Misc. Update!

The colors at Mueller Park are
vibrant and beautiful!

I haven't written in a while.  My life is a mix of good stuff and hard stuff.  I think constantly about my health and how all of this is affecting my family.  I have the added worry that I could drop dead at any moment (more below). Mat has his own set of worries, I hope he will see Annie at Huntsman once a week on the days he takes off.  The girls go to therapy every other week. 

We went up Mueller Park Canyon on Sunday for a late lunch and fire with friends.  We had lunch and spent a long time around the fire roasting marshmallows for s'mores and talking.  One of their boys didn't know about the cardiac arrest, so we gave him a few details.  And then I see McKinley, with tears welling up in her eyes.  There are times when I just don't know what to do to help the kids get through this.  

Both girls (and I'm sure my adult kids too) have so much anxiety over what is happening in my life.  McKinley doesn't sleep well and has very negative feelings about school in general.  She goes to therapy every two weeks, she likes her therapist because she swears sometimes. ☺   Hopefully they are doing some therapy as well.  Brooklyn goes every week, but may have to switch to every other week because we only get 20 sessions a year each.  What a lame policy!  Some issues will take more than 20 sessions to resolve!

Already feeling quite overwhelmed, I went in for Monday for the stress test for my heart. I was there for just under three hours, they took lots of pictures and I did the treadmill thing.  They started me out at a 10% incline, 2.7 mph, and increased both from there.  I can't believe how even at the lowest setting, it was a challenge.  That was the most depressing part of it for me.  I used to run on a treadmill at 10% incline, I used to run half marathons and 5K's.  I loved hiking in the mountains.  I used to lift weights - I was at the gym 4-5 times a week.  I'm so limited in what I can do now.  Besides the neuropathy in my feet, I'm afraid to do some of the things that used to be normal because I don't want another cardiac event (and don't know how to prevent another one).  I'm considering getting a portable defibrillator to have on hand in case it's ever needed.  They are a little pricey!  Ideally, I'd just have one implanted so it's automatic and I never have to worry about my heart killing me.  

We had our group yesterday at the hospital for the first time in 2 ½ years!  Slowly, slowly we return to "normal." We talked about good experiences in our healthcare journeys, and bad ones.  One of my worst experiences in healthcare was my stay at Lakeview Hospital. The ER doc tried to tell me I had just blacked out. I said, "Look, all I can go on is what people have told me.  I was told there was no pulse, compressions were started and went on for about 4 minutes, and I was gray - meaning death.  (Do those symptoms indicate my passing out?!?).  I said in group I'd prefer to die slowly and painfully, rather than abruptly with no chance to say goodbye to my people!  

p.s. I've never heard good things about Lakeview Hospital, just discontented reports.  I second that - NEVER go to Lakeview Hospital if you have another option! I won't go through my list of concerns or complaints here.

I went on two mothers retreats in the last month (one for moms with teens, one for moms with young adult children).  We were in Victor, ID at Quickwater Ranch.  It was so great to be able to relax some and breathe clean mountain air. The mothers retreats are usually pretty laid back, with workshops a couple times a day.  We work together on meals and clean-up.  We have down time to be outside, some played pickle ball, some go for walks or hikes, some sit around the house to talk and connect. I feel some frustration because I have the hardest time remembering names and have to ask again and again, but I met some great women.  We had one drive all the way from South Carolina, two drove from Minnesota, several were from California, Colorado and Wyoming, with a few Utahns peppered in.  There are usually about 20 women there.  It is definitely something I will continue for as long as I feel relatively well!

Today I worked outside on our park strip. I am SO OCD!!!  We filled the park strip with river rock, and some bigger rocks we've collected.  The bigger rocks "have to" be worked in, so I move the river rock out of the way to place the bigger rocks, then move the smaller rocks back to their places. And there are no broken rocks allowed!  I spent a fair amount of time today sorting through and taking out the broken rocks.  I'm about half way through this project and have so much to work on in the rest of the yard.  I came in and was totally spent.  I couldn't get up to make dinner.  We ate whatever was on hand and easy. 

