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. xoxo, Meg
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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. xoxo, Meg 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! ❤️ |
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