"The Cancer"

Tomorrow marks one year since I've completed chemotherapy and radiation for vaginal cancer. This makes me a one year survivor... What does that mean to be a survivor? The radiation oncologist told me you are considered a survivor after five years. I argued with him at my last visit and said I considered myself a survivor on day one after treatment. I guess there are may answers to this question. What I do know is, it has been a difficult year. Cancer does not go peacefully into the night. I reread my last post, which was so full of hope and plans. Many if not all of those plans have been realized despite the setbacks "The Cancer" has thrown in my path. After a wondeful trip to England, my best friend lured me into another trip this time to Paris. We went to celebrate her recovery from an auto immune disorder and my recovery from "The Cancer". We saw all the sites and topped our trip off with a four hour Segway tour of the city. It was truly wonderful. Though I continued to push through at a remarkable pace I just was not prepared for the ongoing struggles that would accompany recovery. I engaged a wonderful psychiatric doctor who has helped me manage my anxiety about recurrance. She diagnosed me with PTSD, which shames me because having two loved ones who served in Iraq and Afghanistan I feel my anxiety in no way compares to their combat experiences. My new doctor assured me recurrance was unlikely with my prognosis, but that was not the case. I developed a new cancer site externally which required surgery just before Christmas. Again a sigh of relief only to be shattered by a phone call from the surgeon. He stated the pathology report reveal micro-invasion at the surgical site and this would require more extensive surgery. Early in January this was performed and to date that seems resolved. As a cancer survivor you never fully have peace of mind. It is always lurking around somewhere in your body. It is a disease of oppertunity, if your immune system is suppressed it will strike. It's like a terrorist. Yep the terriorist of diseases. You can shoot it (radiation), you can poisen it (chemo), you can even slice and dice it - but it can find it's way back. The one think you cannot let it do is kill your spirit. I still have lots of plans. There are weddings this summer, more trips planned, a house redecoration in progress, gardens full of weeds, summer evenings on the screened porch and long walks on the beach in Kennebunk. So - Cancer - I spit on you. M

Ah well, I thought I was done with her. After completeing all the prescribed treatments and therapies my esteemed Dr declared me cured. Cured? But what if...he insists it is not going to return, but...what if. It is a special cancer, one that does not travel through the body until it has developed into a later more aggressive stage. Mine was stage I, the very best kind....hmmmm. I thanked esteemed Dr for trying to kill me and he laughed and stated "it was'ent me it was my friends", OK then your little friends tried to kill me - he remains guilty by association. I'm still working on forgiving these people who did everything they could to save my life and in fact treated me with kindness and respect. The aftermath of cancer treatment can leave you feeling violated and emotionally spent. It is the final stage of recovery, after pushing yourself through your treatments, followed by the giddy joy of compleating said treatments there is the emotional fall-out to deal with. I have managed to spend much of the last month with daily crying jags (weeping sounds so much more lady-like) which sometimes can span three hours. My eyes are perpetually puffy and I'm truely sick of myself. My close friends and family are concerned and worried and I feel even worse because they have already spent to much time fussing over me. So I've decided to seek help, and it is a relief to have made that decision.

Enough whining. I readily acknowledge my blessings. I am well on the way to physical recovery, darling daughter became engaged to her Marine, my eldest son seems well and happy working on his plays in NY, and my younger son is soon to return from Iraq. My husband and I leave very soon for our delayed trip to England - I am more excited about this trip then any we have taken in the past. I love England and when there feel so much at home. We have many adventures planned including a bit of geneology research in Cornwall, a play in London, a haunted castle in Wales (don't know about that one), a quest to find King Auther's castle, Buckingham Place to see the dress, Cluckingham Place to see Wendy's chickens and bunnies, a shopping morning at Portobello Market and a day long class for me in Cornwall on decorative painting and faux finishing.

When we return we plung into wedding plans and our son's return. Virginia will be well into fall and the air will be cool and crisp. Gardens can be restored, the house needs to be buffed up for all the parties we are planning and the holidays will be upon us. So many pleasant and happy things to look forward to. In the movie "The Help", Skeeter's mother who is suffering from cancer urges her daughter to accept an offer from a magazine in NY, telling Skeeter "I've decided not to die", well I've decided to get the hell over this as well. Note to self: Call the doctor on Tues - get some help, get over it. Note to dear friends and family: I release you, you have done enough. Love M

Leap of Faith

For a little over six weeks I've been living my new reality with cancer. It no longer seems new to me and in fact I have fallen into my daily and weekly routine of radiation and cheomtherapy. Today Mr. Robinson said "I warmed up the room for you" actually acknowledging me for the first time as the next beneficiary of the latest and greatest in laser guided radiation therapy which is more exacting in its excision of cancer cells as any scalple wielded by the most skilled surgeon. I was so emboldened by this exchange that I actually asked Lady Lovely Scarf if I would be seeing her later today at chemo which led to a friendly exchange that was very nice indeed, since she typically ignores me. LLS has now completed her radiation and is hoping she could have her chemo today since her numbers were so poor for the last two weeks she could not have treatment. I did not see her at chemo later today, but it may have been because there are some problems with my port which took lots of poking about and flushing and other stuff, which means a trip to Interventional Radiology at 07:00 am for a CLOT BUSTER. Crap - are we having fun yet, and I will spare you the details of my meeting with my nurse at radiology today which left my dear friend Kaye laughing her a__ off at my expense. I'm just glad someone is having fun.

