I AM

I feel like the last few weeks of my life have been incredibly full and jammed packed. Too much is happening all at the same time. It always happens that way, doesn’t it? I haven’t been able to write a new post for today. Instead, I’m posting a poem I wrote about two months after I was diagnosed in 2012. It still rings true for me. It’s still my voice, my heart, and who I am.

In the original version, the font gradually gets larger and larger as the poem continues. I can’t do that the way I want on WordPress.  If read aloud, my voice gets louder and louder in a slow crescendo. That doesn’t work in this format either. Just sayin’.

If I had to add anything new my writing, I would include that I am a badass.

         I AM

I am not cancer.

I am not my hair.

I am not chemo, surgery, or radiation.

I am not my breasts.

I am not a project.

I am not defeatable.

I am not stoppable.

 

I am AMAZING.

I am NURTURING.

I am SUPPORTIVE.

I am SMART.

I am CLEVER.

I am DETERMINED.

I am POWERFUL.

I am a WINNER.

I am BEAUTIFUL.

I am LOVELY.

I am SEXY.

I am FUNNY.  (Just not at the same time as being sexy. 🤪)

I am FAITHFUL.

I am SPIRITUAL.

I am THOUGHTFUL.

I am UNIQUE.

I am CREATIVE.

I am ORIGINAL.

I am WISE.

I am FUN.

I am SWEET.

I am POSITIVE.

I am UPBEAT.

I am a DAUGHTER.

I am a SISTER.

I am a FRIEND.

I am a TEACHER.

I am a LEARNER.

 

I AM TOUGH.

I AM STRONG.

I AM A FORCE.

I AM A SURVIVOR.

I AM JOY.

I AM LIGHT.

I AM PEACE.

I AM KIND.

I AM LOVED.

I AM GRATEFUL.

I AM BLESSED.

I AM IN LOVE WITH LIFE.

 

Fulvestrant and Frustration

Fulvestrant (also known as Faslodex) is a treatment for estrogen positive metastatic breast cancer. It is usually given in conjunction with another drug used to treat MBC. It is received monthly through two injections into the muscle of each hip.

One notorious side effect is muscle soreness at the injection site that can last for several days. I worried about this one a lot. What I had read online painted a painful picture. The first injection cycle was a piece of cake. I wondered what all the fuss was about. I was thankful to have dodged pain.

I found out what all the fuss was about the following month when I had the next set of injections. I was still new to receiving these shots and was waffling back and forth between a clinic and hospital setting. This set was given at the hospital. I didn’t take the weight off the side getting injected. No one reminded me. I was in pain immediately. Pain radiated from my hips all the way down my legs. I spoke up but don’t remember getting much of a response. I felt sore afterward for up to a week. I was sent on my way with no reminders for aftercare.

There was plenty of anxiety around the injections that followed. When my original oncologist left the clinic and I completely switched all of my care to the hospital, I had an excellent nurse who was an expert on administering fulvestrant. Unfortunately, she has since moved on. I remember I learned a lot when she trained someone one day I received my shots. These are the tips I learned:

Tip #1 Take all the weight off the leg on the side receiving the injection. I knew this from previous instructions.

Tip #2 Stay active. Try to keep moving on the day they are given. Walk before or after. I had already been told that walking seemed to help.

Tip #3 Massage the area after injecting for a minute. It helps move the drug. It makes the injection site less sore.

Tip #4 There were also stretches very similar to a pigeon pose in yoga to help open up the hip area. Again the goal was to prevent soreness the next day. I do these every time.

I must be forgetting some, which sure would explain why side effects have flared up. Please add any additional tips by responding at the end of the post.

The last time I received my injections, a different nurse was training another nurse.

No mention of the massage.

No mention of the stretches.

