Letters for the future

I love letters. Just like my love for books, letters will never go out of style for me. There is something so wonderful about giving and receiving something hand written, that someone took precious time out of their day to sit down and write out just for you. I love it.

I’ve written before about my love of letters and how I’ve turned that into a new tradition for Jacob. I write him cards and put a dollar or two (age appropriate funds to match how old he is) in each one. I usually mail it (I love it being post marked) and stick it in a box for him to read when he is older. I did this when he was in my belly, mailing him Christmas cards filled with our dreams and hopes for him.

Today, I went to a local party store and bought…a lot…of cards. Birthdays, wedding, graduations…you name it. At only a dollar a piece, it was a deal for nice cards but also added up quick. I had to remind myself that I can’t write everything.

My intent is to write cards to Jacob for these very special occasions (and some everyday occasions) that he will one day open. As I stood in front of those cards, my mind filled with the words that will eventually be scrawled all over them…from me to him. Am I doing this with the hope that I will hand them to him? Absolutely. The reality is that there will always be words left unspoken and thoughts that are not expressed.  Terminal or not, I am glad to be doing this for him. Tomorrow is not guaranteed and I want him to know the wishes that I hold in my heart for him.

And besides, who doesn’t enjoy looking back and reminiscing about words spoken long before that still ring true today?

Decisions, decisions…

It’s hard to believe that it’s been just over 3 months since I had a craniotomy. Just over three months since a rogue cancer cell took off running towards my head, fought against all the healthy cells and snuggled into my right cerebellum to make a home. Although only a few centimeters big at the time of surgery, I had already been experiencing horrific headaches up my right neck and above my eyes. The fear of another stray cell making a home in my brain will always be a very real fear for me.

In October, I had an urgent brain CT because of headaches and dizziness. Thankfully that came up clear and the headaches have since resolved. I’m still dizzy when laying down and moving my head to the right or if I stand too quickly. This Tuesday, I had my brain scanned again in preparation for my Gamma Knife follow up with the radiation oncologist today. I am relieved that once again, my brain scan came up completely clear. It’s likely my inner ear causing the dizziness.

My appointment today went well and, assuming nothing crazy happens in the meantime, I don’t need another brain CT / follow up for 3 months – WAHOO!!

The nurse oncologist called me Tuesday after the brain scan to let me know the good news and to talk to me about treatment options. I visit MD Anderson next week but I haven’t been on treatment since October 18th when I stopped Xeloda. My skin is not improving but still looks relatively good (considering), internally I am stable, and actually quite a bit better than I was back in July. My lymphatic system is resolved and I have 3 relatively small spots lighting up in my pelvic area. My shoulder did not appear on the bone scan, though it’s possible there is stable cancer there or it’s possible it has resolved.

So I essentially had three options for treatment. I continue with no treatment while awaiting MD Anderson. The risk is just that – no treatment. When I visit MD, my assumption is that it will be a visit like the others but that they would also test me for clinical trials and see what I am eligible for. I would not actually start anything for (potentially) a few weeks / months.

Option 2 is to start Afinitor. This is a chemo pill and showed up on my Foundation One testing as an option for one of my five mutations. It is typically used in estrogen positive breast cancers, which would make the insurance coverage a battle. My oncologist would need to “sell” my case to the insurance company to try and obtain coverage. This could take a month or so. Often times, centers that have clinical trials have an easier time obtaining coverage for drugs like this since they have trials on their side, so to speak. It would be considered a second line of treatment, which would potentially eliminate me from certain clinical trials. This being said, it is also a treatment option that I can utilize at a later time, in the hopes of it working.

Option 3 is to go back on Xeloda. I have skin progression that started while I was on it previously but it was working to keep my internal progression in check – if not helping to resolve it. It would not be considered a second line of treatment since I had used it previously. I would lose my washout period, which is required for clinical trials, however since I will likely only be assessed next week at my visit, I will have time for a washout period once I know what trial I am eligible for. It’s possible that I find out that I’m eligible for a trial that has a 2 week washout period but that it won’t actually start until January. That would be quite a long time without any treatment since October, considering it would only require a 2 week washout.

So…it’s been a long week. After conversations with my nurse practitioner, my local oncologist and a whole lot of soul searching, I decided to restart Xeloda yesterday. I don’t want to risk a second treatment right now, although I like the idea of a chemo pill option again. It’s nerve-racking to not be on any treatment. Although I feel reasonably ok, there could be cancer cells dancing around my body making home where I don’t want them to be. It was not an easy decision to make but it had to be done. Here’s hoping my body decides Xeloda is the one for it and all of my cancer resolves, skin included. 😉

Aside from that, my skin is very slowly healing from radiation. Crazy to believe that I’ve literally been healing for 2 months now and I healed fully within 2 weeks before. I still have an open wound on my chest but it’s a little larger than a quarter now (crazy how much pain that small spot causes!!). The other smaller spots that were healing have scabbed over and are healing at their own pace. I know Xeloda will once again slow the healing process, and frankly I am OVER radiation burns, but it’s a risk that I need to take.

That’s my medical week, I think. Jacob is on his first round of antibiotics since last December. He came down with a wicked cough and a fever. This is the first time that we have given him Tylenol and not had his fever resolve almost instantly…it was quite nerve racking. He is slowly feeling better, thankfully, and the antibiotics are working their way through his system.

I hope you are all enjoying your week and this month of November. Rest up this weekend, enjoy time with your loved ones and continue to spread that love!!

