I want to be number 2.

I’m tired. I know, I know, I say that a lot. But I am. I thought it was because I was pushing myself towards normalcy and was excited for time off, despite appointments, to rejuvenate. I napped with Jacob almost every day for 2-3 hours at a time and was still ready for bed with him at 830pm.

I went to the checkup with my oncologist today. He spent lots of time with me and we talked about how I’m feeling. I expressed my tiredness to him. He asked if it’s something that I simply wanted to mention or if it’s gotten worst over the last 3 weeks. I said that I feel like it’s gotten worse, however I don’t know if it’s because I was off and I just had the opportunity to nap. Maybe I’m always that tired but don’t normally nap?

So we checked my blood count and my platelets, which have always been normal (even the low end of normal during chemo), were 80. The range is 139-361. Since I’ve never had platelet concerns, they did another blood draw, this time from my arm instead of my port. 86 this time. Well, darn. I guess that explains why I’m so dang tired! A quick review of the side effects of Afinitor and sure enough, there it is.

I go for my Xgeva shot next week so while my numbers aren’t low enough to warrant a transfusion yet, I’ll have them drawn again and an eye kept on them going forward. 

In other news, I was showing him my radiation burn (I swear it’ll heal someday…) and his jaw dropped. “Meghan. Do you have pictures of these skin lesions from before starting Afinitor?” Sure, somewhere. “These look significantly less inflamed than before…and didn’t you have more?!” Well…actually…

I had mentioned to Joe this past weekend that some of the cancer bumps on my chest seemed to be smaller and no longer red. I expressed that I didn’t know if it was my mind messing with me but the bumps on my side seemed smaller too.

I reached up and touched my right neck and said, “The Nurse Practitioner is having my scans include my neck at the end of the month. I had a swollen lymph node that could be easily felt. I can’t feel it today.” He reached up to feel my neck. “And it was there for a while?”  Yup. I looked up and he smiled brightly.

There are no words. There are MANY ups & downs in this life with cancer. Lately, it seems that I am fighting to find the right drug. Maybe, just maybe, this is it. He shared a story with me about his trip to the San Antonio Conference last month. One of the oncologists gave a speech about one of his patients that was triple negative and had been on Afinitor for the past 2 years. I smiled and said, “Well, I want to be number 2.” Please?

Who knows if it’s working. I had my tumor markers drawn today and I’ll have scans at the end of the month (though my doctor wouldn’t necessarily stop this drug at that point because it wouldn’t have been long enough…depending on the scans, of course) but today, this appointment brought me to tears. I want to be number 2. I want to be the reason that they start giving this drug people like me, who are triple negative, because it is saving lives. Because it will save mine. I hope & pray.

So today, I will snuggle my sweet boy and kiss my husband and believe that perhaps I have found a drug that will help me outlive the time I’ve been given.

Spread the love, my friends. Today is a good day.

Advertisements

Happy Wednesday!

Hello, world!  It’s been a busy week already and we’re trying to get back into the swing of things after a long time away from home.

So I showered today. I know what you’re thinking – “p-uuuuu!” (is there a proper way to spell that?). But nope, I’m not stinky – I actually showered instead of taking a bath. Yeah!  Some of our travels didn’t have baths so a shower was required. It’s been months since I’ve showered because of radiation burns and though I still have one open wound and it was a bit painful in the shower, it was awesome. The ability the wash my own hair, stand in the steamed up shower and feel the warm water drip down my back…oh, so wonderful.

Oh, and my port can now be used!! This is SO awesome too! No more arm pokes. 😊

My radiation oncologist (RO) thinks my wound may be healed within about 2 weeks! Say, what?! I know that’s wishful thinking but the idea that I won’t have to change bandages every 3 hours, have to apply a special lotion every night and have consistent pain in the center of my chest…well, that’s quite exciting.  We’ll see – but that’s what I’m aiming for! And being healed means that I will finally be able to have surgery and that also means that I’ll be able to have MRIs.  All of these things are actually super exciting!

I also saw the neurosurgeon, who reviewed my actual brain scans and agreed that everything looks stable, which is also great news to hear. I’ll take that!