I had to take over with those instructions. It frustrated me that I had to do some of the teaching. I apologize I don’t remember the nurse who was leading the training. I had not seen her before and she was in and out in a flash. She didn’t know me. However, I felt a sense of responsibility to share tips on what was useful for the patient, the one receiving the injections, because the patient carries home with them whatever side effects result from the treatment that show up that evening or the next day and stick around a day or so. It seemed like that was news to them. I hope they carry what I shared forward to other patients like me. We are more than a stunning pair of hip muscle areas.

I know my outlook is somewhat affected by what I’m calling pandemic brain. This may be a separate post. Pandemic brain is kind of like chemo brain in that thinking is affected by what is happening. Living a quarantined life is getting to me. It’s been ten weeks  . . . and three days.  I’m touchy and easily irritated by fools who are living in a world where they are the only one who matters. Nurses are taking huge risks daily as they are in close contact with those in their care. I am not directing my displeasure at them. Like I said, I’m frustrated, and some of that frustration flows over when I feel like I have to do something I ought not have to do. In this case, that means offering what I feel is information that should be standard care when training someone how to administer fulvestrant. I got the feeling my guidance was received as annoying interference.

Too bad.

I will continue to be assertive (not annoying) where my body is concerned.

It’s true that nurses must train one another about how to administer the injections correctly. I don’t have a problem with that practice. I feel their primary focus is to make sure proper procedure is followed.  Minimizing patient discomfort at the time of the shots seems to be second. This is a part of following proper procedure in my mind. The two are very much connected. A far distant third seemed to be how I felt the next day or days after. It had an “out of sight – out of mind” vibe. All three matter like the sides of an equilateral triangle. Focus fully on training the nurse and administering the injection. Next, focus completely on the patient while receiving treatment. Finally, put all of the attention on aftercare so the patient continues to feel comfortable at home.

The last few times there has been more inflammation and soreness at the injection site. I am tired of my thighs and hips being inflamed and sore. I think a different area of my hip needs to be abused. I’m sorry, I meant used.

Side effects have lately made me feel medically battered. There is always something to manage. It has become routine and most of the time not a huge deal. I wait for times when I can experience my treatments and medications with zero negative effects. I feel like I’m asking for too much.

Am I?

Homestretch

In two weeks, I will celebrate my 50th birthday.

I was 41 years old, close to 42, when I was diagnosed with metastatic breast cancer. I grieved many losses. I still grieve because loss is ongoing. The odds weren’t in my favor I’d see my 50th birthday. I am going to see it.

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I’m looking older but hopefully wiser.

After I celebrated my 49th birthday, I turned my attention to a seed of an idea I took from a fellow survivor. Alicia Neubauer raised over $40,000 for metastatic breast cancer research for UW Carbone to celebrate her 40th birthday. What an impressive accomplishment! Could I do the same and raise $50,000 for my 50th birthday? I sure could try.

I met Alicia two years ago at a banquet for UW Carbone donors. She had driven up from Rockford, Illinois. At the time, she was finished with active treatment and wasn’t diagnosed with MBC.

That changed.

Alicia died in early April.

I didn’t know her well. She was kind and giving. We spoke on the phone where she shared some fundraising tips about what worked well from her experience and some ways to publicize what I wanted to do. We stayed connected and exchanged messages on Instagram.

Even though I didn’t know her well, it makes me feel profoundly sad that she is gone. It happens too often when I hear news of another grandmother, mother, daughter, sister, or friend that has been lost in the cancer community. Someone else I was just getting to know died from MBC last September. A daughter-in-law of a family friend died last week from lung cancer that had spread quickly. Men aren’t to be excluded either. Cancer isn’t picky and doesn’t discriminate. It is very cruel and unfair.

I’ve lost close family members due to cancer. So have my friends. Grief is a powerful bond but watching friends mourn reminds me that grief is a deep well of sadness. There is always room for more.

The need for research is needed more than ever. Funding research is also like a well that never fills. More is always needed.

