Infected!

A week ago I came down. Way down.  I thought I was just feeling the effects of anesthesia, amputation, foreign objects in the body, my husband's return to work, adrenaline withdrawal,  etc.. I was having chills and sleeping all day. I was alternating tylenol and advil (no more percocet for me!!) so I never appeared to develop a fever. And then I saw it: redness surrounding the incision under my right breast. I watched it for a day, and then showed my Mom.  Together we decided I should call my doctor. She told me to outline the red area with a sharpie (we used green fine point) so we could keep track of it. Then I sent a picture via cell phone, and a few hours later, my Mom went to pick up a prescription of antibiotics. I started to feel better about 24 hours later.  The redness faded slowly, and is now only slightly pinker than my flesh. I had an appointment with my doctor yesterday, and she was very pleased with how everything looks. She also thanked my Mom and me for taking quick action on my infection.

Sewn Love

My dear friend Erin made a few things to help me in my recovery. Heart shaped pillows fit perfectly underneath the arms, cushioning drain sites and keeping arms off the sides of the expanders. Although my drains are gone, the pillows remain in bed with me.  They are strangely comforting when tucked up into my armpits.

She also found a design for a variable wrap kind of thing.  It is a large rectangular(ish) piece of lightweight jersey with slits in the middle as arm holes.  Or neck holes. The picture below does not do it justice.  It can be a simple wrap, a poncho, an asymmetrical flowy cover up, a twisted, tied up shirt, and so on. I love it because I can be wearing a camisole with no bra and toss this thing on (all by myself), drape the top part down over my chest, pull up the back and tie around my waist, and voila! I have a very comfortable top on.  One that also covers my chest.

Armpit Pillows

Wrap-a-roo-thingy

Love My Parents-In-Law

For as long as my girls have been alive, David's parents have played a crucial role in taking care of them. David has always worked very long hours, often with only one day off during the week. For weeks at a time, he might even go to work before they are awake and return home after they are asleep. As my family is in Ohio and West Virginia, and David's parents are only about 35 miles away, they are our closest relatives.  Over the years it has helped me tremendously to have them to turn to. We rely on them a lot. They are extremely supportive and helpful.  And our girls absolutely adore them. Without them, I would have never had a moment for myself to recuperate from the day to day, 24/7 demands of child-rearing.  Ever. Thank you Wil and Betty.

My mom has been here since mid December. She plans to stay with us until mid April, maybe even returning in May, depending on when my "exchange" surgery will be.  One week post op, my  husband has gone back to work and the full burden of my children falls on my Mom's shoulders. My most recent arrangement with Wil and Betty, pre-surgery, was on Saturdays. David would take the girls to their house, and I would go and pick them up, mid to late afternoon. That involved David taking the car seats out of his car and leaving them for me to put in my car when I pick up the girls. The car seats are HEAVY and a bit tricky to put in. We have a "no grand parent moves the car seats" rule.  The last thing we want is for any of our parents to injure themselves. Since I am now unable to move the car seats, the Saturday visit has become longer for Wil and Betty as David now picks the girls up after work, sometimes as late as 8pm, but even more crucial for my Mom's recuperation.

Thank God for Wil, Betty and my Mom, Connie. I know my girls are safe and loved when with you.

Carden Family

The parents at my daughter's school have put together a food train for my family and me. Since the day of my surgery, they have been providing us with dinner every day. Their generosity, love and support is phenomenal and I feel truly blessed to be a part of this wonderful group of people.  I love you right back, Carden!

Last Night and Today

Last night with the girls was pretty miraculous!  I participated in the normal bedtime routine, which lately consists of bath, bingo, go fish, short show and snack, use the potty, brush and floss the teeth. Then I hugged and kissed them, said good night, and my Mom got in to bed with them to read them a book and stays with them until they fall asleep. There was no screaming.  No hard crying. I was so relieved.  So far, the same holds true for tonight. I miss snuggling with them, but I am so worn out that I  am happy to be able to go to bed without my heart hurting, too. I am so proud of them for adapting and so grateful for my Mom and David taking over.

Today I went in for my first post-op visits with both my plastic surgeon and with my breast surgeon. They were both very pleased with how everything looks and my plastic surgeon took my drains out. Woo Hoo!!! Everyone was right, I feel so much better without those things poking into and out of me. I can sleep on my side again!  Tomorrow I get to shower!

My pain is ever decreasing. I have added ibuprofen and am decreasing the percocet. I am going to try just ibuprofen during the day and percocet and muscle relaxer at night. I can always increase again if I need to, but my brain feels slightly outside of my head when I am on the percocet.  I don't care for that effect anymore.  And my gut is inflating from all the poop that is storing up in there. Nice, I know.

I wish the itching would stop.

Most importantly, my pathology came back normal! Nothing abnormal, nothing scary. This was when some tears came, today. Relief. Gratitude.

