I am sorry I have been gone for so long and not updated you all. Back at the beginning of summer we had some major internet problems and while I had a couple of posts written I was not taking the time to figure out how to get them posted from my phone. I also could not print due to the internet issues. Consequently, I discovered that I cannot do a sufficient job editing just on the screen and that I need to print it out to do a decent job of self editing. Now those two blogs seem terribly out of date.
So what did I do all summer? I lived. A lot. My live in babysitter daughter was home for the summer, and with her kind help I did everything I had wanted to do the summer I was diagnosed. I hiked once a week with my mom. I started a run streak that began memorial day and lasted until the Fourth of July. Then I started upping my mileage. I did one long run a week with my best running friend (my BaRF). We got up to 8 miles before school started. I worked on strength training in between runs, thus making guns (and clearly puns). As a family we laughed and enjoyed each others company, particularly in our new above ground pool. My scans continued to show that my metastases were stable. It was a glorious summer. I felt so alive and capable. I felt like I could look further into my future than I had since the diagnosis.
Then school and the start of soccer season came. For the first time we had so many activities that I was buying two tanks of gas a week to get to all the soccer practices. Three days a week I was spending 1.5 hrs a day minimum driving to activities. All the activities made my anxious kiddo more anxious, and we would have a few nights a week with little to no sleep. My runs were now dictated by soccer practices. I would run as much as I could in circles around the fields and try to squeeze in a long run with my BaRF each week. As we are two homeschooling moms with other kids in school, this was also a scheduling challenge. The runs gave me some mental help, but the last two months I have been more fatigued and more mentally worn down. The scans continued to show stability which was uplifting, but by October I had to take some mental health days. I missed out on the family visit to Balloon Fiesta and two days later I headed into starbucks for a day to myself. These were drastically rejuvenating, and provided me time without any kids asking for help, to drive them to activities, or middle of the night wake ups.
Now soccer season is winding down and giving me gradually more and more time, bringing me back to this blog and you all. I am tossing around some crazy ideas so more on that later!
It’s been a crazy month. But wait, I have four kids. Every month is crazy. My oldest kiddo turned 15…we signed her up for drivers ed. So much to think about. It is also the one year anniversary of my neck surgery. I have been mulling this one for a good portion of February. Hard to believe a year ago I was driving across town to an unknown fate that involved me desperately needing a neck brace. I had a very sweet surgeon and when I went to see him on the first of this month he could not help pulling up my original MRI. He shook his head as he told me that he has never seen someone come in with no neurological symptoms, a spinal cord compressed in half, and a bone completely eaten up by cancer. Then he turned to me and told me that he has no idea what my future looks like because he has never seen anyone like me.
At that point it hit me again. Just six months before my surgery I was in Orlando at Universal Studios. That means that I was riding roller coasters. I was being whipped from side to side, my head on a bobble, as the rush of fun and excitement filled me. To think that I had a bone completely eaten up and my spinal cord was compressed. I had no idea. How in the world did my head not topple off leaving me in a totally different place? Life is a crazy ride.
As my doctor smiled and shook his head again at me I realized how absurd my next questions were going to sound.
“So will I ever be able to ride roller coasters again?” He laughed again. I felt emboldened and asked my second question. “Also can I use a barbell on my back for squats?” He laughed and smiled a warm smile. “These are your questions? Roller coasters and barbells?”
Yes these are my questions. Roller coasters so I can ride them with my kiddos. Barbells so I can get stronger because I am am pretty darn sure that the only thing keeping my head on were my neck muscles. He released me from having to see him again. While I am happy to be sent off to a world of barbells and roller coasters I am hesitant to take the final steps away from him. I know how quickly things can unexpectedly change and I like having this guy in my corner.
In my other corner I have my oncologist. He also had good news for me. I had another PET scan, another 1000 dollars. The pain in the pocket is hefty, but when you find out that it shows no signs of active disease it’s easy to put the cost behind you. Yes, you read that right. The cancer is not doing anything. It has no metabolic activity. It is just sitting there with much of it a bit smaller. Then the doctor came at me with more good news. My cancer marker protein levels have dropped by a hefty 10. I was at 87 in January then 77 in February and then down to 67 this month. That is the lowest they have dropped since they shot from 20’s right before surgery up to 70’s right after surgery. My numbers have been so weird my doc has not been able to use them much, but he can’t deny that this drop is good. Life is good.
Now I head off to amazon to pick which barbell I want to put on my amazon wish list. I think I might wait a little while until I have built up some more neck supporting muscles before I dive into the world of roller coasters again. I’ll take being the outlying patient if it means I get to be strong and ride roller coasters with my kids.
My youngest and I are working on the same thing, perspective. Well, I guess the whole family is always trying to work on that right? Turn that frown upside down. Although I am not talking about getting rid of a feeling. I think it is ok to acknowledge a sad or mad emotion, but I also feel that it is how we respond to challenges in life that defines us. We can acknowledge the sadness and then work on finding the positive in a situation.