Raising money has been a driving force in my life over the past year. There have been news stories. Fundraisers have been held around jack-o-lanterns, yoga, kettlebells, Ukrainian eggs, photography, and Pampered Chef products. Local businesses have been involved in the community. Events have been promoted via community bulletin boards. I’ve learned how to use social media. I’ve put aside introverted qualities to advocate for something much bigger than myself. Letters have been written soliciting end of year donations. I’ve sent hundreds of thank you letters that I’ve shed tears while writing because I’m so moved by the support I’ve been given.

I’ve even trained for a ridiculous 5K that has been canceled because of COVID-19. I’ll do it in my neighborhood on my own terms because that’s how I roll.

All events give more exposure to the need for more research. All treatments available today started as research. Research equals hope. Research works.

People have been incredibly generous and supportive. It means a lot to me to have support in my effort to raise money for metastatic breast cancer research at UW Carbone. Each donation makes an impact.

I’m delighted to share I’ve broken the $40,000 mark and am in the homestretch.

And so, I’ll ask.

There are many reputable charities that do much needed work. Everyone has a cause that is near and dear to their heart. Now is a time when incomes may be significantly lower. People may not be able to support charitable giving. I understand.

It’s projected that 116 people per day would die from metastatic breast cancer in the U.S. in 2019. I don’t know what the projected number is for 2020. Due to COVID-19 and an effort to limit exposure, diagnostic tests such a mammograms and some scans to access growth have been canceled or delayed. I have heard of some treatments being paused, or trials not accepting new applicants. Those of us with MBC are quietly hunkering down and trying to stay safe until the pandemic is over. It’s harder for us. I’ve been quiet . . . but I have to start speaking loudly again. I will not accept negative effects to my health as some kind of collateral damage from this virus. I want to live. We all want to see the other side of this and come out of it alive and not damaged from any treatment breaks caused by COVID-19.

Cancer doesn’t wait for curves to flatten or quarantines to end.

100% of donations from my fundraising page go to metastatic breast cancer research at UW Carbone. Research will help many. Click here to donate and read more about what I’ve worked on over the last year. Click here if interested in a video about work done at the Carbone Cancer Center.

I remember when my fundraising page went up last August. I made an initial donation that showed up as a small red dot on the fundraising thermometer. The rest was all white and I wondered if it would ever become redder. Slowly, bit by bit, it grew. It was very satisfying to watch it grow as person after person pitched in to support more research. Every little bit truly helps. It adds up. Now is the time to make that thermometer turn all red. I am grateful for all donations. I appreciate your consideration and support.

My birthday will be a lot different than I had planned this year. Pandemics alter plans. My 50th birthday arguably will be smaller, possibly a party of one. There will be cake. It will still be special as I remember everyone who has supported more research and my goal. I’ve celebrated with every donation made to my page. Every event has been part of my year-long party. I’m only going to turn 50 once, so I will make the most of all the goodness I have.

I will find a way to celebrate.

Always.

Face Fear

What I’ve learned about fear over and over again is that the anxious anticipation of something is always worse than the event itself. There have been conversations I have dreaded and events I was sure would result in my getting the short end of the stick. The events happened and life went on.

One of these events was returning to chemotherapy back in the summer of 2016. I wanted to avoid this option like I want to avoid a bad cold, negative people, and raw seafood. It was my second experience with chemo – an unwanted sequel to that of years earlier. Eribulin was the name of the chemotherapy drug to be used. It is a cell cycle specific drug that attacks something called the microtube structures within cells. These microtube structures help a cell divide and reproduce. Stopping the microtube structures from functioning results in cell death. Goodbye cancer cells. Normal cells grow back.

I was terrified of effects like I had had when I had chemo back in 2012. I threw up so much after the first infusion back then that I needed to go to the hospital for fluids. I contracted fungal pneumonia and the shingles a couple of months later that landed me in the hospital. I gained a lot of weight due to steroids to battle nausea. I was lethargic and my mind was in a fog for months after the treatments ended. I knew what going through chemo was like and it was something I really didn’t want to repeat.

But it was my best option.

