Lymph, Laugh, Love

Lymphedema is still an issue. My body is not cooperating. I'm really lucky because I don't have a bad case of lymphedema, but I need to get it under control before it gets bad. I don't even want to discuss the icky pictures I saw of what happens when it gets out of control (lymph can leak out of your skin!).

Wrapping, which is supposed
to help move the fluid out of my arm,
seems to be pushing it into my hand

While researching plastic surgeons, I found a hospital in New Orleans that specializes in all issues related to breast cancer and recovery. The Center for Restorative Breast Surgery (breastcenter.com)offers microsurgical repair for some lymphedema patients, where they actually move nodes & surrounding tissue from an area that is less likely to flare up and move them to where you've had nodes removed. If you read up on the lymphatic system, you'll find it is a really wimpy system, so the fact that innovative surgeons have devised a way to surgically repair it is amazing.

Charlotte thinks the Caresia
sleeve looks like "superhero muscles"

Don't get me wrong, the 4 weeks (so far) that I've been in physical therapy have helped. We're going to re-measure my arm next week, but I can see that it's not as puffy as before. And, while my hand swells up after wrapping, it does go down with the help of pumping, massage & the Caresia sleeve and glove. I've been lucky to work with so many of the great physical therapists at BiB (shout outs to Beth, Michelle, Sally & Katie). Katie thinks I may be ready, next week, to get fit for a compression sleeve and gauntlet, and those are much easier to deal with. Woohoo!

Radiation has started. I'm 5 treatments in (23 to go!) with nothing to report other than a little anxiety, which seems to be easing, and some redness and itching, which didn't develop until after treatment #4. I've been applying the Radiaplex Gel (which is really a cream, not a gel) and Aquaphor 3-4 times a day to help keep the skin moisturized and hopefully help prevent any skin issues. I find it is easier to use the Radiaplex during the day because it doesn't make my clothes stick to my skin the way the Aquaphor does. Aquaphor is an excellent product, but it is really thick and doesn't absorb quickly. I think it is better to use that one at night as I don't really care if my pajamas stick to me while I'm sleeping.

The door to into the radiation suite
resembles a bank vault door and
this sign welcomes all who enter.

I have radiation every weekday. Denise, one of the technicians, was able to redo my schedule so all of my appointments were first thing in the morning. I get up each day, shower off all the creams and gels (because you must have perfectly clean skin before they burn the crap out of it) and head into town.

FYI: Perfectly clean skin includes not wearing deodorant/antiperspirant. I live in the south, and it's summer. It's hot, even in the morning. Get where I'm headed here? It's not bad, but I'm really conscious about it, particularly when I am laying topless on that table with three to four people leaning in over me at any given moment. Uncomfortable! Why no deodorant? Because of the aluminum. All of the docs there, and the plastic surgeons I've encountered thus far, are anti-deodorant. There is, in fact, an entire school of thought that thinks deodorant will kill you. Ok, maybe I'm exaggerating a little. Seriously, look it up!

Anyway, when I arrive at radiation, I check in and walk back to the changing room. I have a purple gown ( a clean one each week) waiting for me in my cubby. I change and wait some more. When I'm called in, birthdate verified, I go directly to the table, hop up and disrobe from the waist up. It's cold in there, so I guess it's a good thing I don't have nipples anymore. The techs make sure I'm lined up (red laser beams and lights from the machine have to line up with the 6 tattoos I got during planning) and then we get started with at least 2 XRays each time. They are constantly checking and rechecking that everything is lined up correctly. The machine moves around a bunch and makes loud buzzing sounds. The pins inside the machine that control the field of treatment remind me of those toys where you could push the pins in and they'd hold whatever shape you pushed in to them.  At some point during treatment, one of the techs comes in, asks me to take a deep breath and then draws dots on my chest.  I usually forget that the dots are there and go about the rest of my day with black Sharpie marks on my chest, showing above my shirt collar. I spend most of my time on the table holding my breath and taking breaths. I hear "Take a deep breath. Let it out. Take another deep breath and hold it....  You can breathe." about 15-20 times each treatment. Dan, the lead tech, tells me I am good at this, holding deep breaths within 1mm of the depth of breath I took during the planning session each time. Go me!

In other news, I've scheduled a consult with Dr. Zen at Duke Cancer Center to discuss my reconstruction. I was just saying I could use a little Zen in my life! I'll see him on July 9th. I hope he has some good news to report about my reconstruction options, and that he's very straight forward with me about what I can expect. I don't really care for surprises. I can be a little type-A. I'm sure you've picked up on that by now. I'll let you know how that goes.