Now for that Leap of Faith. I said earlier that the first thing you lose when you are diagnosed with cancer is your dignity, that is not really true. The first casulaity is your dreams. It is as if there is a blank grey wall in front of you and everything you wanted is somewhere on the other side soundly out of your reach. I would try to imagine myself healthly and happy traveling with my husband, spending time with my children and these images would simply dissolve like paint that failed to stick to that horrible grey wall. It was really troubling because I deeply believe in the power of positive images in healing and moving forward. For many days I could not get past this and felt powerless that even with positive resolution, my deeply cherished ability to imagine happiness for myself and my loved ones was permanently damaged.

Now one of my Christmas gifts from my husband is a spiffy new generation flat screen television for use in our sitting room that he was painting and helping me decorate as a office/craft room for me. We had really just started this project when I was diagnosed. I just stopped caring about it, actually I felt like it might be a wasted effort as it might not be used very much for the most morbid of reasons. Gradually, as we moved through the cancer process and my prognosis was consistently positive with each new encounter and result, I started to try to think in terms of future - past the grey wall. After all, I've knocked down walls before, and you can put a big hole in a wall with a little hammer. A fist can also be very effective - but I think it is best to use the hammer - much better for your hand. So one day I marched into Kaye's office and announced that while I was supposed to be working I was actually shopping on the internet and had purchased a beautiful desk for my new office. The grey wall had a large gaping hole in it and I could see the other side and it is beautiful. Kaye was thrilled because it was the first time in weeks I was me again. Retail therapy is as effective as anything ever invented by any scientist.

I have to tell you my little room is almost done and very usable as is. I spend many hours reading in here on a small couch I have had since before my first child was born. Soon it will be slipcovered and spiffed up with some pillows so it is as lovely as the rest of the room. My dear friend Kathy has ordered curtains that will be perfect, and the little desk supports my laptop and overlooks our back yard with lots of trees. On sunny days it is just bliss and so peaceful, the perfect place to plan and dream which I can now do without the worry of hitting the ugly grey walls. The television is used just for watching anything and everything but it does so much more. This little device apparently allows you to surf the internet and I don't know what, but I am waiting for our Charles to come back from Afghanistan and show me how to use it - and he will do that soon.

As for the dreams, Roy just booked a trip to England for the early fall. We will go to Cornwall and find my relatives. Our family legend links us to Sir Richard Grenville, a true rogue who was immortalized in Dauphne DeMauier's novel "The King's General". I have other dreams, too. We will build a huge patio out back, something really wonderful and large. We plan to have lots of parties and gather our loved ones around and just celebrate them. We will celebrate our family and our family of friends. I just keep imagining long tables covered with white clothes, big jars of sunflowers on every table, and lots and lots of food with sangria loaded with beautiful fruit. Taylor and I will hang lanterns from the trees and we will dare the mosquitos to violate our night. But the lightning bugs are welcome and of course so are you.

Let the battle commence

Well it has begun, one treatment of cisplatin and two radiation treatments.  I was not prepared for the total wipe out of my system.  So far I have not experience the nausea associated with cisplatin but I have developed terrible ringing in my ears, which apparently is a common side effect which has been linked to permanent hearing damage.  And the fatigue, today I took a nippy-nap on my aero-bed at my office and slept for over two hours, I swear I thought it was only 30 minutes.  It is very hard to concentrate and focus but I am forcing myself to read a Anne Rice novel which I really have to bear down on and try to recheck and retrace everything I do at work.  Everything is a fight just to maintain a normal me.  I've continued to swim at the YMCA at 7 am which is a huge pleasure, though if the radiation therapy causes skin breakdown I will of course have to stop, so until I can't - I will. 

Darling daughter is coming home late tonight after seeing her beloved boyfriend Charles off to Afghanistan.  This morning we heard of the shooting at the Frankfurt, Germany airport and all I could think about was Charles on that bus as his group was making a morning connection there.  We we lucky and it was not our Charles.  It is good and sad to have to worry about someone else.  We all love him very much and pray for his safe return to Taylor and his parents and his adoptive family here in Fredericksburg, Va.  Please say your prayers for him and his men, he is gentleman and a Marine and he makes us all very proud.

