Heidi Mogush 9/13/24 Heidi Mogush 9/13/24

Update from Paul

This is Paul posting for Heidi.

Heidi last posted on May 28, writing about how much better she had been feeling, the delayed emotional reaction of her prognosis from last fall, and her intent to keep connecting with people who love her. She has been able to spend time with many of you, here in Minneapolis and in Iowa, Texas, Florida, Utah, and France. We’re grateful for these opportunities and wish that there could have been more time with more of you.

Earlier this week Heidi made the decision to stop treatment and begin hospice care at home. If you would like to reach out to Heidi directly, please use the private message page on her blog (https://www.heidimogush.com/contact-me). She may not be able to reply, but she will appreciate the messages. If you’re looking to help, food delivery is genuinely helpful, whether directly from local south Minneapolis restaurants or via Doordash and the like. Gift cards are best so we can use them when needed. Please direct those to me (paul@mogush.net or 612-920-3614).

If you saw this via a social media post, I probably won’t do that again. Future updates will be on this blog. You can sign up for notifications here: https://www.heidimogush.com/join-my-mailing-list

Heidi just read this before I posted it and she says she hopes to be writing on the blog again soon.

Heidi Mogush 5/28/24 Heidi Mogush 5/28/24

Here to Stay

It’s been a while. My peonies are blooming, seeds are sprouting like crazy and weeds are growing the fastest of all! The lushness of spring is here and I believe we can be certain it’s here to stay!

5.28.2024

I’ve been struggling. It doesn’t make a lot of sense when all things point to good news. My balance has continued to improve so much that my wheelchair and walker no longer ride in the car at the ready. They’re stored in the garage. My cane still sits by the back door but it doesn’t get any action. I’m walking on my own again! I can only walk short distances but it is a huge improvement that points to healing. If the cancer was having a big party in my brain I wouldn’t regain such balance. In addition, I’m a bit less tired (at least on non-chemo weeks) and I’m gardening. Gardening is not as easy as I’d like it to be but I’m doing it. Not long ago it would have been impossible.

All of it is good and yet deep, crushing sadness and a little panic settle in on my heart daily. It would have made sense to feel this way when I first learned of the great cancer expansion in October. It would have made sense to feel this way in winter when I could barely balance to get through the house and cried with each step up the stairs at night. It all would have made sense then. Somehow my improvement has made space for feelings, and I’m having them! I find myself very much wanting to be in good company so I’m spending a lot of time with those that love me most. It is special time and fun on the days I’m not crying so much. I’m taking deep breaths and asking for lots of hugs. I’m blessed that my kids and Paul are willing to comply with my requests. Bless them.

Much like I don’t believe the cancer is going to kill me, (if I give in to that thinking I’ll surely die quickly) I don’t believe these feelings will stay. I think it is a phase that will pass but it’s surely not passing fast enough for my taste! I have always been naturally positive and happy. I miss that feeling because it feels like me. I miss waking up happy with no worries. I miss the strong feelings of joy when I look at the beautiful world around me and my beautiful life. I miss the blissful certainty that like spring, I’m here to stay.

Heidi Mogush 3/8/24 Heidi Mogush 3/8/24

Grow

I’ve always admired the earliest perennial plants of spring. They creep out or sometimes burst forth enthusiastically when the weather is still chilly. Their internal clock tells them something is coming that is greater than the cold. Something is coming that will nurture them. They’ll have everything they need to grow.

3.8.2024

The last time I wrote I became able to take a few steps on my own. Things have continued to improve in small increments with walking but I have also learned how to use my canes, walker and humbled myself enough to enjoy the wheelchair when it is needed.

I have further reason to believe that the medicine is working. In addition to my improved balance, the nodules on my neck are shrinking. There is one that is visible and it is definitely smaller!

Despite all this joyful news, I am often overcome with grief. I cry nearly every day. Even on my laughingest days I still lose some tears. I guess even for a fairly positive person this cancer stuff isn’t a joyride. I wish it were. I just have to feel my feelings, though, and trust that this time will pass. I trust that, like my rhubarb, chives and parsley, something is coming that will nurture me. I have everything I need to grow.

Heidi Mogush 2/10/24 Heidi Mogush 2/10/24

Walking on Sunshine

Is the weather getting you down? It’s hard to know what to make of this largely dark, cloudy, unseasonably warm weather. Many people seem worried about it but I have to admit, I’m taking it as a gift to me personally this year. With mobility as a challenge, I’ve been grateful to navigate less snow and ice but I sure do miss the sun!

