Stress-Free Holiday Zone

I declared our home a stress-free holiday zone this year. In fact, I put a sign on the front door stating:

Stress-Free Holiday Zone

All Ye Who Enter Must Leave Ye Worries at the Door

Prepare for Lots of Noise, Chaos, and Commotion

Also in Great Abundance Are Love, Joy, and Gratitude

One thing I have learned this year is that compared to cancer, everything else is pretty insignificant. It's all about keeping things in perspective. Also, I believe stress is a condition we create for ourselves either by the expectations we put on ourselves and/or others or by how we choose to react to the circumstances around us. These insights I hope to carry with me for the rest of my life, a life that will be more richly and fully lived as a result of these and the many other lessons learned this year from breast cancer.

It was probably the busiest Christmas I can remember, but the happiest, too. Between the sign and my new attitude, this Christmas was also the least stressful of my adult life (even though it had many elements known for contributing to stress). Since we knew I would be starting my radiation treatments sometime in December and wouldn't be able travel out of town, my family made the decision to celebrate Christmas in Toano this year. My brother, John, his partner, Eric, their nanny, Janine, and my two nephews, Kyle (5) and Daniel (2), arrived from Massachusetts the Thursday before Christmas and stayed with us until the following Thursday. My other brother, Jeff, and his wife, Julie also came from Massachusetts for the week, but the inn was full, so they stayed with Julie's parents. My Dad and Laura visited every day that my brothers were around.

A proponent of "The More the Merrier" philosophy, I extended an invitation to Bo's Dad's side of the family on Christmas Eve, for a grand total of 25 of us. On Christmas Day, we invited Bo's Mom's side of the family over for a grand total of 26 people. I had lots of helpers, and everyone brought food, so I really only had to delegate and coordinate. I also realized (after a mere 41 years) that I am not responsible for everyone else's happiness. I provided the venue, but it was up to everyone else to manage their own respective moods. This newfound knowledge has been very liberating and went a long way towards delivering a stress-free holiday - for me, anyway.

On a few occasions, family members had to remind eachother to go read the front door, but for the most part, it was just one fun week of eating, cooking, shopping, eating, talking, laughing, eating, Scrabbling, playing, and just enjoying being together... eating. I was sad to see everyone go, but Jeff is coming back to visit next month, and the family will be together again in April for my Dad's and Laura's wedding. Not to mention, we will all be together for the Pan Mass Challenge in August.

While I look forward to all of these events in the future, I learned another important lesson this year - enjoy each and every moment of NOW, even the most routine, as the present is all that any of us are guaranteed. So now that everyone is gone, it is back to our routine, and that, too, is nice.

To B or Not to B

One of the many positive outcomes of this cancer experience has been having so many wonderful people walking beside me along the journey. Of course my friends and family have been with me every step of the way, but I have also met a lot of new friends along the way. Alice, one of Bo's landscaping customers and a breast cancer survivor herself, is one of my new friends. Ever since she heard about my diagnosis from Bo, she has been doing so many things to support both me and our family - from sending cards, books, and gifts, and baking blueberry pies (my favorite), to arranging dinners to be prepared and delivered by the ladies of the Stonehouse neighborhood for the entire month following my surgery. This week, she scheduled an appointment for me to go to Richmond to get fitted for my prosthetic breasts. (Alice had a lumpectomy and didn't a prosthesis; however, she had visited this particular store for wigs while she was undergoing chemo.)

Alice picked me up promptly at 10:00 a.m for my 11:00 a.m. appointment. I wasn't sure what to expect. How is one "fitted" for a breast prosthesis anyway? I was soon to find out. It is, I imagine, much different than being fitted for an artificial limb prosthesis as basically, the "fitter", Linda, just asked me what I wanted to be, an A or a B. What happened to C and D, I wondered??? My guess is she was trying to avoid the Dolly Parton look. I, without any hesitation, said B. Afterall, I was a B before the surgery, so of course, I was just trying to replicate to the extent possible, my God-given attributes. I am thinking that I was much easier to fit than most mastectomy patients as she wasn't trying to match a prosthesis up to a remaining breast.

