Thank you for all for the continued support as I begin the first of my chemo treatments tomorrow. The cards, flowers, gifts, food, emails, phone calls and texts have been key in keeping my spirits up. Good thing chemo is 5 hours long because I have a TON of thank you notes to write. If I finish before 2014 it will be nothing short of a miracle.
On the leg front- every day we are seeing small improvements. I have been seeing both a physical therapist and an occupational therapist twice a week which has helped tremendously. During a recent physical therapy session my therapist witnessed a full muscle contraction during one of my exercises. This is a good sign! My OT noticed improved strength in my knee- also promising. Still with the cane but hopefully in a few weeks we will see vast improvements.
So in the spirit of keeping my head in the game, mom, dad and I went to a salon last week that specialized in wigs (great recommendation Mary!). The owner, Randy, was kind and encouraging. While I originally envisioned this visit filled with tears and stress over my soon-to-be balding head, Randy and my parents made sure it was a fun experience. Many laughs were had when Randy tried to turn me into a blonde. I did not pull it off well and I have pictures to prove it. Luckily we did find a sassy long brunette wig with auburn highlights that I took a liking to. It’s longer than my normal hair and has way more volume….but what the hell? If I have to wear fake hair I might as well pick something more fun than my own. Randy was also kind enough to share that insurance covers one wig per CALENDAR year. Good timing on my part! I’m going back next week to scoop up a second one in 2013. Overall the experience was great and Randy even cut my hair free of charge. I cry often over the issue of hair loss but for a few hours this helped. I’ll take it.
So tomorrow is the big day. Leading up to chemo the emotional experience has been much like waiting in line for a roller coaster. At first you’re like holy crap I have to do this. Why the hell would I put myself through this?! Then your fears subside a little and you amp yourself up in an attempt to hide that “scared shitless” feeling. So you wait and wait and find ways to distract yourself until the rickety cart pulls up and you have no choice but to get on while your stomach tries to jump out of your mouth….yeahh I’m about there right now considering that its after midnight and I’m writing an update T-minus 11 hours before chemo (the steroids I just had to take aren’t helping the cause haha). I’m anxious and scared and just want to get the first round done with so I know what I’m up against. I’m hoping its bark is worse than its bite.
On that note I’m going to attempt to sleep…or at the very least some tossing and turning in the dark.
Goodnight supporters! Sending love and gratitude to you all.
This one will be short and sweet (at least in comparison to the others). After seven long days in recovery at Yale New Haven hospital I was finally appropriately released today after having met all of my milestones. My doctor was appalled that they tried to force me home before I was ready on Sunday. (I would be happy to reveal the name of the doctor that tried to send me home if anyone would like to stand outside of Yale and casually throw eggs at him).
I am still in pain from time to time but have my good friends Motrin and Percocet to help control that for the time being. One of the bigger hurdles is just the constant state of discomfort. After all of the trauma my entire body has experienced over the last week it is hard to sit or lay down and just be comfortable. I am hoping that this subsides sooner rather than later. Despite my discomfort I’m working really hard to regain my strength. I am able to walk around without a walker or help and get in and out of bed by myself. It’s not easy but I’m getting there. I will have a visiting physical therapist that will help in this process.
My doctor also told me that the surgery was very successful but we will still need to do chemo to be sure that all of our bases are covered for the cancer cells that remain. We can start as soon as one week but to be honest I’m not physically or emotionally ready. I have decided that I am going to give myself a little more time to bounce back from the surgery and process the reality of chemo. That being said I plan on starting my first cycle between Christmas and New Years. The plan as of now is to do 6 cycles of chemo. I will go once every 3 weeks for about 5 hours each session. If I start when I plan to start I could possibly be finished by May and hopefully have hair starting to grow back for the summer. This is timed out well because I know two beautiful couples that expect me to be shaking my tail feather at their weddings in August. I intend to do that just that 🙂 (Katie/Bobby/Molly/Josh- when it’s time for the bouquet toss I make NO promises that I won’t throw my wig into the crowd of bachelorettes just to mix things up).
That’s all I have for now. Thank you again for all of the love, positivity and prayer. Keep it coming.
The last two days in the hospital have been quite eventful. They removed my catheter, epidural, and NG tube (tube running from nose to stomach to suck out all the liquid). These are all huge milestones that I am very proud of though some come with a price. I had no idea just how much the epidural was managing my pain (my happy button). Once that came out I started taking all of my pain meds through an IV. One is scheduled every 6 hours and the other is as needed so I need to stay on top of it. Nothing I am taking compares to how amazing the epidural was. Today I’ll start taking Percocet (and no I won’t sell any to you- that means you Mom!)
Now that the catheter is out I need to get up more. Moving and twisting to get out of bed is incredibly painful and when they’re pumping a liter of fluids into you every hour the bathroom trips become more frequent. So although I’m getting up more I’m also experiencing more pain. Luckily my nurses are very good at ensuring that the pain is under control as soon as it flares up. Although I oddly enjoyed the laziness that a catheter allowed (weird right?) at least I’m slowly gaining back my independence to a small degree.
The best part of my week was when the tube came out of my nose. My sore throat went away and it allowed for me to move to a clear liquid diet and now a regular diet. Please remember that until yesterday, I hadn’t had solid food since Sunday. Tuesday I wasn’t even allowed ice chips and Wednesday until Saturday was only ice chips. I’m convinced that line “TONIGHT WE DINE IN HELL!” from the movie 300 was written to describe my dietary restrictions this week.
Since going on a regular diet I’m slowly reintroducing soft foods to my delicate belly. Yesterday I was able to enjoy oatmeal, soup, toast, yogurt and some pretty impressive Mac n’ cheese. Yale has a “room service” approach where you have an actual (extensive) menu and order whatever you like between 7am and 7pm. It’s amazing and the food is delicious. Well done Smilow Cancer Center!
So for those of you that are still reading (I know I tend to word vomit in these updates) I have a bone to pick with health insurance companies. So basically the hospital administration wanted me to be discharged today. Dispite still having no feeling in my left leg, not having a full day on a new oral pain medication, not yet seeing a physical therapist, having both legs swollen with fluid (Adema) and experiencing immense pain every time I merely get up to walk 5 feet to the bathroom disconnected people in suits think that I’m ready to do backflips out of this place. I honestly need another day. One of my nurses was kind enough to sit down with me and help me write down all of my arguments to stay an additional day. When a doctor that I have never worked with before came in to deliver the news I gave him all of the compelling reasons why I need to stay. He was so cold and had no regard for my feelings- just the bottom line. He might have well have just said “tough shit” to me and left. I was devastated. You have no idea how important one more day of care is for someone in my position. Luckily my nurses rallied and pulled every string they could. Ultimately a physical therapist examined me and made sure this doctor knew that it was unsafe for me to go home today. My dead leg saved the day! I will likely be going home tomorrow but at least I’ll have more time to get the support that I need in place.
I am certain if a health insurance executive was gutted, sewn back up, medicated and sent home abruptly like me they would be singing a different tune. Until that happens I don’t think anyone high up in those positions will ever see me as more than a dollar sign. It was a disheartening realization. Thank goodness those that work close to patients give their hearts and souls to us because those are the true healers, NOT the people that pay for it.
I am glad my family and I spoke up for what was right.