Thank you for loving us and praying for us through these hard times!  I can't see the way through yet, but I'm doing my best to get through it all.  💕

Cardiologist

Just a quick update.  I saw the cardiologist today...finally!  It was a little bit of a hassle getting in because you have to have a referral from your primary care doctor.  But I don't have one, I just have an oncologist. So getting a referral from Lakeview Hospital from the doctor that discharged me, whose name is ???  Anyway, Mat made lots of phone calls to figure it out and got a referral to the right place.  

The doctor was funny.  He asked a lot of questions and we gave all the right answers.  He listened to my heart and lungs.  Other than a pulse that was on the high end of normal, he couldn't come up with anything that was wrong.  He looked perplexed when I gave him my health history, like he's asking himself how I made it through any of it!  All the data on every echocardiogram looked great.  The last thing to do is a stress test, which I'll do in about 6 weeks.  We put it off because my chemo on Friday should go through the insurance by then, so we shouldn't have any more out of pocket expenses once the chemo copay assistance goes through.

Heroes come in all shapes and sizes

I have to update the blog tonight.  My heart is so full with love and gratitude for the angel nurse who saved my life 3 weeks ago.  The last concert at Bountiful Park was tonight, we decided to go because we had nothing to do, and honestly wanted to try to find the nurse who started compressions when I blacked out at the Peter Breinholt concert.  I've shared some accounts from other people, she emailed me hers tonight.  I know she won't mind if I share it here because it seriously was another manifestation of the love God has for me, another miracle to be grateful for.  Not my time to go!

August 26, 2022

I attended the Peter Breinholt concert at the Bountiful City Park on August 5, 2022. It had started to rain at the end of the concert when Peter Breinholt played 2 encore numbers. I was sitting directly behind Kim Ulmer, and had observed her throughout the concert. During the final encore number she and her husband were dancing and jumping up and down to the music. I snapped a photo prior to her sitting down at 8:40 p.m. It was brought to my attention by someone in the family that something was wrong with Kim. Kim was slumped over in her lawn chair. Kim was unresponsive. I called for help. Her husband called 911 @ 8:41 p.m. I called for help getting Kim out of her chair onto the ground. Once Kim was on the ground, I could not get a carotid pulse. Kim was agonal gasping/breathing. She was still unresponsive. I started chest compressions immediately. Kim’s eyes were rolled back, she was cyanotic, & diaphoretic. A young man was at her head ensuring her airway was open. Chest compressions continued. A young man called out that he knew CPR & asked if he could help. While he continued chest compressions I monitored Kim’s radial pulse and her unresponsiveness. After a few minutes of chest compressions I called out, “I’ve got a radial pulse.” At that moment, Kim opened her eyes, took a very deep breath, and started to come to. Chest compressions were stopped. I was talking to Kim, “Kim, you’re going to make it, stay with us Kim, you’re doing great, the paramedics are on their way.” The Bountiful paramedics arrived, and Kim was responding, and breathing on her own with normal inspiration and expiration.

This is a video she sent me to explain how I was breathing.  Or wasn't breathing.  

She said she had considered heading for the car when the rain started, but didn't.  Just after that is when I needed her most.  Coincidence?  I don't think so. Celestia was ready in a split second to help me.  There were others in the crowd that could have helped me as well, as others saw what was happening and came to help her.  But she was right there, right behind me, and only one minute or less passed between when I blacked out and when she started compressions.  Remarkable.  Miraculous. We will be friends forever, tied by this series of unexpected events that changed us both. 

I've been reading about agonal breathing this morning. I didn't have a heart attack, I had sudden cardiac arrest. A heart attack is a blockage in the vessels in the heart. Sudden cardiac arrest is an electrical problem. Only 7% of people who have sudden cardiac arrest survive because bystanders don't realize the gasping for air isn't breathing! Knowing that makes all of this that much more amazing!

