Top Ten MBC Supports

While I was out walking the other day, I passed the home of a student I had taught a few years back. I’m still friendly with the student’s mother and she was out working in her yard. Our paths have crossed more over the last few months. We have some similar interests and both like supporting our community. On this particular day, she shared that a cousin out in New York City had been diagnosed with metastatic breast cancer. Active. Mid-thirties. A new mother. It’s unbelievably hard to process at any time in a person’s life, but I understood it was hitting her really hard during COVID-19 in a geographic area that has seen astronomically high numbers of cases and deaths from the virus. I am calling her Marcie which is not her real name.

I know what’s like to be going through active treatment during a pandemic in Wisconsin. My lens is what I experience and what I see through network news. I don’t know exactly what life is like for Marcie, but I empathize. I know far too well what it’s like to have life repeatedly turned upside down. My friend asked if there was anything I could share with her that she could pass on to someone newly diagnosed with stage iv breast cancer. We talked a bit longer and I said I would message her a couple of ideas.

I found I couldn’t limit it two or three tips as I thought about what to send. There are many things I’ve done over the years. Some pieces fit into my life better than others. Everyone has their own list of what works for them. I thought about what worked for me, what still works for me, and came up with a top ten list that I sent my friend. Marcie and I are now in communication. I share my list as today’s post.

Top Ten MBC Supports

  1. Take a health journal with you to appointments. Use it to note vitals, take notes, keep a list of questions, document side effects, file test results, etc. I am on my third binder. My notes helped me understand appointments better, remember them, and sometimes I needed them if my oncologist said something that I found contradicted something earlier. A health journal provides a source of accountability.
  2. Consider buying Radical Remission by Kelley Turner. This is the top book I’d recommend from all the cancer ones I have read. I heard she also has a podcast. I haven’t listened to the podcast. I am cheating a bit with this point because it contains much of the advice you would suspect to hear on nutrition, stress, and more. It examines 9 factors that long term survivors have in common.
  3. Belleruth Nepartsek has a guided imagery CD that I downloaded early on in my diagnosis. It was called “Fight Cancer.” I listened to a guided imagery segment and an affirmation segment daily. I am sure she has several guided imageries. The one I like involves a real or imagined place outdoors where you are surrounded by supporters that you know or may not know. It was often in the afternoon when I felt fatigued and I would fall asleep as I listened. I still listen to it every so often. I find it empowering.
  4. Comfort foods are good. When you feel sick, you need to eat what keeps the vomit demons at bay.
  5. Exercise as you are able. Even if you don’t feel like it. Try to do a little walking every day to keep moving. I wasn’t always good at this. Now, it is a priority every day.
  6. I found essential oils helped with anxiety and nausea. They are not to be ingested. Just inhale. Lavender, peppermint, and spearmint work well for anxiety and nausea.
  7. You may have to set boundaries with others on what you need and don’t need. It’s okay to say no thank you. Don’t feel pressure to accept invitations or share information just because someone asks insensitive, none of their business questions.
  8. Some people you may not know very well will rise up and sincerely support you. Let them in. Keep in mind those boundaries. Some people you’ve known for years, perhaps some family members and close friends, may disappear because they honestly can’t handle your situation. Let them go.
  9. Advocate for yourself. Ask questions. Be persistent. Be knowledgeable. These qualities make you an assertive and strong patient – not annoying or difficult. Look into your rights as a patient. Know your rights.
  10. Ignore statistics whenever possible. You are not a number. I was given literature to read before initial treatment even started. I could see it contained percentages on survival rates . . . and I threw it out unread.

Bonus Support

I forgot maybe one of the most important things I’ve internalized . . . DON’T GIVE UP. There is a lot of research happening on the metastatic breast cancer front. Ask about it. Research the research on your own. One of the best things I did was some special genetic testing through FOUNDATION ONE that identified some new mutations in cells. Mutations that can be targeted.

Don’t give up. Keep searching to find a way.

Always.

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.

fullsizeoutput_b27
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.

Baby Robin Rescue

“There was a baby bird in your tree we took down,” explained the tree man, pointing to the ground at the side of my house. “It’s there in its nest.”

