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

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

Wednesday, August 22, 2018

Winter is Coming

Besides my freshman year in college, I have always lived with a cat, until about 2 years ago when we lost our cat, Bill. Bill was not an easy cat to love. He bit the boys, hated everyone but me, had an inflammatory bowel disease that required a lot of cleaning up after and was simply very hard to care for. I said when he died that I never wanted another cat, and for a long time I believed that.

It was BBZ who first started asking for a cat. There is a book series called Warrior Cats that he and his friends love. He began asking while Delilah was still alive, and due to her health concerns I was worried that introducing a new animal to the house would not be in her best interest. Add in our kitchen remodel and there seemed to be one thing after another that kept us from bringing a cat into our home.

With the kitchen remodel done (material for a future post!) and a vacation in our sights, we put in an application for a 4-month old kitten but by Friday had not yet heard back from that shelter. We went to a different shelter without a commitment to bring anyone home, but we found the most beautiful and cuddly cat ever, who quickly became Mr. Winter Z.

He is a 2-year-old domestic short-hair with stark while fur and beautiful yellow eyes. We are all smitten with him! I think about him during the day and wonder what he’s up to, and snuggle with him at night, particularly after the boys are asleep. We brought him home that same day, and by that evening he was sitting on our laps and playing with toys. He is the perfect addition to our family, and we are so happy to have him!

It’s incredible to see the way the boys want to care for him. He can do no wrong! I am so glad that I did not let my bad experience with Bill keep me from welcoming another cat into our home. Winter’s story is that he lived with a family with three kids before they moved into an apartment that didn’t allow him to be there. We could tell that he came from a family, and I am so glad we are able to give that to him again. He is a pretty lucky cat, and we feel incredibly lucky to have found him! (funny side note is that his shelter name was lucky, but the boys really wanted to give him his own name.) Last night he discovered pouncing on LBZ’s feet under his comforter. So much cuteness!!

And as Game of Thrones fans, we’re super excited that we get to say “Winter is coming” every time he comes into the room!

Saturday, June 23, 2018

Delilah Jones Z 10/9/2004~6/14/2018

After just over a week, I am finally ready to write about my sweet Delilah-girl.

When she was a puppy, she was hit by a car. She required a surgery that removed part of her hip joint, with the plan that the scar tissue would create a false hip that would serve her well. With this also came the reality that she would likely have severe arthritis as she aged both from being a large breed dog and from her accident. I suppose we were somewhat prepared then for what her aging included.

Scrolling through Instagram yesterday I found a photo of her on the couch from April 1, 2018. It is probably safe to say that this may have been the last time she was actually on one of the couches. She had been falling a lot, and it was right before our spring break trip to Orlando that she actually had trouble walking. I remember being afraid to leave her with N’s parents since she was so unstable. They were more than happy to take her though so we could go on our trip. By the time we made it home, she was much better. Still falling, but not as often.

During May and June, N was the one who cared for her the most. She was unsteady walking, but seemed less stiff when she did walk, so he always took her and supported her for the walk. It was when he went out of town during the week of May 24th that I realized just how much he was doing for her. She was tilting her head and seemed extremely dizzy. I was concerned and took her to the vet expecting the worst.

The vet did a thorough neurological exam that came back normal. Then she did some x-rays to rule out cancer, which they did. I shared that I wasn’t sure what was typical aging for a dog since I had not had a senior dog before. The vet said with some hesitation “while I don’t think we are there yet, have you thought about end of life plans for her?”

I was taken back because I actually did think we were there. She was falling all the time, had to lean on walls to walk and was barely able to go outside to the bathroom. If the vet wasn’t able to give me a treatment plan, what was the plan?

I left the office feeling uneasy about the next steps. Delilah would barely walk at all for me, and I had to heavily encourage her to drink water. She stopped eating her food completely, so I gave her hotdogs and other table food. N came home the next day and we just couldn’t figure out what to do. While on a run, which really is when I do my best brainstorming, I realized the vet couldn’t get a great look in her left ear to rule out the ear infection. She said it was unlikely because her head would be tilting to the other side, but I knew we had some antibiotics so I gave it a shot and wow did it make a difference!

Something made a difference anyway. She could go with N on a walk again, so that was at least something. We were almost out of the pills, so I called the vet’s office on May 24th and told then what was going on. The vet again said the ear infection was unlikely, but if we wanted to treat it there was a better antibiotic that wanted us to use. Another trip to the vet later and we had more pills and more hope for the best.

Unfortunately that hope didn’t last long. She continued to get worse, barely able to go outside and to use the bathroom. She wouldn’t drink anything but chicken broth and even that I had to help her do. She was full of so much spirit and life. She wanted to be with us and wagged her tail like crazy when she saw us, but her poor little body was just done.

