Last Friday I had a CT scan and this Friday I meet with my Doctor to discuss the effectiveness of the treatments! If the mass shows a reduction of 50% or more then the Rituximab is working!
…I’ve been in a sleepy haze, but my peeps managed to make each week uplifting, fun and bearable! Ya’ll were with me in spirit, with the meals, care packages, thoughts and prayers, and I certainly felt the love!
I tolerated the treatments well. Found a routine where I slept for two days then slowly woke up the remainder of the week in time for the next treatment. I did have fevers, upset stomach, flu-like aches…a necessary discomfort for a positive outcome.
I just feel it deep down in my soul that this treatment is working!
let me share some “highlights” of my weekly treatments!
Yes, I had anxieties, yes I got little sleep. But my first treatment really wasn’t as bad as my mind had pictured. I didn’t know what to expect as there is not much testimonial information out there.
Overpacked? I like to say I was prepared for any scenario an infusion may bring: starvation, frigid temperatures, extreme heat, dehydration, boredom, dry skin… I fixed my hair, put on a bit of glam and donned cute, yet comfy, clothes…why not?
We arrived at the Cancer Center at 7:45am. We were smacked with an insurance/billing mishap….unsettling at first, but now resolved, and just like that the Director waived us on through as if we paid entry to a roller coaster ride. Tight turns and twists through doors, flashing lights and a hallway that led to a door marked, “Infusion Room” our speed decreases almost to a stop, the coaster hangs and my heart skips before the big drop….the door opens into a large open area of 30 or more vinyl recliners.
Waiting for the Finance Counseler to come to work. Trust us we’re smiling! Really we are!
I met my Nurse, Katie. I’m a certified expert, authorized to declare a good nurse by “needle work”…she’s a great nurse. She describes the infusion process. She says it will be a long day. We can expect to be here for 5.5-8.5 hours. Anti-inflammatory, pain meds and Benadryl are put into my IV first to help prevent allergic reaction to the Rituximab. I feel loopy, drugged…ready to start the Rituximab. It’s a slow drip, my body needs to acclimate and not react to the medicine. Nurse Katie vigilantly checks my vitals every 30 minutes….all day.
Bobby runs to Starbucks and my Warrior Sister in pink, Sarah, sits with me. She has a Dr appointment at the Cancer Center. Sarah knows this place all too well. Her visit means so much. Her treatments were during the pandemic, no visitors allowed—strongest Warrior I know. She holds my hand, and tucks warm blankets around me.
About 45 minutes into the infusion my throat began to itch, and I could feel welts rise inside my mouth, and it was getting hard to swallow. I ignore it until I feel my ears itch and my sinuses swell. Nurse Katie comes to check in and I tell her what’s going on. She instantly stops my infusion and checks my vitals—it’s the start of an anaphylactic reaction. She gives me another antihistamine and no change. I am terrified my body may reject this medicine….but she reassures me this happens. The medicine is paused for over an hour. My Dr prescribes a steroid and my reactions begin to subside. Slower drip. And time begins to tick.
I have no pain, no discomfort other than restlessness. I try to read, tried a word puzzle, even tried origami. The steroid keeps me from concentrating on anything. Bobby was back. He dozed…I didn’t. I watched the clock. Patients come and go all day. Always a smile before heading back to their everyday lives…just a “to-do” on their list. Amazed these patients go on doing their everyday. I may not know these people but I can tell you they are amazing!
The infusion continued without any issue. Nurse Katie continued to check on me. She knew to the minute when we’d be done. She said next week we start with the two antihistamines and steroids then start the Rituximab. Slow but hopefully will be able to speed up. They second treatment should not be as long.
We got home about 4:15. Mostly I was hungry, I was tired, felt a bit achy, almost flu-like. Saturday I must admit I was feeling fatigued. I was also emotional. I can’t quite explain it other than “did yesterday really happen?” It’s still hard to believe I’m on a second cancer diagnosis. In fact I have an appointment Wednesday with my breast cancer oncologist. Oh, and did I say I was tired? My stomach has been upset but so far no nausea….that alone could break my day. It’s now Sunday and as I write this update I feel pretty darn good! I am teaching a relaxed yoga flow today! So looking forward to getting on the mat!
The science:
Typically, Non-Hodgkin Lymphoma is treated with R-CHOP chemotherapy. Each initial is a different medicine. For me my Doctor is starting with just the “R”—Rituximab.
Rituximab is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of “targeted” cancer therapy.
The name of my blog is a reminder….to not give all my energy over to something that can’t be controlled with worry, something that can happen to anyone at anytime for no reason. Why me? why not?
This past fall I changed Oncologists. I mentioned an area of concern that one of surgeons had noticed in a scan two years ago. My previous oncologist decided to “wait and watch” and that never sat well with Bobby and I. My new oncologist moved fast and immediately started to investigate. She ordered scans and referred me to a Thoracic Surgical Oncologist. He ordered detailed scans followed by two surgical biopsies.