The last bit of news is that I've finalized the schedule for my hysterectomy and port removal surgery. It'll be on July 18th. I've been instructed that there will be 3-4 weeks of downtime, the first week will be icky, beyond that I'll probably feel pretty good, but I have to rest and let my body heal anyway. We'll see how that goes. If you're doing the math in your head, let me help: yes. I will still be in radiation treatments at the time of surgery. Surgery is on a Friday. I'll have radiation in the morning, head over to the hospital, have surgery, stay overnight, recoup the rest of the weekend at home, and then back to radiation on Monday. It probably won't be fun, but Dr. Kotz was pretty adamant that I get the surgery done A.S.A.P.  And, I'm getting a little anxious myself. I've heard of more women who've had clear scans of their ovaries and were "riddled" with cancer when they had their surgeries. My scans were clear. I have no symptoms of ovarian cancer and I have no reason to believe they'll find anything. That said, I'd appreciate not hearing about any more instances like that. I've had about enough things to face bravely this year. I need a vacation from all this!

Three Things

The other night, my daughter asked me what it takes to be brave when you are sick. The question came out of nowhere, at bedtime, when she's her most philosophical. I felt a little unprepared to answer it, at first. Usually, I'd ask her what she thinks, both because I love to hear how her mind works, to listen to her explain the connections she's making about this world as she grows up just a little too fast in it and because it buys me a little time to think. This time, though, I didn't ask what she thinks.


We've talked a lot about being brave in this family. Life brings hurdles that we must choose to face or flee, and many times those hurdles and those choices can be scary. The only regrets I have are rooted in situations where I chose not to face my fear, where bravery felt furthest away, where I couldn't conjure the strength to say "I can do this!" I don't want my daughter to miss out on important experiences because she is afraid. I want her to know about herself what my mom taught me when I was little, that she can do whatever she sets her mind to. That with hard work, perseverance, and the hutzpah to face your fears, you can achieve so much in life. I want her to take calculated risks, to feel the rush of a hard earned accomplishment. I want her to feel so loved by her family that even when she is scared to do something, she feels secure, safe, and loved, the way I do.


I've watched her face many challenges, some tenuously, some with fierce determination. I see a lot of me in the way she approaches the world. My girl knows she is strong, but she is also fearful. I worried that she would grow up like me, with regrets for not having done things because of her fears. But I also knew my urging her to be brave when she felt scared had sunk in the minute she told me to be "brave like a tree" when I was first diagnosed.  I could tell she was making important connections between what we'd talked about and the world around her. I know she looks to me, and to others in our family, for models of what those things mean. So, when she asked me what it takes to be brave when you're sick, I knew the three things I needed to share with her. The three "F's" that help you face your fears:

1. Faith. You have to know, to believe, that God will see you through.
2. Family (the one you're born into and the ones you choose) to lend support, of which I've had an abundance.
3. Focus on the positive, because having that helps you see past the fear.

I'm lucky to have those things. I hope she will continue to have them in her life, to face the things that scare her, to summon that brave tree when she needs to. I hope you all have that too.

Wrap it Up!

My lymphedema was reassessed Thursday morning. Beth at BiB found that there was more fluid around my elbow and the measurements were up in my hand and wrist as well (not by a lot, but enough to make me a candidate for wrapping before I get fit for the compression sleeve and gauntlet).


I spent less than 24hrs wrapped like this (with the foam compressions garment underneath compression bandages):

But by midmorning Friday, my thumb and fingers were swollen and the bandage had unraveled around my hand and wrist. I took it off and my arm and hand looked like this (and hurt):

So I went back to BiB for a rewrap, this time with thinner foam, more access to my fingers, which are now taped, like this:

And I have to keep this on (and dry and clean) until Tuesday, when I'll have PT and the pump again, and then get rewrapped. And this will continue until the fluid moves out of my arm.

 I don't know about others that have experienced this, but I'm not feeling the love for this lost lymph fluid. I'm about to throw an eviction party.


Ok, maybe I'm just looking for an excuse to throw a party =)

Primary Treatment, Phase 3

Now that surgery and chemotherapy are behind me, it's time to start radiation. I met with Dr. Papagikos Thursday to discuss radiation treatments and how we would proceed. We discussed the benefits of radiation versus proton therapy, what to expect from treatment and even how I tended to have every side effect from chemo. Dr. P laughed and told me "it's a good thing there are no side effects for radiation." A joke, of course, but I'm glad he has a sense of humor.

At least these marks are
temporary. This is what the
techs drew on me. The actual
tattoos are just large dots.

