April 5, 2019 · from Lesley’s original CaringBridge journal
Wow the last couple of months have flown by. I apologize for so long without an update. January and February were filled with doctors’ appointments, a little procedure for Gus, and lots of me trying to get back on my feet and figuring out what my new normal looks like. I really hope you understand – I have felt pulled to the computer many times but the forces pulling me away were much stronger (and cuter).
I feel like a movie star. But not the glamorous kind. I feel like the girl that was a hostage in an action-thriller movie. That is one of the best comparisons that I can come up with. Let me expound on this metaphor a bit (and I confess I’ll probably exhaust it because that’s how I roll with analogies). So here I am just a mom trying to take care of my tribe and I get kidnapped by this big ugly bad guy named Cancer. He has other hostages as well – men, women, young, old, black, white – he is no respecter of age, race or sex. This whole army of folks has been trying to rescue me and my fellow captives. I made it out alive. Some did not. Some are still in his clutches. And they never caught the bad guy – he somehow got away. At the end of those movies if you think about it there is a full spectrum of emotions going on. There is much rejoicing that the girl got rescued. But there is also a somber air for the ones who didn’t make it or are still waiting on their turn. The girl is exhausted and overwhelmed. She has tears of joy for herself, but tears of sadness for those with whom she has bonded so closely. They all went through the same intense experience and didn’t seem to get the same mercies she did. She doesn’t quite know what to do with herself so she retreats to silence for a while to try to wrap her head around what just happened and make sense of it all. She is so thankful for the massive amount of volunteers and professionals who were part of the search and rescue party and feels obligated to them but just doesn’t have the energy to keep up with it all. All the while, she wonders if the bad guy is still lurking around the corner.
Are you getting where I’m going with this? So many things going on in my head lately – it is like a pet store full of hamsters running on wheels of thought up there. I am so incredibly thankful for each and every one of you – I mean EACH ONE! The prayers, cards, texts, gifts, and more have all been this amazing force in my life over the past year. If I tried to write thank you notes for everything that has been done for me I’d be busy for another whole year! So I hope this collective THANK YOU will suffice. I will still update you all as there is still more medical junk to come for me, but the posts will be fewer and farther between because thankfully I am healthy and have four young men to raise and enjoy over here in my woods. Please don’t hesitate to write, text, call anytime – we still love all the check ins 🙂 Now….onto some updates!
Medically speaking I have gotten nothing but good reports – “everything looks great, we’ll see you in a few months” – is the recurring theme. We were very happy with the news from my PET scan in December but there were a few things we still needed to follow up on plus all my regularly scheduled checkups. First the breast surgeon – that visit was good and my mammogram (on the right side) was so clear we did not have to have the usual follow up ultrasound. That has never happened before. That visit felt a bit too easy, but I’ll take it. Second, the radiation oncologist – Marsh and I had a quick weekend away in TN over Valentines – no mind that it was for a doctor’s visit but a getaway nonetheless. That was another anti-climactic appointment. “Everything looks great!” is literally what he said. My skin is healed up wonderfully and he was reassuring that the spot on my lung is just inflammation from radiation that should clear up within 6 months to 2 years. My best layman’s translation is that since it was Proton radiation (and not photons that traditional uses) the beam stopped just shy of my lung on the other side of my rib cage and gave the outside of my lung a sunburn in this one spot. The encouraging side of this is that since it was not traditional radiation, the beam did not penetrate my lung and therefore should not leave any scarring. Nevertheless, it shows up on scans and my oncologist will continue to follow up on it until it goes away. This brings us to my most recent visit with my CT scan for my lung and oncologist. The radiologist report said “inflammation from radiation” and we are not concerned. Sorry ya’ll, all of these updates are uneventful! As usual I came to Dr. Wells with a list of stressors and fears and he, as usual, put them to rest. I cannot tell you how thankful I am for this doctor. I am continuing to take my Tamoxifen, which I will take for 10 years to block estrogen (since my cancer was hormone positive this reduces risk of recurrence by a good bit). Thankfully I haven’t had any side effects that aren’t manageable. We came up with strategies to help deal with these little annoyances and I feel good about that.
Upcoming Medical Stuff: I recently met with plastic surgeon #1 to start discussing reconstruction options and my second mastectomy. I wish I could go to sleep and wake up and have that whole process over with – I am not looking forward to it. Please be in prayer about these visits and the decisions that accompany it. I feel like I need to get a 2nd and perhaps 3rd opinion but honestly don’t have the time for traveling and all the extra appointments. Again, wisdom and patience are needed for these decisions. We are planning to try to do these surgeries this summer to hopefully not interfere with school. In July I will have another follow up CT on my lung and on my liver. Do you guys remember that iffy-ness with my liver in the beginning? Well, this is just to be sure that what we said was nothing then really is still nothing. If I pass, we can check liver off our list of things to keep checking on. In August I will go back to TN for a visit there.
