My 18 month journey with Cancer
Posted by Lisa Erickson on Jan 19th 2023
My journey with #Cancer. (long read).
8 Months post CART Therapy….
CART stands for Chimeric Antigen Receptor Therapy.
I NEVER saw this coming….
18 months ago, I felt a flash of pain behind my left kidney.
This flash of pain was different than anything I had ever felt before.
It was so unusual that I decided to go to the ER.
Prior to this..the only time I had ever been in a hospital was to birth my 4 children and for my knee with a car accident.
My physical pain was usually limited to migraines once upon a time.
I went to the ER fully expecting the pain to be a kidney stone or something.. Even though I have no idea what that feels like…
I had a beautiful conversation with the Dr…beforehand…she wasn’t going to do a CT scan but asked if I wanted it and I said.. “Why not, I'm here.”...
The same Dr. who left my room cheerful returned with a completely different demeanor…
I said, “What is it? Tell me.”
She couldn’t confirm but in hindsight I know she knew….
I went home with discharge papers still fully assuming it was an infection or something going on with my kidney..which scared me…
Then my husband read through all 10 of the discharge papers which I did not and on page 9 there it was potential Lymphoma…
I didn’t believe it..
It was a shock..
I didn’t believe it..
It’s not in my family.
I never think or worry about cancer.
I eat “good enough”..
Those were my initial gut reactions…
Either way, I wasn’t playing.
I called Dana Farber and within the next day, I was in Boston which began my initial cancer journey for 18 months.
It seems like as soon as I had a preliminary workup..the pain came….
This pain…was NOTHING I had ever experienced before with the exception of childbirth and even then I eventually had epidurals…
The best way I can describe it…
Imagine the fullest you have ever been on Thanksgiving.. So full you are begging your digestion process to begin!! So full you can’t get comfortable…and at the same time feeling like you are 9 months pregnant…then add contractions to it….
I couldn’t get comfortable AT ALL…
I moved to the couch downstairs to sleep because once in a blue moon I could find a contorted position that provided relief.
I wasn’t prescribed any pain relief… in hindsight I now know why…
(They knew the pain was from the cancer and as soon as I had chemo it would go away which is did).
We had to wait for the biopsies to come back but I heard Follicular Lymphoma tossed around…
Follicular. ..doesn't that have to do with hair follicles I thought...not in this case.
Up until this point my reference for Cancer was zill..
I thought you either got chemo and lived or died.
Modern medicine has come so far!
I had 2 business commitments while we were waiting for my results..I chose to honor one in full pain and the other I knew my limits and canceled.
Meanwhile, I had started throwing up from the pain in the middle of the night.
This was a pattern I knew.. From #migraines… sometimes my body would make me throw up to release some of the pressure.. And this reemerged after years of it not happening…
I called my doctor…
She said, “If you throw up again, come straight to the ER.”
Well I didn’t want to do that so I forced myself NOT to throw up again..
I made it through the week in UNSPEAKABLE pain…to get home…
I was trying to hide it from my children but they knew something was wrong.. Mom was on the couch writhing…
Finally, after 2 more days…I let myself throw up…this was my way of giving myself permission to go to the hospital.
I packed my stuff and my husband drove me into Brigham & Womens in Boston..
We waited for maybe 10 hrs.. And then I was admitted…
I finally received some crazy painkiller (I think it began with a D) that literally felt like a ton of bricks descended on my whole body..took me a minute to breathe through that.. But I finally had PAIN RELIEF after 2 weeks….
And then…it's kind of a blur…the next 10 days in the hospital.
I was comfortable pain wise but sh*(&^ was getting real.
By this time the biopsies confirmed Follicular Lymphoma as well as something else labeled Transformational Occult something…(my woo peeps will see the irony).
It was on the move…
My oncologist wasn’t saying it but he knew….
Emotionally I went through alot…at times…
The What if…
All I could think about were my children…
I still wasn’t thinking about myself.
Then I went into this space…
It was dark, sparkly, velvety, loving and rich….
I heard, “You have a choice Lisa. You can stay or you can go.”
This place..this void is intoxicating…and full of love. It’s very hard to pull away from it.
But I did…
Because of a Mother’s Love.
Then I heard…
“O.k. then you will have to change your story.”
Anything I said.
Then I heard,
“Right now you are envisioning a world where your children are living motherless and you are feeling how people might judge them and feel sad for them in some kind of way and you are projecting this depressed kind of life.
You have to change this in you..
Your children chose you.
Before they were born, you all knew this would happen and agreed to being in it together. This experience will teach them & you to be more compassionate & empathetic.”
