Come Blog About Death

http://www.npr.org/blogs/health/2013/03/26/175383540/why-more-patients-should-blog-about-illness-and-death?ft=1&f=1001

I kind of want to say “Duh” to this article, but I know that there are a lot of people out there who have terminal illnesses who probably don’t think at all about writing. And that makes sense… because having a terminal illness gives you way more important stuff to think about.

But, for me, writing is and always has been therapeutic, so it’s awesome to see it validated by NPR, even if it’s just anecdotal for now (get on it, researchers).

Speaking of writing, my weekly happy for this week was going through old school papers in my bedroom at my parents’ house. They recently painted so all of my things were in boxes and I had to decide what to keep and what to throw away. I wrote many stories in high school and college, but I haven’t written regularly in a while. Reading old stories made me surprised at how eloquent I was and inspired to write more.

Last week, I sat in a cafe and churned out a couple paragraphs of creative writing. It felt awesome and I realized how much I missed it. Unfortunately, I also realized how bad I was at plot. I can do expository ’til the cows come home but putting together a coherent story with a beginning, middle, and end is really hard for me. Something to work on in my spare time, which I have a lot of now that I’m unemployed.

I leave you with the first paragraph of the story I wrote last week, inspired by a guy I saw out the window of a bus:

Karl bashed a cigarette butt against the stone sidewalk of 16^th Street with the heel of his worn sneaker. Crowds of tourists wandered past, lost on their quest for the White House. Though Karl knew the damned thing was just two blocks away, he didn’t dare speak to these cheerful families lest they try to start up a conversation about the beauty of the capital in springtime.

Dad’s Day

This weekend was Father’s Day, so I wanted to share a picture of me and my dad circa the early 90′s. This guy is amazing. He raised three kids, ages 3, 12, and 15 when my mom died of breast cancer, and no one could have done it better or with more love. I am thankful for him every day (and also thankful for the help he’s had along the way from neighbors, friends, and the indefatigable Nancy).

Awwwwwwwwwwwww!

I promised  to be more aware of my “Our Town Moments”, so here’s one from the weekend. On Saturday night, I was at my parents’ house in Pennsylvania. We’ve all been going through a lot lately, not just stemming from my cancer last year but other big changes in people’s lives that affect all of us because we love and support one another. Still, Saturday night we had fun and normalcy, just me, my dad, Nancy, my brother, and my boyfriend. While the sun was still out we played ladder golf in the backyard and had a lovely dinner outside on the porch. When it was dark we spent a couple hours in the hot tub, tracing the course of satellites above our heads (something my dad taught us to do years ago). I was thankful for family, laughter, nature, fireflies, and the universe, for being beautiful and full of twinkling surprises.

To have kids or not to have kids

After reading this article, My Sister, My Surrogate, I’m kind of pissed I don’t have a sister (thanks, mom and dad). The article is about a woman, who, like me, got breast cancer at 26 and, like me, froze embryos at the time. But because her cancer was estrogen-positive, her doctors advised her not to get pregnant. That’s when her awesome sister stepped up and said, “Put your babies in my belly!” What a good sister.

While I’m not ready for them just yet, the subject of babies has been causing me some consternation. Having BRCA sucks, so on one hand I am extremely against passing on my own seed lest my daughter or other future female descendant be blessed with the lucky fate I have been blessed with. But when I think about adoption and donated eggs and other alternate ways of having children, I get sad that I might have children who don’t possess the genes that make the Scharf/Tator family so wonderful. Our quirky senses of humor (yeah, Zooey Deschanel, we were quirky before it was cool), our smarts, our big ears, our singing voices, etc.

Which one will die of breast cancer before age 40?

At this point, I’m leaning very heavily toward the first hand – not passing on my genes. I see procreating as letting the gene win, whereas if I adopt or use a donated egg, this BRCA gene stops with me. No more. Zip. Zilch. Nada.

But I’m still debating. I’d be interested to hear from other readers with BRCA who are pre-childbearing – is passing the gene on something that bothers you?

Drama Averted

MRI was all clear. Of course, after getting the good results, I felt a bit crazy for getting the test in the first place. But as my family said, I had a reason to be worried and at least now we’re certain that the worst-case scenario flying through my head was not true.

And thank goodness for that.

I am definitely going to search for a therapist. There’s just so much in my head right now that I need to get out, and I think a lot of my symptoms were probably caused by stress and anxiety and then getting stressed and anxious about my stress and anxiety. I need to learn to relax – step away from stressful situations – and most importantly, I need to learn the best way to live this post-cancer life.