Once we decided that we needed to make plans for the end of her life, I made some calls. First to her vet to see about taking her there, next to a vet that a dear friend recommended who would come to the house so as not to disrupt Delilah’s day. We decided we wanted to have the vet come to the house, so I scheduled the visit for the upcoming Thursday, June 14. It was one of the hardest phone calls I’ve ever had to make.

Wednesday night we took her on one last walk in the wagon since she really couldn’t walk at all by then. She wagged her tail and seemed as happy as she could be considering. Thursday the boys went to camp (we gave them the option to stay home but they wanted to go to camp) and N and I took turns laying on the floor with her and petting her throughout the day. We joked that she probably wondered why the heck we were bothering her so much! She usually has the house to herself, after all.

When the vet got there she was very soft spoken and kind. She noted that Delilah didn’t get up to greet her, but banged her tail on the floor in excitement to see a visitor. John Denver was playing in the background and the vet noted what a nice send-off his music is. I sat on the floor and Delilah’s nose was pressed against my leg. She was calm and curious about what the vet was doing. The vet had to shave a bit of hair off of her leg, which Delilah was curious about, but didn’t make a fuss over. She nuzzled into my leg and with a lot of tears and beautiful music in the background, she took her last breaths while in my arms.

As much as I thought I was prepared to let her go, nothing could have prepared me for the loss I felt as I saw her body in the absence of her spirit. The reality that I would never see her again set in, as did the intense grief. I went through this with both of my cats in the last 10 years, but this somehow was different. Delilah was different. Delilah and I were different. And now she is gone.

Grief is such an interesting process. It is very personal, and for me it has been coming in waves. I could barely be at home for the first few days without breaking down, then once work started this past Monday I was busy and distracted. Then Wednesday I picked up her ashes from the crematory and the grief came pouring back. It comes down to the fact that I just miss her so much.

But even with as much as I miss her, I am ever so grateful that I was able to spend nearly her entire life with her. She was only 13 weeks old when she joined our family, and what a gift it was to share her life with her, and to hold her while she departed this earth. It was an honor and a privilege to care for her throughout her whole life, and particularly during these last few weeks when she relied on us in a way she never had before. She taught me what it means to love an animal, and what it feels like to be loved with no expectations for return. While we are in no rush to get another pet, being with her throughout her life and now experiencing the intense loss in her absence, I know we will have space in our hearts and in our home for another animal sometime soon.

Rest easy, sweet girl. I love you so.

Tuesday, May 29, 2018

Tandem Bike Riding and a Lesson on Accommodations

Last week I had the pleasure of completing a visit to an agency I see at work which include a program where tandem bikers take off on their bi-monthly bike ride to a nearby park. The agency provides services to people who are blind or visually impaired. They have lots of adapted bikes where a person with sight sits in the front, and the person with the visual impairment sits in the back. It's a pretty awesome thing to see. N has been traveling a lot for his job, so I am often solo parenting a few days a week. Lucky for me I was able to bring the boys along to see the tandem riders.

I just love when I am able to show my boys how people with disabilities can do the same things as everyone else, just sometimes a little differently. On our way there we were talking about what to expect, and LBZ, who is 6, asked me whether or not people who are blind can work. We spent the rest of the ride there talking about job accommodations, supported employment, etc.

Yesterday at the dinner table, my mom (yes we had dinner on a random Monday!) told a story that a woman at Lowe's who helped them had a visual impairment, and she utilized a headphone set that read the words on the screen to her. BBZ, who is 9, looked at me and said "hey mom, that would be one of those...what are they called again?" "Accommodations." "Yes, that's it! That is an accommodation that helps her be able to do her job!"

So we were not only able to watch these folks with a variety of needs ride on the back of bicycles built for 2, but my boys became a bit more aware of what people with disabilities are able to do, with a simple accommodation.

Thursday, April 26, 2018

Exciting News About My Parents!

From the time I was 9 months old until I was in college, my parents lived in the same house in the suburbs. They moved to another suburb in 1998, and in 2003 they moved to about 5 hours away. In 2006, my dad's job moved them to the far north, about 13 hours away, where they have lived since.

So it has been about 15 years since I lived in the same city as my parents. I don't know what it's like to have dinner with them on a random Sunday, or to have support of family nearby as our young sons grow. Well, that's about to change!

My dad is retiring and they are moving back to my city! It is a very exciting time for us. They will close on the house on May 11th, so only about 2 weeks away!

The college where my dad works threw a little retirement celebration for him earlier this week, and the news picked up the story. This wasn't the first time my dad was in the news. He also dad got attention when he wore head to toe pink to raise awareness of breast cancer.

You might notice in the video that my dad wears a button that says "Please excuse my intrusion". The story goes that when he worked at the Missouri Institute of Mental Health in the 90s, email was brand new. His boss at the time was quite aggravated with this new concept of email, and described it as an intrusion to his day. As a result, my dad begins nearly all of his emails in this way.