My Newest BFF

Monday I begin my chemo and radiation therapy treatments, so I've been trying to tie up some loose ends in my life as well as complete some unfinished tasks.  It is just a beautiful day and I've tried to grab a little of the winter sunshine hoping it will help protect me from sliding into a pre-treatment funk.  I am so ready for this to begin, and so ready for it to end.  It is the not knowing that eats away at you, how sick will I get, what about the radiation burns, will it cure me.  I'm impatient for answers.

I'm also angry at my insurance company, really angry.  It seems that in the infinite wisdom of their esteemed medical director my therapy should be paid as an out of network provider rate.  Which means a significant copay (50%) for of all my treatments.  The Medical Director at Health Net in California feels that though I will be receiving daily radiation here in Fredericksburg, Va it would be more appropriate for me to commute to Woodbridge, over 30 miles between these two providers to have chemotherapy.  So he denied my request to negotiate with my local, and I might add very competent chemotherapy doctor and encouraged me to commute north for these services.  I have begun the appeal process which of course has not been resolved yet and as I stated I begin treatment Monday morning.  Yes - you just have to love the insurance industry.  Of course my opinion was tempered and my rage abated when I received a call from my new nurse case manager.  Gosh was she ever helpful and oh so very concerned and sympathetic.  She started out by asking me if I understood the implications of using an out of network provider since my request for in-network provider services was denied.  I had to ask exactly what she meant and she clarified by stating the cost of my medical care.  At this point she said we could talk about options - what options I asked...she said well you could delay treatment until this is resolved.   Again this is the NURSE case manager, did she really actually make that suggestion - why yes she did.  So the nurse case manager, not my three oncologists actually suggested delaying treatment.  I almost politely said no and then told her what I thought of their medical director.  Then my newest best friend wanted to ask me about my  support network and any nutritional issues that may concern me.  I told her my support network far exceeded my needs and if anything I had too much help.  As for nutrition I am vegan to which she asked me if I was getting adequate fiber - surely you jest my dear, unless I am mistaken fiber is the very basis of a VEGAN diet.  She encouraged me to contact their nutritional counseling group for what I don't know maybe recipes or something.  I indicated to her that all three of my oncologists as well as my internist absolutely endorse this diet for cancer patients and perhaps she should pick-up a copy of the China Study.  She left me her number and said to call her if I need to just talk.

So, to be very clear, Pam, Nurse Case Manager at Health Net is not part of my support team.  I don't need or want any nutritional advice and clearly I don't require assistance other then financial from her on when to start treatment that has been ordered by three highly educated and experienced oncology doctors.  Thanks so much for your help Pam.

OK, I may be in a funk.

Tattoos and a Brazilian

Today I absolutely insisted on driving to my radiology mapping appointment. I want to be normal for as long as possible and driving is normal for me.  I feel fine really, even though yesterday I had a port placed in my upper chest which has left me looking like I'm recovering from a rottweiler bite -  a little sore but I still look normal except for the bite marks.  Seriously how bad could this appointment be, after all it is just a little mapping - wrong again.  It was necessary for my new friends to revisit the scene of my dignity defying internal exploration adventure and implant something so it could do it's own little mapping adventure and it was hellishly uncomfortable.  I have not cried in may days and let me tell you I cried because frankly it hurt like hell, even my new friends both held my hand trying to assure me it would be over in just minutes and we could get on to the less distressful mapping.  Yes the tattooing, less painful, but ouch after 5 little permanent marks with a bulls eye around them which may or may not be permanent, as in for the rest of my life I was assured that the remainder of the appointment would be painless.  Hmmm, now for pictures....at that point I was just a noodle and said shoot away.  My friends and I said our goodbyes and I assured them I would return.  Grateful that I had recently been provided with the latest greatest in feminine beauty treatments the Brazilian.

Now I am a modest gal and would never ever consider securing such a treatment for myself.  A couple of weeks ago I had a biopsy at Fairfax Hospital and upon discharge was given several things to releive any post surgical pain - narcotic pain medication and several of these pads which when snapped get very cold like a bag of ice.  I handed off these new treasures to my friend Kaye and off we all went home.  I was actually a little giddy after the surgery because I felt pretty good until I sat down on my bed and there was shooting pain.  Ouch, hmmm maybe I need to install one of those ice contraptions, which I did and then of course fell asleep until morning.  In the morning with no pelvic pain noted I headed off to the shower to get freshend up.  Now for the discovery, I was provided with a Brazilian, I laughed and laughed over this.  I wanted to call the hospital and ask where to send the tip. 

