Pink Month, 2018

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1st day of pink month

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.

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Einstein Hair, don’t care?!

When I was in the 7th grade I went trick or treating for the first time. Using two cans of 80’s hair spray I proudly made myself look like Einstein. Nerd? Yes and still am. Now I wake up with Einstein hair.

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It can also be called homeschool Monday hair.

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I can brush it 25 times a day. As there is so little this only takes minutes a day. After about 5 minutes though it returns to its chaotic state. One might say that my hair has a good sense of entropy. The cause of this entropy is the Ibrance medication. It has made me lose a ton of hair and is doing weird stuff to what little hair is left. The texture, color, and thickness of my hair has all changed since April when I started the medication.

I have two teenage girls and two preteens. While momentary purposeful embarrassment can make for good parent fun I am not sure I want to fully embarrass them. Most kids don’t want their mom looking like Einstein. At the same time I want my girls to have good body positive feelings. If I cannot show them that I am comfortable with my body as is then what are they learning from me? Don’t get me wrong. I am fairly entertained by the various states of chaos of my hair, and I have a few friends that say my selfies are the best. Clearly I am not phased by the state of my hair as I am posting these pictures online for all the world to see. However, I do not want to embarrass my children when I pick them up from school or attend school events. So what do I do?  Do I put it under a hat all the time? Do I let it out free?

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Do I cut it and go for the Monchichi look?  Do I shave it all off and be bald and beautiful?

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I would love to hear comments and ideas so drop them down below!

 

Overconfident and Humbled

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I have been feeling great lately! In hindsight I have been feeling too great. About three weeks ago I began to do strength training again. I missed my guns! I wasn’t doing much and I was definitely going slow. Just 4 arm exercises with only 5 lb weights and 3 bodyweight leg exercises. Not much but I was feeling the life coming back to my muscles. My run/walks were becoming more running and a lot less walking. My husband and I had added nightly walks on the days that it wasn’t raining. I had gotten my run/walks to almost 3 miles of running with just about a quarter mile of walking interspersed throughout the run. After a weekend trip with 2 out of the three days driving and lots of housework I had a need to hit the trail. I was determined to get the full 3 miles of running no walks. I did it! My legs felt weak afterward, and a smidge wobbly. I assumed this was due to some dehydration from the run in the heat, and the fact that I had not done that distance in 4 months. The next day I continued my overambition and weed whacked the yard. It was then that I noticed that I had a vibration that ran down my back when I looked down at my feet.

The next day I did an easy run/walk to see if the wobbly legs would return. They did not, but the vibration when I looked down did return. I began resting as soon as I got home. After a walk and a night of sleep the vibration was slightly better. The next day I foolishly helped my dad move 3 dishwashers…I know! What was I thinking! And now I have been seriously resting since then. I was really concerned it was a sign that I had done something to make my fusion fail. Luckily, I only had to wait a week to see my surgeon.

That visit turned out to be great. The x-ray I had the day before showed that I did not have a failing fusion!!! Yay!!! He suspected that the vibration had nothing to do with my neck and was in fact a injury to my lower back. He said to watch it, and if it did not improve he would order an MRI of my lower back. As it had already shown signs of improving, I have great hopes for it. I really like my surgeon. He clearly really cares about my family and I. He said he missed seeing normal families like ours…I think that is the first time we have ever been called normal! I would not call us normal, but we do come together wonderfully in a crisis! I am very lucky for that. I will be resting and working my way back for the next month.

Now onto my other appointment, with my oncologist. I was able to get the results of my PET/CT scan. This was the scan that would tell me how my treatment was going and if the cancer was anywhere else…The scan was AWESOME!!! Tumors had shrunk or become less metabolically active indicating that the treatment was working. There were words on the report that said “healed”. Only good can come of that word! I had been having my white blood cell count drop with my oral chemo, Ibrance, and we had been moving my medication schedule around to find a sweet spot and it looks like we found that also. Three weeks on, 5 days of each week, and one week off. I feel like a giant weight has been lifted. I feel like I can make plans now. Which is good, because the start of school is here and there is a lot of planning involved in that! I hope you all have a great start of the school year or fall! I know I will, especially if I do not get too cocky again about how I feel!