Pain?

It is a very odd sensation to have a deep and heavy pain across my chest, with occasional sharp, stabbing, worst pain I have ever felt kind of twinges and to simultaneously have no feeling across the skin of my chest. It hurts so bad and I can't feel anything.

My heart hurts a ton, at the moment.  Last night, as my first night home from the hospital, went pretty much as expected.  My mom and husband tried to get the girls to sleep without me in their own bed, but after a lot of screaming and crying, they both ended up with me in my bed.  David slept in their bed and Olivia eventually joined him there.  Tonight, I tried reclining on the outer edge of their bed, rather than in between the girls, so it would be easier to get up later, but they ended up fighting over who got to be right next to me.  We tried positioning them at a diagonal so they could both have their heads by me, but neither girl wanted that. My mom offered to sleep on the other side, and that was okay with them for a minute, but it didn't solve the issue of who got to be next to me.  My pain medicine was wearing off and I was feeling the effects of being up for most of the day. In their attempts to maneuver in next to me, I got bumped and squished a few too many times, and I had to remove myself from the equation, much to their fury. When I came downstairs, I could hear Olivia doing her banshee scream. David can't really tell me what happened, but after a couple minutes it stopped and he came down and my mom stayed up with the girls. And it is quiet up there now.  Phew!

At bedtime, the later it gets the more unreasonable the girls get.  I wanted to be sensitive and try to find something that would work, but I had to remove myself from the middle of it.  It is painful to walk away from them when they want me.

Bravo Mom and Bravo David!!  I thank the stars that you are here to weather the storm.

Pain and itchiness

When the pain meds are fully in my system, I feel okay. When it gets towards the end and is almost time for the next dose, I am hurting pretty bad. But, I am now taking only half the dose  I was taking while in the hospital.

The adhesive bandages stuff (fancy saran wrap)  they used on me makes me super itchy.  My plastic surgeon removed it and put plain, fluffy, gauzy bandages over my incisions and where the drains come out.  I am still itchy, but it, too, does seem to be decreasing.  I cannot see my incisions yet, but I can see my breasts, and I have to say, they don't look all that bad!.  The doctor filled the expanders a little so I have a bit of projection, but the skin and nipples look pretty traumatized.

Taking deep breaths hurts, but I know how important it is to keep breathing deeply. Also, occasionally  I have an extremely sharp pain in my left armpit. My doctor said it is nothing to be concerned about and that it will lessen, too.  It might be the expander folded on itself a little, or some thing that got moved around in there is protesting. Whatever it is, it is nearly unbearable.  When the armpit pain comes, I get surprised every time by it's intensity. But so far, this particular pain only lasts a few seconds.

Proximity

After two nights in the hospital, I came home late morning today.  I love my doctors and nurses. The nurses helped me breathe through some pretty horrendous pain and vomiting.  When I was finally able to get up and walk around, I realized that I was in the cancer unit, cancer free. Not the case for anyone else in the unit. There is only a hair's breadth between having cancer and not having it.  It is humbling beyond belief to have had the chance to broaden that breadth for myself. Thank you Universe! And Science!  

Today is the day, and love is the answer

My husband and I are about to leave for the hospital. Surgery is at 12:30, expected to last 4-5 hours. A few heart palpitations this morning, otherwise I feel pretty calm and peaceful. Breathing deeply, often. I am focusing on all the love that is in me, surrounding me, flowing my way, and breathing out from me.

Anxiety

Anxiety is a funny thing. I felt so peaceful and clear yesterday and in the middle of last night I dreamed something scary (in the dream I ate bad sushi and immediately came down with a severe sore throat and body aches). I drenched the bed in sweat. I was awakened around 2 a.m. by my older daughter's nosebleed so I stayed up with her for a while and then crawled into their bed in my cold, soaked pajamas.

Catalyst

Grace.  I am savoring this moment of Grace.

Yesterday I realized that my decision to have a PBM was the catalyst for some changes I have made in my life.  Several months ago I was asking the Universe for help and my inner voice said, "I need Yoga." What I came into far surpasses what I had imagined I would find when I went looking for Yoga. Thank you Western Yoga College. Namaste.

When my friend Susie, a massage therapist, was working on/with me, helping me prepare body and soul for surgery, that voice said, "I need to paint." I have been making art again. After pouring my spirit into raising my girls, I am sharing that spirit with a different part of myself again. Thank you Susie. Your painting is ready.

This moment, right now, I feel really good. I feel whole, and happy, and inspired, and loved, and taken care of.  Its pretty incredible to hear myself think that.

Sleep Away

This morning I am away from my girls. A dear friend of ours used his connections to get my husband and me the “family” rate for a room at a seaside resort. David and I needed a little couple reconnect time before my surgery. It is simply beautiful here. We saw a feeding frenzy of dolphins and seabirds while in the distance humpback or gray whales passed slowly by.

