I've been dragging my heels writing an update.
I think that is because there is just so much I could say....the research studies I read outlining the "progression free survival times" of each of the options on the table, the details I learned about each of these drugs and their various side effects, the opinions my oncologist shared about not only these treatments but the state of my disease overall, and the various emotions that have bubbled up at different times over the last week or so.
I have had a little "paralysis by analysis" about what to share, mixed in with a bit of fatigue now that I have returned to work, and topped off with the simple fact that I have thoroughly enjoyed all of my remaining free time without worrying about this disease or wanting to blog about it.
But, with that said, I am so very grateful for all of the love and support so I did want to take the time to share the latest update regarding my treatment plan.
Mike and I had a 45 minute telehealth appointment with Dr. F last Tuesday. We went through all of my options and discussed the pros and cons of each. We asked questions, shared our thoughts and opinions, asked Dr. F for his and ultimately decided on the next course of action.
I will be switching treatments to another combination of endocrine (hormonal) therapy and what's called, "targeted" therapy. The last treatment I was on was also a combination of these types of drugs.
I have been on some form of endocrine therapy these last nine years, due to the estrogen receptor status of my particular form of breast cancer. This is my last option of endocrine therapy before moving on to stronger chemotherapies, so it was worth it for me to give it a go. It appears that my disease is becoming somewhat resistant to endocrine therapy but we are going to move forward and pray that it works for a very long time. The endocrine therapy I will be switching to is called Exemestane and the side effects will likely continue to be menopausal in nature, which is something I have continued to deal with for the last 9 years anyways, so no biggie! The side effects may include: hot flashes, headaches, fatigue, joint pain, nausea, increased appetite, insomnia or increased sweating.
The targeted medication is called Afinitor. Research has found that it has promising effects when used in combination with Exemestane. Both of these medications are oral pills that I will take every day.
The main side effect of Afinitor is mouth sores. They do not sound very fun to deal with-especially considering how much I love to eat! So in conjunction with the daily medication, I have to use a steroid mouth wash 4 times each day. Additional side effects may include: infections, diarrhea, swelling of arms/legs/ankles/face, feeling weak or tired, rashes, cough, nausea, fever, decreased appetite, abdominal pain and headaches. I have never been one to worry too much in advance about these side effects so we will just take it one day at a time and hope that most of these never arise.
The medications arrived from the speciality pharmacy on Tuesday and I started them immediately. I have scans again this upcoming Monday to get a baseline as we change treatments. I will meet with Dr. F on June 11th to find out how my scans looked and to discuss how I am feeling on the new treatment.
After 3 1/2 years of the same treatment and knowing what to expect, I would be lying if I said I wasn't nervous to start these new medications. I am also nervous that there is a chance they won't work and my disease will progress. That is a terrifying thought, as the number of treatment options ahead of me decrease. But I will continue to stay positive and have faith that this will work, and work for a very long time!
Thank you for your continued love, support, friendship and prayers!
Friday afternoon my phone vibrated. I looked down at the number and took a deep breath. I immediately recognized it as a call from Karmanos Cancer Institute, and sure enough it was Dr. F, my oncologist. He informed me that there was just enough tumor sample in my ovaries to allow the lab to complete the testing for the genetic mutation. As he talked for a couple minutes, my mind started to swirl and I knew it wasn't the news I wanted. This was taking too long...he was dragging this out...he kept talking...he would have told me by now if it was good news...I know him well enough to sense these things.
The biopsy was negative. Damn it.
What comes along with this news is the fact that I do not qualify for the treatment we were hoping to try next, called Piqray. It acts upon a mutation in the tumor called PIK3CA. Approximately 40% of women and men with my type of breast cancer (ER+, HER 2-) have this genetic mutation and Piqray works to inhibit this pathway. It has shown to be a very promising treatment, with minimal side effects, which is why we were really hopeful this would be our next move.
So, it's time to pivot.
What do we try next? How many options are there? What does the research say? What are the side effects? Nausea? Neuropathy? Fatigue? Which are infusions that I have to go into the clinic for? Which are shots? Which are pills? What about clinical trials? What will allow me to have the greatest quality of life?
Mike and I will have a telehealth appointment with my oncologist on Tuesday afternoon to discuss all of this and hopefully formulate a plan we feel comfortable with. The extremely difficult part in all of this is that no one has any definitive answers to these questions. Nothing is black and white. None of this is that simple. There are averages, probabilities, statistics. We don't know what will work next. It feels like a crapshoot, and that is tough to digest.
Not even 40 minutes later, my phone vibrated again. My boss called and notified me that I was being called back to work, starting Monday. I am grateful to have my job back, but I couldn't help but shake my head at the irony of all of this. After 8 1/2 weeks of being laid off and also waiting on the next treatment decision, all of this is happening at the exact same time. I was hoping to be able to use this down time to adjust to a new treatment regimen, but that's not the way it has worked out.
