Monday, September 24, 2018

I Found My Surgical Pacer

I met with the new oncologist this morning, and to say it went well would be a huge understatement.

N went with me this time, which was really great. I wish he went last time so he could compare the two experiences, but considering how ready I feel to take on this challenge with the support of this doctor I know seeking another option was the right thing to do.

We talked for a long time about what I've been through so far, and she helped me understand why she is recommending a simple hysterectomy. She drew pictures and answered every question we could think of. She even remembered a pen!

She noticed my socks and recognized them as a preference for running. She shared that she is a runner too and we chatted about running and upcoming races. Mine is this weekend, and she is training for the New York Marathon later this year. There is just something about talking about running with another runner. It creates an immediate connection and a shared language that is difficult to explain to people who are not runners.

As we discussed the details of the procedure and what I need to do to lead up to it, she said I have likely spent more time and energy preparing my body for the race on Saturday than I will need to do for the surgery. As we continued to talk and she referenced race training and prep with the surgery, she either said or I picked up on the fact that the the preparation for and execution of my race this weekend will likely be more difficult than this surgery.

So there it is. All I really needed to hear. Not only can I do this, but I have already done something more difficult than this and have done it well. I will be back on my feet and ready to put this all behind me in a period of time comparable to recovering from an ultra marathon.

And I've already done that once!

She did an incredible job of helping me feel confident and strong and not only able to handle this surgery, but that I would likely be back to running fairly quickly because I am in such good shape. Not once did I feel like she thought I needed to be taken care of. She pointed out my strengths and reassured me that they would carry me through this with ease.

I wrote a couple of days ago that although I feel surrounded by people supporting me and cheering for me, I am doing this alone. Well, my visit with this doctor totally challenged that thought. She and her team will be there with me the whole time. It's like she's my surgical pacer who will do everything she can to ensure a solid finish. I am so grateful that I held out hope and found someone who makes me feel this confident in the decision to move forward with the surgery.

We are working on the scheduling and it could be anywhere from 2-4 weeks away depending on what the nurse finds out. I should know by tomorrow.

They will do pathology on the uterus once it is removed to see if there is any further treatment needed. I am holding out hope that everything will be removed with the surgery and I will be able to put this whole experience behind me soon.

This has been a whirlwind of emotion and coping since July. I have spent a lot of time feeling fearful of this surgery and unsure of it all. For the first time, I am thinking of how much better it will be afterwards. I am able to see myself sailing through and actually feeling better once it is all over. It's a beautiful and much needed fresh perspective.

Sunday, September 23, 2018

10 Years A Mom

10 years ago today, this boy made me a mom.

I’m sure it hasn’t been easy for him. He gets the less experienced me. The me who encourages cautiousness in him because of my own fears. The me who desperately hopes I’m teaching him to be kind, strong, self-reliant and that he is capable of great things.

Oh my sweet first born, the simple fact that you exist in this world makes me proud. The fact that you bring so many positive things to the world is just an added bonus.

Happy 10 years to you, my love. And happy 10 years a mom to me.

Saturday, September 22, 2018

Cancer and Ultra Running: Going at it Alone

I was afraid that the 2 weeks leading up to my doctor appointment would drag on and the day would never come. Even with two babies who went far past 40 weeks, I am still not very good at waiting.

The first week did drag on, but this past week I was assigned a really fun and engaging work project that reignited a love for what I do. All of my focus went to that project and I didn't spend much time ruminating on the appointment and the tasks that will happen over the next few months.

Today though, I've spent some time reflecting on all that has happened so far.

My first surgery was on a Thursday and just one day before I was to volunteer at a 100-mile race being held a couple of hours away. I figured it was perfect because I wasn't going to be able to run that weekend anyway. What I failed to consider is the care that is required for a GYN procedure combined with the campsite bathrooms and a 32-hour race. I still don't really call it a surgery, but that's exactly what it was. I downplayed it to myself and to the very few people who knew about it.

Volunteering that weekend was both good for me emotionally and posed some challenges. On one hand I was pretty distracted as I gleefully supported runners to complete the race. On the other hand I went straight into that situation without really processing what happened. I kept it pretty quiet. Only my parents and two people at work even knew I was going through this.