That's all for tonight.  It's late and I should try to sleep.  Count your blessings friends!  Love you all!

Holding Steady

Scans - The bone scan did show tracer uptake in places related to chest compressions (ribs on the right side and sternum), so the bones definitely cracked during compressions.  Nothing new in the other places the cancer isn't already living.  The CT scan for abdomen and pelvis didn't show anything new or significant.  The chest CT showed that the lump behind my clavicle is growing a little bit, not enough yet to be alarming.

I'm meeting with a cardiologist on Wednesday for the monitor thing.  Hopefully the heart stuff is all wrapped up by Aug. 31 because Sept. 1 our insurance plan year starts over, so our $5,000 out of pocket maximum starts over again too.  Anything that happens before then is "free"!  I can't believe this is the 6th time we've hit that new plan year.  I'd be interested to see just how much the insurance has paid for all of this since 2017.  I'm sure we got the better end of the bargain! 

I realized real fast just how many muscles it takes to hiccup/sneeze/cough/cry/laugh, to get up and down, get in and out of bed, on and off the toilet, etc.  Every day there is a little improvement.  I actually made dinner tonight!  We've had so much help with dinners, every single one is/was very much appreciated.  All I've done for 3 weeks is take it easy, binged a lot of TV, sat on the porch in the evening, go to bed late, get up late.  I'm over it, ready to move on and pull some weeds or go out with friends! 

Until I see the cardiologist, I'm not sure if I can mow the lawn or walk the dogs anymore.  My dogs think they're sled dogs when they're out together on walks.  If I try taking them one at a time, Pyper will find a way out of the yard to chase us down.  She makes so much noise it sounds like she might have her own heart attack if we don't go get her!  Some trial and error this summer helped us figure out her escape routes.  Marley just wants to be outside and included, but she's still impatient if I try to just take Pyper.  They've been spoiled this summer.  There has always someone besides me here to walk them.

The kids went to Camp Kesem this week (week long summer camp for kids who have/had a parent with cancer).  They had a marvelous time seeing friends they haven't seen since 2019.  The last 2 years have been "virtual" and really hard for all of us to endure!  Kesem has been a blessing, we all have friends we couldn't have any other way.  Our kids have gone since 2010.  I can't believe it's been that long!

The Crazy and the Crazy Blessings!

The Back Story:

I think I mentioned some of this in another recent post, but here it is again so it makes sense in my mind.  When we were in Montana, we had an amazing time but it was a hard time too, because of the physical limitations I have after 5 years of chemo.  After a short hike going down to a beautiful waterfall, we had to come back up to get to the car. This was .3 miles friends.  Not a big deal at any other time in my life.  When we reached the parking level, I had to sit down on a rock wall because my heart was beating out of my chest and I couldn't catch my breath.  I asked Mat to bring the car to me, it saved me about 25 feet of walking.  Hindsight is 20/20.  If my episode had gone on a few more seconds while I was sitting on that wall, it could have been catastrophic!  EMS would have been so far away, getting to a hospital in time would have been near impossible. Friday helped me see, again, how much God loves me.  It wasn't my time, but it was a wake up call.

More Back Story:

Bountiful City does a summer concert series every Friday during the summer.  Early this season I saw that Peter Breinholt was coming, and we got pumped!  His first album, Songs About The Great Divide was a staple CD in our cars and CD players in our early years of marriage.  Those are the songs I know and love the most.  My favorite song is called Birken Street.  He hadn't played it yet when they "wrapped up" the show, then they came back on stage and did that song.  😀  That's the one where people predictably come up to the area in front of the stage and jump and dance and sing along.  I haven't mentioned that we were on the front row, ... because Peter Breinholt!