Today I saw my oncologist and we had a long discussion about treatment. We discussed an old school standard triple negative chemo treatment called CMF, which is an option and appears to be quite tolerable and effective, however it is IV chemo.

Afinitor is still an option but he is not entirely sure that I’d be able to get it covered by insurance, which is a whole other story. Since internally everything appears to be fine (if not better), it makes sense to continue Xeloda until I have internal progression or my skin nodules become larger, concerning or unbearable. My blood was drawn today and I’ll have my tumor markers in a few days. I am anxious for that, as they have been a pretty good indicator of whether or not I have internal progression. Aside from that I am on the low end of normal blood numbers but still within the good range for chemo. I am slightly anemic…anyone have a home trick to get that number up, aside from eating red meat?

In the meantime, I have spoken with the oncologists at the Mayo Clinic and MD Anderson, both who agreed that continuing Xeloda is the best course of action for now. MD Anderson discussed that while I have progression, it isn’t significant enough to stop treatment yet. Aside from discussing Xeloda, the Mayo Clinic actually has a Phase 2 trial for the same drug that MD Anderson & Emory are testing. Apparently that drug is the hot topic right now! 😉 She has the same concern regarding measurable disease causing me to be ineligible for now.

As my local oncologist referred to it, I am “treading water” for now. I’ll continue Xeloda, have scans every 6 weeks to ensure that nothing is missed and *hopefully* in a year or 5 from now, I’ll still be treading this water and staying on the current course. For now, it feels right and hopefully it will stay that way for a long time!

Have a wonderful Wednesday night, everyone! 💚

MD Anderson

I’ve never seen such a massive center. Having visited quite a few cancer centers in the last few months, I’ve seen my fair share of buildings. This one was massive. I was in the Mays Clinic building and at one point, I had to walk to the main building. I used the sky bridge – which takes you over traffic outside – and I kid-you-not, it took me at least 10 minutes just to walk the bridge. There’s even a shuttle to take you across! It was very nice. Anyway…

I liked this doctor a lot. A young gentleman with a toddler himself, he enjoyed chatting with Jacob and was very candid with me. I enjoy candid when it comes to cancer. I need it. 

We talked about my visits with the different centers, which he very much supports, and he said something that I thought very highly of. When I mentioned what the other the centers had said (clinical trials are the way to go), I also stated that I did not make a decision yet because they are the number one cancer hospital. He looked me in the eye and said that it isn’t the center and status so much as the trials available. Are the trials something to get excited about? Then go for it.

So they do have one trial (potentially two) for me. It is an immunotherapy trial (I am very certain it’s the same trial that Sloan wanted to test me for but I put that on hold). It is “promising” but not exciting, in his words. The other trial is not quite as promising for me (PARP indicator, which is a targeted therapy, currently used on BRCA positive patients, but may work on TN without that mutation) but an option nonetheless. Immunotherapy is showing great promise in other cancers but hasn’t had significant progress with breast cancer yet. This trial is still in its early stages (Phase 1) and because I am triple negative, immunotherapy has the potential to work for me.

I expressed my hesitation with a Phase 1 trial (still determining dose toxicity, side effects, etc) and he agreed but said not to be deterred simply because it’s a P1 trial. Most times, they have been proven to work in other cancers and they have reason to believe that it would work on the one being tested on (in this case, triple negative breast cancer). So it is not necessarily a first on humans drug (though that is certainly a question to ask). This particular drug also pays a small travel related expense, which I understand to be extremely rare. It’s also weekly chemo initially, so relocation would be likely…assuming a strong response (big assumption and hope there!). It also is worth mentioning that trials provide access to drugs that are not FDA approved. So if they are in a trial, there is reason to believe that they are “good” drugs with the potential to target cancer. I wouldn’t have access to these drugs if I did not participate in a trial. There is also the potential that the drug would not work, which would be a risk and a reason to stop a trial. Regular blood work, scans and doctor/research coordinator visits are required aside from actual treatment. Trials are labor-intensive.

