Marching Orders

With my last Chemo Treatment approaching soon (September 16th), it is time to start planning the future phases of my treatment plan. This is something I admit I have put in the "Do Not Think About" closet, not really wanting to face the difficulty choices surgery, radiation and reconstruction would present. However, it's time to get my marching orders.

Armed with a new conviction Mom and I headed off to Duke to meet with three new doctors: the guy whose going to cut me, the gal that's going to burn me, and the god that's going to put me back together again (hopefully). All were extremely competent and they each put me at ease in their own way. The cutter is soft spoken, gentle, and the most attentive to my reactions. The burner is calm, well-spoken, direct, but sympathetic. The re-builder is the strongest and firmest. Perhaps the one with the most visible ego. I suppose that's because he is the only PS in this area that will rebuild breasts with a woman's own body tissue. Too bad I don't have enough tissue! He is not a cosmetic surgeon either. His speciality and focus is on reconstruction only. While the meeting with the PS went smoothly and easily, we had to wait 3 hours for the other doctors. It was a long day waiting, but when the doctors finally came in, they gave us exceptional service. I never felt rushed or that my questions were not applicable. Right away the surgeon wrote me an order for physical therapy to help un-tighten my left arm which needs to be loosened up prior to surgery, as well as to receive evaluation for lymphedema. This condition, which I now carry a 25% lifetime risk to develop (this will increase to 5% after radiation) is something I have been worried about. With a compromised lymph node system (26 lymph nodes were removed), I run the risk of lymph fluid building in my arm causing it to swell out of proportion. There is no immediate cure for this condition once swelling begins. The only tools in the box are to use compression and massage to move the liquid out of the affected limb. My doctor at Rex did not encourage physical therapy for the arm or counseling for lymphedema...I had to call to request an order..and even then the order did not include therapy for my left arm. I was relieved that Duke validated my concerns and quickly acted to get me into physical therapy.

So what are my marching orders? Surgery has been scheduled for Oct. 15th. I'll stay overnight and will emerge with one less body part, but gain a plastic external drain, which I'll have to carry around for about 3 weeks. Once the drain is removed I'll be able to exercise again. They say I'll be out of work for 3 to 4 weeks. Ha Ha Ha Ha Ha Ha. Not me. I plan to take Friday and Monday off..maybe Tuesday. The mastectomy was recommended due to many factors, including my age, the size and location of my original tumor relative to the size of my breast, the aggressive nature of the cancer cells, and the difficult fact that 3 lymph nodes were positive. I suspected from the very beginning that this would be the surgical outcome, but I wasn't quite prepared to hear it. My doctor at Rex told me he would do what I wanted, my oncologist suggested that the chemo might be able to shrink the tumor enough to save the breast, but my new doctor at Duke was very clear about his recommendation. My choice would be either a disfigured breast or a new breast. The answer was clear to me.

Around the second week of November I'll begin 6 weeks of radiation to the left chest and upper lymph nodes. The whole chorus of doctors at Duke echoed previous doctors' calls for radiation following surgery. This is something I did NOT want to do. I'm told that without the radiation I would have a 15% chance of re-occurrence, most likely in another part of my body. Radiation would reduce that risk by 60%--or 6% total risk. Not close enough to zero to me. In exchange for 6% risk of re-occurrence, my risk for lymphedema increases by 5%, I'll have poor blood circulation in this area, and my skin may become "temporarily" darker and the remaining tissue will hardened as it scars. I'll have to drive 2 hours a day, 5 days a week, for 6 weeks to receive 15 minutes from a "life-saving" beam of burning light. The hardest part to accept is that I cannot have immediate reconstruction and my chances for a successful reconstruction will be decreased. So...to radiate or not to radiate. Unfortunately, the cutter is "VERY" uncomfortable proceeding forward without radiation and the re-builder stands behind what the cutter and the burner recommend.

So...it looks like my marching orders are to lose my little breast on Oct. 15th, burn the hell out of the tissue that remains between November and December, and then celebrate. I think I'll buy a bottle of Dom Perignon to treat myself. I'll wait 6 months before my visits with the re-builder will begin. That's another season.... Until then Mom suggests I wear a jazzed up eye patch where my breast used to be. I think a well-stocked liquor cabinet will help, too.

For now I'm focused on getting through Chemo Treatment #5, which I had yesterday. I've been going into each treatment a little weaker than before. My white blood cell count is 2.5, a normal low being 4 and a normal high being 10. I'll start the neupogene shots earlier to compensate. I'm also anemic, so they are watching that stat more closely. I felt great prior to Thursday, but today I'm up at 3am balancing my checkbook, filing medical bills and writing in my blog. The other meds I take tend to disrupt my sleep. I'm feeling more nauseous this time so I have also taken some additional nausea medication. Next week will be a Wasa Week coupled with a monthend close. So in other words: Miserable. I hope to come out of it by the end of the week so that Vlad and I can enjoy the long Labor Day Weekend.

