Thursday, January 22, 2015

Hope in a Dark Place

Hope is hard to find in a cancer ward, especially when the news is Stage IV metastatic breast cancer to the liver. But hope is exactly what oncology nurse Meg Jewett, of the Katzen Cancer Research Center at George Washington University Hospital, has given me. I was diagnosed Stage IV breast cancer from the get go in February 2012. At first my oncologist believed I was Stage II. My breast MRI showed no lymph node enlargement, and I was young (47), so there was no reason to believe the cancer had spread. But a pre-treatment bone scan and CT showed otherwise. My liver was covered with lesions.

As soon as I received the news, I began to split up my belongings in my head and plan my funeral. It was Meg who sat down next to me, as I was receiving one of my first of 20 weekly Taxol infusions, and told me, “I know someone who is still alive 30 years later after a diagnosis of advanced cancer.”  And it has been Meg who has repeated that to me over and over again, as I’ve struggled to find hope in a dark and difficult situation.

Every week during my infusion, Meg met me with humor, and a practical yet positive approach to cancer treatment. Meg was the one who instructed me on the vitamins to take to help alleviate my building neuropathy. And it was Meg who reassured me that the side effects I was experiencing were normal and that I’d get through them.  The lesions on my liver dropped to just scar tissue after 5 months of treatment, and I was stable on Herceptin for almost 2 years.  When I finished the rounds of Taxol, I wanted to thank Meg by taking her out for a wonderful meal, but I had to settle for bringing food to her at the cancer center because she was too busy treating other patients.

In December 2013 the cancer came back, again to my liver.  And again, I dropped into hopelessness. Thankfully Meg had previously talked about her experience during the clinical trials for T-DM1 (now Kadcyla), telling me how well the women on this drug did and how easily they tolerated it.  With this progression I was terrified to go through yet another round of knock-me-down chemo.  Five months of weekly Taxol had almost disabled me, and the resulting isolation sent me into a deep depression.  As I was coming out of the examining room, after receiving the news of my progression, I saw Meg in the hallway. Wordlessly I walked over to her, hugged her, and began to cry.  Meg has become a steadying point, a buoy to grab on to in these very choppy cancerous seas.  That hug gave me a glimmer that maybe things will be ok.  I started Kadcyla December 2013.

Hope. It’s such a simple word, but yet so hard for many to give.  I not only trust Meg’s skills and knowledge as an oncology nurse, I trust her ability to always, always give me hope, even when things get really bad.  As Dr. Bernie Siegel puts it, medical staff can “deceive people into health” by simply treating them like they’re going to live. And Meg has consistently treated me like I’m going to live.  And the best part is that Meg believes it herself.  I can feel it, that she believes I’m going to live.  I don’t care if either of us is deceiving ourselves.  It matters. Words and actions matter. Believing that I’m going to live keeps me going from day to day. And every three weeks I know I’ll see Meg for my next dose of hope and Kadcyla.  Meg has become a key member of my medical team, as important to me as my oncologist. And I am sure that Meg’s continuing belief in my health has helped to keep me alive as surely as the chemotherapy has. 

Reference: Siegl, Bernie MD, “Deceiving People into Health”, http://berniesiegelmd.com/resources/articles/deceiving-people-into-health/

The above was submitted to the 2014 CURE’s Extraordinary Healer Award for Oncology Nursing

Monday, January 12, 2015

Dating, Love, Sex ... and Cancer

Just before I was diagnosed, I went on the worst date ever. The gentleman had a position of power in Washington, D.C., and over coffee, he proceeded to tell me that fact in great detail.

For an hour.

It was as if he was on a job interview. The stories were self-congratulatory. I had to stop myself from replying, at key points, "You're hired."  The date was excruciating. It was shortly after this night that I was diagnosed with cancer, a situation not conducive to dating.

But still, I had a new goal. One decent date. Just one. The dating didn't have to go anywhere. One date was a simple goal.  Highly achievable.   I spent over a year in nasty treatment and couldn’t even think of dating. I finally met Mr. Decent Date two years after diagnosis. I spent a pleasant evening, and felt success. Although we parted ways, I had achieved my goal.

