Just wanted to thank you for your interest, kind replies and encouraging comments on my page, your support means the world to me. Your thoughts and prayers are the reason I am doing so well and I am so grateful for every good day.
For many reasons, OKEMO Day 2 was a lot like one of my favorite runs at the mountain- Tuckered Out. It’s one of those familiar trails that you typically warm up on, it’s also the one you’re willing to do when you’re just about done but the lift chairs haven’t stopped for the day. This time around I knew what to expect, I had my own Cold Cap, I packed a backpack full of snacks, and drank more water days prior, that I have in my entire life combined, to get my veins and body ready to shred it up.
This experience has taught me how important it is to communicate every concern to my medical care team, despite how small it may seem, they are there to help make this bearable, so my advice is to let them. When I told my IV nurse that this was the worst part of my day she placed a hot compress on my hand, drew my blood, and got the IV in before I finished whatever I was going on about.
Then it was quick lift to the 9th floor, weight check, vitals, ColdCap, premeds and OKEMO. I noticed my nurse manually dilute my Benadryl as it burns going in but as soon as I said thank you I closed my eyes. I woke up hours later after treatment was completed with 20 minutes of cooling left. I must have really tore it up because I was both starving and exhausted. Nothing sounded better than a burger and a beer so Kristina and I headed to Tasty Burger for our final run. The burger is just what I needed but for some reason I have lost any and all care for alcohol. Buzzkill, I know. Prior to starting treatment I was warned about things tasting different to me, and to my surprise, the taste of food and alcohol remained the same. It is my allure to alcohol that’s diminished. So in all, if I could hand pick my side effects I’d stick with the hand I’m dealt.
It is now three days post my run on Tuckered Out and aside from my aversion to delicious wine and ice cold beer I have had little fatigue and minor loss of energy. I am so lucky to report that my cold cap is my saving grace. Unlike my first time at OKEMO where I noticed significant hair shedding on day 3 I have had 0 shedding this week so far and I will be holding my breath for the next 10 infusions hoping my lucky streak continues.
**FDA recently approved PAXMAN– Scalp Cooling in the US – the leading expert worldwide, and I was lucky enough to enter a study at Dana Farber. I hope and pray that scalp cooling becomes the standard of care for chemotherapy patients. It offers privacy and control, two factors often taken by chemo. So stay tuned for more on my cold cap experience. I will share hair care tips and all cold cap information I wish was available to me prior to starting.