Once again, it's time to pivot.
Luckily, I am able to take over our telehealth patients which will allow me to work from home for a bit, until I am needed in the clinic. Of course there will be a learning curve while figuring out how to treat my patients remotely, but I'm fortunate to have the opportunity to ease back into work in this way....and to minimize my risk of exposure to illness by being in the clinic.
A lot of news to digest in less than one hour.
I felt a wave of emotions on Friday night...nervous, anxious, disappointment, relief, fear, worry, gratitude. I have been in a safe, lovely little bubble with Mike and the pups for the last 8 1/2 weeks...and I'm not ready for that to end. I don't want to be anxious about my health or feel stressed over work.
I woke up Saturday morning and made the conscious decision to choose positivity and to focus on gratitude. That has always been my compass which will steer me back to living life to the fullest, no matter what circumstances swirl around me.
Today I choose to be grateful that I even have treatment options.
I choose to be grateful that I have an oncologist whom I trust.
I choose to be grateful that I have a husband who will support any treatment decision I make.
I choose to be grateful that I will trust my gut, advocate for myself and ultimately be the captain of this ship - always.
I choose to be grateful that I haven't had much pain over the last couple of weeks.
I choose to be grateful that I have a job; one that makes a difference in peoples lives.
I choose to be grateful that I will have a paycheck; that I can work from home, and that one day I will be back in the clinic with my co-workers who are dear friends.
I choose to be grateful that we have had such a wonderful weekend and that it reminds me that the sun always rises, the world keeps on turning, and that life goes on.
We will continue to ride this wave.
We will continue to be resilient enough to handle what comes next.
Time to pivot.
We have continued to make the absolute most of this slower pace of life and extra time together. Hiking, biking, gardening, kayaking, relaxing...it's been such a blessing amidst all the chaos in the world right now.
The waiting game....It's never fun, but in the midst of a global pandemic, it has been taken up a notch. It has been longer than expected since I have shared an update and that is due to the fact that I was waiting for more information to actually update you on.
Last week marked 6 weeks since I had been off treatment and over 5 weeks since the biopsy of my sacrum. Just as a little recap, that biopsy was completed in order to test whether my cancer has a particular mutation that would qualify me for a new promising drug, since we have come to another fork in the road regarding my treatment plan.
I was told the biopsy results would take two weeks for the independent lab to complete, but I didn't hold my breath knowing full well that everything is delayed these days in the midst of COVID-19. While I awaited those results, I completed 10 radiation treatments, started to have pain relief, got off the meds that made me feel lousy, felt super grateful and relieved...and then the pain returned. It's been a bit of a rollercoaster, which seems to be par for the course when I'm in the midst of a recurrence. The good news is that after re-introducing the nerve pain medication, I am feeling better with minimal side effects...bonus!
In all honesty, I have actually been surprised at how patient I have been while waiting for these results. (Patience is definitely not one of my virtues!) I have been able to let go of any stress or anxiety about it, knowing full well that it was entirely out of my control. But, come Week #4, I was hoping for some type of update. I called my nurse and was told that the lab had completed 3/5th's of the testing. Fast forward to Week #6, and I was starting to get a little antsy. I checked in once again to see if there were any updates, and that's when the rollercoaster ride continued.
The first thing my nurse said was, "the biopsy is positive"...and I literally said, "yes!" out loud. However, my excitement and relief were quickly dampened when she said the lab did not have enough tissue to complete the testing. The "positive" aspect she was referring to was that the pathologist reported that indeed this tumor is metastatic breast cancer that has spread to my sacrum - which is what we already assumed. The fact that there wasn't enough tissue to complete the testing for the mutation was devastating.
It has been very unsettling to be off treatment for 6 weeks; the longest I have ever gone in 9 years living with MBC. And now to top that off with feeling like that biopsy of my bone (which was not fun), and the subsequent 6 weeks of waiting...has all been a total waste.
The plan now is as follows:
There are a few other important considerations that further complicate things. The one that weighs heavily on my mind is that no one knows if this tumor mutation survives in tissue that has been preserved for many years. There is a great chance that even if I have a positive mutation, the test will be negative because the tissue they are testing is 3 years old. On top of that, what if there still isn't enough tissue there to test? Do we have to wait until my tumors grow large enough to have a painful biopsy yet again in order to have a complete test? All of this scares me.
To top it all off, communication with my treatment team has been poor and for the first time in 9 years, I have felt very in the dark and have been left with a lot of unanswered questions.
For now, I am focusing on the hope that being back on some type of treatment contains my disease and hoping/wishing/praying/pleading that there is enough tissue in my ovaries to complete the testing and that the result is positive.