I went Monday for the radiation planning session, where the techs (Wendy & Brenda) "map" me. I went to this appointment alone, which was stupid because I could've used a hand to hold. I got anxious as I waited in a treatment room for the techs to come and get me. Anxious to the point that I was fighting off tears. Wendy came for me, brought me in to the room where they scan and mark patients. I got on the table, exposed from the waist up, and the minute I got horizontal, the water works started. I couldn't move, not even to wipe the tears, so I was thankful when Brenda noticed and brought over a tissue. I claimed my eyes were just watery as a lingering side effect from chemo (not entirely a lie - it does happen fairly often) and tried to mask the quiver in my lips. I'm not sure if I felt more scared (of what, I don't know), or alone, or exposed, or what... I couldn't help but hear Charlotte's voice reminding me to "be brave like a tree." After they finished making the mold of my position, Wendy and Brenda drew on me with purple and black markers and sent me through the CT Scanner for the first time, breathing normally. A second scan followed in which I had to hold my breath. Patients are asked to practice this technique daily. There is a lot of breath-holding in radiation therapy for left-sided breast cancer (it helps to keep major organs, like heart and lungs, out of the treatment field). I was still in position when Wendy approached from outside of my field of view. I barely had time to process her saying "This is gonna hurt" before she stabbed me in the sternum to make the first mark, a tattoo that resembles a black freckle. Doug says it looks like graphite from the tip of a pencil broke off under my skin. I cried then, full on, even crying out when she did the second one on my left side near the expander. She asked if she should keep going or give me a break. "Go!" I whimpered. It was over quickly. 5 marks in all for now, and they will be with me for life. Now we wait, anywhere from 1-2 weeks, while they finalize my treatment in the computer, getting everything lined up ever-so-perfectly. When I go back, we'll do a dry run, with regular Xrays, to make sure that everything is lined up correctly, I'll get my 6th mark (yep, still another one to look forward to), then we'll schedule and start the actual treatment. I will have anywhere from 28-33 treatments (which will also be finalized during the next week or so), every weekday for the next 6 weeks.

My follow up with Dr. Kotz (last Monday) went well. He noted my "unexpectedly good" recovery from round 6 of chemotherapy with very little lingering pain. According to ASCO guidelines, there is no need for follow up scans unless symptoms arise later that indicate a need for them, so I can go ahead and get my port out (YIPPEE!!). Dr. Kotz doesn't want me to wait until after radiation to get my hysterectomy. As long as we get the scheduling right, allowing a weekend for recovery from the surgery before I need to be mobile, I can go ahead and have the surgery while I'm going for radiation treatments.  I'm scheduled in mid-July for the hysterectomy, and hoping that Dr. Weinberg can join in the fun, removing my port while I'm already under sedation rather than undergoing another surgery for that. Dr. Foiles, my GYN is an amazing doctor and person. Seriously folks, every patient of hers I've encountered has echoed that sentiment and she's even taken the time to send me several hand-written notes of encouragement. I couldn't be in better hands!

We visited with the plastic surgeon again last week. It was the 9th time I'd been to his office since my surgery in December. As usual, he looked at my chest and said "looking good!" But later in the conversation, it became apparent that wasn't actually the case. I wanted to confirm what he'd said at an earlier appointment, about completing the second phase of my reconstruction in early December. He asked me about radiation scheduling again, and then said I would have reconstruction in February of 2015, at the earliest. We were shocked of course, because this differed from his earlier timeline, which was already a change from his initial prodding, and because this means we'll be facing another calendar year of meeting insurance deductibles and catastrophic caps. He went on to say that my skin was still very tight, not "letting go" the way other women's skin has in the past. Usually, at this stage, he has women filled to the max 800cc. I'm only at 480, my skin is tight and thin around the incision. He said the skin over my left breast is likely to get even tighter as a result of radiation and may mean I can't have the implant surgery like I've been planning all along. He related a story in which a young woman with tight skin, like myself, had the implants put in, only to have the scars rupture and the implants come out because the skin was simply too tight. Later in the conversation, as we discussed the alternatives (a TRAM or DIEP Flap surgery), he tried to reassure me that he wouldn't do a surgery he knew would have bad outcomes. Meanwhile, he'd just told us he'd done just that. Ugh! Flap surgeries are MAJOR surgeries that create breasts by removing tissue and skin from the abdomen with 8-10 weeks of serious recovery time. If I want to have "breasts" again, I may have no choice but to go that way. I do however, have a choice in surgeons, so I'll be contacting my insurance company about pursuing a second opinion. I know from the many enthusiastic recommendations I heard about him that he is a skilled and experienced surgeon. That said, he still may not be the right surgeon for me and I think it is about time I consider my other options.

My arm after the pump. Charlotte thinks
it looks like alien skin.

In the meantime, I'm back at Bodies in Balance for more PT with Beth & Michelle for lymphedema. I have about 2-3cm of lymph fluid build-up throughout my arm and into my hand. I'll have PT 2x/week, including 30 minutes on the pump, plus I'm being fit for a compression sleeve and gauntlet. We are going to reassess when I go in on Thursday, and they may decide I need to do wrapping before the compression sleeve stage. Wrapping is more restrictive, but will help to move the fluid, rather than to just maintain.