I agreed…”O.k., done.
And whoooooooshhhhh I was back in consciousness.
By this time…the scans were showing cancer was spreading into my organs…
The next day in a room full of Harvard trained oncologists and my personal oncologists. (Because you have a team that cares for you…)
I demanded respectfully to have emergency chemo.
For insurance reasons, I wasn’t scheduled for chemo until the next week.
But the cancer was on the move.
All I could think about were my children.
And now I know how beeping fast cancer can move.
There are hundreds of people who don’t make it.
And I am so sorry if this is your experience.❤️
I looked my Dr. in the eye…and I asked him, “What would you do if I was your Mother, wife, daughter or sister?”
Would you let her to wait one more minute? Would she live another week?
And then I looked at all the other Dr. 's and from my heart said, “If I donated a million dollars right now, I’d get the treatment I needed.” And I looked each Dr in the eye and asked them the same question I asked my oncologist.
I asked not from a place of fear…
I asked from a place of love, self respect, determination and devotion to my children.
All I know is..by the next day the port was inserted and I received the emergency chemo….
And I am so grateful!
Actually my whole journey has been incredible and synchronistic..
Beautiful really even the sad parts..
I came home…
Sick as a dog..like a dog who had been whooped in the worst street fight possible.. Hanging on by a thread.
After 3 weeks of this we drove into Dana Farber for my first official chemo treatment and to meet with my oncologist…
It was soooo overwhelming…
The drive from the bogs (my husband is a cranberry farmer ) was like 2hrs of god awful Boston traffic.
I felt every single bump..the nausea was UNREAL!
I didn’t think I’d make the ride without being sick…
But we did..
We turned onto Yawkey Way into the parking garage and my husband started to turn left to park the car (pahk the cah).. And I was like there is NO WAY…I can stomach being underground another second.. Please go to valet..I don’t care what it costs, I have to get out of this car…now…
Another tip: You can arrange for free parking.
We got inside Dana Farber which is a beautiful facility…
And then it began again…
It was so overwhelming…I was so nauseous, I was 20 pounds thinner…I had a port in me..I couldn’t see straight…
Up until this point..honestly I would feel faint at the sight of blood.
We went through the check in process and thank god..Dana Farber printed out a schedule because I needed it…
College for Cancer...only embodied.
I had 5 appointments the first day..
The first was bloodwork.
Well that was traumatic..
My first nurse was Michelle and she and a few other nurses gave me some great pieces of advice along the way.
So I sit in the chair NOT EXPECTING to have my port accessed…for the very first time..
I don’t know what I was thinking.. I wasn’t.
She leaned in to access me, I leaned way back and away and out of her reach.
She was so kind and firm…she confided in me that she was sitting in the same chair I was a year ago feeling the same kind of way.
She taught me how to breathe when she accessed the port and she told me about this special cream that anesthetized the area…
She also planted the seed in me that although I don’t like it now… I would appreciate it later…
She was correct. I adopted her mindset, it took me 3 months.. But I began to appreciate the port for its function.
I still didn’t like it but I respected it.
Then, we went upstairs to meet with my oncologist.
I looked around the waiting area room…and then it hit me like a ton of bricks..
I was just like them.
Emaciated Gaunt Sick Deaths Door
For DECADES I took my health for granted.
I would see people who looked like me and although I did have compassion I also had a lot of judgments around being sick…it felt like weakness to me…
That was a very humbling experience.
I quietly whispered it to my husband that’s me..…and he gently shook his head in affirmation.
After meeting with my oncologist I then was guided to the infusion rooms….where I received my second dose of chemo…of the red devil & company…
The side effects were brutal, I didn’t take the prednisone as prescribed (I didn’t read the bottle correctly)...the nausea..OMG!!! And then the nausea meds bind you up..etc…
When you are in this process long enough you get to know the nurses.. I wasn’t particularly thrilled with the traveling nurses.. It was the veteran nurses who rocked! The veteran nurses have seen a lot and therefore have a wider bank of care options…
Side note: People who CHOOSE to work in Cancer facilities are a special kind of people....in 18 months I only met one person who was "desensitized"....otherwise the biggest walking ❤️'s on the planer.
The nurse who knew about nausea medicine that begins with an A, (I can’t remember the name)…spared me days of nausea because this particular medicine can go into the infusion and is good for 3 days.. That was wicked helpful!
I also learned to ask for a room with a view and I pretended I was at the spa!
I'd say 90% of the time I enjoyed the best 3 sided view of Boston....the room they reserve for cash paying clients!
My first protocol I was on was called R-CHOP.