I continue to practice letting go of what I cannot control and will continue to live, love, laugh and soak up every moment I can....despite remaining on this rollercoaster.
Mike and I enjoyed a hike last weekend and coming upon this tree felt so poetic to me. Sometimes we are forced to bend so much that we think we might break. It's amazing what all living things can endure.
It has only been 10 days since my last post and yet, somehow it feels like a lifetime.
I'll cut to the chase and let you all know that I am feeling much better and human again, but I'm not going to lie...this last week included a few of the toughest days I have ever experienced.
Last Monday, Mike drove me downtown to Karmanos for the biopsy of my sacrum. Due to the coronavirus, he had to drop me off at the front door at pick me up hours later, once the procedure was over and I recovered from the anesthesia. I consider myself a pretty strong and resilient person, but it sure would have been nice to have him there with me.
The biopsy went well and the surgeon told Mike over the phone that he believes he obtained enough samples of the tumor for it to be tested for this particular mutation. It was sent off to the lab and will take a few weeks to hear back on the results.
While the biopsy went as well as it could, the nerve pain down my right leg increased dramatically in the days that followed. This type of pain is unlike anything I have ever experienced and so hard to even put into words. It's a horrendous combination of burning, stabbing, throbbing, tightness to the point of feeling like someone is ripping your muscles and nerves right out from under your skin. There is no position of relief. No way to stand or lay that brings comfort. No hot pack, jetted tub, stretch or massage that makes any bit of difference. The pain became so bad that while Mike threatened to force me to the ER, I tried everything and anything I could get my hands on to see if I could find any relief - or honestly, to just knock me out so that I could be relieved of this misery. I was completely desperate - and scared.
It sounds so dramatic, even as I sit here and type it, but it is no joke. I have been through a lot of physical pain over these last nine years and I think the only thing worse than what this has been like was when a tumor fractured a vertebrae a few years back.
Luckily, we didn't have to go the ER on Monday night and I finally passed out and was able to rest. I started radiation on Tuesday morning and while I laid perfectly still on that hard steel table, tears flowed right down my face. It was not only the pain that brought me to tears, but the forced stillness and resulting acceptance. Here I am again...for the fourth time...I am relegated to this place...to this room...to this machine...to this table...to be radiated...to try to tame this beast...this beast who just won't quit.
By no means am I ready to quit, but it is extremely difficult to stay mentally and physically prepared for the "battle" when you are entering it already worn down from pain and exhaustion.
The very kind radiation techs, whom I have known for years, were able to get ahold of my nurse who came to see me after that first treatment. She was surprised to see the look on my face and knew right away that I was feeling bad. She assured me she would talk to Dr. F when he arrived that afternoon and call me with the plan for better pain management. When I heard from her later that day, the pain was so intense that I had to ask Mike to go get the scripts filled for me. Once he returned home with the medications, I realized it was the same nerve pain medication (gabapentin) and steroid dose pack that I was on the previous week, with minimal reduction in my pain. I felt discouraged that this plan might not be effective, but obviously wanted to try anything to get relief.
Fast forward to Thursday, and I am back at radiation for my third consecutive treatment, and in tears once again. This regimen offered very little relief and the pain had become nearly unbearable, I saw Dr. F after radiation was concluded and explained my symptoms. He shared that the effects of radiation could take 6 weeks to kick in and that in the meantime he wanted to put me on oxycodone. While I was nervous to take such a strong medication, I knew that something more aggressive needed to be done to get this pain under control - and fast.
Within 30 minutes of taking that medication on Thursday afternoon, I had a huge reduction in my pain! I was so grateful and relieved, but soon realized that there was a new price to pay. The oxycodone brought a wave of nausea, dizziness, fogginess and groggy feeling that lasted at least 4 hours after the smallest dose. While feeling such relief from the pain, I felt discouraged and lousy from these side effects -but it was worth it in order to finally get some true rest, both physically and emotionally.
I continued with radiation on Friday and although Mike had to drive me due to the dizziness, my pain remained under control and I was grateful!
Going to radiation appointments every day has always felt like a sort of "Groundhog Day". But now with the coronavirus, social distancing and not working, it REALLY feels like "Groundhog Day". Attending these appointments every morning is my only excuse to leave the house, aside from walking the pups. I get to change into those fashionable blue paper pants, which are 100 sizes too big and threaten to fall to my ankles every time I move.
Back on March 19th when I found out about the recurrence, we completed the simulation for radiation. In addition to tattooing parts of my abdomen, a mold was made around my legs that would keep me from moving while on the table. Once the techs place this mold down, they cover it in sheets and I climb up on the table and get into place.