Word to my parents

Throughout chemo I’ve had a routine. Infusions were every other Thursday. My parents would come down to DC from Philly the night before each infusion, accompany me to my infusion and spend the day with me, then have dinner with my boyfriend and me in DC before piling us all in the car and heading back to my parents’ house. I’d stay there over the weekend until Monday or Tuesday – whenever I  felt well enough to head back to DC and return to my life.

Today, the night before I return to DC after my last infusion, I find myself looking back on the experience fondly… not the chemo, of course, but the time I spent with my parents in my childhood home. This summer sucked in a lot of ways, but I enjoyed the opportunity to be closer to my parents physically and emotionally.

I can’t say this without sounding cliche and cheesy, but it needs to be said because I believe it’s true: I have the best parents in the whole, wide world.

All summer they’ve been nothing short of amazing. They’ve loved me unconditionally, never made me raise a finger, cooked for me, cleaned up after me, entertained me, cared for me like only a nurse and a doctor can, taken me shopping, calmed my nerves, listened to and allayed my fears, let me cry, and, even when things seemed especially difficult, approached everything with a positive and supportive attitude. While I’m sure I would have been able to do this on my own, it wouldn’t have been nearly as easy (or fun – don’t forget the endless games of Hit or Miss… and metallurgy club).

So, while a blog entry is totally inefficient at expressing my true gratitude, I’m doing it anyway: thank you mom and dad for the innumerable ways you have made my life easier and better this year and always.

New-ropathy

I guess I thought I’d be the woman who doesn’t get all the common chemo side effects. Everyone told me I would “do so well” with chemo – I’m young, in good shape, have a positive attitude, and so on and so forth. Well I’ve learned that being young, in good shape, and so on and so forth does not preclude you from feeling common chemo side effects, no matter what anybody tells you.

My current battle is with peripheral neuropathy, which has manifested in me as a strange, pins-and-needles-like sensation in my fingertips and, less prominently, the soles of my feet. It’s not painful, just annoying because I feel it everytime I type, hold a pen, or do anything else that normal people do several times a day with their fingers. Everything I read says it’s reversible, but I also worry sometimes that it won’t ever go away. It’s been pretty constant since my second Taxol.

And while we’re counting treatments, I want to proclaim that I have JUST ONE LEFT! September 1st marks my last infusion and I am so, so, so ready to be there. I’ve heard from a lot of women that reaching the end of treatment is sometimes hard, and I can understand why that would be – you’ve spent several months being monitored closely by a medical team, you’ve endured countless side effects and emotions, you’ve received well-wishes and extra love and care from family and friends and then… bam! You’re not really a cancer patient anymore. You’re a survivor… supposedly… until you get a recurrence… but that’s a whole other story.

While I see the sadness that can come along with ending treatment, I also think I’ll be ecstatic. First and foremost, my hair will start growing back! I’ll have normal work hours, be around most weekends to hang out with friends, avoid being pricked and prodded every week, and I’ll be able to schedule my final reconstruction surgeries and emerge in 2012 with new boobies and a new outlook on life. So close…

Marriage and The Last AC

I am happy to report that I had a wonderful time at my brother’s wedding. Though I had a ton of anxiety leading up to the event, after stepping off the plane in San Diego all I felt was pure excitement at the thought of sharing the event with my family and especially my brother and his wonderful fiance.

The rabbi officiating the wedding was a great speaker. She kept giving people time to be “present” – to really experience each second that passed and be in the moment, not thinking about the past or future, but about what was happening right then and there. It felt very poignant for my situation. One of the things I was so anxious about was that I wouldn’t be able to be present in the moment of my brother’s wedding – that I’d feel sick or be harping on my past or future treatments. But I truly was able to be there and feel the moment and dance at the reception and enjoy my family’s company, and it was a great weekend! I invite

My parents and I at my brother's wedding reception. I was rockin' my real hair wig!

everyone reading my blog to take a second and really feel present in the moment that is taking place. The past is over; the future can wait; now is the most important thing and you don’t want it to flutter by without taking notice.

Of course, now I’m sitting at home the night before my last AC infusion and I’m feeling anxious all over again. The thought of the syringe filled with bright red Adriamycin being pushed into my veins just makes me want to vomit. How can it be that I’m hardly halfway through my treatment and I’m already sick of it? Tomorrow, as the drugs course through my body, I promise to try very hard to visualize them as good, cancer-killing forces rather than toxic, disgusting, side-effect causing forces.