Now that I have my marching orders we hope to plan some fun weekend trips. We would love to go to New York to see the city sights and to the mountains to chase waterfalls. I miss our adventures... We are also planning two big parties: One to celebrate the end of the chemo crisis and the other to recognize Vlad's upcoming big 40 birthday. Then...starting January 1 we will have a wide open window for 6 months to plan a tropical getaway from all of this crap. Now that's something to look forward to.

Chemo Treatment #4

Just when I thought I was getting used to this...Treatment #4 hit me like a ton of bricks on a Sunday afternoon in Fletcher Park. Sipping on a shandy when I should have been woofing down water, I ended up couch side instead of poolside. By the time we made it back to Vlad's house I was overwhelmed with nausea and oppressive fatigue. Instead of ending our weekend with some bruschetta and sparkling wine, we spent the rest of our evening on the couch watching Episode 1 of the Last Season (#6) of Lost--well, Vlad did anyway. I just kinda of laid there and held on. I don't recall much other than Vlad going crazy because the rest of Season 6 is not online until August 25th.

Unfortunately Monday did not bring any relief. I had a jam packed schedule I felt I could not ignore so I wrapped a scarf around my head and suffered through the day as best I could. I must have looked close to death because people stayed away...only a few brave souls came in with wide open stares to ask if they could get me anything. I kept telling myself to go home, but the thought of moving too much made my stomach swirl as if I was on roller coaster. Somehow I found myself back on the couch shortly after 5pm and I didn't get up again until 8pm. I forced myself to take a short walk just around the block. I remember each step feeling heavy and the pavement pulsing as if I would fall into it.

Now I know what my dog felt like when we had to give it arsenic to kill the heart worms that had invaded his heart. It's a mixed up world when you have to feed a body poison to get better. These drugs I'm taking feel like fire coursing through my veins and the only thing that banks this under your skin burn is water.

It's Tuesday night and I just returned from a longer walk..I made it out of Vlad's neighborhood this time. I actually feel better having walked for an hour and I want to eat something. Vlad bought a sampling of frozen yogurt to try....that sounds pretty good. I think I'll dig in.

Fluid Memories Celebrates Saba

Besides getting back onto my bike and filling my calendar with visits with friends and family instead of visits to see white coats in giant medicine cabinets, I am looking forward to the trip that never was: I’ll call it the Saba Sacrifice. Back in June Vlad and I were supposed to go with our friends Mark and Lynn and David and Gayland to Saba, a small tropical island across from Saint Somewhere. It’s a diver’s paradise and boasts the shortest commercial runway in the world. I remember sitting across from Mark and Lynn on a cold, dreary winter night at Haru, one of our favorite restaurants eating sushi and laughing about our latest West Coast dance lesson fiasco. Wanting to move on to something more enticing, Mark brought up the idea to plan our next diving vacation. Encouraged by our mutual desire for exotic adventure and incredible diving, Mark came up with the suggestion to go to Saba. He did all the planning: from finding the airline tickets and dive operator, to scoring a great deal on an incredible villa in the hilltops of this dormant volcanic island. The plan was to dive each day and buy local food to prepare our meals together. Lynn and I dreamed about all the fresh fruits and vegetables, Mark talked about the fresh seafood, and Vlad went wild about the mojitos. The villa was spacious enough that each couple would have their own bedroom and bathroom. It also had an outdoor pool that included a breathtaking view of the blue-green Caribbean waters. By December we were booked and ready to go. Then BAM! Breast cancer hit me. I told Mark, Lynn and Vlad I didn’t care. I was going to Saba regardless. Then BAM! The reality of breast cancer treatment hit me harder. Sometime in late May I recall making the awful decision not to go. It was a terrible realization of what I would have to give up in order to get better. After getting over the shock of the Saba Sacrifice, Vlad and I decided never to look back. We were happy our friends would carry on and pave the way for an even grander trip back to Saba.

A couple of weeks ago Mark and Lynn had us over for an incredible dinner and to share with us what they encountered at Saba. From their arrival to their departure, it was a magical adventure. The diving was spectacular and the ambiance of the island unforgettable. Saba is definitely worth waiting for. Here is their incredible video that gives a glimpse of what we are looking forward to when we finally get to take the trip that never was (just hit the arrow below):