Once I am in place, I have to pull up my shirt, and shimmy down my awesome paper pants in order to expose my entire lower abdomen and hips. I recorded some time lapse footage for you here, as I did years ago during another stint of radiation. Pardon the blurred out areas - didn't want to share anything indecent with ya. ;)
I completed 4 treatments last week, will have treatments every day this week (Mon-Fri), and will have my 10th and final treatment next Monday. I am praying that I receive pain relief from radiation much sooner than 6 weeks from now, and in fact, that might already be the case.
On Sunday, I decided to try to see how the day went without the oxycodone. It made me feel so crappy that it was worth testing the waters to see if I had any relief without it. And thankfully, I did! I haven't taken it the last few days, and my pain has been very tolerable with gabapentin alone. *Cue, HUGE sigh of relief.
So, the good news is that I am feeling a bit more like myself for the first time since my birthday 10 days ago. I am still able to enjoy daily walks with Mike and the pups, get in comfortable positions in order to binge Netflix shows, and feel less dizzy and groggy so that I can laugh with friends during all these fun Zoom chats. I am still a little foggy, have other fun GI side effects from radiation that I will spare you from, and seem to be battling a bit of fatigue.
These new times we are living in due to the coronavirus are uncertain and unprecedented for all of us. In some ways, life with incurable cancer has prepared me for this....living with uncertainty, feeling out of control, not knowing if you can be well one day and sick the next. Learning how to move forward and navigate life while accepting that so much is unknown, is something I have been forced to practice for many years now. I try my best to remain grounded in gratitude, express and stay curious about my emotions in healthy ways, and surround myself with people who lift me up. Of course, that last part has been tough in a time of social distancing. But, thank God for phone calls, Zoom, FaceTime, social media, texts, snail mail, meal drop offs...and all the other ways we can still show love and support for each other. For that, and so much more, I am abundantly grateful.
Thanks for checking in and supporting us along this latest bump in the road. And for bearing with my long winded posts...let's hope each week is not as eventful as this last one was.
Please stay home and stay well, my friends.
I am not even sure where to start.
I think I may have started a great majority of my posts that exact same way, especially now that I only seem to write when I have a bigger update.
Actually, I have a good place to start....IT'S MY BIRTHDAY! I feel so grateful to simply wake up and inhale that first big ole' breath today. I know that sounds so cliché but once you have been through this kind of journey, you realize that it's anything but.
While this will likely be the most uneventful and bizarre birthday I have ever had (considering we are basically in lock-down mode over here), I am just thankful that I am with my favorite human and two fur babies in our cozy home that we love.
Onto this less fun news...
Back in December, I started experiencing increased low back pain, with occasional radiation of pain down into the right side of my butt. At times, it escalated dramatically and became a very deep, gnawing pain. Right before this started, I had been battling a bad cold that lasted for several months, and then I experienced the death of three dear friends within a ten day period of time. So, I attributed the pain to prolonged standing in heels at the services for these friends, and increased stress to my back from so much coughing. I remember being nervous for our road trip to Asheville over New Year's because sitting for too long also became painful, and I was also concerned that I wouldn't be able to hike. Luckily, I was able to find ways to get comfortable in the car and we had a wonderful time with friends. My pain eventually subsided.
Throughout January and most of February, I felt great. I was making it to the gym regularly, working full time and travelled not only to Asheville, but also to Florida to visit one my besties and to Denver for work, and to squeeze in time with more friends & family.
On Monday, February 24th, I started having some radiating pain down my right leg. I have a lot of issues throughout my spine due to this cancer, including a herniated disc. So, I thought I might have just overdone it. We had gone hiking three days that week, I had been doing more yoga and I figured I needed to just scale back a bit. But, as the week progressed, so did my symptoms.
By the end of the week, I was unable to sit down for more than five minutes without intense pain and burning down the back of my right leg. I could no longer sit at work, which thankfully we are on our feet almost all day anyway. I would cry on my drive home from work each day; unable to find any relief while seated in the car.
That Friday night I watched a movie with Mike while standing up. There was no other position of relief...not sitting, not laying on my stomach, side or back. Nothing. Night time became unbearable. The pain started to elevate to a point that not only left me in tears and crying out for relief, but it would also induce a bit of an anxiety attack; leaving me desperate for relief and Mike asking on more than one night if he needed to take me to the ER. Of course, I always said no.
As a physical therapist, I started to became concerned. I knew how my symptoms should respond if this was an orthopedic issue. Red flags were popping up in my mind, but I held out hope that there was still a chance it wasn't cancer.
That weekend was really tough, to say the least. If I remained standing, I was okay. The second I would sit, I would be in horrible pain once again. The following Monday, I called my oncologist to say that I needed help. I couldn't take the pain any longer. They prescribed me a nerve pain medication, which provided some relief but not enough. By the end of that week, they prescribed a steroid pack to decrease the inflammation and attempted to move up my scans but couldn't. They were already scheduled for March 16th, which was just over one week later. So each day, I have just been getting through the best I can; standing as much of the day as possible, focusing on deep breathing through the pain when I have to sit, and taking all sorts of measures to survive the spike in pain at night.