Mat and I really enjoy these concerts.  Last week, it was a group that did pretty much every Beatles song ever written and it was so fun!  But I was a little distracted by a petite grandma who was there with her family (kids, grandkids).  She had so much energy and was running after the littles, and tag-teaming with her husband, and singing and swaying and clapping. 

The Crazy:

Friday, Me and Mat were in the fray, at the front, jumping and dancing to the beat, when I suddenly got light headed and went back to my seat.  That's the last thing I remember.  Everything went black and silent.  The next thing I remember is waking up surrounded by paramedics and sirens blaring, and I realized all that was for me.  They put me on a stretcher and between the paramedics, police and fire, I see this little, petite grandma with a huge smile and mouthing to me "you're OK!" while giving me two thumbs up.  I had no idea at that moment that I was saved by her, so grateful.  She wanted to make sure I saw her, and I did.  And off we went!  All I could think of was, "where's Mat?  where's my husband?"  Now, I'm going to have to rely on what people told me.  

The friends we went to the concert with said I immediately put my head back and started breathing really fast.  She reached over and touched my hand and realized I was in trouble.  The lady sitting behind us is a nurse.  She also realized I was in trouble, she immediately jumped up and did all the right things.  "You! Go call 911!"  That was to Mat.  "You!  Help me get her to the ground!"  She checked my pulse and immediately started chest compressions because she couldn't feel one.  Another man with medical background verified the pulse thing and came to hold my head in a position to make sure my airway was clear.

It was very apparent to the hundreds of people at the park that there was an emergency up front.  One dear neighbor said this when I told her I didn't know if she knew what happened:

Yes! You were gone and we were very aware! What a miracle a nurse was there to do CPR and bring you back!! I had just been watching you and Mat dancing and then was talking to someone when all of a sudden I saw someone doing CPR over where you had been. I knew it was you and couldn’t believe it! You’d just been dancing!! Even after they got your heart going, you looked so grey and your eyes were still rolled back. In that moment I wanted to do something but couldn’t, so I just offered a silent prayer for angels to come and help you from the other side. You already had earthly angels helping you. And about five seconds after that you took a big breath and opened your eyes and looked surprised and then gave a big smile to those around you. I think everyone breathed a sigh of relief at that moment. I know you had angels around you from both sides of the veil!!  I’ll be anxious to read your experience! Please don’t hesitate to let me know if you need anything!

 Her grown daughter said:

I was so relieved to hear that you're ok. That must have been so scary for you! But I have to tell you that what happened last night was miraculous. I saw your face. You were gone. And then later to see you smiling and responding was nothing short of a miracle. That woman who did CPR on you was your guardian angel last night. It was just incredible. Please know we are praying for you and your family ❤️❤️❤️

All of this was completely miraculous to me.  God knew.  God knew it wasn't my day to die.  God knew who needed to be in the same place as me to get me through all of this.  There is purpose in this near death experience.  There is so much good that can come to the world when good people do great things for others in need.  

Just after they rolled me in and got me settled at Lakeview Hospital, they took me back to get an x-ray.  I still hadn't seen Mat, but he was there with our friends after I got back.  I burst into tears and asked them what in the heck happened. I started to get little details and piecing it all together.  I found out there are no broken ribs, which was a huge relief because I have several that are being eaten by cancer.  I kind of joked that since it was Peter Breinholts' fault I was in the ER, the least he could do is come visit me.

Just for the record, I like watching Chicago Med, and their emergency department is NOTHING like real life.  Obviously.  I thought, "you mean you really have to wheel me down these empty corridors to get an X-ray?  There aren't X-ray machines attached to the wall in every room in the ER?" Chicago Med is way more efficient than Lakeview Hospital.  😂  The thoughts that go through my head.  Sometimes it makes me laugh and sometimes it worries me.

I hung around my little slice of ER heaven for a hefty 6+ hours before being moved to a room.  The reason was there weren't enough nurses on staff to add me to the third floor.  I wondered if the on-call nurse was coming from Evanston or somewhere.  The ER doc was grumpy and annoyed at my choice of drugs I take at night to survive.  I didn't get any of my night drugs, only a pain pill.