First off we needed to rule out breast cancer. The second big concern was pancreatic cancer as detailed scans revealed not only a cluster of enlarged lymph nodes, but a messenteric mass was surrounding the celiac artery.
This leads us to March and once again, we “wait” …appointments, blood tests and consults.
My diagnosis, Non-Hodgkins Lymphoma. Blood cancer.
Speed bump.
For two weeks we sat and setted with the idea of a surgically implanted port and R-CHOP chemo treatments. The thought of having to put my life on pause so that I may live made me angry and I was in disbelief. My body and mind have been through so much the past 2.5 years; breast cancer, pandemic, 6 surgeries, my brother’s death…even my big boy leaving home for college 2 states away….
Despite the past two years, I honestly have never felt as strong as I do now, physically and mentally.
My anger and disbelief softens.
So I began preparing for this pause in my life…so I can further life. Prioritizing things I wanted to continue for the short future and putting other things on hold. I knew I wanting to continue practicing and teaching yoga, so I decided no garden this year. A family vacation would unlikely happen over the summer so we planned a last-minute trip to Nashville the week before my treatments began. I researched diet and hacks for dealing with chemotherapy.
I cut off my hair.
Less than a week ago I added another Oncologist to my Anti-cancer army, her specialty; Hematology.
She describes my new cancer as a weed in the garden: we treat it, watch and when it grows back we treat again. Incurable, but treatable. She is the head of the department and a research Dr. So, a rock star in hematology oncology. She gave me some options for treatment. The top option was targeted therapy. Weekly infusions of monoclonal antibodies, a good place to start.
I’m ALL in.
Wham-bam we start Friday! For the next four Fridays I’ll be at the cancer center for 5.5-8 hours for treatments. After week 4 I take a break. Scans will tell if there is a response. If there is a reduction of more than 50% than we have a sign its working. If not, Dr has more options in her cancer arsenal.
So this means we are starting with a treatment plan that won’t be so hard on my entire body! Side effects aren’t as grueling. I can garden, likely vacation, I’m embracing this short hair, and of course, continue with yoga. I can still do it all, sure I’ll have to slow down a bit. But all my energies are going toward this treatment working….Why me? Why Not?
If you’d like to join me in this direct line please send a bit of your thoughts, love, energy and good vibes my way.
A year ago I was in the midst of at 9.5 hour surgery. It’s crazy to think that is behind me. It is!
I’m caught up with my surgeries, I’ve had four in 2020! I just met with my oncologist and reviewed my MRI. All clear! With this news I am now “downgraded” to oncology appointments every six months. I will have to do more imaging this summer. And I continue the Tamoxifen therapy. A daily pill for the next 5-10 years.
Cancer has changed my perspective and my priorities. Pre/post diagnosis. This new label covers my everything, thoughts, dates, time, my body, holidays even my hair length…liken it to pre-post kids or pre-post divorce, pre-post election….you get the idea.
Pre-diagnosis I would push my deep thoughts away. Now I sit with them. Some days are for only a minute. But I need to reflect on this past year. I don’t need to validate or come up with a reason why. Just appreciate what myself and my family has experienced. I have many blessings to count. My tribe is alive and well, I am too.
Whenever faced with a challenge I’ve always just pressed on. I didn’t put much thought into it other than getting from point A to point B. The in-between always seemed to fall into place. It was as simple as a formula.
A marathon, for example, I’d sign up, follow a training program that would prepare me for the race. Then run from start to finish.
A found a formula in all challenges. School, work, even projects around the house. Not much thought was needed when steps were there for me to follow.
My Breast cancer obviously was a different challenge. Faced with multiple surgeries, treatments, and long recovery ahead of me. I was caught off-guard…because of the uncertainty. There was no absolute beginning and end. No formula. Only ranges, percentages, time-frame differences. I was going to have to put thought into this challenge…lots of thought.
I had developed a daily yoga practice. Mostly because the studio was close, my friends went there…auto-pilot routine. I wasn’t there for the “fluffy” stuff; breathing, meditation, being present. I got in my workout and moved on to the next item of my to do list.
I’ve talked about how time stood still when I received my diagnosis. I resigned from my job and watched the clock tick. I had two months to wait till I could even start this cancer challenge. Lots of time to tick. Lots of time to tock. Which led to a lot of unsettling thought. I decided to channel that time and brain energy and focused on mentally and physically preparing for the 9 hour surgery….more yoga! This time I worked the “fluffy” stuff. Quieting my mind was not an easy task….I began one minute at a time.
It worked. I credit yoga for so much….yoga prepared my body and mind for the surgery and my recovery.
Naturally needing another challenge I decided to get my yoga teacher certification. OM Shanti Shanti ever since.