2.10.2024

The past few weeks have been rough. The things I was capable of doing a few weeks ago quickly dissolved into the blur of activities no longer possible for me. Mobility became a huge issue. Physically and emotionally, I have been giving more than 100% and it has been chipping away at my sense of wellbeing.

I began my new medication last Saturday. It is an old chemotherapy drug that is taken orally. After a week of treatment I get a break to recover. Luckily, there’s not much to recover from so far. This medicine carries with it many of the usual chemotherapy side effects you might think of - nausea, mouth sores, skin issues, compromising the immune system, etc. - but I’m doing pretty well so far. If all continues to go well we may increase the dose. (Yikes!) Still, I’ll do just about anything. I want it to work!

Maybe it is working…you’ll never believe what happened this morning. I walked across the kitchen. I did not crawl hand over hand around the countertops. I did not wobble my way across, barely making it. No! I just walked! I hoped for this but I have to admit I did not see it coming, not today. When you are using all you have to move around each day, even with a great deal of hope, drastic change can seem impossible. It feels miraculous for yesterday’s impossible to become today’s reality. What a joy! After making my first big steps, I announced my accomplishment to my family. Paul quickly started up celebratory music on the stereo. “Walking on Sunshine” by Katrina and the Waves sounded through the kitchen speakers. Suddenly, we couldn’t stop smiling. Jackson boogied around the room and spun across the floor. Laughter filled the air. Mine was cautious dancing but dancing just the same. I could wave my arms and wiggle my body without falling, without wavering much. Oh! What a gift!

I want to do everything now, but I’ll try not to. I’m guessing my next lesson will be on pacing myself. For now, I’m happy to be walking with more ease. Even if it’s cloudy outside, I’ll be “Walking on Sunshine” for the foreseeable future.

Heidi Mogush 2/2/24 Heidi Mogush 2/2/24

Walking, Simply Walking

There’s always something to be thankful for. I’ve had my challenges finding those things lately! There has been a stark contrast between my lived experience and what I’m working for, hoping for, searching for: health.

2.2.2024

It’s been nearly three months since I last wrote. I’ve been busy adapting to many changes. In early November I was beginning a different chemotherapy and it worked. My eyesight improved significantly! I managed to stay on it long enough to get some real benefit but ultimately we stopped because it was too hard on my body. We moved onto another medicine but stopped that as well; it wasn’t working. Tomorrow I begin another new (to me) medicine. The side effects don’t sound very fun (they never do), but I’m strangely excited to begin. I want it to work. I’m ready for it to work.

So, I can barely walk now. Side effects of medication paired with cancer near my brain have me swaying and wobbling like crazy. Everything I do is a tremendous effort. I move through life furniture-grabbing and creeping along with canes or a walker. Oh how I miss my old life and everything I used to do! Bending over to pick toys up off the floor, carrying a basket of laundry, even cleaning the bathroom sounds appealing now. Aside from spontaneous remission, walking smoothly across a room has become my ultimate dream. Perhaps this is not forever, only for now? My doctor has planted seeds of hope. (Bless him.) If we can get the cancer knocked back I may walk with ease again.

It’s funny the things we overlook when searching for something to be thankful for. On my tough days, I need to find something positive to keep going. Back in the good old days (last summer), I never would have considered gratitude for walking. Walking, simply walking is a beautiful gift! Walk across a room, up the stairs, through your neighborhood, through a pasture or through the woods. If I could, I know I would! Have you been for a walk today?

Heidi Mogush 11/8/23 Heidi Mogush 11/8/23

Something Else

I knew it when I wrote my last post but I just couldn’t pack any more bad news into that message. My vision has changed. I’m not seeing like I used to. We have been watching fluid in my eyes for years but it has never drifted into my central vision so it has not been a problem. At one point, a few years ago, my eye doctor thought I might have cancer in my eyes so I met with a retina specialist. I loved him because he told me what I wanted to hear, “Nah, it's not cancer.”

11.8.2023

With my vision being…less…lately I had another visit with that retina specialist. I reminded him that we’d met a few years ago and how much I liked him because he told me what I wanted to hear about cancer in my eyes. His response? “What if I changed my mind?”

Have you ever even heard of someone that has cancer in their eyes? I certainly hope not! I haven’t. This is getting ridiculous! The good news is that we don’t need to do anything in particular about it just yet. Cancer that is improving elsewhere is cancer that will improve in my eyes. Great!