The day came to receive the first dose of eribulin on July 26, 2016. No throwing up, no nausea, no lethargy, no weight gain. I lost my hair again and was without it for over three years because of this drug and the drugs that followed. That reality and my feelings associated with it were difficult to navigate again. Otherwise, I felt unbelievably good. I had energy and could focus on activities that I enjoyed.

The weirdest thing happened once I faced my fears of having chemotherapy again and started treatment. Without the fear, profound moments of immense peace, joy, and intention took hold of me. The depression I had struggled with lifted when I went off the oral chemo pills I had been taking. I wasn’t teaching at his point in time, but I didn’t feel depressed. In fact, eribulin was a new lease on life. Every day off work was a day closer to coming back. I didn’t realize at the time it was the end of my career. My feet didn’t hurt with every step. I could walk again. I could hike.

Fear is almost always worse than the event itself. The fear I held about doing more traditional treatment again was worse than the reality. The eribulin wasn’t difficult to receive or tolerate. It was pushed through a syringe over two to five minutes. I didn’t feel a debilitating loss of energy and almost no nausea. For the first couple of months, I found I actually had lots of energy and felt wonderfully healthy (aside from needing chemotherapy in the first place). Low white blood counts were an issue, but that was a common problem encountered with many cancer treatments.

There are new fears. It’s a repetitive cycle every time I start a new treatment. What side effects will I experience? Will this treatment work? Lots of “what ifs.”

I have a lot of fears of treatments not working.

Fears of not having options.

Fears of my team not caring enough.

Fears of getting worse and losing my independence.

Fears of lots of things that make me cry and those thoughts make me feel unsafe and very alone.

And then there are the fears that my lovely hairstyle will always look like I’ve electrocuted myself. It has calmed somewhat over time. That one makes me smile and brings me back to where things are okay. My curls remind me I have no control and the straight and narrow never was my path. I’m unruly like the clouds in the sky. My hair feels comforting.

I face fear every day as someone living with metastatic breast cancer. The fear of having MBC has become so commonplace that I know it’s there, but I try not to think about it and I give it the least amount of space possible if I have to think about it at all. I face it down and get on with my day. I face fear like I face the mirror in the morning. Some days it takes more work.

Every so often I sit with it. We talk. Mostly I feel. Then I’m done. Until it resurfaces.

Fear has been on my mind more than usual lately. There are more unknowns. My biggest fears revolve around cruel consequences if my treatment is affected because of COVID-19. These unknowns could severely impact my other unknowns. I’ve hunkered down as much as I can and it still might not be enough. I began this post writing that the anticipation of an event is worse than the event itself. This virus may be the one scenario where that isn’t true. I don’t know. It will continue to play out over time where one domino affects another, even if the dominoes at first seem unrelated. Facing fear does not mean to act willfully stupid. It doesn’t mean you roll the dice and take your chances. Facing fear means being informed and having a plan. Right now that plan involves choosing the most protective option in all my decisions. I will continue to face the fear in my life by making smart, well thought out decisions. I will be grateful in my belief I am staying safe. I must believe hope is more pwerful than fear. And it is.

My Most Protective Option

Choosing my most protective option has lately become a repeated refrain for me. I find myself comparing choices as I deal with a smaller world for myself and what I am able to do with limited options available to me.

In a school setting, teachers always followed the principle of providing the least restrictive environment for students with special needs. I came back to that idea time after time in work with special education teachers and instruction for students. I want the same type of tried and true standard for the circumstances I now find myself in as I shelter at home. The least restrictive environment would do nothing for me. Heck, the least restrictive environment would place me out and about without a mask in large crowds with strangers. What I needed was the exact opposite of the least restrictive environment. The most protective option fit perfectly. It fits every decision I’ve needed to make so far.