3rd grade…

When I was in 3rd grade, we had a class president. One particular month, I was nominated along with another girl. When it came time for the class to vote anonymously, it came out 50/50 for us. We voted another 2 times and the results were the same. Our teacher said we needed to think hard about who we wanted to nominate and ensure it was who we believed in for the month.

We had already voted 3 times and the results were unchanged. Both of us were capable of the role for the month. I decided to vote for the other girl. Part of me thought that she may do the same. Either way, we were both deserving and willing to accept the role.

The class voted and the results were in…49/51. My vote change mattered enough to elect the next class president. I was partly sad at not winning and partly happy that my vote had the effect that it did. It was interesting to watch the class reaction, as everyone was quick to express their thought one way or the other and in awe of the fact that one person changed their thought.

Interesting, huh?

The results are in

Growing up, my parents were strict about school. We couldn’t play outside until our homework and assignments were done. Taking after my big sis, I strived for straight A’s and it was rare for a B to show up on my report card. It eventually became second nature and studying to maintain my average was the norm.

When I was in 7th grade, I took regents Earth Science. In NY, regents is a big deal. It’s a a level higher than your high school diploma because you have to take regents level classes.  If I remember correctly, you had to take 3 regents classes to earn your degree. My first attempt at this, because I did not want to take chemistry as a senior, was Earth Science. I had never encountered such a challenging class. No matter how much I tried, I was barely passing. One of the only lessons I retained was also a Saturday Schoolhouse Rocks special the week before so I was able to learn it.  This class was the first time I learned that anything above 65 was a passing grade.

I prayed a lot about that regents test. I knew it would be the hardest yet and that I didn’t know everything that would be on it. I studied hard and did the very best that I could. I was terrified that I would fail. I had never failed a class before. I needed a miracle to pass this test.

When our science teacher came in the following morning to give our grades, I saw the faces of each person after he called them up. I could tell who was genuinely concerned and who wasn’t. My name was called and I walked up the aisle with sweaty palms. I looked at the teacher and he moved his paper down to show me my grade. 67. I had passed by two points. I felt the air leave my lungs finally and walked back to my desk. I was both terrified that I had earned a 67 and ecstatic that I had passed this class, though barely. My miracle had happened.

From that point forward, I didn’t take school or my grades for granted. I was very conscious of my efforts, my studying and my grades throughout the year. I didn’t want to think about failing ever again.

My PS called this morning with my biopsy results. As expected, the nodules on my skin are cancer. I exhaled and told my doctor that he promised he would only call with good results and laughed. I think he was more upset about the results than me. Cancer sucks but I knew that the likelihood that it wasn’t cancer was minimal.

When my RO called me Wednesday morning to ensure I received my scan results, I mentioned that I was trying not to get my hopes up but that it was hard not to. Her response was, “I know. But regardless of the results, we have a treatment option locally and a visit to MD Anderson. With these scan results, I would consider this optimistic.”  It made my heart smile.

She is right. We will continue on this path and find a treatment option that works well for me…one that will eliminate this disease so I can continue to live. 

Thank you all for the continued love and support that you show my family. Your prayers are worth their weight in gold and I am eternally grateful for every single one of them. 💚

I believe in miracles…

Do you believe in Miracles? Those astounding, unbelievable, unexplainable, absolutely incredible, dumbfounding, completely bewildering, shocking moments? Those events that you cannot explain in any way and that seem impossible?

Tonight, we are praying for one.

A miracle, by definition from dictionary.com, is “an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause”.

I know that I cannot change the results of my biopsy. My skin is what it is. And it is extremely unlikely for it to be anything but cancer. And I know that. I accepted that, weeks ago. I am moving forward and making plans and phone calls based on the fact that I have skin progression.

But.

My tumor markers were perfect when last taken two weeks ago. I have no internal progression as of Tuesday. Part of the area in question is on my prior radiation area, which avoided cancer before. So…why? I can’t help but let my mind wander to the impossible…the improbable. What if?

What if it isn’t cancer? What if it’s just a skin issue because of everything that I have been through? What if it’s part of my detox? What if…it’s just a miracle?

The waiting is the hard part. Like I said, I cannot change the results. I can just change my mindset. And tonight, I am praying that my phone call tomorrow (hopefully) will be that of inexplicable awe. I hope to hear the words “negative” and “not cancer”. I would even take a swear word or two that promotes the lack of cancer.

It is what it is and we will deal with whatever news comes our way. But I cannot help but hope and pray for a miracle tonight.

What’s missing…

Today while getting ready I did not have to take an extra 20ish minutes of mine and my husband’s time. No covering in silvadene, xeroform, bandages and netting. Just a few minutes of cleaning the one wound with saline, applying the Santyl and covering with a saline soaked gauze and a bandage. Sounds like a lot but I don’t think the entire process took 5 minutes  – much less than before!

I’ll have to change the saline in about 3 – 4 hours but it’s a much easier process. I won’t pretend it doesn’t hurt because it’s pretty painful. I would compare it to taking a shower when my chest was all open wounds. It feels like that on the open wound. Hopefully this causes it to heal quickly! 

Happy Wednesday, friends! Try to find a way to spread some love today. 💚

Scan results…

Hey, so remember that time today when my MO called me to give me good news about my scan results?!

No internal progression!!

Yeah…I’m going to say that again…NO INTERNAL PROGRESSION!!

My lymph nodes have resolved and my bone mets appear stable with no progression. Yes, cancer but no progression – Yay!!!