I’m seeing things differently - literally - so I’m trying to figure out both what I want to do and what I can do. Things that I could do just a short time ago are harder. I’m stubborn - and that helps a lot - but I’m slowly realizing that I just have to do things differently. I’ll be happier if I do.

Thirteen years ago when I was first diagnosed with breast cancer, we had space for a sewing room in our house. It was a wonderful luxury and a beautiful outlet for me to do something I enjoyed when I wasn’t feeling well enough to do my normal things. Now, our bedrooms are filled with people! It’s a wonderful thing. Although, it is tough to find space to do the creative things I love without a lot of setup. Over the weekend, I started trying to carve out a little sewing space for myself in the dining room. It all started with lighting. I needed enough light in our dark, old house to be able to see. We bought a beautiful task light, clamped it on the little table in the corner and I set up my sewing machine. My aspirations were low. I’d just mend the open seams on our dish rags. They’re in perfectly good condition except they were cheap and all the end seams have worn open. It would be an easy fix. With some color-matching help from Jackson, I filled a bobbin with the correct color thread. Then, it was time to thread the machine’s needle. My eyes felt blurry, they filled with tears. Overwhelmed at the challenge, I couldn’t do it.

This is my life now? I think I can, I think I can, I can’t?

In the end I did thread the needle - twice - and I’m confident I’ll be able to do it again. I’m putting tiny threads through small spaces and succeeding. That’s what my body feels like, too, but it’s okay. I’m going to keep trying. I’m going to keep breathing, crying when I need to and do what I can to look at life from the perspective of a full cup. There are so many things I’m interested in and so many ways I can enjoy this life. I’ll thread needles while I can and when I can’t anymore, I’ll just do something else!

Heidi Mogush 10/30/23 Heidi Mogush 10/30/23

Devastatingly Beautiful

Nearly two weeks ago, my oncologist walked into the room with what he described as devastating news. I could tell he was upset. He admitted he’d lost sleep over it the previous night. I'd had a PET scan and a brain MRI the day before. Normally, I read the reports and study them before he comes in. Something was different this time, I just didn't want to. I guess it's a good thing I didn't.

10.30.2023

Devastating news. Devastating news. Devastating news. I kept hearing him say it. The PET scan didn't show much that surprised us, at least nothing we didn't already know about. There's still cancer around the lining of my lungs and lining of my heart but it's not particularly worse. Some of my bone cancer has gotten worse but not expanded greatly. There's also cancer in the lining of my abdomen, but we knew that. Goodness! So much cancer and this part wasn't even concerning! The big news was that there's cancer in the fluid around my brain and spine - “A sugar coating,” he said. A person with this diagnosis has an average life expectancy 4 to 6 months. I can get a year if things go really well. Yikes. Devastating news, indeed.

How am I doing? As well as can be expected, if not better, I guess. Sometimes I feel balanced and stable. Other times, when I'm tired or not sure what to do with myself, I feel utterly crushed by the weight of it. To be perfectly honest, I was feeling this way before I even knew I had this terrible cancer diagnosis. A lot has happened in the last month or six weeks that has been hard for my body. I really haven't felt like myself and have had to adapt in ways I never had to adapt before. Still, I am here somewhere. I find myself rising up again and again. I take inspiration from amazing people like my grandma Steffen. She used to say to me, "There's always, always something to be grateful for," and of course she was right. There is always something to be grateful for. That's one of the reasons this blog is so important for me. I hope you'll continue to read along with me as I write and share it with friends or anyone you think might enjoy it. Writing in this place helps me find myself, it helps me be more positive in a real way, a way that works for me. It helps me find the silver linings that keep me going. Oftentimes you are the silver lining that keeps me going.

This is devastating. It is crushing, but it is more than that. My new perspective brings agony but it also brings joy. There is nothing like deep sadness to help me see what I already have in front of me and what I have is a beautiful life. I have a life so beautiful, so full of love, so wonderful that I don't want to leave it. Devastating news, yes, but only because I have such a devastatingly beautiful life. Could anyone ask for more?

Heidi Mogush 9/13/23 Heidi Mogush 9/13/23

Whatever I Want

I’m not sure if you know this about me. I’ve been homeschooling with some combination of our children for the past ten years. It has been everything you might imagine it to be, everything most life experiences have the potential to be. It has been deeply challenging and wildly joyful. It has been good. But, all good things must come to an end.

