Carol Vose

Thursday, October 27

I had a radical mastectomy on October 7th.  Prior to the event, I was terrified of dying during the surgery.  I was afraid of having general anesthesia, and could not make peace with the decision to have surgery.  So many loving people carried me through the experience.  My father came a day or so before and spent hours with me, comforting me, loving and encouraging me.  My husband was absolutely dedicated to helping me manage each day- indeed, each hour.  His constant love and reassurance was a blessing.

My pastor, my friends, my family all expressed love- everyone was so accepting of my fears, listened, and patiently offered the support that gave me the courage to make it to the hospital.  Dawn, my nurse advocate, my mother and my husband accompanied me.  My pastor gave me a small cross made of olive wood strung with a pink ribbon.  When she put it in my hand a sense of calm flowed into me.  I wore it through the surgery.  

I had a nerve block as part of the anesthesia, a painful process where needles delivering painkillers punctured a length along my spine- I cried, blood crept down my back.  I recall being taken to the operating room, looking at the lights above me…  Next, I woke in a bright room with nurses calling my name.  I was deleriously happy to have survived! 

My torso was wrapped in a foot wide compression bandage, it felt extremely tight.  When I tried to move, the pain was overwhelming.  The problem with pain management was that my body is very tolerant of opiates- it was hard for the doctors to get the dose right, as I already take a daily course of narcotics.  The first day I had pain meds every two hours.  Chad stayed with me overnight, a cot was set up for him in my room.  At one point I got up to use the toilet and was overcome with searing, uncompromising pain- all I could do was gasp and scream through tears.  Chad held me until the nurse came, the meds were adjusted, and the pain was less challenging. 

I went home after two days to stay with my mother in Camden.  A visiting nurse came every other day to check the incision and monitor my blood levels.  As I have had a clot in the past, I am on a blood thinner.  My blood was sluggish, it was hard to get it to the correct level and I had to give myself shots in the belly for about a week, in addition to the medication. 

My mom drove us to Scarborough to have my bandages and drains removed; I was aprehensive to see my scars.  It was challenging, but my mother was with me and the medical staff was very understanding.  My mastectomy scar runs from near underarm 7 inches slopingly, horizontally across my chest. 

The surgeon removed an unexpected fist sized cancerous mass from under my arm: this tumor was hidden behind the muscles, it showed on the scan only as a lymph node infected with cancer.  As a result of surgery, the area under my arm is sort of concave, with little hills on either side, a bit scary looking.  It feels very tight, but I am using my arm and fortunately, there is no swelling as of yet.  

The surgeon got clear margins on all the tumors!  I am home for a couple of weeks, the next step is 5-6 weeks of radiation, which will begin November 9th.  I will again stay with my mother in Camden and treatments will be daily, in Bath, about an hour from her home.  Transportation will be arranged through a community ride service. 

Meanwhile, my energy is returning.  Creative ideas are flowing and I’ve begun a project of collaging my bedroom dresser.  I’m excited to be working with bright colors and patterns!  Friends have been by, and we’ve been treated to delicous foods- chowder, home-made bread, apple pie…!!  I’m so glad to be here, enjoying my husband, stepson, friends and family.  Dear friends spent a day with Chad cleaning our home from top to bottom- the place looks and feels so comfortable.  I feel blessed. 

Before going into surgery I felt like a soldier going into battle, I pictured putting on fighting gear and painting my face, picking up my weapons and going forward into the unknown.  Now, I feel like a person home from a war, able to breathe peace, to appreciate the things that make life sweet.  I am surrounded by spiritual messages of stength and hope.  XX C     

Monday September 26

My mastectomy is scheduled for Friday, October 7.  I have not been able to make peace with this decision, I guess that will come later.  Previously, I gave myself way too much credit for being able to cope with the situation.

Twice I’ve changed my mind about surgery- both times because I don’t believe I’ve done everything I can to fight using alternative methods, and also because I fear the surgery itself.  I do not have the medical knowledge to know surely that the mastectomy is a good choice.  I do not want an ulcerating wound which may come if I do not remove the breast.  I would like to be relieved of the burden of active cancer, which is what will happen after the mastectomy.

I look at myself in the mirror, pressing my left breast flat and covering it with my hand, trying to get a faint idea of what I might look like.  I’ve been to the breast care center to be fitted for a post-operative camisole and mastectomy bras.  I’ve looked at a breast prosthesis.  The bras and prosthesis come after I’ve healed from surgery.  The camisole has a zipper in the front, it has a pocket inside for a soft pad that will stand in for the prosthesis until the mastectomy site has healed.  There are inner pockets for the drain tubes that will be in until the surgeon removes them.

