2015 was quite a year for me. In the span of 12 months, I found out that I had HPV+ throat cancer, had surgery to remove the tumor and 69 adjacent lymph nodes, was treated with chemo and radiation for 6 weeks, and then had clear scans which showed that I had beat the cancer. Wow- some pretty big stuff! (You can read more about my cancer journey here and here). So as I sit here during the last week of this year and reflect back on that tough time, I also want to look for the lessons that fighting cancer taught me.
If you are thinking this post is going to be all about how I've now learned to slow down and be more appreciative of the blessings in my life….it's not. Yes- cancer slowed me down. To a sluggish crawl for a while. But once I was past the toughest part of my treatment, my life sped right back up again. In fact- if I had to pick an overriding mantra for myself during this entire ordeal- it was “try to keep things normal.” I knew the treatment would be tough, but I wanted my family life to feel as normal as possible- for my kids to have a somewhat-usual summer and for my husband to continue to go to work. And once the treatment was done- all I wanted was “my life back”- to return the routines and schedules that shape my days. And once that happened, it is amazing to me how quickly you are back to the business of running your family and how fast the days fly by once again.
This post is really about the lessons I learned and the decisions I had to make when I was in the middle of my fight. If perhaps you know someone who is at the beginning of their own journey of fighting cancer- these words might help….
#1 Pay attention to changes that don't make sense
I knew that lump in my neck that wouldn't go away wasn't normal. But in true busy-woman fashion, I could have ignored it. For months. But fortunately I didn't. And when I went to my doctor and she felt it, even she wondered at first if we should take a “wait and see” approach, but as we discussed it, she agreed I should have it looked at. Thank God.
Once I had the ultrasound that determined it was not my thyroid, things moved quickly into the needle biopsy stage, followed by a PET scan and then surgical consultation. Things were moving rapidly…
#2 Do your own research
I came to every doctor's visit armed with research that I had done online about treatment options. I printed off excerpts from medical journals, knew what institutions were doing what kinds of medical trials on my type of throat cancer, and challenged my doctors to think about how we should treat this. I sought multiple opinions from chemo oncologists and radiation oncologists before I decided what I wanted to do. It was emotional and exhausting to do this- but I felt that for me it helped me to develop the right treatment plan.
How did my research change my treatment plan? How the chemo would be given (weekly vs a super dose every 3 weeks). I influenced the cocktail of accompanying drugs given with the chemo by asking every doctor about each of the recommended drugs and why they would / wouldn't use them. (Don't assume that everyone does things the same way!) I also influenced how much radiation I would receive- and I didn't go with the lowest amount suggested by some of the doctors. I needed to know I was getting the right balance of kicking this cancer's ass and not damaging my throat for the rest of my life
#3 The decisions are yours to make!
And if you didn't notice from what I said above…. every decision is yours to make. Every one. Whether you are going to swallow this pill to whether you are going to have that surgery. You have the power to say yes or no. Each day. Every step.
When you are sick and beaten down, you start to feel as if you have to do everything your doctors and nurses tell you to. And honestly- they only have own best interest in mind (of course)! But that doesn't mean you have to use every mouth wash, gel packs, and pain killer they give you, if you don't feel they are making a difference in your outcome or pain management.
Also- sometimes the best solutions are the simple ones. At one point I had severe mouth sores. They woke me up all night long because they hurt so badly. I was given all kinds of rinses, and oral and IV pain meds for them. Finally I went to the store and bought a throat spray that I had used as a kid when I had a sore throat, and sprayed it right on those sores (after showing the bottle/ingredients to my doctor first!). Nothing worked better. That spray numbed those sores… for at least long enough for me to fall back asleep.
#4 Attitude is everything
If you ask any of my doctors and nurses why they think my treatment and recovery went so well- they will tell you that it was about my attitude. I think it was about a lot more than just my attitude (see #5 below). When I first started consulting doctors about treatment, most of them encouraged me to get a feeding tube put into my stomach because they knew it would likely become impossible to swallow. But to me- that signaled early defeat- I couldn't go into my treatment schedule knowing that I would be in so much pain that I wouldn't even be able to swallow my own saliva. To me, that feeding tube was going to be an attitude-squasher and I wouldn't do it. (In the end- the doctors were right and I should have had the tube! Instead I ended up having a picc line put into my arm and received nutrition through an IV bag for 4 weeks).
But getting up every day and putting on something cute (thank you, new Cabi job!) made a huge difference. I never skipped showering and rolled into the hospital wearing old sweatpants- although no one would have cared! Taking the time to take care of myself and get ready (even though it zapped my energy a bit) helped me to feel like I was fighting this my way.
Telling people (and therefore reminding myself) that this was just a moment in time that I had to get through, and that I would be fully cancer-free and healed in the end was the belief and mantra that carried me through.
#5 Ask for and accept help
This was hard for me…. because asking for and accepting help meant that things in my life were “not normal”. And as I mentioned earlier- I was all about “keeping things normal.” So I didn't want my friends to set up a meal schedule for me. I didn't want to be driven to/from my appointments. Those offers of help while so wonderfully intended made me feel like the patient I didn't want to be.