The surgery didn't last very long. I went into the outpatient center, a place I had been before because of a work connection, so it felt familiar. I had to wear two of those hospital gowns, get an IV and answer the same questions about 15 times.

What is your name?
Why are you here today?
What procedure are we doing?

I walked into the operating room and it looked just like they do on TV. I put my legs in stirrups and they brought me a warm blanket because I was freezing. It was this small team of 4 women and I said "Is this what you all do all day? It's like a tribe of lady doctors all in this together."

I don't remember much after that. I felt relaxed and tired. I woke up and transferred to the rolling bed and they wheeled me into the recovery room. The nurse said she was going to leave to go get N.

After she walked out of the room, I sat there alone. I had so many emotions surrounding what just happened. As I processed it all in those few minutes, I also realized how very alone I was. I have felt nothing but support and love from my tribe. People from every corner of my life have filled me up with words of strength and offers to help. N walks beside me through this all and stands strong when I can't. Yet when I sat in that room completely by myself only interrupted by the sound of the humming florescent lights, the truth set in.

I am doing this alone.

It was only me in that bed having that surgery. It's me and me alone who answers the phone when they call with the next set of news. As supported as I feel, ultimately this is a path I must travel myself.

It was in this moment when she left the room that I realized all of this. I didn't feel weak, or that I couldn't do it. Just the reality of what I had to go through set in. I also felt a huge relief and cried at the realization that it was over. Of course we all know the outcome of that biopsy, and it's not quite over after all.

Those few minutes in the room alone were a beautiful time for me. As I reflect on it now I'm reminded of time during my first ultramarathon when I was alone on the trail. No one but me and my thoughts and the ground beneath my feet. Thoughts of "Can I really do this? Am I strong enough? I can't do this. I need to stop. No, I don't need to stop. I can finish and I can finish strong".

The trail was full of other racers and lots of friends and family supporting and cheering for me, yet only I actually ran the race. Me and me alone.

I have my second ultramarathon in 7 days. It is a tough course that I have ran pieces of numerous times. It has been a dream of mine for a few years now to finish this longer distance of the course, and I am so excited to toe the line and see how my body will perform. I have some nerves as I would before any race, but I am not worried at all. I feel strong and confident and ready to take on the challenge.

I have a sense that being diagnosed with cancer is somewhat similar to facing the challenge of an ultramarathon. Next Saturday I will feel nervous and uneasy at the start line, but I'll start anyway. I'll have moments where I'll feel strong and am gliding peacefully across the single track, and there will be moments when I'll wonder if I can do it and question my own strength and stamina. My friends and like-minded strangers who have been through this before will be at the aid stations ready to help me in anyway I need it in order to complete the challenge. My boys will be at the finish line to celebrate with me.

Yet only I can run the race. Only I can walk this path. Supported by many, and also alone.

And it's okay.

"If you wanted to do something absolutely honest, something true, it always turned out to be a thing that had to be done alone."
~Richard Yates, Revolutionary Road

Tuesday, September 11, 2018

From Powerless to Empowered

I am so overwhelmed by the warmth and love I have received from my tribe since my last post. I feel surrounded by love and support and know that I am not alone.

I went to the oncologist last Thursday to discuss surgery. The type of cervical cancer I have is known to be broken apart in pieces, which is why I still need to have surgery even though there were negative margins in my biopsy and it initially seemed like all of the cancer cells were removed. This makes sense to me, but makes me sad as I cope with the reality of surgery and the risks involved.

The doctor was very kind and thoughtful and took her time to be sure that all my questions were answered. Then I left the office, went for a nice trail run and started to head home. I checked my email in my car and saw an email from my pharmacist saying that a medication that was prescribed was on hold because of an insurance issue. I called, and they said that a prescription for a super expensive 28-day supply of an anticoagulant injection that is prescribed post-surgery was called in. I knew nothing of this, and it sent me over the edge.

One of the big questions I asked was what medication I would need to take long-term following the surgery. Somehow this was forgotten. Isn't there a checklist somewhere? I tried calling the oncologist’s office on Friday and was told I could not contact the office directly. I had to go through this call center situation and leave a message that would be returned in 24-48 hours. So basically, not until Monday.