After a long, sleepless night (because I couldn't shift or adjust or hide the lights on machines or keep people out of my room) morning came.  They weren't attentive to my morning medications, despite being told what they were.  They only gave me 1 of 3 morning meds, and it wasn't a pain pill.  The doctor on the 3rd floor was attentive and concerned, but it took until 2:00 today to get an ultrasound (15 minute echocardiogram), with no results until after we left.  That's when Peter Breinholt showed up to visit us - he seriously came!  Right after we left!

Echo results: There's a sudden urgency to make sure I go to a cardiac clinic on Monday and pick up a holter monitor so they can see 3 or 4 days worth of echo data.  I'm going to send a long note to Dr. Buys detailing what happened and have her help me navigate what comes next, including the holter monitor.  I have welts on my skin where their heart monitor sticky things were.  Not super excited about doing that for a few days.

Time. When that is all you want.

Some river in Glacier, everything
is SO beautiful!  While Utah
scorched in the 3 digits, we sat
at in the pleasant 70's and 80's.
Hmmm. Why don't we live here?!?

I lost a cancer friend this week.  I don't think she made it to her 2 year anniversary - she would have told our group.  She reached out to me immediately after her first zoom group meeting.  She had tons of questions and concerns, I had a few answers.  I helped her know that what she was thinking/feeling/anxious about was totally normal.  It was OK to be angry and grieve what won't be.  We became fast friends!

When we go in for a chemo infusion, there are always labs.  When they looked at her liver numbers, it was trouble.  They ran more tests and figured out that tumors had blocked the main bile duct, so she was out of options.  They gave her 2-4 weeks and sent her home on hospice.

We spent the last week in Montana, specifically Glacier National Park.  It was a bittersweet trip for me because that was something I had on my bucket list.  Wednesday was our 28th anniversary, it was a happy day.  That was the day we picked up a ton of rocks on a riverbank that are the Montana colors: red, green, black and everything in between.  We joked a lot about how silly it was to fill the back of the Pilot with rocks!  I'm putting said rocks in our park strip to make it a little more interesting.

Mat researched the "short" hikes along the Road to the Sun and to Lake McDonald.  I can hike downhill all day long, getting back up is another story.  I am so out of shape physically and emotionally.  I had to stop every 30-40 feet to let my heart slow down and catch my breath.  I apologized to Mat every time, he is always patient, supportive and helpful.  He would never be annoyed that I can't keep up with him. 

It was Sunday morning when I read the news that Tina had passed away.  We were driving through Idaho, I just looked at Mat and said, "Tina's gone".  He understood why I was so emotional.  I had a war in my head for a while, thinking about how unfair and wrong it is that people my age (and younger ... and older) die from this disease that I have, and are forced to mourn what will be left behind.  I stayed silent for a while, Mat understood why.

Sunday we drove 3 hours out of our way to fulfill another experience from my bucket list - biking the Hiawatha trail in eastern Idaho.  We couldn't get bikes sooner than that.  This was the same day I found out about Tina.  It's a 14 mile trail one way, "all downhill" is what I heard about it.  You bike through the dark tunnels that eventually open up to beautiful vistas of wilderness, then a ways down, another tunnel and another view point.  They have people that "sweep" the trail, do their own riding to check for people that need help, but also to make sure the last bikers make it out on time.

I'm glad we did it but it was another experience I really struggled with physically and emotionally.  The first two miles are through a completely dark, dripping wet and muddy train tunnel. Everyone had little lights on their bikes so you could see who was coming the other way, but I struggled to keep the bike from slipping on the mud.  All I can see is what I'm about to run over.  I was trying hard to keep the bike steady and avoid the small children coming at me. I was pretty uptight when we finally finished back where the trail started.  I was grateful to be in the sun again with our car close by, ready for loading our bikes to return them.

