Catching up and cherishing the moments
This is the day your life will surely change
I’ve written this post many times over the last couple of months. I don’t know if I’ve been putting off, just didn’t make the time for it or just avoiding it with so much on my mind.. So much has happened leading up to today which is a major milestone in this journey. I’ll do a recap - stay with me as this may be lengthy one - so we can all get up to speed - get a coffee or something too. Plus the new moon in Leo has driven me to write this to have a clean slate. Cheers to the new year and bringing a breathe of fresh air into my life.
Today marks my last infusion - #32 - at the MHealth Fairview Ridges Cancer Center in Burnsville MN, Friday January 26th. If you’ve been following since the beginning, my oncologist, Dr Jessica Lee was who I met at my initial diagnosis at Edina Fairview hospital. We connected and we followed her to Ridges which although 15-20min drive past Edina Cancer Center, it was well worth it both physically and mentally. We learned our beloved oncologist is leaving the organization and we were distraught but happy for her to take time for herself. Life is too short! Seamlessly we continue our new treatment at MHealth Fairview Masonic Cancer Center on the University of Minnesota campus. Much closer to us - 10mins and a new oncologist - Dr Arjun Gupta who we were made aware of over a year ago during the Colon Rectal Cancer Coalition Gala. We donated and got to know his research on Time Toxicity. Over the year, he happened to be the attending oncologist during a hospital stay where we connected in person and he had become a sounding board for many things - second opinions, clinical trials, doctor referrals. We are looking forward to being cared for by him and his team! New adventures, new chapters….
The last couple of months has been an adventure of exciting news, clinical trial conversations, family time, and of course heart warming and heart wrenching situations. Life with uncurable cancer is definitely a time to take every fucking thing in and embrace it good and bad. It is a rollercoaster of everything.
Second Opinions & Clinical Trials
We were fortunate to travel to some places in the month of November. I can’t say they were vacations by any means, but more of an educational journey with some incredible art thrown in,to find answers and opportunities to get more time back into our lives. After months of connecting with MDAnderson in Houston Texas and Mayo in Rochester Minnesota, we were invited to have conversations with them, and what we found out were nationally recognized color rectal doctors and their teams - Dr Kopetz at MDAnderson and Dr Jin at Mayo. We went into the meetings with open eyes and hearts but I have to tell you the experiences were night and day. During the visits, our course of aggressive treatment was validated and were informed of clinical trials that may benefit me in the future - specifically focused around my BRAF V600E mutation which is a mutation that causes my cancer cells to be more aggressive in spreading in my body. The cells tend to find my healthy cells faster and take over. It is a catch-22 being in a healthy fifty-ish body that has lots of healthy cells because if I was 5-10 years older, the BRAF cells would not care less and not spread as fast. The whole thing visualizes in my head like a video game of bad guys taking over my healthy body and the only thing that can stop them from spreading are my chemo treatments. After we got back from these trips, we were informed that we may qualify for a clinical trial focused on my BRAF V600E mutation. We would start at the end of December after I qualify.
New Treatment
Speaking of this new found clinical trial, the month of December was a mix of routine and unfortunately unexpected visits to the hospital. The first half of the month, we were in a straight path on the rollercoaster, no ups or downs just a nice even ride. We relished the time of being back in life and managing my every two week infusions. My last IV infusion was on December 6th because my body needed a three week chemo break to detoxify a bit before my second line treatment and clinical trial started on January 5th. That was three whole weeks of “freedom.” I definitely took advantage of the time to go out for dinner, nights out with Jeffry, random visits to the hospital, get out of the house, meet new people, be in the office, drive around aimlessly, get ready for the holidays, and overall just living life. As the holidays approached, my breathe was labored and I started throwing up randomly.
On December 20th, we went to the ER and kept me there till Christmas Day for observations - to understand if this was viral, bacterial, fungal or the cancer. Turned out to be a mix of both. My care team was exceptional. I had consistency with my nurses and doctors all trying to keep me comfortable and figure out the source of this. Our holiday plans to Chicago were canceled. Jeffry decorated my hospital room with one of our trees. My family came up to spread holiday cheer. I was released the evening of Christmas, not enough time to enjoy the moment as we had somebody come home and set me up with an oxygen tank and all its accessories to ensure I always had access to this precious air to supplement my breathing. I was relieved to have this but more excited to be home with Jeffry and sleep in our bed with no beeping noises.
A week went by and I was back in the hospital on new years day. My breathing didn’t get better, I had a fever, and my blood pressure was low - systolic under 100! Back to the ER and the oncology floor of 8th level of Edina Fairview. Familiar faces were back doctors, nurses, cleaning folks, etc. Back to assessments but this time worried about missing my clinical trial or most importantly still qualifying. At this point, I didn’t have chemo for almost a month. My CT scans revealed what I was most worried about, my cancer spreading in my lungs and the new peritoneal spots that have are likely cancerous. My gut told me that without chemo, my breathing was being affected with the cancer spread and the new spots in my abdominal cavity. I was right - can you imagine the speed in only three weeks! Fuck the freak out. We tried to get our clinical trial early but protocols prohibited it. We would have to wait another week to start any treatment. Unfortunately, two days before my clinical trial start date I was disqualified because of my low hemoglobin and general state. We were devastated BUT a couple of silver linings 1. As you know, we were assigned an oncologist who was administering the clinical trial. We didn’t connect from the initial meeting so we were both apprehensive with his approach. With the disqualification, Dr Lee called us and told us to “come home.” This statement meant so much to us to be back under her care and she took fuckin charge to get us back to baseline. 2. With her direction, I could start chemo and my new treatment early the next day. On Thursday January 4th, I started my second line of treatment with oral chemo (Braftovi) and IV chemo (Erbitux).