9.13.2023

Believe it or not, this really is a hot bath. We used to get a pretty sweet setup on the farm - a cold cattle tank for the kids and a hot tub for me! Notice, my sweet, sweet boys often needed to warm up with Mom in the hot tub!

I have been absent from this place for around a year. I just had to stop. After years of keeping all the balls in the air I just didn’t feel I could keep kids coming and going from school, homeschooling, household management, cancer treatment, and blogging about cancer treatment going. It was too much!

The past year of treatment has amounted to a parade of targeted chemotherapy infusions. Targeted chemotherapy works in special ways meant to be less bad (that’s my description, not the cancer people’s). The length of each treatment has varied but this summer they have gotten ridiculously short. Ironically, this has probably been the best summer I’ve had in 3-5 years and it has been filled with failed treatments! (Yikes! What does that say about cancer treatment?) Anyway, we’re moving beyond targeted treatments back into carpet-bomb, knock-down, drag-out, hard core chemo again.

After only a month on the last targeted chemo I was hit with the worst pain in my life. For a metastatic breast cancer patient, new pain = check it out. Unfortunately, the cancer has moved into my abdomen. The pain is under control now. I am super grateful. We did a procedure on Friday that should prevent that pain going forward. And, I started a new chemo, too.

As we wrapped up the school year last spring, Paul and I speculated at what in the world I would do with myself once homeschooling ends. My main idea was this: whatever I want! Paul chuckled and suggested I do whatever I want for far longer than any stretch I had in mind. (I suspect he thinks I deserve it.)

In the meantime, it has occurred to me that these are not ideal conditions for doing whatever I want. After a busy morning Thursday of getting everyone off to school, a lovely, quick visit from a friend and an appointment I came home feeling cold. I thought I want soup and a hot bath. Then, I realized, I could have it! I quickly threw some garden vegetables in a pan to saute, added some broth and left it while I took the hottest, nicest bath I’ve had in years. There was no one home to use up my hot water or call my name. I only had the scent of simmering soup to lure me out of the steamy bathroom.

Despite it all, I’m doing whatever I want and it feels good!

Heidi Mogush 7/14/22 Heidi Mogush 7/14/22

Gold

I met a rock star two nights ago. Literally. I also met a guy that posts exercise videos on social media, a nurse that loves to laugh, and the sweetest health aid. The people that work at HCMC are totally awesome.

7.14.2022

My surgery went very well. I’m improving every day. There are tubes draining fluid from my left lung. They hurt, but I try to stay grateful the drains are there and doing their job. The work of this surgery means I’ll have two stable lungs. I’ll be able to sing and dance and play again!

There are times in life when gratitude comes pretty easily. This is one of them. My time in the hospital has been such a blessing because of the amazing people here. Love, compassion, good humor, and a genuine willingness to help makes healing easier. Every person I’ve met this week has a heart of gold. Who knew my week in the hospital would brush me up against fame and so many, many shiny hearts?

Heidi Mogush 7/10/22 Heidi Mogush 7/10/22

One

It's raspberry season in our garden. Zucchini are bursting forth and the tomatoes are blossoming like crazy but it’s the raspberries that have our attention. We go out to pick them first thing most mornings. We pick all that are ripe, but a few hours later more are ready. They are a marvel!

7.10.2022

The last lung drain I wrote about left me feeling really good for two days. Then, I returned to not feeling well. It got worse. Breathing was difficult and I was really sick. Finally, we drained all the fluid away.

The good news: my lung is able to re-inflate. A long-term fix is possible. The other news: I’m having lung surgery tomorrow. If all goes well, I’ll come home with a lung less prone to fluid build-up.

A new treatment plan is in the works. Options are few at this point. That’s not great, but I remember this is just like buying a house or finding the love of my life. I might want to have lots of options but I only need one that works perfectly.

Until Monday, I’ll be in the garden - picking berries!

Heidi Mogush 6/16/22 Heidi Mogush 6/16/22

So Good

I had another drain from my left lung yesterday. We removed more than a liter of fluid. If you’re keeping track, that’s more than three liters in just six weeks. It’s no wonder I feel heavy sometimes! Once the procedure was complete we looked at the remaining fluid. There is still a lot in there. Rats.

6.16.2022

Initially, I was really disappointed. Recovering in the hospital, I didn’t feel much different. It seemed like a lost cause until I got up and started moving. As I walked away from the hospital in my suffocating N95 mask, I could breathe! I could almost fly down the sidewalk. Burning past every other person on the street, my feet moved easily. My legs felt light! Still, I hesitated to get too excited. Sometimes I get a little bubble of energy but it often bursts. Not this time! At least, not yet.