My sister has a better phone than mine, she caught
the Aurora the night before we got to her cabin in
northern Idaho.  We were anxiously watching the
apps, but they didn't give us a show in Montana. 

I wish we had the flexibility to move somewhere else.  Like northwest Montana, or Alaska, or Pacific NW, or any number of places! That was always a bucket list thing for me, to break out of Utah and explore other options.  We should have done it when it was feasible, when the kids were little.  It's hard to do when we depend on the steady job with great insurance, and a world class cancer hospital so close.  We'll continue traveling, we have a tropical adventure coming up in the fall.  Then we'll make more plans after that trip.  Mat is so good to me!  We've been through our fair share of trials, but we support each other and work together.  I love him more now than I could have 28 years ago!

Gratitude and Grumbling

A funny meme from 2020-still true!

I had a long talk (and lunch) today with one of my favorite people, Wanda Murphy, a.k.a. Sister Rhoades.  We were mission companions in Heidelberg Germany.  Old City Heidelberg has a city center where the homes have orange clay tiles for roofs, it has a fußgängerzone (pedestrian plaza) where we spent countless hours, weeks, months street contacting. That's where the old drunk Albanian man proposed to me.  It's one of the towns where, even when things weren't going well with the work, we could laugh and "lift" each other when we needed it.  We prayed hard, worked hard, and we laughed hard!  Sometimes we cried hard too.  We scored a lot of gelato from the cute Italians (man, they were handsome men!) from the shop below our apartment.  We had an appointment scheduled in a place where we had to ride the bus, not a street car.  When we got off the bus, a man, probably drunk, came toward us.  When he got too close to Wanda, she started swinging her bag full of Books of Mormon to keep him at a distance.  And then we laughed hysterically at the irony of keeping away him away from us with a bag full of Books of Mormon!  😂.  Heidelberg is where we met our Russian friends, Zourab and his sister, Maya.  They lived in a very dumpy part of town where the refugees lived.  We had a district leader who would call us every night and say, "Was haben Sie haute getan, um das Himmelreich Gottes aufzubauen?"  What did we do today to build up the kingdom of God?  We worked our butts off, and we ate a lot of Milke Sahnecreme and gelato.  She helped me love all people and she continues to be such a positive influence on me, I'm so grateful when we can get together.  I hope I'm remembering all those details correctly.  If nothing else, it makes for some good stories!

As the story goes, I got to Utah State fall quarter 1993 and ALL I WANTED was to have Sister Rhoades with me!  So I coerced her (that's what it felt like on my end) to come to Logan and start school winter quarter. And she came!  Winter quarter--when I was dating Mat long distance.  I ended up moving home after that quarter to be closer to Mat, "just in case." I felt so guilty getting her up there just to leave after she came.  She's teaching nursing at the technical college in Roosevelt and Vernal now.  She said there's no way she would have worked so hard for a degree in nursing, then teaching it if she hadn't gone to Utah State.  I told her how I've never forgotten how bad I felt after getting her up there, then moving home.  I hadn't thought about this experience until she brought it up in our conversation, there's a little guilt I can let go of.  

I got a text a week or two ago from McKinley.  We were outside working on our park strip with a little help from McKinley.  She laid down on the grass in the shade, obviously something was off.  A neighbor up the street was walking down with her daughter with arm loads of food for us!  Of course, I'm so grateful anytime anyone thinks of us in that way!  Well, McKinley told me in her text that she doesn't understand why I'm so happy when she's holding in her pain.  

