A little humor since all I do is complain about the side effects..
I can count on one hand the number of radiation therapy appointments I have left, AND the number of days I have left to take my chemo pills (for this first round)! 3 more days of RT, 2 more days of Temodar! Week 6 is officially over!
Let me share with you what I am most excited about:
Safely weaning off the steroids. Yes, yes, yes! We have grown close and might have bonded a bit when I knew how much of a help they were, but man am I over it. I can't wait to have my face lose it's puffiness, I can't wait for my knees to stop feeling like they are going to burst, I can't wait for my feet to stop hurting all the time, I can't wait to not feel like I want to eat everything in sight due to increased appetite, I can't wait to return to a normal sleeping schedule and sleep throughout the night in a deep sleep, and I can't wait to eliminate two pills a day from my diet :) The wean should start Wednesday or Thursday, and I will be off completely within a couple of weeks (pending no issues, but our fingers are crossed). I've said it before and I will say it again, though, as much as I hate the side effects, the alternative is MUCH worse. More power to those who find alternative medication or natural ways to handle the conditions the steroids treat so they don't need to take them, I am not that strong.
Fun fact (or disturbing, you can be the judge): I was researching how Decadron impacts your metabolism so I could better understand and read that "Dexamethasone (Decadron) is given in legal Bangladeshi brothels to prostitutes not yet of legal age, causing weight gain aimed at making them appear healthier and older to customers and police." https://en.wikipedia.org/wiki/Dexamethasone
Turning off my 5:30 AM alarm for my anti-nausea pill and my 6:30 AM alarm for my chemo pills. I think Curtis, Tucker & Rambo will be excited about this one, too.
Being able to sleep in and not need to leave my house every weekday morning to at 7:15 for RT.
Related to the first one, I can't wait to start walking/running and resuming a lot of the workouts I enjoy. I went to a step aerobics class one day a couple weeks ago and couldn't walk for a few days because my legs & knees & feet were so sore! I am doing this half marathon no matter what. I am not hauling ass to push myself and lead to injury, but thanks to Fritz's advice, will incline walk and slowly start running so that my strength and endurance both get some work.
I would say I am excited to not feel overly tired but I am happy to say I haven't experienced that as much as I was expecting. Don't get me wrong, I have my days where I nap in the afternoon but I just try to keep energizer bunny-ing it through and usually can make it without a snooze.
Memory. It's a joke right now. I posted about it last time but honestly I can be on my phone doing 1 thing, think that I need to do something else still on my phone, close the current app, and then I can't remember what it is I wanted to do. I can't keep track of who I say things to, and if there's a break in conversation then the thought has left the train station and far gone. Here's to hoping the person I am talking to is on top of things and paying attention to reel me back in. They say my memory/quick thinking may be a little worse than it was before, but the level it is right now is the lowest and is impacted by the treatment so it will be better than it is now. High five! I'm still sticking to lists! I have always loved office supplies and the number of adorable notepads and list pads out there now is INSANE. I love it.
Hair loss. Similar to being tired, I think I am lucky when it comes to this one. I've had my ups and downs with this and where I'm at right now is not GREAT, but I'm trying to feel comfortable with how I look and the baldness peaking through. It's tough, and I know those around me know, I just really need to stop worrying what other people think and own it. I have been wearing hats & scarves out in public, but I did just get my hair cut to help hide a lot of the thinning (pics down below). I have heard that hair continues to fall out 2-3 weeks post RT so we will see! Currently it's only the right side and the crown area, not the left side. I think that's where it will remain thin so if that's the case, then so be it. The reason I feel lucky is because so many others have had a lot of hair loss, even if their treatment was only being done in one area.
There isn't too much to be sad about, but I do want to say that I will miss all of the people I see throughout the week during RT. The team that runs my room is awesome, they always put on the music I want, remember things I say I'm doing over the weekend and ask me about them, joke around, make me laugh, they are great. The woman at the check-in desk is always so happy and positive, the nurses and MAs are fantastic, and the other women I have met in the waiting room are always happy, positive, and willing to chat. I have not had a bad experience throughout the past 6 weeks. I'm sure if any of these people mentioned above were anything less than pleasant, I would not be 'enjoying' this experience as much. It takes the right kind of person to work in oncology and I am thankful for all of those part of the Henry Ford team.