Today I am feeling…

When I was a teen, there were teen “diary” sites like Xanga where you could have a little emoticon that showed your feeling each time you wrote. Well, if I had that ability on WordPress, today I’d have :\ that and it would say “overwhelmed”.

Yesterday, I had what they call a port placed in my chest to make it easier and safer for me to receive my chemo infusions. Basically a small pad goes under my skin and it hooks into one of my major veins, meaning the nurses can easily just stick a needle in this pad and administer the drugs straight to this vein, rather than having to prick my hand or arm every time and risking damage to the small veins there from the toxic chemo drugs.

The placement procedure was fine – I was prepped like I was for all other surgeries (get nekkid, take off all jewelry, get an IV placed, wait around for a while in the pre-surgery room, etc.) but for this one I was fully cognizant as they took me back to the room, and prepped me. They need to use an ultrasound to place the port, so I was lying on my back and they draped my body so that just a square of my chest was exposed, and there was a big X-ray machine hanging above me and a lot of techs scrambling around. I knew I wasn’t getting general anesthesia, but I was getting happy meds so I kept waiting for them to start pumping that wonderful stuff into me. Finally, before the surgeon came into the room, they did, and I felt the normal lightheaded, heart-slowing-down feeling that I enjoyed for all my other surgeries. I honestly don’t remember much after that – I think I napped. I felt nothing, and then there was a nurse peeking into my sterile “tent” telling me I was done. An hour later I got to go home, and the rest of the day I slept.

That night, the port hurt a bit – nothing unbearable but a sore in my lower neck like I had whiplash and a slight searing pain where I imagine they cut me open to put the port in (I can’t see because it’s all covered in gauze).

My skin was also a bit red, and I started freaking out that I had an infection. That’s what started today’s overwhelmed feeling. The next thing that exacerbated it was that I spoke on the phone to a young woman who had her chemo at GWU. I got her name from the local YSC affiliate, while I was doing research, because I wanted to just see what other people’s experiences were like. Well it was all going fine and good and we were talking about wigs, what to do during infusions, etc., but I started asking her more about her experience and found out that she had been diagnosed at 28 and they originally told her she was Stage 2 – larger tumor but no positive nodes. Great! Not so great. After her surgery she got a PET scan and it revealed she was really stage 4, with mets to her lungs.

Womp, womp, indeed. Just when you think you are out of the woods with a great prognosis, you hear a story like this and all the fears of terrible metastatic disease and dying come flooding back. I know it is rare for this situation to occur, and it’s possible there were more differences in our experiences than I talked to her about, but still. No positive nodes and Stage 4. That’s truly being dealt the short straw.

Then today I went to a clinic at the hospital at the urging of my surgeon. It consisted of short visits with a physical therapist, massage therapist, Reiki specialist, and a naturopathic physician. While these women were very kind and I appreciated their input (I especially liked the Reiki, though I went in thinking it wouldn’t do much), it also put so many things in my head that I have to remember before starting chemo… which is… oh, right, tomorrow.

Prevent lymphedema. Massage scar tissue daily. Use Vitamin E. Remember to breathe. Rub your arm this way to encourage fluid to flow through lymph nodes. Eat this vitamin. Don’t take that vitamin. Eat lots of green vegetables. Eat protein. Limit carbs. Make this smoothie if you don’t feel like eating. Freeze meals at the beginning of the week.

And of course on top of all that I get home and had my own laundry list from the oncologist of drugs I have to take and when and items I should buy to be prepared for side effects (Colace, soft toothbrush, biotene, etc.).

MY WORD. So you can see how I’d be overwhelmed. I’m a little scared that I can’t do this all. Sure, my parents will be here for most infusions, but they can’t live here for the next 3 months and there will be times when I’m on my own and the boyfriend is at work. How the heck do I remember all of this and not make some fatal mistake?

I am Michael Jackson

So I spent the afternoon in a hyperbaric chamber at Capital Health System in NJ. If you had asked me two months ago, “Cara, do you think that, in two months, you’ll be diagnosed with breast cancer, have a double mastectomy, and spend two hours in a hyperbaric chamber breathing pure oxygen?” I’d have said, “Hell no.”

I guess stranger things have happened.

I took a "dive" in one of these hyperbaric chambers this afternoon.