I decided against breast reconstruction because it would have involved more surgery to reduce the size of the other breast, in order to match the new one.  Women with large breasts almost always have a reduction because the implants don’t come in a large size and the cavity in the chest for the implant can’t be made big enough- The strongest factor in the decision was that reconstruction would add hours to the initial surgery, not good for my lowered immune system.

The stress has overwhelmed me, my doubt and finality of the act itself  has combined to create a sense of impending doom.  However, after reading the thoughts of many other women who have gone through the same process, I think my “jumble” is probably expectable.  Now it is time to pull out of it and lead myself to acceptance.  I also must go shopping for button front shirts to make my post-mastectomy dressing easier!  Small smile…  XX, C

August 30

This past Friday Chad and I met with the surgeon to talk about the option of mastectomy.  It had been a long day and our meeting followed over an hour wait, I was not in the best of spirits.

It seems the new thinking in treatment for stage 4 breast cancer is to consider mastectomy under certain conditions.  Three years ago when I was diagnosed there was active cancer in many places in my body.  Over the course of treatment all but the cancer under my left arm and in that breast has been restrained into dormancy.  The burden of disease exists now in the left breast/under arm area.  A mastectomy can remove all of the active cancer, hopefully offering me a prolonged life span and some time free from active disease.

Statistics already show that women who have a mastectomy under these same conditions live longer.  So, like it or not, a mastectomy will be in my near future.  We go again to Scarborough on September 9 to hear the results of the planning meeting the oncologist, radiologist and surgeon will have regarding my case.  (The heretofore radiation plan has been set aside.)

It was difficult to keep up with the ever-changing plans, and once again I was reminded that I have to be my own best advocate.  Doctors do not consider the plans patients have to make to manage treatment, for us it means Chad having to arrange for time off work, childcare for our son, living and transportation arrangements for me as I will have treatment away from home, etc.  We were making plans as each option came to the table.  Now we will wait until the 9th of September to make any arrangements.

My oncologist didn’t tell us she considered mastectomy the best option, we learned of her opinion through talking with the radiologist.  She had told us radiation was the best option.  It was harder to absorb the mastectomy option information because it was not what I wanted to hear.  When the nurse called to arrange an appointment with the surgeon, I was still in the midst of adjusting to the radiation plans- challenging. 

I am now adjusting to the mastectomy idea, I cried a bit but I’m moving past tears because I know the best thing for my health is a positive attitude.  Many women have gone through this process, I am going to be fine.  Meanwhile, the weather is wonderful and life goes on.  Soon I will order my monthly batch of good books and movies, something to look forward to.  I’m also enjoying getting ready for my new blog…  Best, XX C       

August 21

Two months after my scan showed most of the cancer in my body to be dormant, I found another lump and had another scan.  The results are that while some of the old cancer is still retreating, new cancer has begun, and some of the old cancer also flared and requires attention.  The doctors agree my case is unique, as are all cases, but this time they are using, “off the beaten path” to describe my condition.

Initially, my oncologist planned four weeks of radiation for my breast and under arm area, but after reviewing a second scan (I had a PT scan and several weeks later an MRI) that plan is on hold.  As my nurse advocate, Dawn, explained, my case deserves special attention- the oncologist, radiologist and surgeon are meeting to come up with a treatment plan.  I had an appointment scheduled for a mapping session, when the radiologist imprints placement tatoos prior to treatment.  That was for this coming Monday in Scarborough- too far to travel in a day so we were going down today to Camden to head to Scarborough Monday.  However, with the plan now uncertain I am going to stay home until I know what my options are.

Mastectomy is an option.  I learned this from the radiologist, who seemed surprised this hadn’t been previously considered.  It had been mentioned to me by my oncologist, but there was a concern about a spot on my chest wall that might not be operable.  So, I am waiting to hear from the nurse advocate who will make arrangements for the next appointments, with whom and wherever they may be.

And the lesson is, the lessons are (at least so far): conditions can quickly change with stage 4 cancer; ride the situation with as open a mind as possible- celebrate progress yet understand it may be fleeting; remain positive to the best of your ability- but cry when you need to and don’t try to be needlessly brave; remember you are not alone and use the support sytems available to you; bear in mind although things can quickly change for the worse they can also change for the better; face what is in front of you but don’t make cancer your whole world!

None of us knows the future.  I hold to the thought that when I get through however many weeks of whatever treatment is ahead of me, most of the cancer in my body will be dormant or gone, paving the way for a longer reprieve from this disease.  Meanwhile, I am cleaning, doing laundry and prepping my family for my absence and making a tiny list of special projects I hope my husband will find time for while I am transforming.  Best, XX C.

July 22

The results of last weeks’ scan are in.  The cancer in my left breast has died, the cancer is my bones is dead, the cancer in all but one lymph node is dormant.  There are two spots that remain- the area outside my left breast where I had surgery, and the lymph node under my left arm.  These two spots show elevated levels of activity.