But you know what was awesome? People stopping by with cookies for the kids, flowers for my coffee table, and even a back scratcher. The texts friends sent that just asked how my day was going. The daily text exchange with a friend who was battling colon cancer that I could share every nasty medical detail with- and who totally “got me”. The family members who stopped their own lives to spend a week or more at my house to cook, clean, and take care of the kids, so that I could feel like our family life was somewhat “normal.”
And more than anyone- it was the nurses that I saw every single day who helped me to work through every one of my side effects that were my greatest sources of help. You might think that a cancer center would be a depressing place- but when I tell you how hard the nurses worked to make things upbeat, silly, fun…. it sounds crazy- but it's true. From the guy who made sure to blast awesome music on the speakers while I was receiving radiation, to the chemo nurses who got me hooked on different Netflix series to pass the time, to the nurses who tried different foods everyday with me to try to find something palatable… and even made sure my birthday felt like my birthday. I am so grateful to each of them for their help.
Anonymous says
I admire your resolve..courage..and wish you a blessed healthy happy 2016.
Sharon says
Thank you so much! I appreciate your encouragement!
Adrienne P. says
Beautifully written, Sharon! Wise advice from a strong woman… I will remember and return to re-read this. Much of your experience resonates with me…Our youngest has a rare and challenging medical condition (EB) and spent 133 days on the PICU at birth (that’s from August 22 to Jan 4!). With a 4-year-old and 2-year-old at home, we learned to get over the awkwardness of asking for and accepting help (one friend surprised us by cutting our lawn so my husband and I could trek to the hospital together). We also learned the importance of advocating for her with even the best of docs/specialists, which we continue to do. Your ability to “put your game face on” and do so much research in the face of all you had to accept, understand, and manage (on behalf of yourself AND your family) is amazing… and serves as an incredible model for your children how to handle adversity. I am so happy to know you are starting a new year able to see it in the rear-view mirror…..except all those great lessons, which you carry forward and are so kind to share with us. Best wishes for a great 2016 celebrating life!
Sharon says
Thank you so much for sharing your story with me Adrienne. I can only imagine how difficult it was for you to manage a newborn in the PICU, two little ones at home, not to mention the hormones that rage through your body right after childbirth. I am so glad that you were supported by friends and family- and that you too learned how to navigate the waters of advocating for your child and your family! I wish you and your entire family the best in 2016 as well!
Lynne Thomas says
Oh Sharon you are a star!!!! You are correct that attitude is everything in order to make it through all the treatments. I am a mom of only 2. However, when I saw you in your radiation mask you brought me back to the years of 2010-2014. My 10 year old boy was diagnosed with a cancer call Rhabdomyosarcoma of the nasal pharynx. He also had very strong chemo, as well as 6 weeks of proton radiation. He also had the bad sores in the throat and had a feeding tube for meds and food. Once he finished the protocol we had 3 months cancer free. Then christmas rolled around and it was back and we had another protocol (trial). Finished that one and it was still there plus the nodes in the neck. Needless to say he had all the nodes removed and now he had hockey sticks on his neck. (thats what he called them). Then it was back to proton radiation for 6 weeks. (we still have the mask)
still the cancer invaded his nasal cavity. We then tried an out of the box last ditch attempt treatment called intra-arterial chemo this is when they sent the chemo up through the femoral artery directly into tumor. It froze the tumor and stopped the growth for a few weeks but then started growing again. The many many people that kept our family afloat I will never be able to thank just like you. Clean sheets are the best thing!!! Sam did not make it however his strong positive attitude kept him going for 4 years and his battle. Our mantra was that there was always someone else worse than what he was going through on any given day. I do wish you all the best and that God is with you and keeping you strong because we all know we can’t do it by ourselves. All that being said I was wondering if you got proton radiation? Also, did you ring the bell for the ending of the treatment?
Sharon says
Hi Lynne-
Thanks so much for sharing the story of your sweet Sam with me. I admire the strong and positive attitude that he had and I hope that the memory of that amazing attitude gives you comfort. My heart goes out to you and your family. I can imagine no greater loss than that of a child.
To answer your questions- no, mine was not proton radiation. I had a different type of cancer than Sam, and the radiation I received was primarily on my lymph nodes where my throat cancer had spread. Even though the lymph nodes were removed surgically- the radiation was meant as an insurance policy to makes certain that they got all of the cancer cells. And no- I didn’t ring the bell for ending treatment- I have never heard of that before. I feel more like I crawled out of treatment! It wasn’t until I went back a few weeks later and the doctors told me they didn’t need to see me for 3 months that I felt like ringing a bell!
Anonymous says
Yeah for you Sharon!!! So glad you are doing well. I want to pass this blog on to a friend. Beth Jacobs Hoffman we all need a pick me up and Sharon ‘s blog can do it. Thank you for sharing and thank you Suzi for sharing your amazing daughter ( I know you are Steve’s wife but am sure you are loved as a daughter) ,
!Donna Lang
Sharon says
Thanks Donna! Yes- please pass my post along to your friend, and let her know she can always reach out to me as well!