Basically, my plastic surgeon is not happy with how the skin on my left breast is healing. I have a very large area under my nipple down to my incision (which is at the bottom fold of my breast) that has turned a waxy white, kind of like a third degree burn. She described it as full-thickness skin loss, and in layman’s terms I think that means that the surgeon just removed so much breast tissue that my remaining skin is too thin to reconnect to a blood supply, so it is dying off.

I saw the plastic surgeon on Monday and she said she was still not happy and would like to schedule a revision surgery. I cried like a baby. I just felt like things were coming crashing down around me again. My surgery went so well otherwise and I was so disappointed that my skin didn’t get the memo that I was supposed to heal with no complications! I was also terribly frustrated to have this setback when I had already moved on to my next step in this whole breast cancer journey,  embryo retrieval. Everyone says to take things one step at a time, and I thought the surgery step was over, so to have this setback made me really upset.

When I was done crying, though, I put things into perspective and realized it isn’t so terrible. I am cancer free. All negative nodes. My right breast looks great. I can handle some skin removal and perhaps having a lopsided chest for a while because my surgeon will have to take down my left side expander to let the skin heal. I can also probably do the retrieval at the same time. Deep breaths.

Back to the hyperbaric chamber – my wonderful father who will do absolutely anything for me suggested it and fast-tracked me to the wound care department at the hospital he works at so I could see the vascular surgeon about whether hyperbaric therapy would help my skin heal. The surgeon said he thought it would be beneficial, so now I’m making like Jacko and taking a daily ride on the hyperbaric highway.

Anyone else know people who have had this therapy after surgery? I read about it on one message board but I’d love to hear from others. Or just others who had to lose skin after mastectomy. It’s apparently pretty common and it is pretty traumatizing especially on top of everything else a breast cancer patient goes through.

Surgery Update

My bilateral mastectomy was on Tuesday afternoon – but before I say anything about that, I just want to thank all of the wonderful people who reached out to me and expressed support on my blog. Though I don’t know you personally, it is amazing to know so many people care about me, understand my situation and my decisions, and are sending thoughts, prayers, and positivity my way.

And now – I am recovering from surgery. One reason I ultimately chose to have my surgery in DC with the surgeons Dr. Teal and Dr. Lenert from GWU is because they could fit me in so quickly. I was diagnosed on March 21st, and today, on April 8th, I am already three days out from surgery. Wow.

I am feeling good, too, and so so happy with my surgeons and team and all of the nurses and techs who took such wonderful care of me at the hospital. I was definitely anxious leading up to the surgery, but things were happening so fast and I decided to continue to work, so my mind was distracted. On Tuesday morning, I was definitely filled with trepidation. In the morning I had an injection of radioactive material into my right breast to locate my lymph nodes, and it hurt pretty bad. There were three very small needles that the doctor inserted under my skin around my nipple, and what stung was the actual stuff that they injected. Not pleasant, but it was pretty cool when the tech showed me the picture of how my lymph nodes lit up.

From there I was taken up to the pre-op ward, where I had to undress, answer a lot of questions, and meet with my surgeons and the anesthesiologist. The anesthesiologist asked if I wanted some “happy meds” to take my anxiety away, and boy did I! Once that started in my IV, I felt a bit lightheaded and then… blackout. I remember nothing until I woke up on my back and a guy next to me (a nurse? Surgeon? Who knows!) said, “You’re done!”

I hung out in post-op for a while with a wonderful nurse named Amelia, and my family came to visit. My brother, stepmom, dad, and boyfriend were there and it was great to be with all of them – and be on pain meds which allowed me to be happy about the whole situation.

The first thing I wanted to know out of surgery was the diagnosis on my lymph nodes. Luckily, the breast surgeon said the preliminary reports indicated they were clear of cancer. I was THRILLED to hear that, though we’re still waiting on a final pathology report. Also, I though “sentinel lymph node” meant only one, but apparently I had 8 sentinel lymph nodes and they took out all of them. Interesting.

I spent two nights in the hospital with very little sleep – a) I cannot sleep on my back and b) people are constantly coming in and out to check on me, administer antibiotics and anti-clotting medication, and give me pain meds.

And now I am in a hotel room with my parents continuing my recovery. I do feel a lot of tightness and soreness in my chest and I’m a little afraid to look at my boobs because they are so different and bruised, but other than that I feel very positive and good.

I hope that I will be able to blog throughout this situation, not just because it’s therapeutic for me, but because I want women to be able to hear what this is like.