Last Monday, March 16th I headed to Karmanos on my own for scans. Mike wasn't allowed with me due to new rules surrounding the COVID-19 virus. I spent the day receiving a full body bone scan, chest/abdomen/pelvis CT, thoracic and lumbar MRI.
I was already preparing that this would be an emotional week for me...as a self-admitted sensitive, sentimental soul. Scans, birthday, anniversary of my diagnosis...and then throwing in this insanely scary and uncertain time with the coronavirus and basically being in lock down at home since I am immunosuppressed. So, we waited for my appointment on Thursday and I just prayed the results would show what on Earth was causing all of this pain.
And they did.
This devious disease decided to basically eat up part of my sacrum (tailbone) and press into the nerves that exit there.
...."destructive lesion in the right hemi sacrum abuts the exiting right S1 nerve root and severely compresses exiting right S2 nerve root." Yikes. Well, that explains the pain alright!
I wasn't surprised, nor was I sad. I was grateful something was found and that I knew I could have radiation to blast this tumor to bits and get rid of this pain. But somehow along the way, I seemed to overlook one major factor. That I would now be booted from the treatment regimen I have been on for over three years and have to move on to something else.....something new, something different, something we don't know will even work...something unknown.
With my mind whirling a bit, I tried to focus as Dr. F. explained four potential options. (Note: once again Mike wasn't allowed to go with me so I felt extra pressure to remember all of the details.) I won't get into all the various options and pros/cons right now because I'm already long-winded enough.
Basically, his first choice is a drug that was just FDA approved last year and acts upon a mutation in the tumor. The only way to know if this drug would potentially work for me is to know if my particular tumor has this mutation. That means it needs to be biopsied.
Problem #1 - Dr. F explained that he wasn't sure it could be biopsied because of the location of the tumor.
Problem #2 - If it could be biopsied; we would have to delay radiation (which is where I will get the pain relief from!) until the biopsy is completed because radiation will destroy the tumor
Dr. F then explained they still have my original tumor tissue from my breast from 9 years ago. He could send that in to be test to see if it has the mutation. But...
Problem #3 - No one knows if the mutation survives 9 years of tissue preservation.
So, while Dr. F went to go work on finding out about the biopsy, he sent Dr. M, my radiation oncologist in. We went over the side effects of radiation to this region and what the regimen will look like. I'll post later about all that. He said he wanted do start as soon as possible. So, after I received the rest of my treatment on Thursday (shots in the tush and an infusion for my bones), I had the prep work done for radiation. Again, I'll post more later about that.
Meanwhile, Dr. F returned and had good news...the radiologist said he thinks they can get the biopsy of the tumor! Yes! But...
Problem #4 - It could be 1-2 weeks because they are short staffed due to the need for help managing the Coronavirus. Unfortunately, they are low on anesthesiologists. So, Dr. F said we will give it one week to wait and then we must start radiation.
This is where I was going to ask for your prayers....that I would get scheduled for a biopsy next week. But guess what?! I already did! WOOHOO!
They called yesterday afternoon and my biopsy is schedule for Monday morning. I will go under anesthesia and they will biopsy the tumor in my tailbone. It will be mailed off to a lab and hopefully take no more than 2 weeks to receive the results. In the meantime, I am off treatment.
So, my next prayer request is for doctor completing the biopsy to get a good sample, and for that to test positive for the mutation so I can be eligible for this treatment.
There we have it, folks. That's where things stand for now.
Oh, and I forgot to mention I got laid off on Wednesday....can you believe the insanity of this week. It's almost comical at this point. The good news on the job front is that we hope everyone will be rehired once the virus is contained and we have patients to treat once again. But man, Jesus take the wheel!
So, now I'm off to enjoy the sunshine of this chilly spring day. To soak up not only the Vitamin D, but all the love that I am being showered with lately. I am truly overwhelmed with gratitude for the incredible family and friends that I have. I can never thank you all enough.
ps- Look at the love I woke up to this morning....a surprise visit from family singing me "happy birthday" after decorating our front yard in balloons, pinwheels and signs!
I FEEL SO BLESSED! ❤️
As we embark upon “Breast Cancer Awareness Month”, I am grateful to see TIME magazine share the story of this courageous young women with metastatic breast cancer. Many of us living with mets (stage IV disease) often feel overlooked during celebratory events (or months!) which focus greatly on being “cured” and “beating” this disease. (And it's not lost on me that the title of this blog is "Let's Beat This Thing", but cut me some slack since I started this before I knew any better). ;)
Those of us with metastatic breast cancer often don’t qualify for certain treatments due to our disease progression...suffer continuous and progressive side effects from the never ending treatment..and yet, can often feel like we are the forgotten ones...as if society at large thinks we have found a cure for this disease or that early detection will most definitely save your life, which it might not.
