Cancer: A Family Affair

Hearing that you have cancer can be quite shocking to your sensibilities. You can imagine then, that within 2 years of a cancer diagnosis, hearing that another family member has cancer is very upsetting. And, really, hearing that a third family member has a rare blood disorder that could possibly be (or turn into) cancer is just infuriating! But friends, THAT is what I am writing to tell you about today.

About a month ago, my step-dad went for his routine check-up with the internist. There were some abnormalities in his blood work, that apparently had been increasing over time, so his internist referred him to an oncologist/hematologist. Turns out, he has Chronic Lymphocytic Leukemia, otherwise known as CLL. Luckily, the particular chromosomal defect he has means he has the most common type of CLL, and THANKFULLY, the one least likely to have the nasty symptoms or convert to a worse type of leukemia. Thank God for the little reliefs! Still, cancer is there. His body will continue to "make cancer" and he must live everyday wondering and waiting. I'm glad to report that, for now, he doesn't have to endure any crappy treatments and the prognosis is very good. 

Then, while this diagnosis was still ongoing, my mom went to the same internist for her exam (she missed hers last year because she was so busy caring for me during my treatment). Hmmm.... your platelets are REALLY high. Maybe a lab error, or maybe.....   Yep! You guessed it! Maybe it's cancer. She had to wait-and-see, which I'm sure was maddening for her. It was for me. Her blood work was recently redone, and her platelets are even higher. For now, she is diagnosed with a rare (about 1 in 1 million) blood disorder called Essential Thrombocythemia. This is an ongoing diagnosis, and one of exclusion, which means that they have to do lots more testing to make sure that the ET isn't secondary to something else. We are all anxious to find out more about her specific situation, but right now, we just know that more testing has to be done before we have answers.

And, while all this was going on, another loved one (also in the family) was facing a possible breast cancer diagnosis. Thankfully, that ended up ALL CLEAR, which is exactly what needed to happen. I think our family chant should be "No More Cancer!" Really! Isn't this enough already?! You can imagine that this is a stressful and scary time in our lives. Your prayers, warm wishes, positive vibes and good thoughts are all very much appreciated. Please wrap my silly, wonderful family in your love!

Not-so-Lazy Days of Summer

What a fun, busy summer it's been! I tried really hard to make the most of every summer day, and I have to say I'm feeling very fulfilled.

I continue to have pain in my legs. Medications that seemed to help last Fall are no longer helping. I've stopped taking the Nortriptiline and Flexiril combo every night. I've been working with a rheumatologist for nearly a year, and though we tested and tried a full arsenal of options to figure out the cause of the pain and tried to manage it, the pain remains and we came up short of answers. In a very professional and polite way, he threw his hands up in the air and advised me to seek answers elsewhere. OKAAAAAYYYYYY...

Just about the same time, I had a 6-month follow-up with my oncologist's office. I went in with a host of ills to talk about. Piercing headaches, a cough that won't go away, continued pain in my legs and several friends (who happen to be as far out from diagnosis as I am) who've been back in the muck with recurrences and metastases have wreaked havoc on my psyche these past few weeks. I was advised to have my eyes checked (likely cause of the headaches is a need for glasses). The cough could be allergies or a side effect of the Tamoxifen. A chest XRay from my yearly physical weeks ago was beautifully clear, so we know the cough isn't a symptom of a lung met. My blood work all looks good, except that pesky vitamin D is still at the bottom of the normal range (32, when they want it in the 60s) and that's already with a supplement everyday. Next, we chatted about the pain. I've been whining to loved ones about the pain in my legs and feet, sure that the pain is coming from my veins, not my bones or joints. I've mentioned it to doctors but they poo-pooed the idea. Since the rheumatologist came up empty, I once again brought up the idea that the pain is vein related. "Well, wouldn't hurt to make an appointment and see." K - thanks!

That night, I called the local varicose vein specialist. I literally called minutes before they were closing, and I was in luck! "We have a cancellation for tomorrow. Can you come in then?" YES!! When I arrived for my appointment, they explained varicose veins to me, much like they were selling a service, but when we got down to talking about what was going on with the pain and cramping in my legs, cancer and chemo history, the mood in the room changed. I was fit for compression hose

(darn sexy, I must say!) and then we did a preliminary ultrasound, just to see if anything was going on with my veins. Less than 5 minutes later, the doctor, his PA, his nurse, and the ultrasound tech were all in the room. There is definite reflux of the blood in both legs. Many of the veins look HUGE and the valves that are supposed to work to push the blood back up to my heart aren't working. I'm going back this week for a more detailed vein-mapping ultrasound so we can get a picture of the extent of the damage. The doctor said that surgery is in my future (oh, joy!) and it will hurt, but compared to what I've dealt with already, this is cake. I'm not sure what kind of surgery or how many. We'll know more after the vein mapping is complete. He also said he can't guarantee 100% pain relief, but we would definitely put a dent in the hurt. Much less pain and no more cramping... yeah - I'm in!

As for reconstruction, I'm at a standstill. I don't feel comfortable going back to my former plastic surgeon. I know so many local survivors LOVE him, worship him, but I didn't get the best of him. Maybe it was bad luck, or bad timing (I'm certain he's not a bad surgeon), and maybe he has no idea the extent to which I got shafted while in his care. Either way, I don't see another visit with him in my future. I did see him at the Pink Fashion Walk, and soon after he sent me a friend request on Facebook. I feel like I'm ready to bury that hatchet and move forward. So, we're Facebook friends. LOL. Now, I'm researching and wait-and-seeing. I'd like to see a female plastic surgeon for a consult about tweaking or redoing my reconstruction, but I've had no luck with all the contacts I've made so far. If you are reading this and have ideas, please share them! Please.

The Pretty in Pink Foundation Pink Fashion Walk Gala was AMAZING again this year. I was so thrilled to share the stage with my daughter. They did a spotlight video about us and she got to be a superstar for a day. It was magical. There were so many familiar faces in attendance, and the backstage vibe was so full of love. I'm still on a post-gala high! I'm sad to hear that Camille's won't be doing it next year. The Camille's team is so amazing. Every woman I spoke to back stage has a story to tell about this event helping them to see themselves as beautiful, sometimes for the first time since surgery, chemo, and radiation wrecked their self-image. We all owe Camille's and PIPF a million thanks for everything this event is and does.

(If you haven't "liked" my Brave Like a Tree Facebook page, here's the link: https://www.facebook.com/BraveLikeATree?ref=aymt_homepage_panel and the video is pinned to the page if you want to see it. The file is too big to upload here, but the video is short and it's a tear-jerker, I think so anyway.)

The Great Smokey Mountain Railroad

My family traveled to the Great Smokey Mountains this summer, and to NY for my high school reunion. I got to reconnect with old friends, and fill my cup full with family love. Many days were spent swimming, playing, exploring, and enjoying everything the summer had to offer.

I've also been blessed with a collaboration between my BCC writing class and the PIPF. My students will be writing profiles of local breast cancer survivors and I'll publish those here on the blog for my Pinktober Profiles series this October. This gives my students a service-learning experience, and a REAL audience to write for I'm so excited. Our first group of survivors is coming later today to tell their stories. How cool is that!?! Life is so good!