This may not seem like a big deal, but these two things happening caused a huge cloud of doubt to hover over me and this whole situation. Suddenly I felt powerless. I felt like a stranger in the medical world, forced to accept that broken system is just the way it is. The oncologist while kind, forgot to tell me this important piece of information regarding the medication I would have to take after the surgery. I felt trapped in this situation and as though this is just how it works and something I should get used to. I mean, she didn’t even bring a pen into the exam room. Who forgets a pen??

This trapped and powerless feeling lasted through much of Friday. I tried to go to work, but all I could think about is that I can either accept this situation or take on the huge job of finding another oncologist. I told myself I bet they are all this way, I better just accept it. I felt defeated.

At some point I realized that I needed to cover a long run before my race in three weeks. I checked the plans for my two running groups and came to the decision that I wanted to run the miles alone. Something was drawing me to this. I wasn’t sure what it was, but I just went for it.

I left the house before sunrise as usual, and there was a light misty rain most of the 45-minute drive to the trail head. I arrived before 7am, and hit the trail. Each mile filled me with more confidence then the last. As I passed 14, 15, then 16 miles, I began to get tired and to try and talk myself into cutting it short. 18 miles is a lot, I argued. 18 miles is close enough. I had to run past my car at about 18.5, so that was really tough. But I knew what it would mean for me if I ran 20 miles 4 days after I was diagnosed with cancer.

You see, I began to think I was sick. I started to have phantom pain in my uterus. Like I could feel the cancer (impossible). The word “cancer” would echo in my head. I am learning that when I am low like this I feel like the victim in this situation. As a typically positive person I should know by now that my pity parties do not last very long. These 20 miles pulled me straight out of pity and straight into STRENGTH and POWER. I am not sick, I am STRONG. I am POWERFUL. I get to make the decisions. If this doctor isn’t right for me, I will find another one who is. I hold the power, and I luckily have the blessing of time to find the right person for me.

Feeling empowered to take on this challenge, I took the steps needed to find a new doctor. I called my GYN and the nurse there was more than happy to give me another referral. She shared my unhappiness with my experience and validated my feelings that the experience was not what it needed to be. I called the other oncologist and have an appointment in two weeks.

I should add that the original oncologist I saw called me last evening and apologized. She was very supportive and understanding in my reasons for seeking another option. She welcomed me back if I decide that she is the one I'd like to work with. She actually said "I am happy to take care of you if you decide you want me to." 

Working in the disability field has afforded me the opportunity to see what it has been like for my friends who have disabilities to experience the loss of power that goes along with their navigating this healthcare system. I learned early on in my career that people with disabilities do not need or want to be "taken care of". They want services to be provided to them. They want to maintain the control over who provides the services they need.

I do not want anyone to take care of me. I want a surgeon who will provide a service I need. It may seem like semantics, but the message that I need to be cared for vs. I need a service provided to me by an expert are two very different ways to approach this situation. One evokes a sense of power in the provider, and one focuses on maintaining respect and understanding of the person.

I imagine there will be lots of highs and lows over the next few weeks and months. It has been a whirlwind, for sure. Ultimately, I know that no matter how out of control I feel, this is not happening to me, it is happening for me.

The greatest discovery of my generation
is that a human being can alter his life
by altering his attitudes of mind.
~William James

Monday, September 10, 2018

This is Seven.

I'm not sure what I did to deserve the honor of being this boy’s mom.

He teaches me how to really hear music, how to let loose and have fun, how to be genuinely satisfied with what life offers, and how to love with deep and unapologetic emotion. He continues to be a little ball of blonde sunshine and a bright light in this world.

Happy 7th birthday, little LBZ.

Wednesday, September 5, 2018

Happy Birthday Anna, you have (er, had?) Cervical Cancer

Yeah so, while I did get many wonderful things for my birthday today including musical theater show tickets, a rock that says #1 mom, a lovely necklace from my mom, a new floor mat for the kitchen, new running shoes and a beautiful sunrise this morning, I also got the results of a test that shows I have (er, had?) cervical cancer.

Many of you know that I have been dealing with abnormal pap tests for years. You might remember this post from April 2016 where I celebrated test results being benign. It is becoming clear now, however, that those results were not very thorough and probably missed something back then.