Soon after I began to lose my hair…
The day I decided to cut it all off because it had become a rat's nest was the day I truly broke down for the first time.
I don’t know why but I knew it had to be a family affair.
Up until then, I had tried to hide it from the kids as best as I could. And, for some reason I asked my daughter if she would buzz my head.
But before I did, I needed to call a friend named Ashley & talk with her.. She has been through the #cancer experience with her baby and subsequently founded #OneMission to help kids with cancer.
Everyone was home but they all scattered to different parts of the house doing what they did and it was perfect the way it unfolded…
I fully innerstood it wasn’t just me going through this; my family was too.
After she buzzed my head.. I went into the bathroom and looked at myself for the first time since all of this happened. I looked like a shell of myself.
I was bald. I was emaciated I had this foreign thing in me… I was dying I was living I looked alien to me.
It was so surreal.
I got in the shower and sat on the chair… And sobbed, howled, collapsed until there was no more… I don’t know how long I was in there and for the first time in my life, I allowed my pain to release and I didn’t try to tone it down or be quiet…
I let it flow..
My heart was breaking not just for me but for anyone who was in my situation… All I could think of & feel for was women and children who suffered terrible afflictions and pain.. Ancestral visions.. I don’t know how to explain it. I grieved.
And then…I shuffled into bed.
My husband.. Omg.. this man…for 18 months…PURE PERFECTION!
Before I even came home from the hospital he had converted my office into a bedroom downstairs.
He had a hospital bed delivered which I needed to help me sit up and get out of bed initially..
He had a chair in the shower which I needed because I was too weak to stand in the beginning…
He took care of me: prepared my meals, delivered my meds, took 100% care of the children's house and his work…drove me into Boston..
He provided an exquisite place for me to 1000% focus on what I needed to do.
WHICH WAS COACH MYSELF THE WHOLE WAY THROUGH.
I forget the sequence of events but somewhere in there, we moved me to my sister's house in Milton…because of Covid..
We had heard of cases where people were dying because they couldn’t get the treatment they needed because of Covid.
The kids bringing Covid into the house was and still is a real & present danger with a compromises immune system that I couldn’t afford.
Meanwhile I had decided to change everything.. My diet, my mindset, my exercise.. Like whatever it took..
I found a place in N.H… the D’Adamo clinic that specializes in treating cancer holistically.
For a few weeks I drove a couple of hours back and forth to receive infusions, Mistletoe, barometric pressure treatments, acupuncture, toxin removal, infrared sauna, drinking structured water and diet stuff…
I started feeling better but I was still pretty battered.
My scans looked good until they didn’t.
It was growing back.
That call…on Zoom.
I will never forget it.
My husband was sitting next to me. Again I was sure the R-CHOP worked..
Then my oncologist dropped the gavel.
It was back.
The suggestion was a clinical trial.
By this time I had not only been diagnosed with not one but 2 cancers.. DLBCL…diffuse large B cell lymphoma..this was not good.
I didn’t want to do the clinical trial…
I asked my oncologist if we could try it the holistic way..I would need 2 months.
He shook his head, “You don’t have it Lisa.”
My husband said I collapsed..
I mean.. My brain could NOT PROCESS this AT ALL….
He didn’t say Lisa you only have 2 months to live, he said I didn’t have 2 months to not try the clinical trial..either way.. I heard 2 months.
O.k. my kids.. o.k. My kids..
Let’s do it…
For the record… I had a bad feeling about this clinical trial..I called it Rice & Potatoes.. It's Rituximab with Potuxumab some other stuff…
The pain was coming back.
For the record…I felt like we were throwing spaghetti at the wall now.
I believe 1000% mindset is NON-NEGOTIABLE.
I believe 1000% metabolism and diet is VITAL.
I believe 1000% that this knowledge beforehand can PREVENT cancer.
However, I didn’t know this growing up…and at this stage in my journey..it had advanced so much that the timing was off and not on my side.
In hindsight, I know the EXACT moment I felt it 4 years ago...and the signs of it growing ...that I ignored.
But EVERYTHING ELSE WAS ON MY SIDE.
Especially modern medicine…I’ll get to that in a minute.
My family My neighbors My friends…
I decided early on that I was going to see this through with a lot of love and compassion and that is exactly my experience with cancer.
First of all, there is no energy to fight it. I chose to surrender to it. I acknowledged my reality. And I HYPER FOCUSED on my future & my children and husband. I had a bigger vision pulling me through Even when the very air itself was sustaining me and I was hanging by a thread.
I NEVER EVER EVER GAVE IN.
I didn’t feel helpless or hopeless either because I knew somewhere inside of me..there was power I could access.
