Unfortunately, not the good news we were hoping to receive today. The chest CT shows that the 5 untreated lung nodules have continued to grow. One in particular has grown more rapidly than the others, and is now the largest of them all (11×10 mm). It is near the heart, airway, and major blood vessels, so safe treatment options are limited.
At this point, it sounds like thoracic surgery would recommend against surgical intervention, weāre waiting to hear from interventional radiology (but it is likely they will say treatment is too risky to the area), and radiation oncology thinks we could treat with SBRT again (same type of radiation I had to the other lung nodule & my spine).
I also have the options of oral chemo (no, thank you!) or waiting and watchingā¦ as much as I would love to do no treatments right now, if the nodule continues to grow at its recent rate, we risk it affecting the heart/airway/blood vessels, and therefore making treatment even more challenging.
Radiation would involve 8 treatments since they have to be extra careful with the location. Lots of potential side effectsā¦but it doesnāt really seem like I have much for options.
I now have to wait to hear back if anyone else has input about plausible treatment options. Otherwise, Iāll likely be moving forward with scheduling radiation for after Christmas.
Iām trying not to spiral into the deep, dark abyss right nowā¦ I hate cancer and Iām so tired of all of this. The constant fear and overwhelming grief are a constant in my life now. I know itās going to take time to come to terms with all of thisā¦ I still havenāt come to terms with the whole spinal saga, to be honest.
I donāt have any uplifting thoughts or words of hope at this timeā¦ Iām just going to continue praying and working for a cure.
I would first like to extend our deepest gratitude to everyone who came, donated, and helped out with our benefit last month š Ashley and her family did an incredible amount of work to make everything happen, and we are so very thankful to them and everyone else for sharing their love and support around this event! We had so much fun seeing family and friends from near and far, many of whom we hadnāt seen in at least a few years! I was absolutely exhausted by the end of the day, but my heart was very full š
I have intended to post an update several times over the last few weeks, but it hasnāt been easy to accomplish. Iāve been to both urgent care and the emergency room for new and worsening symptoms. I spend my days trying to cope with the physical and emotional pain and stress of everything, and trying not to drown in the grief and anxiety that cancer has brought into my life. I find myself distancing from friends and loved ones because I feel like a constant burden. Iāve increased the frequency at which Iām doing psychotherapy, and am even seeing 2 different therapists now.
In addition to trying to manage my mental health, there are the endless appointments for trying to manage my physical health and pain. The recovery from surgery and spinal radiation have continued to be frustratingly slow, in my opinion, but I continue to do the work.
Now today is scan day. I wonāt see the oncologist until Friday, so will be doing my best to cope with the dreadful wait.
We have been living in some degree of survival mode for the last 4 years, but since my May scans, we really have been barely limping along. From scans to treatments to more scans and more treatmentsā¦ I donāt get enough time to recover before more crap gets piled on.
Iām ready to heal. Iām ready to be able to make plans, keep them, have big (fun) things to look forward to, and not let the fear and grief of cancer rule my every thought and plan. I appreciate your prayers and positive vibes for good news and healing in my future ā¤ļø
Meet Artie, my new AFO (Ankle Foot Orthosis). Iāve waited (impatiently) for 5 weeks to get this guy, and I am so excited to finally have him! (Why is it a āguyā named Artie? I truly donāt know, it just seemed to fit. No pun intended š¤Ŗ).
One of my PTs suggested I see an orthotist to discuss possible brace options the very first time he watched me walk. He noticed all the issues I was having with my gait and thought something like an AFO might provide the support and stability I needed to make walking easier and safer.
My right leg has been very weak since surgery. My knee buckles (which is likely what caused my fall a few months ago) and hyperextends frequently when walking (which puts excessive wear on the knee), I have foot drop, the muscles are weak, and the joints and muscles are uncoordinated from a neurological standpoint, meaning the messages to and from my brain donāt move as quickly or easily as they used to. Iāve also been unable to do more than walk/hobble at a normal pace. When Iāve tried to even walk quickly (like crossing in the parking lot or to get out of the rain), itās like my leg doesnāt work. It feels like a dead weight that Iām dragging, which makes it incredibly difficult to move quickly!
There has been improvement with therapy, but itās frustratingly slow, has gotten worse since radiation, and I still donāt feel safe walking long distances without an assistive device (such as my walker or a cart when shopping), especially when my leg is fatigued.
AFOs help stabilize the joints and therefore improve overall functioning of the affected leg. Although it felt a little clunky at first, I immediately noticed an improvement with walking when I tried one! My balance is improved, foot drop is controlled, my knee hyperextends a lot less (which means less buckling), and I feel more stable overall. And get this: I was able to JOG with the AFO on!!! (Now, Iām talking a very short distance, but I did it)! I have wondered if I would ever be able to move quickly again. I almost cried when I tried it in a PT session.