The doctor also mentioned that I should  not have started Xeloda if I want to get on a trial soon (I do) because of the wash out period. He also said that he would not have necessarily stopped Xeloda when I did because of skin progression. Yes, it’s progressing and a systemic therapy is required, however it is not likely 100% progression and since it is working great internally, he likely would have kept me on it longer. Interesting, right?

Side note – I am staying on it for now, until I know what trial that I want and what the wash out period is. This will also give me time to prepare for wherever the trial is located.

The doctor had a lot of great advice and comments. One thing that makes me incredibly joyful is that he said I am in the infancy of my treatment regimen. He rattled off many standard of care treatments for my cancer and said that any of those are all viable options when I am ready (aside from trials). I cannot express how happy I am to hear that. I had thought that my standard treatments were only 2 IV chemo after trials and am so relieved to know that I have many options left. Many of those are IV chemo, however they are there and ready when I am.

We talked at length about quality of life. I don’t talk about it a lot here, however it is a conversation had at home often and something that doesn’t leave my mind. Many of these trials have unknown side effects (particularly P1), as well as the potential for significant travel expense. In his words, this is not something to go bankrupt for and the quality of life gained from continued treatment is important to recognize.

Going through chemo initially last year, I had obvious down days (weeks, really). I fought through to enjoy the good weeks. After surgery, life slowly returned to a relative normal while I got used to long term side effects. As I continue down this path of life-long treatment, I am beginning to recognize my new self. It’s harder to get up from bed, often a sit to get my head straight and stretch my body so it doesn’t ache is required. Stairs make me more tired and winded than ever before. Joe helps me up when I squat or sit at Jacob’s level. I’m tired most often. I am still healing from radiation and the pain that I have from the open wound is not like anything I have felt before. It hurts, continuously, and often keeps me up on nights like this. My feet ache more often than I would like and I have stomach pains after most meals that sometimes require me to sit still until they go away. I don’t share these side effects because I want to make a spectacle. I am simply sharing my new normal. Things that didn’t bother me before but sneak  up on me now, whether because of treatment or metastatic disease. The idea of quality of life is very real to me and I understand why he feels the discussion must be had. There may come a point when treatment becomes worse than the reward.

So for now, I will embrace my sore feet and aching body and continue on with life. I will enjoy these days that I am blessed with and not roll my eyes and push off the tiny hand that is covering half my neck (along with the little body snuggled up against me in slumber).

This visit was informative and I am glad that it was possible. I am meeting with the clinical trial team at Emory on Tuesday as well. Since we were headed there for Thanksgiving, we are going a day early to meet with them and discuss trials. The doctor at MD Anderson is anxious to hear what trials I may qualify for there as well. I plan to share with him what I learn and look forward to his honest assessment and recommendation, as well as the doctor’s at Emory who I very much liked as well. 

I know there is more to share somewhere in my head but that’s all I can think of for now. Saturday we head to visit Waco, which I am crazy excited about. Who doesn’t love Fixer Upper?!

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?

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. 💚

Giving up

I woke up at 2am with another hot flash and the inability to fall immediately back to sleep. I sat up, with my head in my hands, and had a thought. I don’t want to do this anymore. I sighed. I hate this.

The thought lingered for a moment and in my hot, sleepy daze I thought about what that meant. What would it mean to not do another round of chemo? What would it mean to give in to my cancer? What would it mean to say I’m done?

It would mean giving up.

In that moment, despite the pain in my bones, the fog in my head and the queasiness of my stomach, I was angry. I was angry at my cancer, at my chemo, at my hot flashes…but mostly at myself. Giving up has never been – and will never be – an option. The thought isn’t allowed here.

Yes, these days and nights are hard right now.

Yes, this journey has a long and winding road ahead.

Yes, I am scared.

Yes, I am still fighting.

No, I will not give up.

This morning my little man woke up snuggled next to me in bed and started dancing. His eyes weren’t even open yet but he was wiggling his little tooshie to the sound of the song in his heart. I am reminded of the song that was in my heart on Thursday.

Today will be a great day.

Because I am here.

Because I feel a little better every day.

Because I am blessed.

Because I am loved.

Today will be a great day – because I will make sure it is.

Tell me, dear friends, how will you make your day great?