Linda showed my a variety of bras. My insurance reimburses the cost of the prostheses and "basic" bras. If I wanted the upgraded bras, I would have to pay the difference between what the insurance reimbursed and the cost of the bras, and that difference usual amounted to around $13.00, she said. Wow! What a bargain. I haven't paid just $13.00 since I was in training bras. She said that due to her inventory being so low at the end of the year, she wouldn't charge me the difference so even though I selected very basic looking bras, I don't know if they were the upgraded ones or not. I have never been that particular about bras, and I am certainly not going to start now. I just didn't want industrial strength looking lingerie which many of them were. There was a black shiny one that kind of resembled leather, and I asked her if it came with a whip. It didn't. I think she knew I was kidding. (I didn't select that one, by the way.)

Linda instructed me on proper care of my new prostheses, advising me to be cautious when handling them, especially with sharp fingernails, to avoid pricking them with pins, and to wash them regularly. Not entirely different from real ones. Then she stressed that they needed "rest" and should be placed upright when not in use. Okay, now that is getting a little high maintenance for silicone. The insurance company will allow me to replace them every two years, and will reimburse for new bras every year. The shop even carried bathing suits that accommodate the prostheses. (I hadn't thought about that... Finding a bathing suit just got even harder than it used to be. Luckily, it is not an essential part of my wardrobe.) They also had mastectomy sports bras and camisoles. I left with just a couple bras, with another one order. Linda only had one B at that location, so after lunch and a little bit of shopping, Alice and I headed over to their Southside location to get the other half of my new chest.

I didn't try on my new breasts until the next day when I had the occasion to get dressed up in something other than a sweatshirt and jeans and go somewhere other than my usual Walmart run. When I put them on... VAVOOM!! I guess before surgery I was barely B, like a B-. Now I am like a B++. (In Bo's opinion, and he is certainly the leading expert on the appearance of my breasts, they aren't that different from the originals, but I definitely think they are more prominent.) I briefly considered trading them in for some As, but I think they are fine. As Laura said, I earned these. I kind of feel fraudulent, like its false advertising, but since Bo is the only one who'll ever be "using the product", I guess its ethical. Besides, as my friend Erica reminded me, how many women these days truly are misrepresenting themselves through the use of plastic surgery? Our culture's whole obsession with breasts (and external "beauty" in general) is a topic for another day, but I personally don't want to get caught up in it at this point in my life.

The prostheses are actually fairly comfortable; although, I have heard they do get hot in the summer. I feel "natural" again when I am wearing them, compared to the foam inserts for my camisole that were neither comfortable nor authentic looking. The inserts liked to wander, and I would look down only to realize I was lopsized and misshapen. I would inconspicuously try to rearrange myself, but it was hard to be subtle. Linda asked me if I was planning on reconstruction, and I am still not inclined to go that route. At this point, I am satisfied with my body as it is, and I now have the option of "accessorizing."

I am grateful for Alice. If she hadn't scheduled the appointment and physically transported me there, I don't know when I would have gotten around to it on my own, and I really am glad I have the prostheses now. Plus, she really helped make a fun day of it for me, treating me to lunch, buying me a new winter hat, and just spending time with me. We gabbed non-stop from Toano to Richmond and back. I guess since she has "been there", she knows even better than I do what I need, so she doesn't wait for me to ask. (She probably also understands that even if I did know what I needed, I may not ask.)

As I was laying in bed that evening, the prostheses "sleeping" on my dresser, I couldn't help but think, sorrowfully, about how I am now the third generation of women in my family to wear a breast prosthesis... God willing, I am the last.

Royal Update

The drain is history. I evicted it. I frankly got fed up with the extra appendage and willed my body to dry up, and it did! (I wish my kids would listen so well.) After five weeks of shower deprivation, limited mobility, wearing loose fitting clothing reminiscent of my immediate post-maternity days, and twice daily sessions of draining and measuring the seemingly endless supply of lymphatic fluid, I had a serious conversation with myself. It may sound a little “out there”, but that’s where I’ve been hanging out for the last six months or so anyway. I do believe in the body’s ability to heal itself, and I felt very empowered after reading Deepak Chopra’s latest book (compliments of my friends, Carrie and Melissa). Within two days of having THE conversation , I went from 80 cc’s to 50. The following day, I was 20 and the next, 10. Never underestimate the power of a motivated woman!