I slept beautifully last night and woke up an hour earlier than usual this morning. I can feel that my body needs some rest but I also have so much energy! I’m returning to my natural state. It’s the one in which I laugh and smile easily. I dance around and feel motivated to do life. It’s awesome! Just think what it will be like when my lung is free of fluid. Look out world!

Hey. Could you do something for me today? Stop. Take a deep breath. Feel how well your healthy, beautiful lungs work and be grateful. You’ve got it so good (and so do I)!

Heidi Mogush 6/10/22 Heidi Mogush 6/10/22

Planted

In summer, the front of our property is lined with flowers. The show begins in early June with a nearly 40-foot hedge of deep pink peonies. By the time they finish blooming, the geraniums take over until frost threatens. I spent hours dragging along to plant only half the geraniums yesterday. I didn't feel well but I knew what I needed, and I needed to get some of those plants in the ground!

6.10.2022

In summer, the front of our property is lined with flowers. The show begins in early June with a nearly 40-foot hedge of deep pink peonies. By the time they finish blooming, geraniums take over until frost threatens. I spent hours dragging along to plant only half the geraniums yesterday. I didn't feel well but I knew what I needed, and I needed to get some of those plants in the ground!

My thoracentesis was Monday. It drained fluid from the lining of my left lung. It was remarkably easy, easier than all the other times. Since Monday was so easy, I seamlessly (unconsciously) changed my expectations for the entire week. Surely, I'd wake up on Tuesday feeling even better. Easier breathing, more oxygen, more energy, right? Not really.

It's been a long, slow week. My body has been heavy with fatigue. I pushed myself too far at times, and then, retreated into rest. Ugh.

I expected to spend today dragging through the second half of my planting. Jackson and I made our way outside. He wanted to dig and I figured I'd drag, but it didn't work out. Well, the dragging along didn't work out. What a difference a day makes! Sometime between breakfast and outside time, a little laughter, music, and joy crept in. They brought energy. It was for me! We dug, we sang, we danced, and in short order, all the geraniums were planted.

Heidi Mogush 6/2/22 Heidi Mogush 6/2/22

Blessings

Hello! It’s been a long time! I took a vacation from writing. I hope you don’t mind. Living with metastatic breast cancer is no small feat so taking one item off my to-do list was…well, needed.

6.2.2022

Hello! It’s been a long time! I took a vacation from writing. I hope you don’t mind. Living with metastatic breast cancer is no small feat so taking one item off my to-do list was…well, needed.

Remission isn't the way I thought it would be. I imagined it would be sunshine, wild joy, and light radiating everywhere. I thought it would be complete confidence that everything is perfect and exactly how it should be.

It's not like that.

It has been, Is this what ‘normal’ feels like? It has been slowly, slowly having more energy. It has been me trying not to panic every time I don't feel well. It has been a practice in trust.

For a few months I enjoyed an enormous burst of energy. I was doing my regular exercises but found I could do even more. I felt better every day - better than I’d felt in years! I began to glimpse what I thought normal, non-cancerous people might feel like. Then one morning, I woke up in pain. When you have cancer, new pain = scans.

I met with my oncologist today to go over all that has happened:

*I had a PET scan - we look for cancer with this one,

*an echocardiogram of my heart, and

*a few weeks ago, I had fluid drained from the lining of my left lung.

Good news! There’s not much going on cancer-wise in my body. There are little bits but it does not really appear to be progressing.

My heart looks good and there is even less fluid than last time we checked.

Finally, my left lung. I do have a large amount of fluid pressing on my lung. It may be causing my stomach pain. I had some of it drained away, but there is still a lot in there. Since I’d rather feel great instead of good, we’re going to drain more. It’s a little tricky to have needles stuck between my ribs but it’ll be worth it. I’m going to feel amazing once it’s gone! So, I’m delighted!

I hope all this means I can turn back to writing. I love connecting with you. I hope you will stay with me, keep reading, and maybe even share me with a friend. Thank you for being here. Blessings to you all.

Heidi Mogush 11/24/21 Heidi Mogush 11/24/21

Changed

There is a small hill in our neighborhood. It is so small that you could easily walk through our ‘hood and not know it was there. Where we approach, it has a one-block incline and one-block decline. It’s not much to think of, if you’re healthy.