Medical

Being in the same room with my oncologist is preferred. I have been open to visits over the phone and video style because it mainly seems I have little choice. I could hopefully see her if I needed some type of physical interaction. If I’m choosing the most protective option, I must go with a remote visit. I may feel differently after a few months. Telephone and video have limitations. Eventually, the most protective option may be to see her in person as it may yield results that you can’t get without contact. Meeting face to face could eventually be more protective as circumstances vary.

My treatments have continued as scheduled. An army of gatekeepers and temperature takers await me at the uncrowded hospital entrance. Hallways are unnaturally empty. No one waits in waiting rooms and people are sent to their treatment bays immediately. I wait there alone. The nursing staff is cheerful even though they wear masks and protective face shields. I was not happy with the answers I received about how many days (yes, days) they were asked to wear the same surgical mask before getting a new one. That is most definitely not the most protective option for them even with a face shield. Protecting myself involves that those I have contact with are also protected. I do not want to be overly critical. I do want everyone to stay safe. I’ll follow up with a few more questions at my next visit.

Groceries

Getting groceries has evolved into quite a process. March 13th is the date I started social distancing and staying at home. Wisconsin’s Safer at Home order took effect on March 25th.  I could still shop during the first hour of business assigned as a courtesy time for the elderly and those with underlying conditions if that was my only option. It would still put me in a public setting. My other options are delivery or curbside pickup. I haven’t been able to nab a delivery time. Instead, I focus on getting a curbside pickup timeslot every two weeks. Slots open up online one week in advance at midnight. They are gone within minutes. I am sleeping and hopefully lost to my dreams at midnight, except when I need to reserve a grocery time. One night after I reserved a spot, I noticed all the available times were gone within ten minutes. It has gotten even more competitive since then. Last week they vanished within three minutes. Three! I am not sure exactly how many are offered each day, but the demand is much higher than the supply. I am thankful I got one and that for now I have figured out what I need to do in order to get what I need. Things change quickly. I just learned the window opens up at 1 PM rather than midnight. Time will tell if that switch makes ordering even more competitive.

I admit it also makes me sad that grocery shopping strikes me as a cut-throat world. My oncologist advised me to take this route as a way to keep myself and others I may come in contact with (like her) healthy. This is something I can do for me and for her. I feel some guilt in taking a spot that is in such high demand. I can stretch items and plan menus so I am more than comfortable shopping every two weeks rather than shop every week. At the same time, I need this service as much as someone else, so I must do what keeps me safest. It’s my most protective option. I will choose it every time.

Reserving a time involves multiple steps. Getting the groceries into my home adds several more. Items come out of boxes (cereal, protein bars, yogurt) so I don’t need to bring boxes into my home. Plastic items get wiped down with Clorox. Blueberries, blackberries, and other small fruit are taken out of their plastic containers and put into glass containers. I dunk foods in soapy water and rinse them. There is a sanitized and not sanitized half of my counter as I unload items. My groceries have never been cleaner. It’s exhausting and insane. Right now, it’s what I do thanks to a viral YouTube video.

Hair

When my hair grew back in 2013, I was done with coloring it. It could be natural. I was firm about it. I had to staunchly defend my choice to one or two who couldn’t understand it even though it had nothing to do with them. There’s always a critic. My hair was beautiful. A silver curl framed my face in a striking spiral. When it grew back in 2019, it was a lot grayer than before. I felt so old and felt I looked washed out. My wig was a much younger look and I liked what it did for me. I chose to get on board with coloring again and that was that. I certainly never thought a situation would unfold that would prevent me from getting my hair done. I have hair. I have quite a lot of hair. It is ironic that I can’t get it done or go anywhere. Who knows where I’ll be on the cancer road when stay at home lifestyles finally are no longer necessary.

I took matters into my own hands and colored my hair on my own. I ordered some that was free of parabens, sulfates, phthalates, and ammonia. It didn’t sound like it was too hard. The directions were straight forward enough. The company had videos to watch. What could go wrong? The only places I go are to my oncology appointments and to pick up my grocery order. No one sees me so now was as good of a time as ever to try something new. Chalk it up to a massive need to feel in control, but there is a bit more to it. I wanted to feel good about my appearance. Perhaps that sounds vain. Having hair that looks decent goes a long way for this metastatic breast cancer patient who wore a wig for three years. I want to keep my hair and I want it to look good, even if no one sees me. I see me.