The Human Spirit.
There were days where it would take me 3 hours to get up and get into the shower. It would start by me envisioning o.k…
I’m going to have my bathrobe ready, towel ready and bed ready for when I get out of the shower.
It might take me an hour to visualize one leg over the side of the bed and then another..and then visualize 8 steps to the bathroom…maybe ask someone to turn on the water so it was warm by the time I made it in 3 hours later.
I took advantage of the shower seat my husband provided instead of being too proud. There is no pride when you are in that state ONLY GRATITUDE for the little things..
And then I would sit and let the water beat down on me with my head resting against the shower wall..
Envisioning my exit back to my bed…
All of this was to conserve my energy to keep up with the basics…
I didn’t feel like walking and I would walk every day a little bit.
At first I could only make it to the outside patio and then a little farther each day.
(I'm up to a couple miles now).
I intuitively knew that this wasn’t a time to rest on my laurels.
And I didn’t have the energy to fight yet me in bed was
ANYTHING BUT PASSIVE.
Years before I studied with Dr. Joe Dispenza so I extracted some of his teachings in reprogramming my body back to health
NO MATTER WHAT NO MATTER IF IT WORKED NO MATTER IF IT DIDN’T
I played full out for me & my children.
Over time..these little nuggets stacked and compounded and my strength grew.
In hindsight the D'Adamo clinic helped me gain my strength for round 2 of Rice & Potatoes..
At this point, I had 5 second opinions from 2 molecular biologists, Sloan Kettering, a Cancer Coach and Dana Farber…all supporting Rice & Potatoes..
This was the second line protocol for DLBCL…everywhere…
So I went through it…not impressed though.. I think it caused some damage but my time at the D’Adamo clinic rehabilitated me so that I knew my body could withstand it.
Without the D’Adamo clinic I’m not confident my body would have held up for the second round.
At this point I felt like I was Holyfield fighting Tyson (the cancer)...I went a full 15 rounds but in the end it was kicking my ass.
After Rice & Potatoes it was back..
The next line in Protocol was a suggested Stem Cell Treatment.. I wasn’t jazzed about this either..
I was still in Milton being protected from Covid. I really enjoyed hanging out with my sister.
I missed my home, my family, my dogs, the bogs…terribly!
For whatever reason, we dumped Stem Cell and went to CART therapy..
For the record…my husband suggested CART Therapy from the get go but at this time not only would insurance not cover it..it wasn’t protocol.
Then, I had to have bridging radiation to buy me some more time…to get me to CART.
That was no big whoop except for the EXHAUSTION.
And then CART…
For me the recovery was brutal…
15 days in the hospital…
When I felt weak & missing home…at night I would look over to my right..
To the right of me was Children’s Hospital.
At night I could see into their rooms because they were lit up.
And I would see cribs and families and in the night,
I would witness mothers’ collapsing into their husbands arms… and I could see her shoulders going up and down with sobbing breath.. And he was holding her.. Knowing he is in so much pain feeling helpless for their child…
I felt for them…
I was never really a t.v. person but I developed a relationship with The Office program… not only is it brilliant and hysterical, it was on 24/7…so I looked forward to that..
The little things…
And here I am…
8 months post CART…
I’m so grateful!!
CART therapy saved my life. My DESIRE & MINDSET nourished me through....
In hindsight there were so many beautiful synchronicities..
Everything fell into place to support my recovery. Everything.
Yes there were a few times in the middle of the night I felt absolutely terrified for my life.
But I didn’t stay there.. I worked with my mindset, meditation, breathing, distraction.. Whatever it took.
I think standard protocol for other people atleast wth F.L. & DLBCL Is chemo and then CART therapy so people don’t have to go through multiple chemo treatments..
Immunotherapy is amazing.
Western Medicine in Cancer has come a LOONNGG way..
Twenty years ago I wouldn’t be here.
Now people are living and thriving with cancer.
My life is a new normal now..
I don’t regret anything if anything cancer made me come to terms with anything I might have regretted..
Like not telling people I love I love them or saying the things that need to be said…or being fully present in the moment and appreciating what is in front of me.
My journey with cancer was a full on love affair with myself and the greatest mentor I have ever had.
Was it easy? No Would I choose it? No Am I mad at it? No Is it part of my journey? Yes
It has made me a whole person.
I can see the gifts it brought and I am sooo grateful for that!
And so it is.
And now I am excited to be working again. In addition to my group programs, I have the capacity to open up space for one new private client. I work with women between the ages of 35-65 creating more time, presence, love & no regrets. Dm me. ❤️