There is a pose that eluded me prior to surgery. I had been working on it for 2 years. Pincha Mayurasana. Forearm stand. This pose removes fear, and opens the third eye chakra to improve mental abilities…whatevs, right? Keep an open mind! Pincha Mayurasana can be a lot of work….it actually takes strong shoulders, arms and abs (Which I’ve always lacked). Lots of effort goes into finding the sweet spot of the pose, but once you find it there is hardly any effort. Depending on the day I can find the spot. That is how I am discovering this body/mind connection of yoga.
The boys are on there second week of online school but I’m not ready to let summer go!
I had lowered my expectations for summer obviously because of COVID, treatments, 2nd surgery, closed beaches, canceled flights, canceled college tours, canceled summer camps…
But I must add, I’m continuing with my great summer even though it’s now fall! Really I am!
Sure we made some modifications but summer was full of family, friends, beach, girl’s weekends, a couples weekend, lots of adult lunches, and even a surprise 50th celebration! Yep, I turned 50.
I can honestly say that a day or two will go by and “cancer” does not cross my mind. Sure it finds it’s way back, but I’m able to temper the thoughts as cancer does not have the hold on me it once did. I’m doing whatever I can to be in charge of body, mind and soul, and that has to be enough for now. I have stuff to do!
My doctor’s visit went as expected. No new updates. Still on the Tamoxifin and will be for at least the next five years. The side effects are either diminishing or I’m learning to live with….
Out to lunch with AJ last Saturday, our server greeted us with a smile.
Mid-sentence he did a double-take. Awkward pause of silence, a heavy stare at my chest. This server, half my age, was gawking at my…..T-shirt.
“What does your shirt say?” “F#%! Cancer”, and I tell him my story…I’ve told my story many times. It’s awkward, clunky and I feel like I’m talking in 3rd person. Replacing the pronouns from she to I. Surreal.
The server praises me for my courage. Calls me a warrior. I feel like a phony. Warrior, fighter, survivor, battle. War terminology. I’m quiet, an observer, I’m not aggressive…unless provoked.
Simply put, I feel like I have only one choice in the matter. When faced with cancer there is no choice but to fight. These days I categorize my life pre-post diagnosis.
July is my birthday month and I am 50! It’s a fun number to be. I’m celebrating all summer! With visits from Shelby, my brother, Cheryl, a beach trip with both nieces, girl’s trip to Savannah and a trip to Charleston to visit my sorority sister! oh, and quite a nice surprise birthday celebration.
Doing and feeling good I sometimes forget I have cancer. Isn’t that a wonderful thing?
My family has grown immense. My tribe that includes not only Bobby, boys, Shelby, my parents, brother, nieces. Family includes my neighbors, friends far and near. Includes my doctors, surgeons and nurses. I’m blessed, humbled and loved.
I can’t express the appreciation the visits, cards, meals, daily check-ins, gifts, flowers and of course thoughts and prayers you gave.
Sometimes it takes a while for the blessing of a situation to reveal itself, but right away I knew this current stay-at-home order was a good thing for me. Without the carpool, after school activities, tutoring, errands, and routine appointments, I have nothing but time to concentrate on my health.
This rang true especially since my lab results were taking much longer than the original 10 days promised. These results determine my ongoing cancer treatment. So I tried to look at this as extra time to prepare for the next stage of my cancer fight and to not have a compromised immune system during a pandemic. Blessing.
I also need to add that some days, many days the word “cancer” escaped my mind, instead open to relaxing, watching, reading, and just being…
I’ve been able to gain my strength with walking, biking, a bit of tennis and even ran a mile or two.
I finally received my lab results last week. I’m just now absorbing the information. My scores came back low, this means that the risks and side effects of chemotherapy are greater than the recurrence rate of my cancer.
No chemotherapy for me! A surprise to us all, even the Drs.
For the next five years I will be closely monitored by my Dr. I’ll continue to get body scans. For the next 10 years I will be taking Tamoxifen for an additional 25-50% reduced chance of recurrence. As of this moment I am cancer-free…and once I hit that 5-year mark I’m considered cured! I still have a couple surgeries ahead of me. Not sure when they will happen but will let you know once I do.
Until then I have a lot to be thankful for and have gone through 2 bulk-size boxes of thank you notes!
This morning we had to cancel a visit from my SIL and Niece in VA…disappointing but necessary. The third family visit we’ve had to cancel past two weeks due to the Caronavirus. Other than my walks I have not left the house. My kids too, no school, no music, no tennis, no friends.
Bored, I went down a YouTube rabbit hole…DIY hair cuts. Knowing I couldn’t pull this off myself my friend came over donned with mask and gloves. On the back porch we watched a couple more videos, sectioned off my hair and cut!
A fresh look always lifts the spirits! I think she did a great job! What do you think?
Why me? Why Not? 