The next morning, we had a chat about how every one of us gets to decide how to handle hard things.  I assured her that in the beginning, and a little since then, it was so hard, and I was so angry, and questioned Gods timing and will for us.  But eventually, I could turn it around and see the good that was coming from my cancer, even when it's terminal!  And if she's sad or mad, she can talk to us, and it's totally normal to be mad and sad and angry and cry about this.  She just had her 13th birthday.  In October 2017, I said my goal was to get to her to high school graduation and my doctor said "let's see what we have to do to get you there!".  Frankly, I don't think I'll last that long.  I'm not being a pessimist or negative, I genuinely feel like crap sometimes and can't see that far out.  I think I will see her to high school, but probably not graduation (2028 if I'm calculating correctly).  

I feel like there's something going on in my torso, but nothing has come up on scans that way.  Remember, my liver is where this all started.  At the very least, I have an organ in there that is compromised.  I sincerely hate thinking about this, but as time goes on, the clock speeds up.  I'm going to keep on going, whatever it takes, until I say otherwise.  That WON'T happen until our 30th anniversary, 2 more years, because we made a goal on our 15th anniversary that we would make it to our 30th.  

Sorry to end this on a downer!  I really am OK most of the time, but this topic never leaves my mind.  I don't know how to be a "normal" person anymore, so I try to fake it the best I can.  On another note, I "had" 19,000 pictures in my laptops photos app--which are no longer in my photos app.  They are still on my phone, and backed up to Google and Amazon and an external drive (I hope).  But it's alarming to see nothing when I want to add a picture to the blog!

Switching up chemo ... twice!

(I started this post a few days ago, just catching up now)

I switched chemo on Friday.  My doctor said she would usually want more time before switching away from Kadcyla, but after two scans with a little bit of progression, I wasn't excited about that.  So I'm back on Herceptin (infusion) and started Xeloda Friday.  Xeloda comes from a specialty pharmacy in Tennessee.  The dose is 3 pills, twice a day  (3,000 mg total).  I've taken it for 2 days, only did two pills after lunch today, and don't think I'll take more today.  You have to have eaten with this drug (which I did) but still ended up nauseated.  Last night I ended up taking 1 Zofran for nausea.  I saw the warning that said "may cause headaches" - and boy it did.  I've had a headache for the last 24 hours, despite several doses of Tylenol. I can't take any anti-inflammatory (Ibuprofen, Naproxen) because of the blood thinner I'm on.

These headaches start in my jaw and face, then move up onto the top of my head, with severe pain from ear to ear, and in my temples.  Tonight, I feel just like I did last night and after getting very little sleep, and I'm beside myself.  Mat ended up calling the on-call doctor last night, so when my doctor saw that, she called this morning. Don't remember now what she even said, of course, but I sent her another message tonight.  I have a prescription for Tramadol, a "mild" opioid, but it doesn't work with headaches (I tried that last night too).  She called me in prescription that looks like Excedrin on steroids, 2 of the 3 ingredients are in Excedrin.

In relative terms, I've been able to get through 4 ½ years of treatments pretty well.  Of course, there have been ups and downs!  I feel like, now that I have all my hair back, I can "fake" normal pretty well.  But days like yesterday and today are when I realize how much cancer does affect me.  Gratefully, Dr. Buys sent a message and said to stop taking Xeloda to see if the headaches would go away.  And they have!  I will let her know on Monday so there's time to come up with another plan of attack on June 17th, my next chemo.

Yesterday, I made a plan with Sarah to go to a nursery I'd never been to.  I don't know how there is a garden center in northern Utah that I've never been to, this one has been around for many years!  Willard Bay Gardens was an adventure, I knew I wouldn't/couldn't! get out of there without buying some.  I only bought 18 perennials, so I did a good job of controlling myself.  😂

Today (Saturday) I totally faked normal, as I worked in the yard much of the day AND I went grocery shopping!  I had a long list of things for Mat to help me with, things I couldn't do on my own.  I've waited and waited for him to be done with school for the year, for a month I've written and lost lists of things I need his help with!  Today we worked on some things like, putting our house numbers by the front door. It was a good productive day despite Mat not feeling 100%.