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Bullet Journal Brain

Here is the long procrastinated blog post about how I use a bullet journal to keep track of my life. Perhaps the reason I am getting it done now is because I am procrastinating getting my homeschool planning done! The other truth is that despite the appearance of my house I am a bit of a perfectionist. I usually put off starting a project until I can get it done to my high specifications. Children of course have quelled some of this need for perfection but I still allow it to persist in some arenas. All procrastination, aside how do I manage to keep my chemo brain working toward all the things I need to do in a given day? Enter bullet journal. At the beginning of this year I was at my worst chemo brain. I could hardly remember to do anything. I forgot to get gas more than once and walked through the rain one day because of it. As the person who was always in charge of remembering where people put things, this was very difficult. I was desperate to find a way not to be embarrassed again for having to call for help and I definitely wanted to not come to the point of forgetting a child at an activity…which I had come very close to. As I was participating in a chemo brain study I was learning that writing things down on paper was proven to help. I latched on to this idea as I had tried more than one app with no success. I soon realized that there were a lot of pinterest ideas popping into my feed of something called a bullet journal. After some googling I discovered the originator was Ryder Carroll and his website bulletjournal.com gave me a good start. The beauty of this system is the adaptability of the system. I spent a few months changing things and I soon found that if I wrote things down in a weekly log, then again the night before and then looked over it repeatedly throughout the day I was remembering more!

I now use it together with my google calendar to keep my life in order. I put all appointments in the google calendar on my phone that way at the very least I do not forget to go to appointments. The kids also know that if it is not in the calendar it does not exist and I am not responsible for any missed activities due to it not being in the calendar. The google calendar allows us all to keep from double booking our family…well unless it is two different sports activities and we have to divide and conquer. At the end of each month, on a Sunday, I sit down with my google calendar and my bullet journal and transfer everything.

As you can see I am a fairly simple person. Number one, I do not have any artistic skills whatsoever, all those genes went to my brother. Number two, I also have a lot going on with 4 kids two of whom I homeschool, so I do not have much time for setting up all these layouts. I use a fairly simple system of each person in the family having a different color for their event/activities/appointments. Then I use one color for family activities such as visiting grandparents. This allows me to get a quick look at the chaotic needs of the month. This month is pretty benign as most fall activities have not started. I set goals for each month to keep me on task for my own activities. At the end of the month I will return to this page and see what I was able to achieve.

Once the month setup is done I move on to my weekly setup.

The setup I use can be adapted to whatever I am currently focusing on. The top row I use for re-writing appointments and top priority to-do’s such as blood draws. The second row is for the exercises(runs, arms, legs) I plan on doing each day. Clearly I am not exercising this week. I overdid last week so I am taking it easy this week. Still not 100%, but close enough that I trick myself then pay the price. The bottom row is where I do my meal planning. I do not keep my shopping list in my bullet journal, I rely on my phone for that. When I was working there was another row that I would write work to-do’s in. All that space at the bottom I have not figured out what to do with. During shopping weeks, if I can remember, I use this space to track my spending.

The next step is daily logs.

Here is my daily bread and butter. I write everything I need to do each day here. I carefully log the medications I need to take. If I don’t write down that I took them I have absolutely no memory of it so it is critical that I write it all down. I keep the color coding consistent through each log: monthly, weekly, and daily. I write down the smaller things that need done: phonecalls, small to-do’s, big to-do’s, ongoing tasks, holidays up under the date, and anything else I need to remember. By the time an appointment has made it to this page I am confident I will remember it and make it there as I am on my third time writing it. At the end of the day I try to use the remaining space to journal the day. I note things the kids have done, symptoms I have had, foods that did not work with my joints, and I try to end it with some gratitude notes. Keeps things collected and in perspective.

I use washi tape to mark pages I may need to flip back to. Purple glitter, given to me by my youngest, marks the month calendar so I can flip back to it each week or as events are added. I use gold to mark the start of my oral medication cycle. I have a blue one I use at the back of the journal for reference pages: family present idea page, exercise idea pages so I can mix up my workouts, song wish list, or anything else I may need to reference. As the days go on if I find I need to take notes for some reason I just put them on the next available page and list it in the contents at the beginning of the journal. Before doctor appointments I take a page to write questions so I don’t forget to ask anything. When we go on trips I make packing lists and to-do before the trip lists. Whenever I need to write something down I keep it in this journal that way I don’t lose pieces of paper and I always know when and where I need to be. It works really well. Now if I could write down everything I need before I head into the pantry I would not waste as much time standing in the pantry wondering what on earth I am doing there.

I enjoy the setting up of the journal every morning. My mathematical mind revels in the perfectly made lines. My realistic mind lets the mistakes slide, after all I am not perfect why should my journal say otherwise. When I was on steroids and had insomnia I would easily get up early pour a cup of coffee, get my breakfast potatoes started and sit down with my journal to set up the day. I felt so organized and peaceful. By the time the kids got up I felt ready for the day. I am naturally not a morning person so this was all new to me and I enjoyed it. So now that I am off the steroids and back to not being a morning person, I am desperately trying to get my butt up early enough to reclaim these moments of peace. I guess I should have added that to my monthly goals. I better get to bed so I can make another go of getting up early!

Chipmunk face but no neck brace!