Charlotte waiting patiently
for my PT appointment.

When I met with Michelle this morning, she took some metal tool with a beveled edge and worked on some more cording. That hurt. But we are making progress so I will deal with whatever pain I need to. I actually enjoy going there. Even if they don't last very long, I can see immediate results and I know that, in the long run, Beth & Michelle will help me relieve some of the pain and swelling. They have done a lot of training in breast cancer related modalities, and, in a way, they are teachers (like me). Not only are they helping me along my recovery road, but they are teaching me, so I can help myself too.

Also, my hair is starting to grow in. I have a few more eyelashes, really tiny eyebrow hair which I accentuate with eye shadow (thank you very much to videos posted on YouTube) to give the "illusion of eyebrows," and the hair on my head is making progress. It's still hard to tell what it might look like when it comes in. It looks dark in some areas, but light in others, straight in spots, hints of curl in others. There are a few hairs that are longer than the rest, kind of Alfalfa-esque (who out there is old enough to get that reference?). I'm thinking we should start a pool and bet on what's to come. Right or wrong, I'd still be winning because I'm getting brand new hair!

Surviving

What does it mean to be a survivor?


By definition, a survivor is someone left over, someone remaining or living when others who've experienced a similar event aren't. A survivor is someone who outlives, outlasts, copes with and/or perseveres. Don't we ALL fit that definition? Simply by existing in this world, having survived childbirth, we are all survivors, right? Isn't the simple fact that we live through the experience of child birth part of the reason it's referred to as "the miracle of birth?" I don't know about you, but since that moment I've experienced a rapid succession of events I've survived. It occurs to me that these events turn into the stories we tell one another, how we relate to each other, get to know each other. I've survived an acute respiratory distress syndrome called Hyaline Membrane disease (when I was born), a nail across my scalp from a roller skating incident, being attacked by a dog, falling into a broken sprinkler system (I only include that because my brother called my mom at work, worried I would bleed to death), being chased by crazy-naked-circus man, choking on a cough drop (thanks again for the save, Bobby!), basic training, war, a second-story deck collapse, and that near-drowning episode last summer to name a few, and really, that's only a few.


The thing is, I don't really feel like a survivor. I look back and think about how lucky I've been to have support through every trial. I'd never have made it this far on my own. I do think that my survivor stories reveal other things about me, the traits that, when pieced together, create the visage of the whole person. I'm klutzy, goofy, an extroverted-people-person with just a touch of shy. I love wholly and fiercely, family and friends alike. I'm an open book. Sure, I've got skeletons, but there is no closet. Somebody out there knows all of my stories, or, at least, if you all got together, you could piece together a pretty solid timeline of my survivor-life stories. Hopefully, if you ever do that, you'll laugh and smile through it all.


Maybe surviving is more like that reality show.  Gather up a bunch of breast cancer survivors, stick them on some remote island with little more than each other and the clothes on their backs and see who's the last one standing. From what I know of breast cancer survivors, we'd all still be standing together at the end of the show, one big alliance, arms linked together in defiance. If breast cancer can't bring us down, no silly show or prize can do it. Ok, maybe that million dollar prize would help pay for the ridiculous price tag associated with surviving, but I'll save that discussion for another blog (I'm still researching).  Truth be told, (breast) cancer survivors are some of the most helpful, supportive, encouraging and open people I've met, always willing to share their stories, pass on their wigs and caps, answer questions, lend a shoulder for support.


I encountered a definition of cancer survival as starting at diagnosis. The very moment you know you have cancer, you are surviving it. I struggled with that at first. But, in thinking about it, it dawned on me that each day a person wakes up is a victory. Maybe we should call people "champions" and award trophies for the milestones. We could call the trophies "Slammies" aka "Surviving Life Grammy," but we'd all need to put additions on our homes to accommodate all the awards and swag-bags. It'd sure be fun to have a black-tie awards ceremony to attend every now and then. Just-sayin'!


My doctors seem to agree that survival starts when the cancer is gone. For me, that was after the mastectomy. But if that were totally accurate, I wouldn't have had chemo or have to have radiation treatments to attack any remaining cells. I think that it should start after the major modalities, like surgery, chemo and radiation are done, but before the extended stuff, like Tamoxifen, which, as I understand it, works to prevent a recurrence.


My personal definition of surviving really comes down to living. I'm stubborn, willful, and determined. I will keep living as long as I can, enjoying as much of life as I can, and when I can't live here any longer, you know I'm gonna love it up in heaven! I am, however, planning to stick around for quite some time (and listen to this song by Ingrid Michaelson, a lot - thanks Natalie, for the album!).