Needless to say, Iām excited to have this brace. I can move it into whatever shoes or boots I want: the foot plate goes right under the insole. The only issue would be making sure thereās room for the ankle bar. Do I think Iāll need this brace forever? No. But for now, it is really going to help!
Iāve had several people inquire about the benefit I mentioned in my last post, forgetting that I have followers who arenāt also Facebook friends š«£ I apologize, and will share some information here.
Brandonās cousinās wife, Ashley, is so very kind to be going to all the work of organizing this for our family. We are really humbled and grateful for all of the support pouring in around it!
The benefit will be taking place on Saturday, November 18th from 4-8pm at the American Legion in Anoka, Minnesota.
I will attach the event flyer here, as well as the link to the Facebook event page. If you have any trouble accessing it, please let me know. This Facebook page is where any updates will be posted leading up to the event. If you have questions about the benefit, you can contact Ashley directly at ashleyeb22@gmail.com
(I think this link will expire after a certain number of people access it, so if an updated link is needed, please let me know!)
Ashley is also asking that if possible, you RSVP with this Google Docif you plan on coming. This helps ensure we have enough food and beer, and will speed the line at the door.
It would be so great to see some of you, if for nothing more than to say hello and give you a hug! As a result of COVID, cancer, and Sloane’s heart condition, we have been pretty cautious and isolated for the past few years. We have really been missing our family and friends.
Please do not feel obligated to come, but know that any form of support is absolutely appreciated!!! Feel free to invite/share with anyone else you think might be interested.
Thank you all, and I hope to see some of you there! š
Itās been a month since radiation and just over 3 months since spinal surgery, so I figured I should update you all on how things have been going. To be honest, I havenāt really wanted to post anything because I was afraid it wouldnāt seem very uplifting or hopeful to anyone reading, but the reality is that itās been a tough month.
Symptoms really kicked in about a week after radiation. The inflammation in my spinal cord got so bad that rather than finish a short course of steroids, I needed to double the dose and have been on them ever since. All of the symptoms Iāve had since surgery have gotten worse (neck/back pain, nerve pain, numbness, tingling, sensory deficits, muscle weakness, trouble walking), and I developed severe esophageal thrush (which is apparently common after this type of radiation). The thrush made it feel like I was trying to swallow a baseball down a small straw every time I ate or drank Anything (including water). The worst of it persisted for about 2 weeks (even with strong treatment), and it has otherwise felt like I have strep throat for the last month. Anything spicy, hard, hot, or cold irritates the throat, so it really takes the enjoyment out of eating. Unfortunately, steroids make your appetite insatiable, so youāre constantly ravenous but everything you eat and drink hurts. Iāve been working so incredibly hard to make healthy food choices despite these challenges, yet Iāve been putting on a ton of weight thanks to the drugās effects on my metabolism and fat storage. My face is super swollen (so much so that my jaw hurts sometimes) and Iāve put on about 15 lbs in the last couple weeks alone. My clothes arenāt fitting anymore, Iām bloated and extremely uncomfortable. And discouraged.
Steroids also have the lovely side effect of taking away your bodyās ability to sleep. Iāve taken more sleep meds than most humans ever should in the last month, and amazingly, I still canāt get more than 4-5 hours of sleep at night š¤Æ Now tell me how a body is supposed to heal when itās getting half the sleep it needs?! I canāt nap during the day because of the steroids (I take them right away in the morning), so what I get at night is what I get!
Iām running on a severe sleep deficit while trying to recover from radiation and surgery, not give in to horrendous cravings, deal with a constant sore throat, try not to cry every time I canāt fit into another piece of clothing, oh, and deal with the fact that itās like Iāve taken 100 steps backward in my recovery from surgery. I still canāt drive. I still canāt walk safely for long distances without an assistive device. I canāt walk up or down inclines without having something or someone to support me. I need frequent rest throughout the day, where I can physically rest my shoulders and head against something. Still canāt lift anything very heavy (including Sloane). My right shoulder range of motion is still very limited, so overhead lifting and reaching are minimal. Still need a chair in the shower. Still have to prop my arm up on the wall while I do my hair. My mind/emotions are a mess from all the medications, lack of sleep, and stress. I canāt get minimum tasks done during the day, so am constantly feeling like Iām drowning in everything, which is then compounded by everything else. The nerve medication makes my vision blurry, so I canāt really read much, or for long. I have had to increase the font size on my phone in order to see better. I have a billion physical books Iād love to read, but only have short periods of time during the day when my vision is clear enough to read them. I have trouble holding a pen or writing much. My thumb numbness makes typing on a phone really frustrating, despite trying different accessibility changes. Iām dropping stuff constantly because of diminished grip strength in my hands and numbness in my thumb. I canāt look down for very long, so things like meal prepping have to be quick or they quickly become painful.. typically I need to sit down and rest my head/neck/shoulders in the midst of any prolonged task at the counter or table.