Usually I wake up in bed with my girls. They are both very attached to me at bedtime. I creep out after they fall asleep. One of them will beckon me back in the middle of the night and there I stay. I am not going to be able to do this for a long while so this seems like the natural time to help them learn to fall asleep without making a mommy sandwich. I will need a lot of help from their Daddy and my Mom. Last night while David and I were away, my Mom got them to sleep with no trouble. This is an enormous relief. Things might be different when I am actually in the house (they always are), but at least they all got a little practice in. This was only the second time in their lives that I was away from them overnight.

Speaking of my Mom, she is a godsend. I would not be able to have this surgery now if she were not willing and able to leave her life in Cleveland and come stay with us to be chief Grandma in residence. She is an R.N. and the girls adore her. I am incredibly fortunate to have a great relationship with her. Thank you Mom!

Longevity

Not all the women in my family die from ovarian cancer. My Aunt will not.  I will not. I had a risk reducing salpingo-oophorectomy (tubes and ovaries) and hysterectomy in August 2012.  Just to clarify, BRCA 1 does not increase the risk of cancer of the uterus. Having had abnormal paps in the past, and difficulty with progesterone in birth control pills, my doctor (a gynecologic oncologist) and I decided to remove my uterus and cervix, too.  I now use an estrogen hormone replacement patch.  The low dose of estrogen will not significantly increase breast cancer risk, and the estrogen is crucial for heart and bone health. Also, I did not suffer any of the usual symptoms of menopause.

Not all the women in my family die young. My maternal Great Grandmother lived to be in her mid eighties, and my Grandmother is in her nineties. Lets keep that trend going, Mom!

BRCA in the Family

My BRCA mutation comes down from my father's side. My Great Grandmother and two of her sisters died from ovarian cancer in middle age. My Grandmother Amy died from ovarian cancer at age 43. My Aunt Ellen had her ovaries, tubes and uterus removed prophylactically at 30 years old (thank you doctor!!). Even though removing the ovaries reduces risk for breast cancer by half, she got breast cancer (estrogen receptive) at age 48, and a separate second breast cancer (triple negative) at age 67. Previous to my Aunt Ellen, the women in my family did not live long enough to get breast cancer because they died from ovarian cancer first.

When I was growing up doctors would tell me that I did not need to worry about the cancers on my father's side. I was always skeptical about that advice.  My Aunt Ellen was the first in our family to be tested for the mutation and I found myself relieved that there was an actual thing that could be identified.  After my Aunt tested positive in 2007 I tried to get tested too. I was in graduate school and the medical director (a doctor) of the health center opposed the idea. He actually asked me "What if it is negative?"  Without his support, the school insurance company would not test me, even with my family history. During this time, I had an excisional biopsy of a mass in my breast that had shown some abnormal cells from a core needle biopsy. The pathology was normal but the process of mammogram, biopsy, and surgery to remove the mass was very stressful. It was painful, too.

My husband and I decided to forgo the school's insurance for me and I got coverage through his employment.  Insurance still would not test me unless my Dad got tested and was positive for the mutation too.  So he did, and he is. Thank you Daddy!  Men who carry the mutation are at higher risk for certain cancers, too, although not at the same high risk levels that women carriers are (I am not sure about prostate cancer...need to look that up again). Two years later (2009), I was finally able to get tested. I went through genetic counseling before and after testing so that I would fully understand what a positive result meant.  The genetic counselor was very grave as he told me the news.  I was holding and breastfeeding my six month old daughter during my appointment with him.  She has a 50 percent chance of inheriting the mutation, as does her little sister who was yet to come.  The counselor asked how I felt about the news and of course I was disappointed to have it, but not surprised. I would have been more surprised had I tested negative.  Ever since I was a young teen I have considered myself high risk for ovarian cancer. Now I just had to wrap my head around the rest of the risks.

Impending PBM

In ten days I will undergo a prophylactic bilateral mastectomy (PBM). Really. Yes, it is pretty drastic. Severe. Horrible sounding. I am at peace with my decision, though. Here is why:

I am BRCA 1 positive.  This gives me an extraordinarily high risk of developing breast and/or ovarian cancer.  It is not a guarantee, however.  The approximations are thus: I have up to an 87 percent likelihood of developing breast cancer, and up to a 60 percent likelihood of developing ovarian cancer.

After I made my decision to undergo a prophylactic salpingo-oophorectomy (ovaries and tubes removed) and a PBM, I found this tool created by Stanford:

http://brcatool.stanford.edu/brca.html

It simply reinforced my choice.

In August of 2012 I had my ovaries and tubes removed.

Over the last several weeks I have been readying myself to have the double mastectomy.  I have scoured the web in search of other women like me and have found a great amount of first hand experience. The women who have preceded me on this journey have provided me with invaluable support and direction.  One piece of advice I am heeding is to blog about my process.  So here goes.