This past week has been a prime example of changing perspectives. I knew I was not in the most positive place. I knew a run would help me. In fact, I have not run since thanksgiving. I was struggling on where to find a spot to put it in. Then I realized I could have one of the older girls watch them after school while I ran around the school. It was the perfect idea. One older girl had a sport and one could watch while I ran. Then we would all finish at the same time. My youngest had a different perspective. She did not like the idea of me going for a run at all. Suddenly I was faced with the prospect of no outside time for exercise. It was a major blow. I spent the next two days bummed. I had to change my perspective.
I have a strength training program I got a while ago. So I got that out. I set up my workouts in my calendar and I got going on one. The exercise endorphins kicked in. My mood picked up. My perspective completely changed. I started thinking about what I could do instead of what I could not do. Sure I may not be able to run outside right now, but I could regain my guns. I could strengthen my neck muscles and my back muscles. I began to feel more positive. I realized I could do running inside. The kids were happy so I jumped on the treadmill. It was boring as heck but I got 3 miles in. Boom! New strategy formulated. I will get strong and try to get one to two runs on the weekend when my husband is home. I will not get alone time outside as much, but I will get stress relieving exercise in with the strength workouts.
With my perspective changed I had renewed energy to help my kiddo work on changing her perspective.
It’s been a while. We have been crazy busy. Lately all of my time has been focused on my youngest kiddo. She has been having a very rough time for the last nine months and it has recently come to an anxiety filled head. The poor child has spent much of the last few months in tears off and on. She hates to be away from me and forget about traveling. Yet we had a big family trip planned to another country. I tried a highly recommended book which helped but the closer we got to the trip the more difficult life became for her. We finally found a therapist who could get her in and seemed like a good fit, but we did not have many visits before we left. I tried a countdown calendar made by her to help her get ready. That did not help…in fact it may have made the anticipation worse. The early morning of the trip was filled with tears. She did not want to get in the car. Once I convinced her to get in she napped until we got there. Then there was a massive crying screaming as we got to the airport and had to get out. Then I had to convince her to get on the plane. She had to know where the bathroom was, and she had to have an aisle seat so she could flee to it when she needed to. Quiet crying and constant fidgeting was the order of the day. Nothing like 20 plus hours of travel on a plane next to an anxious kiddo to give you time to think about life.
Here this poor kiddo of only eight years old is filled with a shaking anxiety. Why? Because of me…yes I know that it is not really my fault. I know I did not cause this cancer. But it was me. It was my body. It was me who left her gymnastics early to head to the ER. I was the one who did not return for a week. I was the one who suddenly was not the super strong mom. I was the broken mom with no neck bones who she had to be careful around. The one who choked on my pills because my throat was messed up. I was the one who everyone was carefully dancing around. I was the one who always comforted her and suddenly couldn’t in the same way.
If she must take on the burden of worry about her mother then her mother will gladly take on the burden of being the only one she wants right now. I will be the one who she gets angry at. I will be the one whose arms she falls into. I will be the one who sits in a stinky castle bathroom while she seeks the quiet realm of the bathroom stall. I will be the one to find a way to make her laugh. I will stand by her side because I owe her. Because I am her mother. Because I love her more than I ever thought possible.
It’s been three months now since my last PET scan, the scan that looks for how active my cancer is and tells me if I have any new spots. To recap: scan 1 showed only bone involvement and only in the spine area, scan 2 showed decreased activity of the bony metastases and some healed liver spots. So now to scan three. I could do a bunch of nice lead up to the scan talking about how I only ate eggs for a day and was forced to go 1.5 days without coffee, but I think you all would like me to cut to the chase. The scan showed that everything is stable. Good right?! I should be super excited, and I am happy. Just not super jump-around excitement. I was hoping for a decrease. I am confused by the liver spots. He made it clear after the first scan that staying only in the bones is a good prognostic indicator. But those little buggers sit there inactive not labeled as healed, just haunting me. My oncologist told me that they will call bone lesions healed, but not liver. It was unclear why, another confusion in the land of cancer. All in all, good news, and I will take it as that and push those pesky liver spots out of my mind.
I also got some blood results back. Last month my cancer markers were up a bit. He postulated that it could be due to the fact that I had to drop my Ibrance dosing down as my white blood cell count, specifically my absolute neutrophil count, dropped too low. I postulate that this may be due to my body coming off the steroids. Either way it went from a 70’s number to 88. This increase did make me worry that I was going to have an increase in cancer activity, but as I said the scan showed clearly it did not. The bloodwork showed that I had a slight lowering of the cancer marker to 84. So good? Again confusing. He is still unsure if my cancer marker means anything as it went from normal right before the surgery to sixty something after the surgery. Another confusion, keep taking data and wait for some sort of correlation I have decided to get all my bloodwork printed since the March diagnosis, and I will be inputting that into an excel spreadsheet to help myself track the data. What can I say? I love numbers.
