Allow me to start this post with an apology. To you- my family, friends, and readers. Because this post is about two weeks overdue, and so many of you are still reaching out to me to ask about how I am doing, how treatment is going, and how you can help me and my family. But the truth is- I am doing GREAT! I am eating and drinking again, my energy level is way up, and I am feeling like “the old me”. Which means that I am back to “busy”- trying to get my kids ready to head back to school, getting my house back in order, and preparing to launch my new cabi clothing business. And somehow I've allowed all of that “busy-ness” to get in the way of letting everyone know that I'm feeling fantastic!
So now that my apology is out of the way…. let me fill you in as to how the last few months have gone.
Back in May I shared with you in this post that I had been diagnosed with head and neck cancer and had surgery to remove a tumor from my left tonsil, as well as 69 lymph nodes in my neck, 8 of which contained cancer cells as well. At the time I was meeting with teams of doctors to decide on my next phase of treatment- with radiation and chemo. I was doing my research and asking questions, but I had to make a decision rather quickly because the doctors agreed that treatment needed to be underway within 30 days of surgery. This gives the patient just enough time to heal from surgery without allowing the cancer cells to run amuck in the body for too long.
On June 10th I started treatment- radiation to both sides of my neck five days a week for 6 weeks, and chemo once a week for 6 weeks. For this type of cancer- radiation is what is really leading the battle and chemo is used primarily to boost the radiation's effectiveness. The chemo drug used (Cisplatin) did not cause me to lose my hair (HUGE hooray!) and I really never felt sick during or after a chemo treatment. It was the radiation treatments that were brutal. And not while you were in the treatment room- getting radiation is a lot like having an X-Ray- you lay on a table for 10-15 minutes and hear clicking from the machines and catch glimpses of equipment moving around you, but you don't feel anything while it is going on. It is the after-effects of having an area radiated that is what is so brutal- particularly in the neck area. Everything becomes so sore- it becomes extremely painful to swallow, and your body starts to over-produce mucous in an effort to coat the area that is being radiated.
3 1/2 weeks into treatment I also developed an issue where nearly every time I swallowed, I would throw up. You know what sucks even more than radiation to your throat? Stomach acid coming back up through your throat that is already sore and raw from radiation. Within days I stopped swallowing completely. I also lost my voice and was reduced to communicating via hand signals and whispers.
One of the things that I took into consideration when choosing the team of doctors I would use for radiation and chemo was the fact that my local hospital/cancer center would be very close to home if I ran into side effects that caused me to seek help after-hours or on weekends. (My good friend Alison who is fighting her own cancer battle right now made that very wise suggestion.) But what I didn't know at the time is how much I would come to rely on this incredible team of nurses and doctors who took care of me every single day, and never stopped searching for new solutions to try to battle the side effects I was experiencing. From nausea, stomach acid, pain, issues with my bowels, to the constant production of thick mucous- they helped me to handle all of it. When I reached the point where I could no longer swallow- they treated me with daily hydration treatments (IV fluids), and they secured a last-minute appointment with a surgeon (before he headed out on vacation) to install a picc line (catheter) in my left arm, and arranged for a visiting nurse service to come to my home and teach me how to hook up nutrition bags (TPN) via the picc line so I could get calories into my body too. They even set me up with a small suctioning machine (similar to what a dentist uses) to help me deal with the mucous issue.
Even though I was no longer swallowing, I was still throwing up at least a few times a week. And by my 6th week, my skin was very “sunburned” from the radiation, I had no energy, and I felt pretty awful. With just three days of treatment left, I walked into the cancer center with plans to cry my eyes out and beg them to just let me skip those last three days of treatment. The problem was…. my radiation oncologist was on vacation, so there wasn't really anyone to cry to who could agree to let me stop. So somehow I got my butt back on that table those last three times.
Another fun fact of radiation is that the effects build over time- so even though you are high-fiving folks as you walk out of that room for the last time- you've not reached rock bottom yet. The effects continue to build for another week or two. And you aren't done with visiting the cancer center either- I was still going almost every day to have my blood pressure checked (it had become pretty low), and to receive injections of meds into my picc line to manage the nausea and stomach acid. I would grill the nurses every day, “When do most patients start to feel better?”, “When will I be able to swallow again?”… and the big one, “Will I be able to go on vacation with my family in two weeks?”
Because long before I was diagnosed with cancer, we planned a family vacation to the island of St John, where Steve and I honeymooned, so that we could teach the kids how to snorkel. And our vacation was scheduled just 2 1/2 weeks after my last radiation treatment. Fortunately, my team of doctors and nurses knew just how important this trip was to me and my family- and they assured me that I would be able to go. Yes, I would need to travel with all of my nutrition bags (packed in a cooler with ice packs and checked with our luggage), and I wouldn't be able to swim or snorkel due to the picc line… but none of that mattered to me. My family… not to mention me… deserved this vacation!
That week away healed me.
While on vacation there were no daily trips to the doctor's office, I had zero responsibilities. I sat on the most postcard-worthy white sand beaches and read a book. I watched my kids swim, snorkel, and build sand castles. I was able to spend time chatting with my husband. I started to sip water again. I took little nibbles of food. Every day I would sip a little more, nibble a little more. And by the end of the week I was taking long walks and feeling amazing. My voice came back. Within a week of arriving back home, I was able to eat small meals throughout the day, and I had the picc line removed. I was finally free of all medications, and the side effects were making their way towards the exit.
The most emotional day of all was when I met with my oncologist who told me that I don't need to see her (or any of my doctors again) until October, after a PET scan which will verify the results of all of these treatments. I sobbed in the parking lot because that felt like the moment that I got my life back again.
I am now 5 1/2 weeks past my last radiation treatment. My throat is still sore on the left side. Most of my sense of taste has returned, but I still have a hard time with food texture. My mouth is dry- and I have to wear invisalign trays at night filled with fluoride to protect my teeth. But compared to where I was- these just feel like minor nuisances.
It was a tough summer- and I wouldn't have gotten through it without the incredible love and support of my husband, my children, my family, and friends. I am so grateful to everyone who was involved in my treatment- they met me every day with a smile and made me believe that I could do this hard thing. It feels wonderful to be a point that I can celebrate my recovery with all of you.
So now it's time to get back on with living- which for me includes getting back to blogging! I have so many projects and ideas that I can't wait to share with you!