So if not for this cancer thing I would not be getting tattoed or having exotic beauty treatments.  As for driving, rest easy I am done with that since I as honked at twice and had to slam on the breaks to avoid slamming into someone.  It appears driving is not normal for me at this time and I would prefer to be call Miss Daisy if you don't mind.

The Numbers Game and Sabrina

Saturday, February 19, 2011

The Numbers Game and Sabrina

Yesterday was a numbers day.  It was a very long day of consultations, exams, and labs. Both the chemotherapy doctor as well as the radiology oncologist were very competent and assuring.  My cancer is Stage I, 0 metastasis, 0 lymph node involvement.  Cure, they threw out the "C" word is 85-90%,  I will gratefully take those odds.  All other labs reveal I am as fit as a fiddle - except for having cancer.  Monday they will place a port for the chemo and after a week of healing we begin the treatments, once a week cisplatin and daily radiation therapy for five weeks.  Five weeks, winter will be over, things will be blooming, I can do pretty much anything for five weeks.  Or two pedicures and a hair appointment away and hopefully I will be through the worst of it.  Speaking of hair...neither of my new BFFs think I will be loosing much of mine.  This is probably a really good thing since I had decided to purchase a really "smokin hot" blond wig, one just like that super trashy Kim from the Atlanta Housewives wears.  My logic is since I am no longer my old self - why not enjoy a new trashy self - but alas it is not meant to be.  Roy really liked the idea, my mother-in-law was appalled and I did not actually share this little threat with my mother.

Since my diagnosis I have been ticking off all the tasks I've needed to accomplish, like cleaning the cabinets, organizing, painting things and even getting my car detailed.  Yesterday while I was being doctored-up I dropped the ever reliable, sensible and very comfortable Avalon off to be detailed.  When I returned late in the day to pick-up the car the detail shop was very busy and the staff was frantically trying to finish their remaining cars so I waited in the reception area with another woman of about my age who was on the phone clearly upset, seems her car was not cleaned well and she had returned it twice that day only to be disappointed again.  We looked at each other and I said "rough day?" when she blurts out "yes and I can't wait here any longer I have cancer", I was really startled and gave a small awkward laugh and said yeah me too, I just found out.  She then says really well I hope your prognosis is better than mine they have told me I have 6 months.  I could only stammer out I'm so sorry, she then said what is your name and I told her, I asked for hers and she said Sabrina.  Sabrina from Culpepper said she would pray for me, I told her I would pray for her as well.

I keep thinking about her, she looked so healthy and lovely - I mean really lovely.  She had a little black sports car with a convertible roof.  Today is chilly but sunny and I hope and pray Sabrina is tooling around in her little sports car which is finally clean enjoying herself, but most of all I hope she does well and I will include her in my prayers and if you read this I hope you will too.

Thursday, February 17, 2011

Procrastination and Gratitude

Having cancer is a sure cure for procrastination.  Yes indeed it most certainly has cured me, which is not such a bad thing really.  I've put off for years answering those deep questions about God and faith.  Because of course there was always time - so much time.  Daily, almost hourly I ponder and pray, I never ask why me because it does not matter, it is me.  I ask for enlightenment and courage.  I have most assuredly had miracles, simple experiences which alone seem meaningless but threaded together defy coincidence.  I am content in that answer.  I am humbled and grateful for the love and compassion shown to me by my husband, children, family and my family of friends.  I have never experienced such an outpouring of love towards me and for that I am  profoundly grateful.

Tomorrow I meet with my new best freinds Dr. Chemo and Dr. Radiation, I've been advised to check my modesty at the door.  Please say a little prayer.

Father why have I seperated my self from you, please forgive me.

Wednesday, February 16, 2011

From here to eternity

I knew it before she confirmed it, I have cancer.  The worst part is all my people have it with me too.  It is interesting to me that just before you pass into the room where a clearly upset doctor is waiting to share this news - you don't have cancer, but just on the other side of the door everything changes.  I don't remember much about that day a little over two weeks ago except a profound sense of sadness.  I have Vaginal Cancer, rather rare as only 2,700 other souls will hear this diagnosis this year.  I do remember driving to my appointment rationalizing possible diagnosis and concluding that it could only be Cancer or hopefully a STD.  I was hoping for the latter - which of course would present a host of other problems, including a scene where I thrash my poor husband.  And if there was ever any question I knew with absolute certainty it could only be Cancer. 

Forward to today, I now have lots of new friends who have seen me naked.  Dignity is the first to go you know.  If I was ever bored before I'm not now, after spending hours researching outcomes and side effects - which of course have done nothing to help my anxiety I've come to accept it.  My very kind and experienced Oncology doctor has assured me this will nothing more then a "bump in the road".  He is talking cure.  Well it does not feel like a bump, it is more like the pot-hole-from-hell.   I'm not afraid anymore, just resolute.

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