If you have a few minutes to read this impactful article, I strongly encourage you to do so. This is the story of not only this young woman, but it's my story and so many of my friends...many of whom I have already lost at the hands of this disease.
I am so grateful every single day for how well I am able to manage with this disease. Partly because I know that it is not fully in my control and partly because I know all too well that it can always be worse; that one day these rogue cells will once again outsmart my treatment. And with every new treatment, new and worsening side effects will infiltrate my daily life.
I make every effort not to live in fear, but I would be lying if I said that the potential consequences of this disease does not scare me.
At times it is easy to fall into desperation and anger - especially when you see other women you have come to know and love, succumb to this disease. But that is not the message I want to spread....I don't want to be fueled by these negative, albeit understandable emotions.
Rather, I emplore you to think twice before supporting and donating to various organizations this "Pinktober". I ask you to please investigate what you are truly supporting with your mighty dollar when you purchase pink items, wear certain clothing/ribbons, or promote various charities. I don't judge or shame those who buy a pink kitchen gadget in the hopes of it supporting breast cancer research - that was once me! I proudly registered for my pink Kitchen-aide mixer with the assumption that it was going to make a positive impact in some way...and maybe it did!
But, this October, please take a minute to consider who you are supporting and why. If you would like to know that 100% of your donation is going towards researching Stage IV metastatic breast cancer, then METAvivor is the only organization you can truly support.
#dontignorestageIV #stageIVneedsmore #morethanpinkribbons #metavivor
In other news, my recent scans were great! Overall, everything is looking stable and we will take it! Woohoo! This is the face of gratitude, relief and joy!
Scan reports are in and Dr. F gave me the proverbial thumbs up that everything is stable. Woohoo!
On Monday, I had another round of scans including a full body bone scan, chest/abdomen/pelvis CT and a thoracic MRI. Three months ago, I had a thoracic and lumbar MRI which showed stable bone mets throughout various regions of my spine and left hip and I was praying for continued stability this time around...so grateful that is the news I received! Now I can return to my 6 month scanning schedule, if all continues to go well.
The only hiccup lately has been the fact that my blood counts continue to struggle against the onslaught of my oral chemo that I have been on for the last couple of years. I have been on a schedule of taking my medication for 3 weeks, and then having one week off to allow my body to rebound. As of late, I have had multiple months where my counts just haven't rebounded as they should, even after one or two weeks off treatment. So, earlier this month, my oral chemo was changed to two weeks on/two weeks off. Hopefully, that does the trick to allow my body to rest and recover- allow my counts to come back up so I am not at risk of infections and other side effects.
Overall, I have been feeling really good and have figured out how to best manage some of the symptoms that started last summer and continue to be bothersome. I have learned what can provoke some of these symptoms and how to avoid that. I have learned which symptoms I simply have no control over, and how to emotionally cope with that, without becoming overly frustrated or discouraged by it. I have learned how important various forms of self-care are, so that I can truly allow my body and mind to rest and heal, without beating myself up and looking at myself as lazy, weak, or unable to keep up with my ultra-fit husband. I have been super hard on myself most of my life, so this type of thing has taken a great deal of work and patience and I am learning and growing a lot in that arena. Hopefully, I will always be a "work in progress"...learning how to navigate life as I fumble and make mistakes, but ultimately learn from it and grow.
This time of year always feels like a "New Years" celebration, of sorts. With the celebration of my birthday and then the anniversary of my diagnosis two days later, combined with the break in the winter weather and the promise of spring on the horizon, it always feels like a time full of hope, anticipation, and optimism about the rest of the year ahead.
I am feeling so thankful that some dark days are behind me and that there is a wonderful spring and summer ahead. Dealing with chronic pain is something no one should ever have to deal with. I have a whole new perspective on that and have great empathy for anyone who has had to deal with it. The physical and emotional side effects seep into all aspects of life and have debilitating consequences. By the grace of God, the pain and other various difficult physical symptoms from new tumors in my spine, chronic sciatica, and severe medication withdrawal have been steadily subsiding and I am living life to the fullest again!
Thank you so much for the love and support. I feel it, and let myself feel wrapped up in it like one huge, loving hug from so many friends and family, all at once. What could be better?!
Time for my second infusion of the new medication to help manage my bone mets. Praying it's smooth sailing this month since the side effects were a bit brutal in January.
A beautiful bouquet of roses sent from my amazing friend, Kyle. Every year on the anniversary of my diagnosis, she sends a dozen roses, with a white rose turning into a pink one, marking each year of my survivorship. I cherish this every single year and can't believe I now have 8 pink roses and only 4 white!