Inconveniences vs. Problems

Rabbi Steve Leder appeared on TODAY with Hoda & Jenna earlier in April. He offered excellent advice on perspective and encouraged people to distinguish between inconveniences and problems. Not being able to go to a restaurant is an inconvenience. Having bad hair truly is an inconvenience. It sucks but it doesn’t make it less true. Not being able to breathe and needing a ventilator is a problem. Not having any food or a means of getting food is a problem. I need to remind myself that what I am experiencing personally through this so far have been inconveniences. I may shed a few tears as a way to deal with my feelings, but my issues remain identified as inconveniences, not problems. You can listen to the brief interview here.

Choosing my most protective options will continue to guide me in the days ahead. It offers a solid way for me to evaluate choices and make consistent decisions. It removes my feelings and provides me an objective format. Hopefully, it will make tougher decisions much easier because the safe choice is usually an obvious choice.

It won’t help me figure out if I should bake chocolate chip cookies or brownies. This isn’t an inconvenience or problem. Neither option is more protective than the other. Perhaps my litmus test doesn’t hold up in this situation.

Luckily, I know what I must do.

Making A Run For It

I am not a runner.

The only thing about me that runs is my nose as a side effect from treatment.

I hated running in high school. Every step of the yearly running test was agony. It made me feel like I wasn’t good enough because I never did well and always walked some.

At the end of 2019, I saw a comment from one of my friends who works at the UW Foundation who has been a main support to me as I’ve worked to raise more funds for metastatic breast cancer research. She had written a supportive comment on someone else’s post promoting a 5K race for UW Carbone.

The race is on May 30th.

My birthday is on May 30th. My 50th birthday.

Uh-oh.

Thoughts are faster than any runner. I knew in a flash what was happening. My thoughts are italicized.

 Don’t even think about it.

 You are not a runner.

 Don’t be ridiculous.

You don’t enjoy running.

You can’t do this. You have metastatic breast cancer. 

You have never run a 5K.

You haven’t even tried.

Because it’s insane.

You’re insane.

But you’ve seen this information and you can’t un-see it.

 The idea is already there that it would be an awesome way to greet your 50th birthday in victory. It sure would show cancer a thing or two.

It also would be a miracle, but you’re a lot stronger than you were last year. 

You know what happens once an idea has already rooted. 

It grows. 

Dammit.

You’ve envisioned crossing the finish line.

You’re apparently doing this. Keep it to yourself so others don’t think you’re unrealistic, too ambitious, or crazy.

What’s wrong with you?

I started doing some research on 5K training schedules. I learned most schedules intersperse running and walking and eventually phase out the walking. I would manage by building my abilities slowly.

On days that I didn’t strength train or walk outdoors, I worked on my running plan, slowly building endurance and running stamina and keeping the embers to do this burning inside me.

I also started working with a running coach. Get this – it turns out I already had a perfect gait from my gait analysis and good rhythmic breathing. Who knew?

I might be a runner.

My mind throws obstacles in my way. It’s really good at that. A sliver of doubt that sneaks in has more weight than all my positive affirmations, mantras, and visualizations. It shakes my goals. I struggled at home on my treadmill in extending my running minutes and lessening my walking recovery minutes. Breathing was harder to manage. The fun phase was over. I realized all the hard work that lay ahead.

Ah-ha! I knew it wouldn’t last. It would be best to give up and enjoy something easier.

 No, it wouldn’t. Stick with this and figure it out.

Be stubborn. Rely on that irrefutable strength. Being stubborn is more important than your physical capabilities right now.

 I am in this for the long haul.

It’s time for another session with your running coach.