Not only have I had great support from the hospital staff, but friends and family as well. FIRST: I have many 'Thank You' cards that need to go out. I am not ignoring or disregarding anyone's card or gesture (unless you're my aunt Julie who specifically put not to send a thank you for one of her cards..but you're still getting one :) ). I will be working on these possibly this weekend if not over the next week. One friend, however, who was not someone I have been close with even, did one of the coolest things in the entire world for me. Why? I am asking myself that. She didn't have to, she wasn't benefiting from it. But it's people like that who are selfless and do things for others out of the kindness of their heart rather than expecting something out of it. This girl's name is Trisha.
As you all probably know, Andrew McMahon is someone I love. I saw him in concert recently and got a picture with him. I actually got one a few years ago too when I saw Jack's Mannequin at the Fillmore (posted them both below)! Andrew is a Leukemia fighter and survivor and started the Dear Jack Foundation. The mission of this foundation is to 'support initiatives and provide programming in order to promote positive health outcomes for adolescents and young adults (AYA), ages 15-39, from the moment they are diagnosed with cancer through survivorship.' You can read more about the mission & the foundation at the website: http://www.dearjackfoundation.org/. The reason I am explaining this is because I received an email from the Director of Programs & Patient Outreach from the Dear Jack Foundation saying that my friend Trisha had reached out to her about me and she wanted to know my story and if there was anything she can do to help! I responded with my story this far and explained that I'm not sure how she can help me but that I would like to be involved with spreading awareness and support in any way that I can. She then directed me to the volunteer coordinator for a foundation they are partners with called 'Love Hope Strength'. "Love Hope Strength (LHS) is now firmly established as the world’s leading rock and roll cancer foundation. The organization was created in 2007, registered as a charity in 2008 (IRS #26-0528852), and co-founded by Mike Peters and James Chippendale. Mike is a 3-time cancer survivor and an internationally acclaimed singer for the Welsh rock band The Alarm. James, a fellow cancer survivor, is a respected insurance executive specializing in the music industry. Together they had the vision that LHS could literally, “Save lives, one concert at a time! Since 2008 we have been hosting marrow donor drives at concerts and festivals across the globe via our Get on the List campaign. This program encourages people to sign up for the International Bone Marrow Registry via a simple cheek swab, taking our concept of, “saving lives, one concert at a time,” to a whole new level." By becoming a volunteer for this organization, I can attend concerts and festivals in my area and help get people on the list for bone marrow donors which saves lives! There are more opportunities through this organization that you can read about at http://lovehopestrength.org/. I went through the application process and have reached out to the volunteer coordinators so that I can start to get involved. I am so incredibly happy to be able to be a part of such a wonderful foundation (Dear Jack and LHS). Hopefully I can extend some of the patient projects to hospitals in my area! One more thing...the woman I emailed with from Dear Jack told me she was sending me a goodie bag AND she is adding me and my story to an area on the Dear Jack website titled "Letters to Jack" which is a collection of real and inspirational stories from the AYA cancer community. My sister told me that she thinks it's my therapy reaching out to others and spreading awareness, I think she's right. Andrew & I 2016:
Andrew & I 2013:
I can't remember what else I wanted to post about, but next Wednesday will be a celebration of some sort! I might enjoy a virgin margarita or something crazy like that, maybe play some Photo Hunt, get my nails done. Who knows!
Here are a few pictures of my haircut done by the fabulous Samantha at R. Collective in Clawson (need a stylist? call her!). You can kind of see the thinning/bald areas through the hair but she did a great job covering them up. Me? Not the greatest yet but I try.
Now for a weekend of celebrating a new marriage, going to a support group at Henry Ford, riding bikes down Woodward for the Dream Cruise, attending a the Head For The Cure Tigers game, and sticking with traditions and open schedules on Sunday. Jet packed but that's us and we love it.
XOXO