Twelfth and Thirteenth Week of Treatment - 11/8/24

Wanted to post another update this week covering my last two treatment weeks.  Over the past couple weeks, I’ve done a few fun things, going deep into my mental and spiritual health, and appreciating the joys in life.  This is a little bit of longer post this time, I just had a lot to say 😊

To start, just sharing some fun things I’ve been up to lately.  I know Halloween is behind us, but last month my mom and I went to the Jack O’ Lantern Spooktacular at the Minnesota Zoo with my best friends.  For those who don’t live in MN, it’s a cool event every year the zoo puts on which includes a trail of hundreds of carved pumpkins lit up to see.  It was my mom’s first time, so it was neat getting to show her that!  Then on Halloween, Obie and I dressed up as each other (see attached photo).  We’re just a couple of goof balls having fun!

A couple weeks ago I also met up with some of my friends from work for “Afternoon Tea.”  It was a nice afternoon of catching up with friends, enjoying some good food and drinking delicious tea in those little teacups they serve, like we were in a little French Tea Cafe.  We all dressed up in cute outfits to immerse ourselves in the experience ha.  I’m so grateful for all the friends I’ve made from work over the years, I feel so loved and appreciate the memories with every one of them, work and personal.

During that next week I participated with my good friend Kelvin in a 300-piece puzzle competition.  I’ve always wanted to do one of these puzzle competitions and this was my first time!  Our team name was “Misfits” and we finished in 6th place out of 12 teams around 53 minutes.  Pretty proud of where we landed considering it was my first time.  While stressful at times, it was a good stress, and just had to remind myself to take a deep breath and just do the puzzle like I know how.  Can’t wait to do another one sometime! I got to keep the puzzle from the competition and my mom and I gave it a go at home to see if we can beat 53 minutes.  Funny enough, we actually also completed it at 53 minutes!  I guess the next puzzle competition I will have to really beat that time then.    

As far as the past two weeks of treatment goes, those have been going well.  I’ve gotten a visit twice now from Gideon, the emotional support dog (see photo) that goes around to all the patients.  He is so sweet, he just sits and comforts me.  Dogs are the best.  Of course, Obie gets a little jealous when I get home afterwards!  If only we could bring our dogs into treatment!

My labs continue to show low red blood cell count and lower but normal white blood cells, but consistent with prior weeks which is good. There has also been no issue to get treatment with the IV fluid shortage too, thankfully.  However, this last week for my 3 infusions they changed my IV Infusions of Herceptin and Perjeta to now a shot called, Phesgo.  Apparently, all patients who receive both H&P ongoing have to switch to Phesgo due to the shortage.  Phesgo is a shot that goes into my leg and contains the same amount that’s in the IV form.  I had asked why I wasn’t given this to begin with and I believe it’s because it is very expensive and costly to insurance companies.  I think it’s a nice change since I don’t have to sit there for 2 hours while the drug goes through my port and instead just a receive a shot every 3 weeks moving forward.  Side effects with Phesgo are also supposed to be similar, however I have been getting joint pain in my knees, which I didn’t have before, but the doctors say this is all normal.  Other side effects are similar to prior weeks, but feeling a little more tired and weak in the afternoons, especially if I workout in the morning.  Being 13 weeks into treatment now, I am proud and amazed still at how my body is handling everything.  Taking time to thank my body for all that it is doing.  Our bodies are so wonderful. 

During this past week, I also met with a physical rehabilitation doctor as I’ve been having some rib pain and irritation, which may be related to a tumor that was on my spine.  The doctor said it’s likely related to a nerve that extends around the ribs and due to the treatment overall.  She prescribed a gel that will help the nerves and a cream for muscles if I need it for other areas around my body.  My neck and shoulders have been tight as I hold a lot of stress in these areas so I could use the cream in this area.  She did a body exam as well and I seem to have weak hip flexors, which is just a general weakness from treatment too.  I know Dr. Lassi said I should be eating 120g of Protein per day during treatment to help keep my muscles strong and have been trying so hard to meet this every day.  I think I do a decent job but might need to increase it a bit.  This doctor also recommended that I see I physical therapist every week that can help give me exercises to strengthen areas on my body that are getting weaker and soften areas that are tight with manual intervention.  Based on all this, I do think it’s a good idea to meet with a professional to help strengthen and work with my body overall, so I will be starting to go to a physical therapist weekly.  I am excited about this, since keeping my body in good shape is important. 

As for the wins the last couple of weeks – my Liver enzymes are looking really good and decreasing consistently with 36 for AST and 56 for ALT.  Normal levels are below 50 and I am almost at normal level for my liver enzymes!  I also got an Echo of my heart to test heart function, as these meds can damage the heart and all that came back normal as well.  I was also happy to see that the blood tumor markers CA 27.29 (breast cancer tumor marker), is consistently decreasing too.  Previously it was at 91 and now it’s 57.  Normal levels are below 39.  Feeling comfort and gratitude for these results and so incredibly hopeful for a complete response to the treatment at the end of these 18 weeks. 

So while my body has been a lot of my focus the last few months, these past two weeks I’ve been making tremendous strides in my mental health and starting to see some changes within.  For me, mental health is just as important if not more important than physical health.  We can be in the best shapes of our lives, yet if our mental health struggles, the whole body struggles.  I’ve been going deep into not just working on my mind but my spirit and soul as well.  I believe we are all just souls within human bodies and there is something to be said about the mind, body and soul connection.  I do believe that the mind can help heal the body. 