I have been delinquent in my updates, and I apologize. It has been a busy couple of weeks. I finished my radiation on the 17th of April. I did not notice really any side effects until the last two days. Then I started to have a sore throat, especially when I ate. It was not a horrible sore throat; it felt like a bad allergy throat. That sore throat lasted up until this past Thursday. At that time I realized that what I thought was surgery related swallowing issues was partly radiation-related swallowing issues. As my throat improved so did some of my swallowing issues. I was very happy to have my early afternoons back, as during I had to get into town everyday at the same time and then as it was so early that I was usually killing some time until I picked up my oldest. When I say picked up, I mean I rode with my lovely driver, my mommy usually, to go pickup since I had a neck brace on that prevented me from driving.

    That week I also traveled with my family team (my husband, mom, and brother) to Philadelphia to a metastatic breast cancer conference. It was an intense three days. We learned more about what I might be facing and how other people have dealt with various issues. The main takeaways were that everyone is different, that treatments have come really far, and there are a lot of good treatments in the pipeline. There was so much information, and we have been so busy since we got back I don’t think I have had time to process all the information. In fact, as I was writing this I was thinking it was two weeks ago, when in fact it was only one week ago.

    I got a call last week informing me my follow-up with the surgeon was moved from April 30th to May 2nd. It may not seem like that big a deal but when you are sitting around unable to take any of your four kids anywhere without asking for help it gets old really quickly. I convinced the nurses that I could get my x-ray earlier than the appointment day, and I went right out and got it. This weekend my dedicated doctor called and said the x-ray looked good, and I could remove the brace unless I was doing something adventurous. The levels of elation as I got behind the wheel for the first time!!! My husband rode with me to be sure that I was actually comfortable and could manage it. It was glorious. I have been driving for a few days now, and it is so nice to just leave when I want! By the time I was able to see the doc on the 2nd I had been loving driving for a few days, and I had found that my neck would get a little sore just from being used after two months of not being used. The surgeon was not there but I did see the PA who cleared me for all exercise as long as I start slowly. They even said I could start easing into running as long as I wear my brace while I run. So I am off to the races!! Just very slowly and with a brace.

As I my picture suggests I am still on steroids which is causing the chipmunk cheeks. I have been working with my oncologist to wean myself off those, and hopefully, I will be off them soon. I am down to one every other day and getting a horrible headache on the off days which I will have to discuss with my doctor. I am doing great in terms of my other medications, and I have a lot fewer side effects than they expected, which is awesome for me! I have been increasing my protein intake which has been helping my overall energy level, and I have been taking some walks around the neighborhood which helps not only my muscles but also my mood. I love living in the mountains, and I feel so much better when I can get out and enjoy them!

I am still planning on doing an organization post as some people were interested in seeing how I wrap my head around all the kids’ activities and my medical stuff with my chemo brain. So that will be coming hopefully soon. I hope you all have a chance to go outside and enjoy some nature today!


Steps and pills will help my bones

Yesterday was radiation day 5! That means I am more than halfway there, I only have four more to go! That is kind of cool and exciting. I will be glad to have the daily early afternoon back. Going in at 2:40 everyday does not seem that bad unless you are also trying to homeschool three kids and get a ride from someone. The radiation has been fairly painless. I did notice some soreness in the back of my neck starting Friday after radiation and also Tuesday. I think it was the muscles reacting a little to the radiation around them and also those are both gymnastics days where I get to watch my youngest while I sit on some very flexible bleachers that let me feel every step of every person. So that may have had something to do with the soreness. Watching soccer from the car does not seem to bother my neck as much. The other symptom from the radiation seems to be fatigue. On the other hand that is also a symptom of the new medication, Ibrance, that I started taking on Sunday. Not sure if I am getting fatigue from both or just from the Ibrance. I am guessing both. I was worried that since the pill was larger, almost as large as the calcium that I cannot swallow, that I would not be able to swallow it. This would have been a problem because it is a capsule and cannot be opened or crushed like the calcium. Fortunately, the pill is a soft shell and it seems to go right down as long as I take it in the morning.

My surgeon had told me I could take my brace off during the night as my neck is supported by my pillow. I find if I leave my brace off most of the night that when I wake up in the morning I have less swallowing issues and my tongue and face feel like they have a little more sensation. I am hopeful that this bodes well for when I get the brace off at the end of the month, and that I will start to see a lot more improvement in my tongue sensation and my face control. Right now I have a hard time getting my lower right lip out of the way of the food I am biting. But I was talking about swallowing my new pill. The night off from constriction of the brace gives me better mouth and swallowing control so I have been able to get that pill down. On Sunday and Monday I definitely noticed fatigue in the afternoons. I have read that this can improve, but given that I am doing radiation simultaneously, I will not really know until after the radiation ends.