Insurance: We are still battling the insurance company about the Proton Therapy. Of course they still don’t want to pay for it and have a ton of fine print and excuses that all contradict one another. They lost my appeal package I sent to them in December so I’ve started back at square one again. This whole process is beyond frustrating and stressful, all the while knowing that my chances of winning are slim to none. So why bother? Principle. The insurance companies as a whole don’t want to cover Proton Therapy for breast cancer – there is a bigger agenda there that I don’t fully understand. I want to be a squeaky wheel. I want to continue to beat down this wall so that this treatment is more readily available to women in the future. Also, we still have a big fat bill to pay….although it isn’t near as big as it would be thanks to so many generous people donating to our GoFundMe account (which is still active by the way 😉 )
The HAIR: my hair continues to grow…in it’s own special crazy way. We have moved on from “Christopher Walken” to “80’s aerobics instructor.” I honestly think that if I had a high cut leotard and some leg warmers you would swear I had a time machine. I have discovered that these wide headbands I make tame it a pretty good bit and look kind of fashionable. My friends convinced me to make some to sell so I’m doing that as well. There is a Facebook page for them if you want to check them out – Headbandas is what we are calling them.
Aside from all of that, most of my days don’t revolve around cancer anymore – it’s a strange adjustment really. I’ve been getting more energy day by day and trying to get back into taking care of my household. I’ve been back in the kitchen pretty regularly and my guys are pretty stoked about that. We have been in a good rhythm with school and I feel like we are starting to get caught back up to where we need to be after the craziness of the past two years (baby…then cancer). Right now the boys are all in full force baseball mode – we are burning the candle at both ends with juggling all the schedules, but I am so thankful to be able to be more a part of it this year. They said “Mom, aren’t you glad you can come to our games and not feel like puking?!” I guess that sums it up huh? I also am seriously considering trying to get my writings into book form and published. This would be a huge undertaking and I already struggle with time management. So feel free to be in prayer with me over this. (I mean right now I’m typing with a toddler in my lap who is periodically clicking on random things….concentration….the struggle is real!)
I still have my days where the perfect storm of emotions and tiredness hit and I just want to go to bed but I press on. It is an odd juxtaposition of feelings – on one hand I am energized at what feels like a new lease on life and I’m ready to tackle the world head on – and on the other hand I realize how fleeting this life is and I feel overwhelmed at all the things I need to accomplish – I get paralysis of analysis. The hands of the clock seem to be moving at warp speed. Either way I just keep taking it day by day and try to give myself much grace.
They call it “Survivor’s Guilt” but I don’t like that term. I don’t feel the least bit guilty – I have done nothing to contribute to my “beating cancer.” In fact, I don’t feel like I beat it at all – it beat me down, but in a good way. I feel like I have crawled out of the burning building just in time. Or better yet, to keep with my mixed metaphors, been drug out by the firefighters. Making friends in the cancer world is sticky business – they are some of the dearest friendships but tough at the same time. I have some friends who, like me, are doing great. I have others who have passed away and some who are still fighting hard and can’t seem to get ahead of it. It’s messy getting into these relationships because it pulls on your heart so hard. There is a certain understanding that those of us who have “been there” share and we need one another to talk to. But it is also a constant reminder of “that could be me.” When I had radiation they had music playing in the room every day. My team seemed to have an affinity for country music 🙂 On my very last day, which was also my last day of all my cancer treatments, the song that played while I got my last treatment was “But for the Grace of God” by Keith Urban – totally different meaning, but I thought the overall sentiment so apropos for the day. I don’t feel guilty, not one bit. It is ONLY by God’s grace that I am still here and it is that same grace that will continue to heal me physically, emotionally, and spiritually. I am thankful. I am humbled in the biggest way. Until next time friends…..
Comments from CaringBridge
Nancy Sullivan — 4/5/19
Thanks for the update! Love reading about you and the wonderful way you put words together! You are truly talented! Still praying for you daily
Gerry Brooks — 4/5/19
I know that Dick and I are in South Carolina, but we continue to think of you and your wonderful family. We are both so thankful for the wonderful Doctors and all the prayers that God continues to answer.
Amelia Geis — 4/5/19
Grateful for finding a new beautiful friend at the Proton center! God is so good and we continue to pray for you and your family! You’ve had an incredible journey💐
Shannon Miller — 4/5/19
I’m so thankful for you! And so thankful that you’re doing so well! And so proud of you! I just love you to pieces!
Cancermamma 