11.24.2021

Back around the time of my heart surgery our neighborhood hill took on a bit of significance. When I couldn’t breathe well enough to walk safely on my own, Paul went with me. I couldn’t go far or as fast as I wanted. Just a block and a half from home, we were often greeted with the hill. Turn left to walk the easy street, a gentle decline. Turn right to go up the hill. Watching through the eyes of love and seeing the state I was in, Paul would have likely chosen the easier path for us. Not me. No. I chose the hill almost every time. Even when I was breathless, I started climbing.

After radiation, things for me went downhill fast. I did not feel well. Lumps pushed out of my neck. My back ached. My body was heavy with pain and exhaustion. Maybe I was just recovering from radiation? No. My cancer was misbehaving.

Despite the pain, deep disappointment, and, let’s be real - fear - I set my mind on positivity. I told myself that I am healthy. I took myself for walks. As I went along, I spoke aloud, “I am perfectly healthy.” I did not feel healthy. It was hard to walk. It was hard to get through every day. It was hard to be without a break from thoughts of cancer, pain, and my harsh reality. Still, I kept on. I lied to myself. Walking, “I feel better every day.” Thinking, “I feel better every day.” Saying, “I feel better every day.” Praying, “Thank you, God, I feel better every day.”

I had a checkup at the cancer center a few weeks ago. I shouldn’t have been surprised by what I heard because my body never lies. I knew how I had been feeling. Still, it was a surprise when the word “perfect” floated through the room. I was overjoyed when I heard the word “remission.” REMISSION! Of course, it’s not definite -these things never are - but it sure looks and feels like remission.

Now, I really do feel better every day. When I wake up in the morning I am excited for each day. When I exercise, I smile because it feels so good to move. When I interact with my family I laugh, because everything is more delightful when I feel well. When I go to sleep at night, I am grateful. Life is so good.

I went for a walk today. I wanted to savor the scent of fall and let my hair blow wild in the autumn wind. I walked South. When I got to the bottom of the hill I paused. I turned right but I didn’t walk up the hill. I bounced, I jogged, I ran. It was fun! I grinned. Things have changed.

Heidi Mogush 9/8/21 Heidi Mogush 9/8/21

Happy Again

In my natural state, I am smiling. I smile when I walk, smile when I talk and smile when I’m emailing someone I like. I wasn’t so smiley for a few days. Radiation was easy. Well, the process was easy. It wasn’t perfect, though. Cancer treatment never is.

9.8.2021

In my natural state, I am smiling. I smile when I walk, smile when I talk and smile when I’m emailing someone I like. I wasn’t so smiley for a few days. Radiation was easy. Well, the process was easy. It wasn’t perfect, though. Cancer treatment never is.

My regular cancer medication has me operating with very little appetite. My radiation was straightforward, directed to the first lumbar of my spine. The only thing in the way? My belly. Running a little radiation through my guts dropped my appetite right down to nothing. Thank God for my amazing body! I’m already regaining my appetite. I want to eat. Every food leaves me feeling sick but I’m progressing just the same.

Paul is unbelievably good to me. He patiently tells me what I need to hear. It won’t be like this forever. He selflessly adapts when my skin crawls with pain. I’m sorry, I didn’t know. He echoes back to me what I know to be true. Tomorrow will be better. And it is! Here we are. Another tomorrow has arrived and it is better. It’s better than yesterday and tomorrow will be even more.

Now, I’m smiling. I’m tending the garden and children. I am returning to myself. I’m happy again.

Heidi Mogush 9/1/21 Heidi Mogush 9/1/21

Lovely Life

Things have been moving and shaking at our house. We are cleaning and sorting, fixing and soon (I hope) painting. Our load has been a bit too heavy for years. We’re making way for positive new energy, new life, and fresh new ways.

9.1.2021

The last week has been a lot. I had a biopsy taken from my neck, drained fluid from around my lung, met my new radiation oncologist and scanned and planned for radiation. That was all before noon on Friday! Since then, I had a COVID booster, an echocardiogram of my heart and finished more than half my course of radiation. Things are moving and shaking!

Radiation started on Monday. It. Is. So. Easy. The entire universe seems to be conspiring to make it so. It is only about ten minutes from our house to the cancer center but this week it seems remarkably faster. Somehow, day after day, all the stoplights are green. Sunshine and music streaming, I cruise downtown with a smile on my face. When I arrive, everything is easy. Parking? Reserved. Waiting room? Empty. People? Super nice and always ready. It feels as if finally, finally things are turning around for me. If green lights, sunshine and nice people don’t mean my cancer is on the run, what could? (Wink.)