I was already scheduled for an appointment to see Donna so she could check out the wound but she was actually able to perform the final drain removal. There wasn’t much fanfare, but I walked out feeling so excited and happy that I had my body back. I had been deliberately limiting my movements as to not dislodge the drain, and it feels so good not to worry about that anymore. I would like to say I got my “groove” back, but I don’t think I ever had it to begin with…. Nonetheless, last weekend, I put on that funky music, and the kids and I had a dance party in our family room.

I had promised myself a drain-removal celebration shower of extended duration, but when I finally was able to take a shower, I was running late (story of my life), and I had to cut it short. I made up for it the next day, however. It’s such a simple thing, I know, but the next time you are in the shower, pay attention to the sensations. Pleasure can be found even in the routine when you take the time and make the effort to just be aware.

I have an appointment to see the radiologist on Thursday, and I guess at that time, we will schedule my six to seven weeks of radiation treatments....

Bo is finishing up his latest round of medicine with minimal improvement to his symptoms. He is scheduling an appointment to see a rheumatologist friend of ours after the holidays. Of all of his symptoms, most noticeable to me is his impaired short term memory, but since I am still experiencing major chemo brain, this is not a bad thing. Our conversations go something like this: “Bo, was it you that I was telling about the – insert whatever story here – or was it someone else?” Blank look on Bo’s face. “Oh, well you wouldn’t remember anyway, so I will just tell you again.” I think we are having the same conversations over and over again but neither one of us can be certain. It’s best that way.

King of Pain

I haven't provided an update on Bo lately, and it's not because I only think about myself (really!) but rather because we still don't have any answers. If you will recall, earlier in the year he experienced what I affectionately called a sympathy cyst under his left nipple. He had a mammogram and an ultrasound and was diagnosed with something called gynecostomia. Following a battery of blood tests ordered by his urologist, the cause was still undetermined, and his primary care physician, apparently puzzled beyond her capabilities, just kind of gave up on him. Since then, Bo's symptoms have increased to include joint pain, swollen lymph nodes, fluid retention around his ankle, blurry vision, headaches, and probably a few more things I can’t recall at the moment. (chemo brain) That reminds me, memory loss is also one of his symptoms. He switched primary care doctors, and his new doctor sent him for physical therapy for his hip. (We are on the “family plan” at Erica’s practice which is a little kinky if you think about it….)

Erica suspects something is wrong with Bo’s back while his latest doctor suspects Bo’s hip is the problem. The doctor ordered an MRI for the back and hip, but the insurance company would only approve the MRI on the hip. (Deep sigh of frustration and resignation.) So last week Bo had dye shot into his hip and experienced the melodic (deafening), cozy (claustrophobic) MRI machine. (How many couples can say they both shared the experience of a mammogram and an MRI in the same year? It’s not a distinction to which we aspired, but bonding opportunities present themselves in unusual ways sometimes.)

So about $4,000 later, and to no one’s surprise, except apparently the doctor’s, we officially learned that there is nothing wrong with Bo’s hip. At least I had a diagnosis, and although I didn’t like the diagnosis, I was able to work with my doctors to develop a treatment plan to combat my illness. (I never thought I would enjoy using the past tense so much. I didn’t even derive this much pleasure from putting my first marriage into the past tense!) Bo, however, is caught in a physical and emotional purgatory. Not only is he experiencing troubling physical symptoms, he is anxious about the lack of a diagnosis, and consequently the inability to develop a plan of action to combat whatever illness is causing his problems.

So what to do? Visit the internet, of course. After researching his symptoms and talking with a friend of ours who has Lymes disease, Bo is pretty certain he has Lymes. It makes sense for an outdoorsman such as Bo. He gets tick bites the way “normal” people get mosquito bites. Doctor #1 did give him antibiotics earlier this summer after Bo reported he had recently pulled a couple of ticks off of himself. (I got the privilege of removing the one that set up shop in Bo’s belly button. Now that was quite a sight to see – Bo standing in front of me, with me on my knees trying to yank that thing out with tweezers. I don’t know who giggled more –Bo because it was tickling him so badly or me because the scene was so utterly ridiculous.)

