my chest” has moved on, but I’m pretty sure it is not any time soon.  So for now anyways, half a gallon of milk is way too heavy for me to lift, and it is exceedingly painful to lift my elbows above my shoulders.  So I try not to do that.

At the end of the appointment Dr. Barone called for his staff to get the pathology report, and he smiled and said, “well, this is about the best news you could get”.

• Right Beast – Negative for malignancy
• Left Axillary Lymph Nodes (8)- Negative for malignancy
• Left Breast Additional Tissue (skin) dissected – Negative for malignancy

Wow.  This was one of the good days.  I know that I still have lots of days to get through.  Lots of days left of recovery time.  Still the question of treatment of radiation and/or chemotherapy (hope for chemo only).  Still the work of “reconstruction”.  Years of medications to gulp down.  And I really am a little afraid to be too positive or hopeful so early on in this strange cancer adventure. Just don’t want to be disappointed again.

But Juli was right, and this was one of the good days I am going to enjoy for a little while, even with a truck parked on my chest.

too scared….

The phone call

I didn’t actually get to have this conversation today because I was in one of my pain and drug induced marathon sleeping sessions, but this is how I think the phone call went:

“Hello?  This is Dr. Butler’s office and we wanted to let KayLynne know that the Pathology report is “in”. ” 

“Oh, no, Dr. Butler is out for the rest of the week.  Oh, no, I can’t possibly interpret the report”.  

So, there it is.  The good news is, the pathology report, the key to my summer “vacation”, has been determined and delivered.  The bad news is, I don’t know what it contains.  Actually, I’m too scared to just get the results by phone, so I think I’ll just wait one more excruciating day until my next appointment with Dr.Barone on wednesday.

I’ll let you all know here first.