The doctor believes the reason for the elevated level of activity in the two areas is that the cancer there is dying- fighting the treatment but dying.  When the cancer in those areas dies, there will be no active cancer in my body.

I thought this was wonderful news, and it is- but, the doctor concluded our conversation by assuring me that the cancer will come back.  The drug I am taking that has worked so well will lose its’ effectiveness, and when it does, the cancer will recur and I will be faced with the type of treatments that cause hair loss and damage to the immune system.  She estimates that this will happen in about 2 years.

So, what has happened is very rare- most stage 4 cancers do not afford a period of dormancy.  Remission, dormancy…I think I will call it a reprieve, a state of grace that may last for a number of years, maybe many years, or maybe only a few. 

None of us knows what the future holds.  I must open my thinking to allow for many possibilities- without attachment, as best as I can.  I will live in the present, this is the only way to minimize stress and negative thought.  For today, I have a miracle, I have hardly any active cancer at all!  Now, I want to think and live beyond the doctor visits, tests, treatments, (which will continue),vocabulary and other trappings of this disease. 

I’ve been out twice this week, much more than usual, and it feels great.  I’ve started physical therapy and begun attending a support group for living well with cancer.  Friends are calling with invitations to go to the beach or have lunch, the sun is warm, the garden is awash with shades of green, yellow, blue, white, pink and red…life is good.  I’ll probably add one more post with photos of the house and garden before closing up the blog…

Warmest regards, XX C

July 10

This blog is one year old now; it is time to evaluate and adjust as needed.  I can see my hopefulness, my optimism in the start of the blog- when I was trying to meet my goals by discussing life, love and decorating.  As I became more ill, it was much harder to write and to find energy for thoughts beyond coping with my immediate situation.  I lost interest in decorating and in searching for the bright moment amidst the struggle to live. 

I will never forget how utterly undone I was at Christmas- in withdrawal from oxycontin and yet still trying to make a special occasion for the family.  I know how much fear and anxiety this illness has caused in me, and how traumatic a stage 4 cancer diagnosis is.  Now, I’m grateful to be doing so well, even though I continue in treatment and suffer from pain and fatigue.  The blog provided me a creative outlet, a place I could share and balance myself.  But in looking at its contents now, I see how hard it all has been.  Very, very hard.

Last July, when told by my doctor that I didn’t have much remaining time, I used the blog as a way to share my last thoughts and experiences with family and friends.  Months later, I decided to cancel cancer- and my test results began to show great improvement.  Finally, the breast tumor is gone and I am in (my own words) a “conditional” remission.  Next week I will have a scan to find out exactly what is happening.  I’ve been getting to this place, expressed this idea before, when I reoriented my blog to be a recovery journal perhaps? I am not dying.  I may be in the 2% of women who survive many years, time will tell.  Certainly the healing that is happening to me now offeres great hope.

I may write a short book about this past year, depending on my energy and desires.  Currently, it seems like a good idea, but I don’t want to be weighed down by anything, either.  I have to find the things that create the deepest happiness and follow those paths.  I no longer feel the need to write at large about my cancer journey, so it is time to close this blog.  I appreciate all the comments and support, thank you.  (I will post the scan results which should come about a week from now.  I may also post some photos.) 

One of my passions is old houses, and Downeast Maine coastal country home styling.  I also love the nature surrounding the homes- the woods, fields, rivers and the ocean.  …So, I am starting a new blog about those subjects very soon.  The blog address will stay the same www.carolvose.com  For those of you who appreciate the magic of old homes and their surroundings, I hope you will check out my “Half-Red House” blog, probably up by mid-August.

It is a beautiful, sunny day!  XX, C

June 25

When I began this blog I accompanied the posts with photos, something I haven’t done in quite awhile.  Soon, I will include a page of many photos related to the various posts, sort of how it would be done in a book.  I enjoy taking pictures, but the writing uses most of my energy. 

This week we will travel again to Southern Maine for a scan which will illuminate where the cancer remains and its rate of growth.  The last scan was in January, so there should be quite a difference, for the better.  I’ve had quite a bit of bone pain recently and overwhelming fatigue, which I hope is an indicator that the bone cancer is resolving.  I’ve learned that when my cancer retreats it does so in a blast of inflamation.

We were going to spend the week end at a nearby house on the ocean owned by Chad’s family, but our plans have changed due to buckets of rain.  Maybe I’ll finish the lobster stencil in the kitchen; the other day I worked on a window and it came out well.  The window faces our neighbor’s home and we wished for privacy.  To that end, I had panes of glass cut to fit over the existing ones; in between the two pieces I slid same-sized sections of art paper.  Now, the window still admits light but we have a pretty screen. 

XX, C