Bo presented a list of Lymes symptoms to his current doctor, and after acknowledging that Bo does exhibit a number of them, the doctor agreed to treat Bo for Lyme disease with another round of antibiotics. If the antibiotics don’t eliminate Bo’s symptoms, the doctor will refer Bo to a rheumatologist to continue investigating his mysterious ailment. In the spirit of financial, uh, prudence, I told Bo to advise his doctor that we really needed to get this thing figured out by the end of the calendar year since we have already met the family deductible on our medical insurance for 2006! Bo knew I was (mostly) kidding and that my primary concern, despite my fiscally conservative nature, is first and foremost, his health. (Really!)

Queen of Drain

I am not sure what the world record for post-mastectomy drain duration is, but I am certain I must be in the running. In fact, my drain has applied for permanent residency. I had the opportunity to visit with Santa a week or two ago, and while I was perched comfortably on his lap, he of course asked me what I wanted for Christmas. At the time, I told him my hair. If asked today, I would request a drain-free body. (Actually, I want both!) Thirty ccs is the magic number, and I am still draining in excess of 70 ccs in a 24 hour period. At the rate I am going, I may have a full head of hair before I have a drain-free body. If hair grows at a daily rate of (y x 3 - ab), and lymphatic fluid drains at the rate of (x + 5)(y + 2), and Santa's sled leaves the North Pole five hours later, which will arrive first?

I called Donna, the nurse practictioner, last week to see what, if anything, I should do/could do. She suggested I give it one more week. She asked me how much I was moving around and when I admitted that I was probably a little more active than the average mastectomy patient, she strongly suggested I take it easy. Well, I did take it easy for me, and I definitely reduced my activity level, and still, I drain in large quantities, darn it! Well, it is mostly just an annoyance, and as long as it doesn't mean that something is wrong, I can be patient... for now.

I began physical therapy last week. One of my friends, Erica, happens to own a physical therapy practice. Erica and I became acquainted when I was dating Bo. Her husband and Bo had met on the mountain bike circuit, and when Erica and I were introduced to eachother, we immediately hit it off. Ten years, two husbands (one apiece), two dogs, and six kids later (she has three also), I find myself on her physical therapy table and under her gentle and capable care. We always bemoaned the fact that our lives were so busy that we weren't able to get together as often as we would have liked. I told her that it was pretty sad (and extreme) that it took cancer for us to see eachother on a regular basis, but getting to spend time with Erica and having her involved in my healing is one of the many gifts that has presented itself along the way.

She measured the range of motion of each arm. We are aiming for 180 degrees. On the left side, I am at 140 degrees. On the right side, I am at 117 degrees. She sent me home with four exercises I can do on a daily basis. As my body heals from the surgery, I guess it is the scar tissue that I feel tightening things up, kind of like cement drying. It doesn't hurt, but my movements certainly are restricted, and if I move my arms too much in a certain direction, it does hurt. Erica says to do my exercises only to the point of feeling the stretch, not to the point of feeling pain.

I told Bo yesterday that my breasts hurt. He asked, "What breasts?" Oops. Oh yea. I meant where my breasts used to be. The incisions are healed, but the area is sensitive to the touch, to the point that the foam inserts (my temporary shape) can cause discomfort. I do not want to wish my life away, but I am looking forward to the day when the surgery site is completely healed, I feel no pain, and I can move my arms the way I used to. Not having had surgery before, and not having fully discussed recovery with Dr. H, I don't know if this is a realistic goal, but realistic or not, it is certainly my objective.

One evening right after the surgery, several of us were sitting around the dining room table, doing what we do best, eating and talking. I mentioned that I had read that some women report "phantom pain" following mastectomies. As happens with people who lose limbs, these women actually feel pain in breasts that no longer exist. Jeff, ever the family wit, suggested that maybe I would get lucky and feel "phantom pleasure." Hee hee.