I can pour over these numbers forever and think to what they mean for the future, but that really gets me nowhere. Cancer is all about recentering your thinking. So that’s where I need to be. Where am I now? How do I feel now? Today I slung my first bag of pellets. That’s forty pounds of I feel pretty darn good. Eight months after getting one and a half bones removed I can get a bag of pellets off the ground, into the house, and into the pellet stove! I call that pretty awesome. I can pick up my younger two children and carry them around. I did my first solo run after doing some training with my kiddos. That run took me 2 miles, no stopping! That’s not bad given that 6 months ago I was just getting the neck brace off and being cleared for driving. So if you want to know how I am doing? Imagine my running. Imagine my carrying bags of pellets. No matter what my scan says, the rest of me is doing pretty damn good. What’s next? Running a half marathon, and being able to pick up my next oldest kiddo: that’s 120lbs.
At the end of February 2018 I was diagnosed with Metastatic breast cancer. I went from sitting on a gymnastics bleacher watching one of my kids have a blast, to being in a neck brace in a hospital room talking about my surgery for the next day. All within 3 hours. Once I went into surgery it was kind of all over for me. My family was left in a waiting room for hours trying to process what just socked them in the gut. The baby of the family had metastatic cancer with an as of yet unknown prognosis. I was blissfully sleeping while they wondered how bad the bones of my neck had been eaten away by the cancer. How many layers would be fused? How would I be affected by the surgery? Would I have permanent damage to my spinal cord? I was gone for about 8 hours. That’s eight hours of constant worry and unknown after a night of basically no sleep. Who was that worse for? The one who was sleeping for what seemed like 5 minutes, or the family who had 8 hours of worry? Obviously the family.
Cancer is not one person’s diagnosis. It is a diagnosis for the close friends and family. They worry about every ache and pain. They worry about not making you worry. They worry about what if…? They care for you when you cannot care for yourself. Shoot after the surgery I had it fairly easy. I lay around for a few months while my family picked up all the slack. My in-laws watched the kids so my family could be at the hospital. My older kids helped cook. My mom cooked, cleaned, and drove us all everywhere! My husband cared for the kids and was a rock for everyone while he attempted to maneuver around everyone who was helping or wanted to help. Shoot the whole east mountain community came together to help support me! This is not a individual disease it is a community disease.
As you see the ads for wonder drugs that help happy cancer patients and you see the support breast cancer research signs, think of the families and friends impacted. Support the families and friends who are at the center of this disease. Give a hug. Lend a hand or a shoulder. Make sure they are taken care of too.
Here we are again…October 1st. The beginning of pink month, the month where we are bombarded with the color pink. These days there is so much pink that I feel overwhelmed by it. I personally have never liked pink. When I was a kid all it represented to me was the “girl” color, and I tended to be a kid that did not like to conform…just ask my mom. Then I gave birth to four girls…that means at least one of them was destined to love the color. It forced me to reexamine my feelings about pink and realize that having the freedom to like pink was one of the elements of feminism. It’s not just about being able to pick blue; it’s the freedom to choose your color. Then the hammer of cancer was dropped. I was truly bombarded with the color and all my pink ill will returned.
This year the onset of pink month makes me pensive. I frequently hear and see ads for breast cancer awareness. “Self exams every month!” “Get your mammogram!” “Catch it early!” People sometimes get irritated that the professional sports players are wearing that ugly color and could they just move on from this.
But what does the inundation of pink mean to me? It means that I am reminded that despite my ability to train with my kids for a 5K, despite my ability to carry my almost 10-year-old around the house, despite my ability to strength train, despite my ability to exercise up to 3 times a day, despite my ability to drive solo to Colorado and back, despite my ability to lift many heavy boxes at Ikea and pack them neatly in the car…I have metastatic breast cancer.
I am sure everyone is now thinking aren’t there more physical reminders than the color pink?…And yes, the massive neck surgery, the monthly shots in the butt, the daily meds, and the hair falling out are reminders as well. However, I live in denial. The reason for that is that I need to keep some normalcy for my kiddos who have grown up too fast with this disease. Part of the answer is that I refuse to let the pink keep me down. A lot of it is that life does not stop; it keeps plugging along, and as a mom I have kiddos that rely on me no matter what. Not just kiddos; but girls, girls who have me as their model. That is a boatload of responsibility, and I do not take it lightly.
So what do I do now in this pink month? I will let myself be enveloped in pink. I will let others dislike the color and still more be empowered by the color. I will tell my story so that friends think to do checks even though they are under 40. I will remind my friends to get mammograms if they are over forty. I will tell women to take time to take care of themselves. I have and will continue to force myself to open up, and let people see what metastatic disease can look like. I will let my raw wounds be revealed to the world. Don’t worry I won’t show you all my scars, unless you ask.