What we didn’t expect was my allergic reaction to the meds and the cardiac side effects that came with it. My oxygen levels dropped, my blood pressure spiked and I developed a rash around my neck - or décolletage en francaise, which then increased my heart rate and I went tachycardia - actually this was the third time in 48 hours I ended up tachycardia. The emergency express team - don’t know if that is the right term! - then came back to my room - did I mention, for the third time in 48 hours! - to treat the allergic reaction and get my heartbeat down from 180! The weird thing is that I didn’t feel any of this and such a surprise to me. They wanted to use this CPAP type helmet so I could get oxygen to my lungs but I was so freaked out that I couldn’tput it on. My mind was frantic and for the first time in a long time really I was scared shitless. So many people in this room trying to figure things out and it felt a little out of body for me to assess what was happening. The hardest part was seeing Jeffry in the corner of my eye watching everything and seeing him cry and scared himself. To tell you the truth, this is the first time for me to really remember that night. I sit here now crying reminiscing about that moment.
For fucksake what the fuck was happening? The assessment was that the chemo caused an an allergic reaction and that I needed the dose to be slowed down. Steroids, Benadryl, and other drugs had to be included in my pre-meds to prevent these reactions. We have learned that cancer treatments are all about trial and error and if caught at the right time - life saving. The next day our attending oncologist, asked if we wanted to continue to finish the dose. YES YES. I know all that happened that evening before but we didn’t want to lose the chance to not finish this dose - I think Dr Lee’s voice aggressive approach has been instilled in me and that I’ll risk anything to get precious time to my life. Instead of 2 hour full dose we extended this second dose to a 4 hour dose. It worked. Nothing happened and I finished the first infusion. Yeah! Thus affecting our future infusion going to a split dose on Thursday and Friday for four hours each. We would go with this for a while till we could figure out to get back to one day. We will take the time to get there but for now, we’ve gotten through three infusions to date - today just finished #32 chemo infusion. - all without incident and my breathing better every week. Not to jinx it but this week has been the best week of the last month, feeling more energized and feeling that I can conquer anything. Bring it the fuck on. Maybe it is this Leo moon this week? I’ll take that.
New Adventures
With Dr Lee’s departure, we start with Dr Gupta next week Monday January 29th and our new infusions at the Masonic Cancer Center on Thursday/Friday February 1st and 2nd. This is the start of our next book - I think the first book’s chapters is done back in November especially with this transition of care and new treatment starting off the this new year. 2024 begins with a new outlook in our lives and hopefully gain the time back that we are searching for.
Reflections
We watched American Symphony, the story of Jon Batiste’s work in the last year and his relationship with his wife Souelak Joaud who is a leukemia thriver. Such a great movie on love, caregiving, and the effects of cancer on two individuals that celebrate all the things in their lives regardless of circumstance. A must watch on your list!
All the choices that we are making is to continue living. Surviving is an outcome of this not necessarily the goal. I survive and thrive to live so I can enjoy every moment for myself and with the people that I love and cherish that get me through the every day. This includes Farley the Frenchie too. His unconditional cuddles and looks are all that I need sometimes to change the frowns into smiles. I hope you are still following me on this journey. I know I haven’t written in a long time but hope to be more frequent as I balance this form of therapy with my own physical therapy. So much more to life than jus this cancer that i want to live. So much more to what I want to do and who I want to be with. I try to be inspired everyday and hope that continues as I look at everyday as gift with eyes of curiosity and yearning for the next day and what adventures and the life that are ahead of me. Come with me for these 30+ summers. I can’t wait!
This day your life will surely change
I’ll leave with you with this song that has been buzzing in my head the last couple of months. A song by my all time favorite 80/90’s band The The with This is the Day
Well you didn't wake up this morning 'cause you didn't go to bed
You were watching the whites of your eyes turn red
The calendar on your wall was ticking the days off
You've been reading some old letters
You smile and think how much you've changed
All the money in the world couldn't buy back those days
You pull back the curtains
And the sun burns into your eyes
You watch a plane flying
Across a clear blue sky
This is the day, your life will surely change
This is the day, when things fall into place
You could have done anything, if you wanted
And all your friends and family think that you're lucky
But the side of you they'll never see
Is when you're left alone with your memories
That hold your life together, like glue
You pull back the curtains
And the sun burns into your eyes
You watch a plane flying
Across a clear blue sky
This is the day, your life will surely change
This is the day, when things fall into place
This is the day (This is the day)
Your life will surely change
This is the day (This is the day)
Your life will surely change
You are an inspiration. Miss and love you both.
All the most positive thoughts to you and Jeffry. Thank you for the update, my lovely friend! XOXO