I have started writing a post a handful of times but always seemed to get sidetracked. I continue to have the best of intentions to write more, but truthfully, I haven't made it a priority. Don't give up on me though, friends! :) I still do want to get back to writing more. I have been pouring my energy into a lot of other healthy, self care outlets these days and it has been such a wonderful transition for me. I am taking more time to read some truly life changing books, listen to inspiring podcasts, commit to a daily intention and gratitude practice, spending time with a new therapist who I have connected so well with, take the most relaxing evening baths in our new jetted tub, and continue to make my physical health a priority by cooking healthy meals and exercising. I have committed to all of these things for several months now so I am feeling grateful that these practices have become true habits.
I always put a little pressure on myself to play catch up on the blog if it's been a bit since I last wrote. So, I'll do the Cliffs Notes version....
We had a really nice Christmas spent with our families and then a wonderful week of fun with our favorite Floridians, the Johnson family. They flew up right after Christmas and we spent some truly amazing days up north at the sweetest A-frame cabin in the woods. We checked off all of the best winter activities Michigan has to offer...skiing, ice skating, building a snow man, having an epic snow ball fight, and snow tubing...just to name a few. It was the most perfect week spent with four of our very favorite people!
The day the Johnson's flew back to Florida, I went right back to Karmanos and saw Dr. F, had my bloodwork checked, and received my first dose of a brand new medication which I will get in the form of an infusion.
Dr. F was happy to hear that I had been feeling well, and he said that my scans results showed that all spots were stable and behaving. Great news! Mike and I were very relieved to hear that. But after we received the written copy of my scan results, we felt slightly deflated. Upon reading the report, we learned that the cancer had spread to a few other areas that we never knew about, including another region in my back and my left hip. So, while Dr. F said that things were stable and nothing appeared active and new, this was news to us. We had already left our appointment so I didn't get to ask Dr. F more about it but I assume that these spots looked old on the scans and in turn, everything looked stable. But at some point the disease had spread to these areas and damaged my bones further. So, we felt like the wind was let out of our sails a little bit.
Overall, we were still very grateful for stability and that I was feeling well. But, it's discouraging to see that this sneaky beast continues to creep into other areas and further damage my body. Reading the reports was a little overwhelming and a few of my good PT friends also read them and shared the same thoughts....there is A LOT of widespread damage throughout my spine. I must be more patient with myself and make smarter decisions about not pushing my body too much.
I became incredibly sick later that night and into the early hours of the morning. I came down with the flu, fast and furious. It was a horrible few days with symptoms that I haven't felt in years. And although I didn't think about it at the time, I now wonder if it wasn't the flu at all...maybe it was the new infusion that I received earlier that day. I was taking to one of my nurses a few weeks later when I was in for some shots, and she said that those symptoms can sometimes be a reaction to that drug. I see Dr. F in a few weeks and will be due for my second dose of this medication. I am honestly nervous about getting it again but I'll wait and see what he recommends.
I am scheduled for another round of scans in about 5 weeks, so I will share an update after that. I have truly been feeling really good so I am hopeful that the scans will be uneventful.
Everything else is going well and we feel the same as everyone else living in the midwest...we are sick of winter by now. Ugh. The cold temps and grey days seem to last forever this time of year. But, Mike and I were just chatting the other night about how the days are getting longer and that brings hope of spring which is around the corner!
Thanks for the texts and calls to check in when I was a blog slacker. :) I'm always so grateful for the love and support as we continue to navigate life with this disease lurking in the shadows. And hopefully that's right where it stays, for a good long while!
oh! ps - we celebrated our favorite boy's 12th birthday! We love you so much, Wrigley!
Happy holidays, everyone!
How are we already here? I am sure I say it every year (and have probably even written it here before), but time truly does fly by fast and faster each and every year!
I am happy to report that I am feeling much better than I was a few months ago. The end of the summer and fall brought a type of unrelenting pain that I had never experienced before and it was a true test. Living with chronic pain became one of my greatest fears once I learned the reality of what bone mets can do, and it terrified me to think that the symptoms I was feeling might become my "new normal".
After many weeks of forced rest, which involved little else besides going to work and then straight to the couch or bed, I finally started to have reprieve of my symptoms. Not only did this give me great physical relief, but mentally and emotionally too. On top of that, it allowed me to hold off any potential radiation therapy to my spine.
With each day, I feel stronger and more hopeful that I will get back to where I was. I am not as scared of hurting myself at work while trying to do all I can for my patients. I am able to walk the dogs with Mike each evening. I am back to the gym with modified workouts, and learning how to be more patient with myself. I continue to have some symptoms that remind me that I need to take a rest and sit down for a bit. I am learning that I have to respect these signals from my body and that they cannot be ignored.