More physical obstacles showed themselves. I broke out in a rash fairly early on in my efforts training on my own that kept coming back every time I ran and got so hot. It was exercised induced. My body eventually accepted what I was doing to it.

Take that body. I won.  

I officially registered for the Race for Research at the end of January and formed Team 50. My heart felt choosing Team Pokey for a name was a better fit, but I wanted to keep messaging consistent with messaging from other fundraising goals.

My running coach wrote out plans for me. I worked on interval training mixed with strength work. I would vary the speed and incline, hop off the treadmill and do some lifting drills that runners do, and then repeat for 5 times. I was amazed at what I could do.

I practiced progression runs of varying paces and runs with varying inclines. I could do them. It was a challenge, but I could do them. It made me feel accomplished and athletic. Feeling athletic in the midst of metastatic breast cancer is not me. Feeling athletic was never me.

Except athletic has become me over the span of six months.

Okay, semi-athletic. Keep it real.

I worked on treadmill progressive runs, inclined runs, surge runs, and made it outdoors a couple of times. I was hitting a 5K fairly easily on my treadmill. Then COVID-19 hit. One by one, my plans disappeared. The Race for Research is the last event standing and I suspect it will either become a virtual run or be rescheduled for fall. Gathering cancer survivors, those being treated for cancer, as well as their supporters together at a crowded event, even if it’s outside, doesn’t align with physical distancing. The UW Carbone Cancer Center will make the choice it needs to make.

It will be a major disappointment, albeit necessary.

It is a miracle I’ve even endeavored to run. I experienced hand-foot syndrome several years back which made walking extremely painful. Neuropathy has been present at some level since my original chemotherapy. I ignore it. I’ve worked really hard to get to where I am.

If COVID-19 sidelines the race, it will not sideline me. I have mapped out a 5K loop in my neighborhood and will run it on my birthday. I’ll invite a few friends to come cheer me on at various points along my route (all six feet apart – more like six blocks apart). COVID-19 will not take it away from me. It may take away my VIP status and prevent me from speaking at the race about the deep hope I have for research at UW Carbone, but it won’t take away what I’ve been working for, sweating for, and fighting for since December. It can’t take away the hope I am always striving to give others.

No way.

If you know me, you know I will find a way to get this to happen and make the best of it.

I’d love to say I’ll do it rain or shine, but if it’s rainy I’ll postpone my moment in the sun for a time when it truly will be a moment in the sun. I’m stubborn but not completely crazy.

I have been unknowingly making a run for it for many years.

I have been a runner all that time.

I won’t stop running.

I am a runner.

Watch me.

 

April 16, 2020 update: The Race for Research has been canceled. It will return on June 5, 2021. Onward to Plan B for me.

What Coronavirus Means to Me

I never thought I’d see a pandemic happen. It’s 2020. We live in a world where medicine, technology, and people working together are supposed to prevent something like this from happening, certainly from spreading.

But here we are.

I also thought I wouldn’t write about this topic. But it is everywhere I go – or don’t go to reflect life more realistically.

News changes rapidly. I wrote this post on a Friday to post on Sunday at its usual time. I hate to wonder what might change in the interim.

I have a much higher chance of dying from coronavirus than a healthy individual should I get it – a 79% chance to be exact – because of cancer. I would be one of the ones not given a ventilator if I needed one and there is a shortage because of others who would have a stronger chance of surviving. A ventilator shortage is something I don’t want to think about for anyone.

I am one of many. I know people who have respiratory issues, diabetes, heart conditions, and others with cancer. I have friends who are worried about their children with health conditions. I know this affects more than just me.

It affects ALL of us.

I should be freaking out. I am fearful, yes, but fear is present in my life anyway. I minimize that fear where and when I can. I’ve been doing it for a long time. I am surprised that I am as calm as I am.

My treatment took place as planned last week. The hospital had an excellent plan in place that I could see at every level of my visit ranging from the parking structure to my treatment. I hope my health continues to be as high of a priority in the future as it is now for the doctors and staff who care for me. I do have worries how my life living with cancer might be affected. I am concerned there may be delays or unplanned breaks in my treatment and changes in my protocol out of what is deemed by an institution as best for me. That may be an entire post on its own.