So why didn't I stop there? I only wanted one date. I could sit back and relax, and not bother with annoying boys. But you know how humans are.  Get a little of something, and you want more.

I had a new goal. Have sex. I told a friend I wanted to have sex at least one more time before I left this mortal coil. I was on to another achievable goal, you would think.  But not necessarily so.  I am not wired for sports sex. If I could emotionally tolerate one-night stands, life would be much simpler. Go to a bar, meet a guy, take him home, have my way with him.  Sigh. If only it were so. But, no. I want a man I care about and who cares about me. Sounds like a relationship, right? It is. There goes that easily-achievable goal.  I wanted to meet a nice man. Nothing fancy. Nothing dreamlike. Just a pleasant guy with whom I could have sex.

Dating in the Washington, DC area is not easy. There are lots of young people here and men my age want to date younger women. Even when they aren't dating younger women, these men seem to hold older women to the same body standards. I am no longer 25. I am 50. Finding a man who appreciates me in DC can be a challenge.

Then add the fact that I have stage 4 breast cancer, and the situation becomes even more complicated. How was I going to find a nice guy who liked me just as I was and would be okay with dating someone with a serious health issue? I was willing to lower my standards. No need for perfection. Just someone decent was fine with me.

But then I met Jeff.

I had rejoined Match.com. As happened in the past, I didn't get many responses. I am older than I think this audience wants and certainly larger (size 18). After a while, I called it a day and planned to cancel the membership. Then I got an email from what seemed to be a very nice gentleman, I wasn't expecting anything, so I figured what did I have to lose? I answered the email.  We began emailing back and forth, and after several emails, we agreed to meet.

We met at a coffee shop.  When Jeff first saw me I didn’t think he was attracted to me. He showed no reaction of pleasure. But he was good company, and we talked for almost 4 hours. Jeff was incredibly funny and my gut told me this was a nice guy.  Still, I didn't think Jeff was attracted, so I figured that was our final date. I was surprised when he asked me out again. Since the coffee shop, Jeff has made it clear that not only is he very attracted, but he loves spending time with me. We've been out several times.  I really like him.  I apparently am dating someone far above my original, I'll-settle-for-anyone-basically-nice expectations.

Multiple hurdles cleared. A witty guy is attracted to me.  That alone is a miracle.  But there is the hurdle of cancer.  How do I tell a very sweet man he is dating someone who has cancer that has spread and is only kept in check with chemo and constant care?  What are the words? Would he run?

I turned to my support community for advice. The best advice came from Rochelle Shoretz from Sharsheret, an organization supporting Jewish women with breast and ovarian cancer. Rochelle also has stage 4 breast cancer and married a man she met after diagnosis. Her advice was to talk about the cancer once conversations turned more personal and let him ask questions. The key would be to feed information to him bit by bit, rather than as one overwhelming chunk.

I started saying I was diagnosed with breast cancer in 2012, and I waited for questions. As predicted, Jeff asked if I was OK now. I told him I was stable, but need continuing treatment. What kind of treatment? Targeted chemotherapy. Jeff thanked me, and I replied I planned to tell him, but was hesitant because I wasn't sure he'd want to see me anymore.  His answer? "Can I see you again?"

I was shocked. He was so accepting, and still wanted to see me.  So we've continued to date, just like normal couples do.  I get to date a nice, funny man who digs me and whom I dig in return. And if this continues, I will have sex again. I went into dating after cancer with one goal, a decent date, and I got far more than I ever dreamed. The key at this point is to enjoy one date at a time.  Relish it. Soak it in. Bask.  Don’t focus on and what might happen. As heard once, "the trick is to find a man who adores you and then let him."  I set out to find a date and found adoration. Now I just hope I have the smarts to let him.

Cancer and Sexual Health Resources 

For those looking for practical advice on cancer and sexuality, here are some great references from Dr. Don Dizon, medical gynecologic oncologist at the Massachusetts General Hospital (MGH) Cancer Center, and Founder and Director of the Oncology Sexual Health Clinic.

Also published on CureToday