The fall and start of winter has been full of enjoying time together, and with family and friends. We took a trip to Connecticut to visit our friends, Beth and Ben and their kiddos, celebrated our nephew's 2nd birthday, hosted over 30 people for Thanksgiving and started a complete bathroom remodel!
I did meet with the team at the Karmanos Phase 1 Clinical Trial program and I'll save those thoughts for another blog altogether. In a nutshell, it was a very eye-opening and pretty overwhelming appointment for my mom and I. Thankfully, it's not a road I need to travel down just yet.
My counts have been good enough to stay on my current treatment and we are praying that it continues to be effective and prevent the spread of any further disease. We will know if that is the case or not after my next round of scans which is on Christmas Eve. Isn't that how we all want to spend the day before Christmas?! I will have scans that day, return on the 27th for my injections, and then again the following Thursday, January 3rd to see Dr. F for results. Please include us in your prayers that these scans show improvement in my spine and no new disease anywhere else!
I will have some pretty great distractions during that time as our dear friends from Florida (the Johnson family) come visit! Brinley and Andy are surprising the boys with a trip to Michigan for Christmas! They have been begging to come up here and see some snow. We are heading up north for skiing, tubing, snowman building and all sorts of other winter fun!
I can't help but feel a real sense of gratitude at how joyous this holiday season has felt for me. As I reflect back, I know that the holidays have been very difficult for me since I was diagnosed with cancer. I used to love Christmas so much but after my diagnosis, it became a time of year that left me feeling sad - whether that was due to wondering how many more Christmas' I would have, or because of how quiet our house felt when it was supposed to be filled with the laughter and chaos of children...it just became a hard time. But this year feels different. I am enjoying every part of it, without feeling stressed, overwhelmed or sad.
I feel excited to celebrate Christmas with those dearest to us....to celebrate another wedding anniversary with Mike...and to enter a new year feeling full of hope and optimism.
Thank you for riding the waves of life with me. And for following my journey, as I am constantly learning, growing and navigating life with a chronic disease as best as I can.
I hope that each of you enjoy the love and joy of the Christmas season and have a very Happy New Year!
I had a week to think about this latest news, to read the MRI reports and luckily have an impromptu appointment with my radiation oncologist last Thursday when I ran into him at Karmanos while there for blood work and an injection; all before meeting with Dr. F on Thursday morning.
The MRI report and meeting with my radiation oncologist revealed cancerous activity at more than one place in my spine and also elaborated on some of the damage that has remained there for the last few years due to cancer, radiation and other side effects. The good news is that over the last two weeks, the pain in my back has subsided substantially. So while my radiation oncologist said we can definitely radiate this area (even though part of it has already been radiated once), he would suggest waiting to play that card until I absolutely have to. And I agreed. Radiation to the spine carries a great deal of side effects, not only potential damage to the spinal cord, but also damage to surrounding structures. The last bout of radiation I had to my spine left me feeling like I was swallowing glass and resulted in dropping too much weight in a few short days from my inability to eat or drink. My radiation oncologist, Dr. M, assured me I can call him any day, at any time, if my pain returns and I need to get in for radiation. He is simply the best and I am so grateful to have him on my team...and grateful I don't need his care again quite yet!
Mom and I headed to my appointment Thursday morning, where we came with a handful of questions, but also a lot of faith in Dr. F and his opinion. Dr. F shared that there are plenty of arguments to support changing my treatment at this point, but just as many to support watching and waiting. These are some of the main points of our pretty long discussion together:
When the study was published in 2016 about the combination of drugs I am currently on, it was hailed as a huge success because the "progression-free survival" rate was 9.5 months. I have been on this treatment for 22 months now so I am extremely grateful for that! And if I can squeak out some more mileage on it, all the better!
On another note, I will be meeting with the Phase 1 Clinical Trial doctor at Karmanos in a couple of weeks to see what trials they have. It is a scary thought for me because the phrase "clinical trial" has also felt like the words "palliative" or "hospice"....words you hear when things are extremely dire and there aren't many options left. But luckily, Dr. F explained it to us in a way that made a lot of sense and didn't feel nearly as terrifying.
Aside from meeting with the clinical trial doc, Dr. F is going to watch me a little closer for now. I will still have blood work every couple of weeks, injections every 4 weeks, see him every 8 weeks and get scanned again in 3 months instead of 6.
I feel in my gut this is the right plan for me at this particular time. I feel good about it - as does Mike, mom and my doctors. So we wait...and we watch...and pray that the pain doesn't return and that these rogue cells chill out and hibernate for a good long while.
In the meantime, my blood counts have plummeted once again (never seems to be any rhyme or reason), so I wasn't able to restart my treatment on Thursday. It does explain some of the additional fatigue I have been feeling lately. I will have repeat labs done next Thursday and hopefully restart then.
I think that about sums it up.
Thanks for all the love and prayers!
My blog to keep you all