Now taking a step back to about two weeks ago.  I was struggling mentally.  You could read it in my update.  Almost every night I was crying at just the way my life was, is and loss of so much.  I was grieving and am grieving.  There is so much change, trauma and loss I am experiencing and taking the time to feel it all.  Some days are harder than others, and one of those days I was in bed at night just crying, feeling very sad and then something happened.  Now I really believe that something or someone was looking out for me in this moment, and I was meant to land where I went next.  I don’t know how, but it happened.  So after I had my moment of sobbing I then went to check my phone and go on Instagram, something to just take my mind off of everything.  I see my best friend Kelsey’s Instagram story at the top that I wanted to check out.  I went to try and click on her story to view and her story didn’t pop up on my phone, but instead, it was Cory Muscara in a white hooded sweatshirt talking in a Live video about “Letting Go” and “Opening the Heart.”  For those who don’t know who Cory is, he was a Monk, is an Author, Speaker, Seeker and does teachings on personal and spiritual growth.  He did a silent meditation retreat for 6 months before and is now teaching many others on what he has learned and experienced over his life.  I started following him on Instagram after I listened to his book a while back called “Stop Missing Your Life.”  So anyways, here I am after uncontrollable sobbing, just listening to him speak and it felt like he was speaking directly to me.  I ended up catching the last 2 minutes of his live video which talked about his new 8 week course coming up to let go and open the heart with whatever you’re dealing with in life.  At that point, there was no hesitation, and was called to sign up for this 8 week course called “Opening the Heart.”  Now also get this, the course’s end date is on 12/16.  Well my last chemo treatment is on 12/9 and my final PET Scan after treatment is on 12/16.  I would be ending my chemo AND this course at the same time.  Call it coincidence or whatever, but I was meant to take this damn course!

Now I know I won’t have all my grief or problems solved after this course, as healing is a journey, but I needed this.  I needed to see this and needed this course in my life to help me get through so much pain in time like this.  I’ve only been at this course now for about 9 days, and so far it has been transformative.  Each week there is a 2 hour session and every day there is a 30min meditation.  They are all recorded so I can watch them back whenever it works for me.  The meditations have opened me up in ways I have never felt before.  In just the first meditation, we started by asking ourselves, “Do you want to be here?” and giving ourselves consent to drop in.  I honestly felt my body was giving me a hug and saying “thank you for being here, I’ve been waiting for you.” I heard those words in my body and my heart.  Each meditation builds upon itself, and I have going deeper and deeper to connect with my body, my feelings and my soul.  Ultimately, I am having compassion for myself that I haven’t felt in a long, long time.  Telling myself that I got your back, that you’re safe and you know what, you are dealing with a lot, and I am here to take care of you.  I am also learning a lot, especially about Internal Family Systems.  That we all have exiles and protectors.  Exiles are trauma you experienced in your life, protectors are managers and firefighters that are protecting you from feeling those traumas or going there.  Protectors can be perfectionism, always being busy, people pleasing, etc. and firefighters are anger, rage, substance abuse, etc. that come out when your body is getting too close to that trauma.  Real stuff.  The ask is to identify those and provide loving kindness towards those parts of you.  For me, it’s bringing compassion to myself, and being my own best friend. Loving myself so hard, and so far it’s been quite amazing.

Lately our medtations have included words we have to repeat to ourselves such as “May I be safe,” “May I be happy,” “May I be healthy,” and each meditation, my heart opens further and further.  I sit there as tears roll down my face as I feel what it’s like to be safe, to be happy and to be healthy.  Words come up such as comfort, joy and healing for each.  Today, I sat with “May I be healthy” for about 40minutes.  I put my hand on my right breast where the tumor sits and I just pictured my heart opening up every time I said those words.  I pictured my heart sending healing blood all over my body and to the tumors, to heal the cells within my body and bring them back to me.  I do believe this is SO powerful and as I sat there today, I truly felt like my body was healing itself. 

All that to say, I am incredibly grateful that fate led me to this course.  It will be life changing for me.  This in addition to a therapist I have been seeing weekly has been doing wonders for me.  My therapist has been giving me art therapy.  In my art there is hope, pleasure, passion and an eagerness to live.  I have so many goals to pursue in this thing called life.  Yesterday I drew a picture of what it means to open my heart.  That is giving myself a warm hug, loving life and radiating love.  I drew a sun and a tree because I love nature and feel most at peace in nature. I am coming back into who I am at my core, who I am meant to be and loving all parts of me.  I don’t know where this is all going to end up, but what I do know, is today I feel warmth, for life, for the people in it, for the little things, and appreciating all that is and will be. 

Lately I’ve been seeing the numbers 11:11 or 1:11 on the clock quite often.  These are my Angel Numbers, which are perceived messages from the Universe.  Every time I see these numbers, I feel it’s telling me I am on the right path.  While this cancer path may not seem right, it’s the right path for me. 

To end this week, I just want to extend thanks and gratitude to everyone for your support.  I have been reading your comments and receiving your beautiful cards/gifts – they are bringing me happy tears.  I do feel so loved and know I am not alone.  I also want to especially thank my mom, who has been living with me now for 3 months.  Having you here means so much to me.  I am so grateful to not only have you as my mom, but my friend.  Currently my mom is back in New Mexico for a week, so I’ve been having some alone time this week to regroup.  I think we both needed the little break, as breaks give you peace and perspective.  I know you’re reading this mom, and just want you to know how much I appreciate you.  You and dad, always. 

Love, Stacy