Feeling frustrated by my previous doctor’s laissez faire approach and lack of a plan, I switched to a female doctor thinking she might understand more personally what it’s like to have multiple abnormal paps, follow-up tests, clear results, more abnormal tests and repeat for years on end. She is extremely thorough, so when my first pap test with her came back as a high grade abnormality, she wasted no time in scheduling a colposcopy (where she looks closely at my cervix with a special scope) with a biopsy (where she took tissue samples to test for cancer).

Knowing that we did not intend to have any more children, with my blessing she took a very aggressive approach and took lots of samples for biopsy. Those results showed “endocervical adenocarcinoma in situ (at a minimum)”. Those are big words that say at the very least, there were pre-cancer cells on my cervix.

The treatment for endocervical adenocarcinoma is to surgically remove as much involved tissue as possible from the cervix, in hopes of negative margins. On 8/23 I had a procedure called a LEEP with Hysteroscopy and Dilation and Curettage in hopes of removing all of the involved tissue and to see exactly what was going on in my uterus. While I was asleep for the procedure she removed a huge chuck of my cervix for biopsy and she took a good long look at the tissue inside my uterus. This resulted in a pretty uncomfortable healing period with a full seven days of light duty and absolutely no running.

So I got the results yesterday and are what I expected, but with a few questions left unanswered.

“Histologic sections from the ectocervical tissue show prominent endocervical adenocarcinoma in situ.”
Translation: There’s lots of pre-cancer cells in the sample.

“Focally, there are areas exhibit confluent growth pattern, cribriforming architecture and adjacent desmoplastic reaction. These areas are qualified for a designation of microinvasive adenocarcinoma.”
Translation: There’s also some regular cancer in there, too.

“No lymphovascular space invasion is identified. The surgical resection margins are negative.”
Translation: The cancer is not in my lymph nodes, and the cancer cells are not to the edges of the sample, so the entire group of cancer cells was removed. (This is good news!)

So the way I understand it, it was a lot of pre-cancer, some regular cancer, and the doctor got all of it when she did the LEEP procedure. For reasons that are beyond my current knowledge base, I still have to go the next step to an oncologist to talk about a “simple” hysterectomy (the removal of my uterus and fallopian tubes, but not the ovaries, which control the hormones). This is why I wonder if I had cancer and she removed it, or if I have cancer and it still needs to be removed. This is unclear.

Apparently the fact that the cells were in part microinvasive adenocarcinoma (regular cancer and not pre-cancer) puts this case beyond my GYN and into a cancer-treating situation. I originally thought I had to wait three weeks to see the oncologist, but I was able to get in tomorrow! And there is a woman in the practice! Things are looking up, and there should be an end in sight.

Those of you who know me well know that I am a silver lining type. I can look on the bright side of pretty much any situation. I am not a victim of my circumstances. Things like this in life are happening for me, and not to me. There is something in this for me to learn. I already have learned so much.

Here are a few snippets:

Ladies, keep your GYN appointments. There are zero symptoms of cervical cancer until it is well beyond typical treatment. Don’t skip your appointment, and if you have an abnormal result don't freak out, but take it seriously.

If your doctor isn’t doing what you need him or her to do, switch doctors. There are many other options out there and if yours doesn’t do it for you, find someone who does.

I run 30 miles per week, am training for my second ultramarathon, take no medications, fill my body with healthy and whole foods, refrain from using chemicals on my body, use organic chemical-free feminine products, and take supplements to balance my health, and cancer still grew inside my body. I felt a lot of shame when this first came up for me. As though I had done something to cause this, or maybe hadn’t done enough to prevent it. That’s bullshit. It can happen to anyone and it is not my or anyone else’s fault.

I am so grateful that this is happening to me and not to one of the boys. I hear so many parents say as they watch their child suffer from illness that they wish they could take on what their child is going through. I am strong, I am healthy, and I can handle anything that comes at me. So I am glad that it is me and not them.

Lastly, things could always be worse. My cervical cancer is in stage 1A1. I do not need chemotherapy. I do not need radiation. I stayed on top of my own health and caught this early enough where worst case scenario is a hysterectomy. Others are not as lucky as me.

Photo Credit: Truth Potato