Now, Iām not saying all of this to complainā¦ itās just the reality of my life right now. Iām hoping I can get off these steroids in the next couple of weeks, but we have to see how my body continues to respond to tapering off of them. Iām hopeful that my sleep will improve drastically once Iām off, and I know that will help a lot of things on its own.
Iām still doing outpatient neuro physical therapy to work on my walking and neck and will be meeting with a new ortho PT team in a few weeks to continue to address my right shoulder. I have about 400 at-home exercises that I pick and choose from each day. Iām seeing progress with my hard work, but the setbacks from radiation have absolutely been discouraging and frustrating.
Amongst alllll of this crap, Iām trying really hard to remain present (and patient) with my family. We havenāt been able to do a lot of the things I would love to be doing on the weekends, but as has been the case for the last 4 years now (š) weāre doing our best to make good memories together. Iāll include some photos of our fall fun below.
I canāt believe that itās less than a month away from our benefit š¤Æ and Iām beyond excited to see some of you there! š Thank you to everyone who has reached out and/or provided support or prayers. This past month has just been so overwhelming and all-consuming that Iāve essentially kind of holed up while trying to survive. Weāre so very tired of living in survival mode. Itās felt that way for the last 4 years, but especially since May of this year with the start of lung radiation, and it just never settled down. Iām still working and praying every day for healing, peace, and lots more time and opportunities for fun with my family ššš»
Enjoying ice cream on an unseasonably hot fall day! One of the very few short walks we’ve managed to take as a family since my spinal surgery. We went to one of our favorite parks, but unfortunately, the trail was a little too tough for me. I needed a lot of help with pushing the stroller and struggled to get up and down all of the hills. The scenery and weather were beautiful, however. Jess and Stella came all the way up to see us!! We had so much fun at the Fall Festival together. So very grateful they could come to see us during their trip to Minnesota!
I was finally feeling physically and mentally ready to celebrate my radiation victory last night. Brandon and I went out for dinner at a lovely little Italian restaurant not far from home. We had a beautiful night for it! (We were also surrounded by sunflowersā¦ tell me that isnāt a good sign š»).
While Iām still struggling with a lot of side effects (some of them continue to worsen), I was determined to do something special.
Itās been difficult to imagine celebrating anything when no one at my appointments has seemed to acknowledge much of the wins, but Iām beginning to understand that itās truly no oneās responsibility but my own. I get to decide what counts as a win and how I choose to celebrate itāØ It would be nice if the staff cheered me on, but sadly that doesnāt seem like the world of healthcare right now.
Since I havenāt been able to ring the big bell at the clinic, I decided to buy myself a little hand bell, and will be using this as my āvictory bellā whenever I feel like celebrating. Itās tiny, and seems kind of silly. But it also seems silly to not somehow acknowledge my triumphs. Honestly, each day of thriving with a Stage IV cancer diagnosis is a victory, so I know I should be acknowledging and celebrating more of my wins. I focus enough on the hard, uncertain, scary, and frustrating partsā¦ this will be my attempt to bring more focus to the positives šš
Sadly, the final days of these radiation treatments are a bittersweet, somewhat hallow victory. I still have cancer inside me. I donāt know what the future will hold. I watch people come out, ring that bell, and we all clap and cheer. I always cry. Thereās no fanfare when I walk through those doors after treatment. No bell ringing. No cheering. Just me, fighting back the tears at reality.
As the days have progressed, it has become more difficult to walk. My left leg used to be my strong one, but now itās buckling, too, which means Iām a bigger fall risk again. Iām walking much slower and am having trouble with any uneven terrain (even with the walker). Voice is getting hoarse. Dry mouth. Irritated/swollen throat. Swollen, sore neck and lymph nodes. Stiffness. Sensory changes in my legs. The numbness in my right arm and hand are getting worse (I was even having trouble holding up 3 fingers for this photo). Fatigue from treatment and lack of good sleep. Steroids are keeping me from sleeping wellā¦ and itās all adding up.
Once again, Iām increasingly helpless and less independent. Itās been a tough week, to say the least. Iām glad to be done with this. But man, does cancer suck.
Iām also starting to experience some throat irritation, dry mouth, and just general worsening of neck pain and neuro symptoms (denser numbness, increased tingling, burning, pain, etc).