 

Facebook Update

 I talked to Dr. Buys today. She said she doesn't like changing treatment without giving it a real chance/changing too soon. I don't want to go another 3 months after the progression I've had! She told me what the alternatives could be. Starting with my next treatment in 3 weeks, I will go back to Herceptin (treats the Her2 side of things) and Xeloda (systemic chemo that should treat everything). I won't lose my hair with either of the these. Yippee!

Zoom Group

We had our support group today.  I came away with new insight and resolve to keep plugging along, keep fighting the fight. It was a "processing" group today.  The questions we were asked were "What has been hard about having stage 4 cancer" and "What has been easier than you thought it would be?" So it got me thinking.  What is hard for me right now?  Chemo treatments are hard, the few days after chemo are so hard. 

But I think the hardest days for me are when crappy scan results come back.  I feel mad and sad and depressed and introspective.  It opens up a whole can of worms and questions about how much longer I might last, if / when chemo will change, and how that would affect the way I am functioning right now?  Every scan brings more anxiety than they did in the beginning.  I'm approaching 5 years since my diagnosis and feel really blessed to have made it so long.  I'm one of the "veterans" of our support group.

I get angry when I see commercials on TV about miracle drugs (that can cost thousands of dollars a month) with happy, smiling women skipping through proverbial tulip fields with their happy, smiling families. I know too many people who rely on these expensive drugs to stay alive.  

I get angry at how pervasive breast cancer is.  Two friends in our neighborhood have contacted me in the last two weeks after being diagnosed with BC.  I'm grateful that friends know they can come to me for information when there are so many questions in the beginning!  But breast cancer sucks, it seems to be all around me.

Another hard thing is having neuropathy in my feet. When I lay down at night, it feels like my feet are on fire, like I'm walking over hot coals.  I see my doctor next week and I have acupuncture scheduled the week after that. I have lots of questions for both of them!

If you didn't know me, you'd never look at me and know I'm terminal.  People think that if you have cancer, you won't have hair.  Not all cancer treatments make your hair fall out.  I have a handicap tag in the car, and when my feet hurt so bad, I use it!  Sometimes I feel like people question how sick I really am.  Not cool.  

After all that venting, there are also things that have come relatively easy for me.  After my diagnosis, I was angry, confused, so sad about how it would affect my family, I questioned Gods timing and will for me.  In time, I've found peace with all of it.  I try not to take a single day for granted. I'm doing what I can to help my family through it, I'm working on my legacy projects so they won't forget how freaking awesome I am.  It's OK, I'm OK.  When I'm OK, my family is OK.

Huntsman has been a huge blessing.  The staff and doctors and resources (like acupuncture, the writing group, my social workers, the support group) have been a Godsend.  Having so much support has made all the difference for me.  But all that had to change during the pandemic.  For a long time, only patients were allowed inside the hospital.  Imagine having life and death conversations with your doctor by yourself.  Imagine laying in a hospital bed with complications, being all alone. Or waiting around for scans and treatments with no support people.

In 2020, I was having a complete melt down after losing our in-person group, not being able to bring support people to appointments, feeling so isolated and lonely!  After everything we lost in the pandemic, I got the reluctant blessing from the social worker over our group to create a group for the women who wanted to get together face to face.  Really, it is nothing more than getting together with a group of friends for a meal every so often.  It was a really hard call for our social worker, but I was so grateful she allowed me to arrange it. I set up a group text with everyone who was interested in getting together occasionally. It's great to be able to see faces and give hugs!  One friend had the brilliant idea of having it on Wednesdays at noon because that's when we're used to being on the Zoom for group.  It's worked out great! We have 2 Zoom groups a month, and two lunch dates a month. I would post our last lunch picture here, but HIPPA ...  Lisa (social worker) might have kittens if I did.

I feel blessed to be where I am today, despite the damn (yes, damn) progression the last two scans showed.  I meet with my doctor and get my next chemo on Friday.  I have a good number of questions I need answered, and Mat will be there with me.

What's blooming in my yard