Even with so much ease this week, I’m feeling a little wilted. Side effects and the uncertainty of it all sometimes gets to me. At about 4:00 today I decided I’m not doing anything I don’t want to do for the rest of the day. Maybe, for the rest of the week. Now, I’m doing entirely as I please. It’s good. I cut myself some fresh zinnias. I placed them at my bedside. As I drift off to sleep tonight, I’ll let go of my heavy load. I’ll fill myself with positive energy. I’ll look at my fresh, beautiful flowers and sleep, dreaming of my lovely life.

Heidi Mogush 8/23/21 Heidi Mogush 8/23/21

Keep Going

In April, I started new medication. As the side effects set in, my writing voice slowly went mute. By the time summer arrived, I didn’t even try to write anymore.

8.23.2021

In April, I started new medication. As the side effects set in, my writing voice slowly went mute. By the time summer arrived, I didn’t even try to write anymore.

Today, I’m back. I stand squarely in a season of abundance. Tomatoes pile up on the countertop. Fruits wait to be preserved. Kale, cabbage, broccoli, Swiss chard, onions, green beans, beets, garlic, cucumbers and zucchini await my tardy harvest. Despite drought, they take what little I give them and keep growing.

Over summer I experienced two different combinations of cancer treatments. The first hit me hard. I pushed back with daily exercise and as much positivity as I could muster but it won in the end by pulling down my spirit. I did not feel like myself at all. Without me I just wasn’t me, and that wasn’t sustainable. It turns out I can’t do cancer treatment or life when I don’t feel like myself for a long time. So, we switched to a new plan. Not perfect but much more tolerable, I felt like a person again; my spirit returned. It is easier to ignore the unpleasantries of cancer treatment when I feel like myself.

I had a regular cancer check-up and PET scan last week. My cancer is slowly growing. There is cancer in the lymph nodes near my collar bones and in one lumbar of my spine. Fluid is accumulating around my left lung and more fluid is present around my heart. I will take radiation therapy for my spine, a procedure to drain fluid from my lung, a lymph node biopsy, and at my doctor’s request, seek another opinion for what medication to try next.

My amazing oncologist told me this is not an emergency. It is growing slowly. It will not kill me. Not yet. We are looking for the right recipe to stop my cancer. I am grateful that he always remembers I am a person and treats me as such. On top of that, nurses offer me hugs. Lab techs help me laugh through tears. My favorite scheduler fixes my treatment calendar to be as easy as possible. Love filters through every interaction.

I am home now. Love lingers here, too. Hugs and sweetness mingle with the drive of everyday life with children. I honor this moment. I stop. I breathe deeply. I am grateful. I thirst for remission. Despite drought, I use what I am given and keep going.

Heidi Mogush 4/15/21 Heidi Mogush 4/15/21

Hope and Gratitude

In my week at home I’ve already passed several tests. Well, one really, but it amounted to three appointments with various members of my medical team so I’m giving myself credit three times.

4.15.2021

In my week at home I’ve already passed several tests. Well, one really, but it amounted to three appointments with various members of my medical team so I’m giving myself credit three times. It was all hospital follow-up. My heart is looking good. Our first look at the pericardium post-hospital showed no new fluid. I got to hear words like, “...expected after we’ve been in the pericardium,” “normal,” and, “perfect.” I loved hearing those words. I’ve been waiting more than a year to hear words like that about my heart!

Since there was cancer in all that pesky pericardial fluid we made a new treatment plan. The new medications arrived. I started the easy one yesterday. It’ll help control the cancer from a hormone standpoint and ensure I have lots of nice hot flashes. When my cheeks turn rosy from the heat, Paul often - unknowingly - tells me I’m pretty. I’m not usually in the mood to hear about it in those moments but I resolve to embrace it from now on.

The second medication is the big deal, heavy-hitter. Think: chemotherapy symptoms + do it to yourself. It just arrived by special delivery. I’ll only be able to get one dose in today so I can delay the inevitable a few hours. Chemotherapy is not fun, but my two experiences with it were short-lived. All I had to do was get through a few months and the hardest part was over. Plus, I didn’t have to infuse myself; someone else put it into my body. This time, I have to do it. I have to physically put it in my mouth two times a day, every day. Then, hope nothing happens. Well, hope for all the benefits with no side effects. I’m looking for easy because this has been one crazy, rocky road.