Overall, just feeling pretty crummy. So sick of my body getting beat up and not being able to heal and recover in the ways I want and need. Hoping for some better sleep tonight, and manageable symptoms going forwardā¦ Seems sad to have such a low bar. Iād love to feel fantastic and healthy and vibrant! š and be cancer free!
The first of 3 radiation treatments to my cervical spine is done!
This experience is disturbing and traumatic, to say the least. I was fitted for my mask on Monday, and had no idea what was truly in store. I had to lie through a treatment simulation And an awful MRI while I was trapped in this device (the MRI also required the head cage, so it was constant claustrophobia throughout it all). Itās like something out of a horror movie, in my opinion. My head, shoulders, and upper chest are all pinned beneath a tight, hard mask, and Iām unable to move at all. My forehead is smashed so tightly in the mask that it leaves marks on my face for over an hour after itās off. I canāt open my eyes while itās on. I have a tiny nose hole through which to breathe. And I have to hold perfectly still without completely panicking. Sounds great, right??
Since I had no warning on Monday, I didnāt have a chance to mentally prepare ahead of time (or take any medication to help calm me). Now I have a prescription to take the edge off before heading into treatment, but itās still an extremely unpleasant experience. I think anyone whoās been through head or neck radiation can attest: This is an unpleasant and scary ass process, even if you donāt have a history of claustrophobia.
The plan is for 2 more sessions this week, and then follow-up scans in 3 months.
I appreciate your love and prayers for peace through this process, and for a good outcome! Iāll plan to update more tomorrow šš»
Itās been a stressful and emotional couple of days with scans and appointments, but Iām finally feeling like I can breathe a tiny bit better now. Yesterday I had a spinal MRI, CT of the chest/abdomen/pelvis, and met with the radiation oncologist who treated the lung nodule back in May. Today I met with my oncologist.
Our day yesterday was quite emotional because when we left the appointments, the doctor didnāt have all the information. Based on what we Did know, it sounded like there was a possibility of recurrence in the spine, as well as several new lung nodules. If the tumor had come back in the spine, there was a good chance I would need to have surgery Again, in addition to radiation, and then we would discuss whatās next for the lungs.
We left her office feeling completely defeated and devastated. It took every last ounce of my willpower to not completely collapse on our long walk back to the car. As soon as we entered the parking garage, I fell apart. I cried and cried and held onto Brandon for I donāt know how longā¦ cars passed and the world went on around us while our world was seemingly falling apart. After pulling ourselves back together, I got a notification that the final chest CT report came back, and it showed NO definite new growths. The lung nodules that have been present have continued to grow but at a similar rate as before. And the lung nodule that was treated back in May has responded well to the radiation! While not great news, it was much better than what we were originally told.
Ok. So now we were looking at āonlyā the possibility of really bad news with the spine. Since my surgery was with a different health system, weād have to wait until the images could get pushed through, and for the team to review and compare to yesterdayās scan.
This morning we met with the oncologist. She said that she talked with the radiation oncologist and surgeons on the team who reviewed the post-op MRI images and yesterdayās results, and there is NOT concern for recurrence at this time! The area they were uncertain about is ājustā post-operative changes in the spine. Therefore, they do NOT think that surgery is warranted again! š Everyone on the team does think that radiation is a good idea, however, to make sure things are ācleaned upā so that surgery isnāt necessary again down the road. The surgeons think that my spine is still healing, but healing well, which was good to hear.
So at this time, it sounds like the plan will be for radiation to start the week of the 18th. Iām waiting to hear back from them about all of that. Treatment will increase inflammation in an area that is already very inflamed, which means pain and deficits are likely to increase for a while. Additionally, because of the location, I will probably have an extremely sore throat and hoarse voice for a while. Theyāll give me medications to help with it. And, of course, worse fatigue! Yay!ā¦ šš
The brightest of spots is that the abdomen and pelvis still look good, so no changes there!! After all of this, the plan is to rescan everything in about 3 months.
Still with me here? Ugh!! It has been a fricken rollercoaster, and Iām over it! Iāve never been a fan of rides!
Iām going to do my best to enjoy the weekend with the kids and Brandon, knowing that with my already limited abilities, I have a lot to try to get done and prepare before radiation starts again. You all know I will do my best to continue updating as best as I can. I appreciate your patience with these updates, as sometimes I really need to rest (physically and mentally) before I can write everything outā¦ aside from taking care of my responsibilities as a human and mom š
Shoutout and thank you to the BP Cancer Group for my t-shirt and all of their support over these past few years. Itās such a fantastic group from my little hometown, and their annual cancer auction is actually going on this weekend! (www.bpcancergroup.org)
Love to you all! Thank you for your continued support. Iām praying and working every day so that I can someday share my miracle story with you all š«¶š
Lauren MG Doyle 