The fatigue is definitely manageable right now. I just keep the homeschooling light, just a few subjects a day. Then I try to rest in the morning on days when I know we have a lot going on in the afternoons. In fact yesterday we had a lot going on in the afternoon so I picked fun self sufficient activities for the kids that did not even require me at all. Then I sat in the recliner and rested. They felt good, and I felt good going into the afternoon. Tuesday we had some heightened emotions in the family which is to be expected in a situation like this especially when you throw in that my husband has a cast on his arm from his surgery. This is another reason we took it light yesterday. I had some chats with the kids about their emotions and then their art was play dough which is great for all of their sensory issues and definitely helps to bring them back to center. I think my plan may have actually worked, and everyone was great last night.

On the exercise front I have been working at meeting my watch step goals. If I meet them they go up for the next day. This week I have done pretty well, getting 3 out of the 5 days. I was able to get in a 1.5 mi walk to the mailbox this week. I need to do more of those, but with the radiation and the homeschooling It is hard to fit it in. Today I tried just doing some step ups while I waited for my coffee to brew. That was harder than I anticipated it being. Which means I should do more of those. I should try adding squats too, because when I am putting dishes away I still have a hard time getting back up and have to grab the counter. I always say the more you do the more you can do. So time to get moving on the days when I can’t get out and go for a walk!

I had a phone call from an old college friend yesterday, and she asked how I keep track of everything that the family does on a daily basis. I would love to blog about stuff that does not have to do with cancer, too. So you let me all know if you would be interested in my bullet journal/digital system that helps my chemo brain keep track of our crazy family life. Post a comment on facebook or here at the blog with your opinion.

Shots Ahoy!

Let the treatment begin! I got the first set of shots yesterday. In all the confusion to get the insurance approval for all the medications the doc’s office did not call me to actually talk to me about the side effects and everything I was getting into with the shots. Going into the appointment I was a little nervous. I met with my doctor first and he proceeded to tell me all my bloodwork looked good. I had one rogue cancer marker that was high and did not make sense to him, so we will have to wait for the next set of bloodwork to see if that will go back to normal or stay weird. It was normal before surgery and then high after surgery. Which he found to be unusual. I do unusually well, so he just rolls with it. Aside from that, my body seems to be starting off well and ready for what’s coming. As he was in the middle of his exam a nurse popped in and whisked me away for the shots. Apparently, the chemo nurse who gives the shots needed to go home and was waiting on me. As I came into the chemo room they assumed that one of the nurses had called me and talked to me about the side effects and what was involved. I was able inform them that I had no idea what was coming. So, she handed me a stack of info to read later and told me that what I thought was two shots was actually going to be three. Two of the shots would be given at the same time because they can be painful. The rational is that it is best to just get it all over with at once. Those two shots were the faslodex which is the anti-estrogen receptor medication. This medication targets the estrogen receptors on the breast cancer cells and tries to destroy them, so that any estrogen cannot bind to the cancer cells and help them grow. They told me the side effects could be shot pain or nothing, but to read the info packet. The two shots would be in the butt. The third shot would be given in the belly as recommended by another tech in the room who also gets the same shot. This shot is Xgeva. This is a monoclonal antibody that helps build and repair the bones. This one could cause bone pain or be nothing. The tech who got the shot told me she had no side effects, but she did recommend they inject slowly as otherwise it could cause a significant bruise.

Then I got the two shots. Nothing is more comforting, as you get a shot, then the nurses telling you that they have to regrip the syringe with two hands to force the liquid out into you. Then comment about how thick the liquid is. Oh yeah, patient, you might want to take deep breaths while we do this. Nothing to do but breathe deep, suck it up and go with the slow flow. It was not too bad, but also not great. Then they switched to the belly shot. This one did not seem as intimidating as I used to have to give myself a shot in the belly during chemo in 2012. It was injected slowly and as I have a bit of a steroid belly, it did not hurt at all.

I have been on the phone with various people today as I am still waiting to find out where my last medication is. The shot nurses were surprised I did not have my pills yet. They said people usually get them over-nighted, and I have been waiting for at least a week. So the goal for today is to find where those pills are. So much back and forth! After about 10 different phone calls I realized the nurse at my oncologist’s office dropped the ball and then dropped it again. I was finally able to remedy the situation, and it looks like I will be able to get my last medication by the end of the week. They informed me that I should get a call today or tomorrow in order to set up an overnight delivery for my medication! Super frustrating to have to do all this but at least it is done now. That means that all my communications that happened with friends and family after the 10 phone calls were very confusing because I had used up my brain power and patience getting the medications on track!

Since then I have been feeling really well. The pair of shots have left me a bit sore, so comfy pants are on order today. I may be a little more tired than usual but not significantly. I did feel some slight soreness in my back, but that seems to have passed. I call this a major win. I have meds working on kicking cancer’s and my butt, yet so far, no significant side effects!