Tucked under the downspout and against the bricks was a nest that held a rather large, fluffy, baby bird.  Its home had vanished into the tree chipper, its mother wouldn’t know where to find it, and night was falling. Thunder grumbled softly and the sky flashed Morse code that a storm was near. Humidity hung in the air, thick and uncomfortably sticky.

“What should I do with it?” I felt I should know but I didn’t.

It was clear the baby was a robin. It’s grayish-brown feathers filled the nest entirely, but it still looked too young to fly. Its little beak opened and closed expecting food.

“You can just leave it there for the night,” said the man. I sensed the attitude was to leave it in nature as close to its original home as possible.

I knew instantly I was not leaving this motherless, little baby robin alone on the ground where it was completely helpless and unprotected. It wouldn’t survive the night. Should I take it inside with me? Was there someplace else I could leave it outside? Even though I hadn’t held the chainsaw, I still had destroyed its home. Mama robin wouldn’t find it.

Ilene is my neighbor who also very conveniently is a vet. She was outside trying to get her lawn mowed before it stormed. Lightning flickered more regularly in the sky. I couldn’t wait much longer. It was getting dark and the baby bird still had nowhere to spend the night.

“Ilene! Do you have a second?” I shouted above the motor and motioned in my direction. She stopped the mower. “I have a baby bird here.”

We talked over the options. No, she could not take it. They didn’t work with rescue animals at her clinic. There was a vet clinic off the beltline on Rimrock Road that was open twenty-four hours and took wild animals. That was a possibility. Finally, we decided it was best to put the bird and its nest cradled on top of an abandoned nest in a bush to the side of my house.  It had a better chance there than on the ground. With flashlight in hand, we safely nestled it in.

My next job was to dig up a couple of worms for it and try to feed it. Sweat rolled down my face and back. I couldn’t see where I was digging.  Multiple holes were appearing in my garden and there was not a worm to be seen. Why was it so hard to find a dang worm? This was crazy. I was crazy.

After about ten minutes I abandoned the worm quest. Plan D was now in motion. I would take the bird to the vet clinic.

Flashlight in hand, I retrieved the baby robin, put it in a box, and placed it on the floor on the passenger side of the car. Tired and sweaty, off I went, hoping the thunderstorm wouldn’t hit until I returned home. My mother’s voice spoke quietly in my head, “Don’t go. Stay in for the night. You’ll get wet.” But my mother wasn’t around anymore. It was just shy of a month since she died, but she was still there chattering away at me.

I didn’t mind.

Keep in mind, I also didn’t listen.

I knew my actions were some type of response to feeling alone and a deep need to fix the unfixable.

Baby bird made some sounds. “Tweet, tweet.” What was it saying? I didn’t speak bird but decided to tweet back anyway. “Tweet, tweet, tweet,” I said.

The sky let loose torrents of water which made it tough to see the road. It was one of those downpours where you feel like you’re continuously under a waterfall and the windshield wipers can’t keep up. All this felt so insane on several levels. Tweeting back to the little bird was somehow comforting.  We tweeted back and forth for the rest of the trip until I found the clinic.

I covered my little bird with my coat and ran the box into the clinic. I suspiciously eyed an orange cat that was sitting on a bench just inside the door licking its paw. A woman at the front desk smiled and took the bird to the back room. That was it, I was done. I headed back out into the stormy night.

When I got back and buckled up in my car, I realized I hadn’t said good-bye to my bird.

Yep, I heard it.

My bird.

Somehow that little animal had become mine in a time span of less than an hour. Maybe it was mine the moment I saw it on the ground . . . I don’t know.  But I did know I had to dash back through the rain into the clinic so I could say good-bye.

I’ve been this way for a long time. I’ve learned to be okay with it.

“I’m back,” I announced as I dripped in front of the receptionist.

Foolishly I added, “I didn’t get to say good-bye to my bird.”

She stared at me for a long moment before disappearing into the back room and returning with the robin.

“Bye, bye,” I said. “Be a good little bird.”

I felt I needed to add a few tweets in there to make sure it understood.  I already felt foolish, so there was no point stopping. “Tweet, tweet . . . tweet, tweet.”

I think it understood.

Somehow, I think my mother did, too.