Living with metastatic breast cancer has made me better prepared for this than I thought it would. I am high risk.  As the virus continues to unfold, this is what I’ve discovered about myself.

I am good at social distancing.

Isolating myself isn’t really new for me. I have stayed home from activities before because I might catch a cold or the flu. I have canceled plans with friends to be safe. I haven’t hugged people, high fived, or shaken hands. Visitors have used separate hand towels. I moved off the sidewalk to the street when I encountered others on a walk the other day. I offered a friendly wave but no explanation to these strangers. It’s better for me to be safe than sorry and I will keep my distance. Literally.

I am prepared if I get sick suddenly.

Or as prepared as I can be. I may be more prepared than the average person, but I am not sure that’s true in these crazy times. I already had several days of non-perishable and easy to prepare foods stocked if I were to catch something from someone or if I were not feeling well due to cancer. I shopped early on and stocked up on cold medicines, cough drops, lots of choices for multi-symptom relief for diarrhea and stomach discomfort. I always have more toilet paper than one person probably needs. I know my current side effects. I know my needs.

The news changed about a month ago to when – not if – the U.S. would be hit with coronavirus. I made more plans for what I needed and have plenty of food to last me and other supplies. It took several trips to find hand sanitizer, but I eventually found some. I completed my first online grocery list and will do curbside pickup later this week. I still think there are advantages to choosing my own groceries, but I’ll see how online ordering goes and will decide later what to do another time. I likely will make an early morning trip here and there for milk and eggs, but I have powdered milk and a frozen quiche if the situation worsens and I can’t. Some panic oozed into a couple purchases. I guess I am okay with a degree of panic in unknown situations that change day to day. I have a solid plan for the time being and I am a good planner. On to point number three . . .

I plan my life around side effects.

Based on past treatments, I knew when I could schedule something fun or do necessary errands on days when I wasn’t hit with side effects. Fatigue and nausea could be predicted. Low white blood counts could be predicted. Insomnia and days of hot flashes and the chills all could be predicted.

My plans now revolve around oncology appointments and treatments. Keeping those are a top priority. I will move mountains to stick to my treatment schedule. Every other event or activity I’ve planned has been canceled. Not my treatments.

I am good at occupying time on my own. My home activities include:

  • Reading
  • Writing
  • Making cards
  • Exercising
  • Meditating
  • Writing thank you notes
  • Talking on the phone
  • Playing piano
  • Finger painting (have the paints but haven’t done yet)
  • Touch up painting on walls and trim (always low on my list)
  • Decluttering and Organizing (sadly also rather low on my list)
  • Watching TV and movies
  • Puzzles
  • Walking outside by myself if weather permits
  • Hanging out in my sauna
  • Practicing Reiki
  • I even have a microphone and a very small sound system where I can change the voice effect (harmonizing, choir, echo, robot) when I feel like singing at home where no one will hear me.

I have control over what I do and where I go.

I have had lots of practice at this. I have gone days, even a week here and there without seeing people or having face to face conversations due to my health or the health of others. I have made decisions to cancel plans that I haven’t wanted to cancel but it’s been in my best interest to do so. All my practice has made me good at it. I know how to stay as safe as possible during a crisis like this. It sucks but is the right move for me.

It’s the right move for all of us.

Temporary changes will have long term benefits.

It only takes one to infect many.

Stay home.

Don’t travel.

Go for a drive or walk outdoors on your own.

Don’t be a carrier or feel you’ll be okay if you get it because you’re healthy. The elderly and those with preexisting health conditions are not expendable. We matter. We are loved.

You matter.

For the love of God . . . cough and sneeze into your elbow.

Wash your hands or hand sanitize after blowing your nose.

We need to work together by staying apart.

What does coronavirus mean to you?