I took a big step forward this morning. I said, thank you for this medication and the help it may offer me. I’m pretty good at staying positive (most of the time). I choose to be grateful despite all I could (and sometimes do) complain about, but there is always room for improvement. There is room for more joy and I know gratitude is the path there.

So today, I open myself to this new treatment and the help it may provide. I allow my body to accept this help and healing. I move forward with hope and gratitude.

Heidi Mogush 4/7/21 Heidi Mogush 4/7/21

Catching Up

I wasn’t sleeping well my last few nights at home before going to the hospital so I started out at a deficit. Sleep is a precious thing. Take a nap? I didn’t really have time.

4.7.2021

I wasn’t sleeping well my last few nights at home before going to the hospital so I started out at a deficit. Sleep is a precious thing. Take a nap? I didn’t really have time.

Things moved along slowly but steadily over the weekend. I was bracing myself to be at the hospital much of the week. Sunday night, I got ready for bed. Medication, vitals - everything was done. All that remained was one trip to the bathroom and then, sleep. I stood up from the side of the bed. PLOP! My drain fell on the floor! Stunned, I just stood there. Staring. At least 8 inches of tubing that had been in my chest a moment ago were suddenly on the floor! How could it bypass stitches, bandages and tape so effortlessly?

Apparently I wasn’t the only one stunned because everyone that came in stared at it. Like a crime scene, no one moved a thing. Finally, the spell was broken. They checked me over. Everything was fine until morning. It was after 11:00 p.m. My door latched shut. I looked at the floor. It was still there, untouched. Laughing to myself, I picked up the drain and moved it aside. All was quiet. Bandaged up, I slept for the second night in a row.

I was expecting the worst. Would they place a new drain? More surgery? I really need this to work! It ended up being better than I could imagine. After much checking it became clear there was no reason for me to stay. I came home late Monday afternoon.

Until now, I didn’t know how luxurious it is to be home. I can hug and hug and hug my family. I get to take showers - showers! (Amazing.) Best of all, I can sleep in my own bed. I relax into my own pillow at night. I sleep all night long and take naps, too. I’m catching up one day at a time.

Heidi Mogush 4/2/21 Heidi Mogush 4/2/21

On my feet

We have a trampoline. The enormous bouncing contraption that takes up nearly half our backyard allows us laughter, exercise and fun nearly every day of the year. I make a habit of climbing in there most days and bouncing with the kids. While they fly, twist and double-flip, I wait for my turn.

4.2.2021

When I had my pericardium drained in January I had a mid-procedure daydream. I had been working on my front flip for nearly a year. I was close but I couldn’t land it. As I laid on the table in the cath lab (very lightly sedated), I thought, Once this fluid is out, I’ll be able to land my front flip. Maybe it was the sedation but I was certain about it.

The time since passed quickly and has been a burden on my heart. My follow-up echocardiogram showed fluid re-accumulating just five weeks after being drained. Rats! Just when I was feeling good and starting to trust my body again, the rug was pulled out from under me.

Last week things changed rapidly. One evening Paul and I went for a walk. As we went along, Paul marvelled at how I could go so fast. By Saturday I could barely get around the block. I was terribly out of breath.

First thing Monday morning we called the cancer center. Even though we didn’t think it was an emergency, the most efficient way to get all the tests I needed would be at the ER. Paul and the kids dropped me off. Blood work, CT scan, imaging of my heart. It was an emergency afterall. I was admitted and went upstairs for another pericardiocentesis. It would make it safe enough for me to make it through the night.

Overnight, my pericardium filled up again. Tuesday came. We made plans. There was a cancellation in the operating room that made space for me. They whisked me away, sobbing, for surgery. I knew this heart surgery would come eventually but I still didn’t want it. I was scared. I was alone. It was happening anyway. It had to.

The surgery went fine. We cut a “window” (hole) in the bottom of my pericardium. Now, two drains hang out just below my breastbone allowing fluid to flow away. Our hope is that the pericardium will get dry enough to seal up against the heart so there’s no more room for troublesome fluid. I’ve got a lot of living left to do so I hope it fuses perfectly.

It’ll be a while before I get to go home. I am waiting for the fluid to stop. I soak up every good bit of the hospital staff. I laugh as much as I can and cry when I can’t laugh. I’m making good use of my old chemo dancing skills in my hospital room.

Once I’m recovered enough to get back on the trampoline there’ll be no holding me back and no more almost or bottom landings. I’ll keep bouncing. I’ll keep flipping. My heart will heal for good this time. I can't quite get there yet but one of these days I'll land solidly - on my feet.