Note: I wrote this in December, 2014, when I was at the bottom of a pretty low low. I didn’t publish it then, but it was good for some catharsis. As I read it now, I’m in a much better place and prednisone is far, far away. Many of the things I wrote about have resolved, and that’s a great thing! Again, the body is an amazing creature capable of changing in amazing ways… By the way, Weepy Wendy is not welcome ever again. I do not like her.
As I move on along through this adventure, I find myself noticing things about my self, and my body, that frankly I hadn’t expected to note until I was in my seventies or eighties. Sure, the hot flashes they tell me is the tumor talking, but sheesh! Bright red and soaking wet in twenty seconds or less, and then freezing again. I never used to freeze!
My ankles, feet and legs are swollen and tight, but no one can tell me why, nor do they seem to care. So, they just stay swollen and tight.
My body frame has gotten smaller, never thought I’d see that before I was seventy, and much less bulky.
I HAVE NO STRENGTH. I was the strongest person I knew, and I was dang proud of it. The lifting and physical work of the fire department, and the training it took to continue to do the job well all worked to keep me strong and healthy. What the heck happened???? This past weekend I went up a flight of stairs and about coded.
I continue to manufacture about 1500cc of fluid out of my lungs daily. I know this because I drain them daily. I drink and drink and drink, and pee once a day. I’ll spare you the fun changes I’ve noted that most older folks note having to do with various stages of digestion. Let’s just say none of them are pleasant.
There is still a hand on the right side of my trachea and it’s pulling to the right, but I’m told not to worry about it. Since the right lung ain’t working anyway, it’s no real concern.
I itch! I itch so badly! This afternoon, I’m filing each of my fingernails down so I can’t injure myself anymore. Seems when I’m sleeping, I begin to scratch my arms and legs, unknown sources of itching, and then bleed all over my bedding. I’m not on any narcotics, so that’s not the source of the itch, but I’m tellin’ ya, I itch!
When I swallow I can feel something impinging on my esophagus. I don’t know if it’s inside my esophagus, or pressing in from the outside, but it’s a bit uncomfortable.
There are bright and shiny things at the periphery of my vision, especially at night. A common side effect of the crizotinib, at times they’re so vivid I duck out of the way.
For about the past 6 days, I have cried the entire time. I’ll start to cry as I’m driving down the road, sitting down to eat, or beginning to talk to someone. I’ll be walking down the aisles of the market, and I start to cry. Just outta the blue, tears flowing down my cheeks, face all scrunched up and icky looking. Weepy Wendy’s come out to play. I do not like Weepy Wendy. I’m hoping she was invited by the prednisone, and will be kicked out on her keister soon. I do not like Weepy Wendy. Am I repeating myself???
My voice is gone. I’ve read the tumor can paralyze your vocal cords, so I don’t know if that’s the case, or it’s just that I have insufficient air volume to push through them. Either way, the sexy secretary voice is here to stay…
All of this and more amazes me. I’ve always tried to be aware of my body and what it can do. I was always excited to learn something new for it to do, to accomplish. Now I’m seeing my body do different things for different reasons, and it leaves me in awe. I hope it doesn’t seem like I’m complaining (okay, maybe just a little) about it. I’m just pretty struck on what you can ‘feel,’ what you can detect, if you stop and just be. It’s all pretty amazing…
Post Note: I wrote this in December, a not-good month for me. Please remember how much I have improved since beginning my care at City of Hope. My digestion is back to normal, swollen legs resolved, sexy secretary voice gone, hot flashes still here-dang it, lung fluid diminished, and NO MORE WEEPY WENDY. I did not like her, did I mention that? I no longer itch, thus I no longer bleed, my swallowing is back to normal and there is no more pulling sensation on my trachea. I am, essentially, back to whatever state I called normal, and resolve to stay there with my new magic mystery medication. I even am exercising again, and will begin a pulmonary rehab program soon.
So don’t let the words get you down. They just describe experiences I HAD, not am having, and are far in the past. I am a grateful, grateful kid, and know where I am in this crazy world. I send strong thoughts out to others so they have as good fortune as I.
Take care all, and have a fabulous weekend. Best fishes, and with love!
Wendy, thanks for sharing this older blog. Your writing is so personal, and sharing your vulnerabilities and fears makes me feel like family somehow. I’m so glad that you are out of that period, looking forward to better times. I’ll soon be back in Mexico, cruising from PV back to La Paz. I will toast you from your old cruising grounds.
Be well, Bill
Wendy, Thank you for sharing and thank goodness for modern science (and medicine). City of Hope is very empowering. You are a true inspiration for all!
All the best to you!
So happy you are doing better Wendy! That is awesome news 🙂 Hugs to you from Luanne and Vaughn
Wendy you are still an amazingly strong women. The strength to hold on & fight, is your strongest attribute! Keep fighting & keep smiling!
Wendy, it was great seeing you the other day and how upbeat from the time before. Did you get all moved into your new place. It will make your live so much easier and more comfortable
for you. We are doing a B at Sea this AM for Tom Riley. Hang in there and get better, Ray
Wendy, I have water from Lourdes which I will share with you, long story but I’m a true believing convert.
Wendy!! It is fantastic to hear that you are feeling sooo… Much better and things are looking up. You hold a special place in our hearts and know that you are always in our thoughts & prayers. Life is Good. Luv you girl.😘💗
Awesome news Wendy!!!! Only the good stuff is going to happen now….your mystery meds sounds like the answer. You are in our thoughts every day so keep the good posts coming! With so many prayers and so much love, how can you lose??!!!!
I sure love reading your post. You have always had a way with words and you write exactly as if you were speaking. I am so glad you are doing so much better and finally getting the care you deserve. My mom did some cancer study test at City of Hope and it worked wonders for her. She is now 2-3 years cancer-free with minor after effects from treatment. You’re in my thoughts and prayers. Dan
Glad you’re feeling better, stay strong…
Wasn’t Crizotinib a king in ancient Mesopotamia. Or maybe a djinn. I’m not sure.
It is wonderful that you’re feeling better.
Wendy girl, thanks for sharing highs and lows. Oh how far you have come! Spring is just a few weeks away, and with it comes new growth and strength. Weepy Wendy is no more! Here’s to pulmonary rehab! Breath deep, and kick ass!
Cheers and best fishes back at ya,
Wendy, so happy to hear that you are doing so much better. Writing this from the boat at Palmira in La Paz. A great day shaping up today, and then pretty windy tonight and tomorrow, then we will head on out when it calms down. Sushi Koi is on the agenda before we go, but not as fun without you, Eric, And Eulalie to share with!
We see many of the same characters at the docks…I am sure you would know them while I just recognize them. Was hoping to get some good shrimp but heard on the net this am that there is a batch that got here that had listeria, so won’t be having any this week. Bummer.
We’re off to Cabo to be there around March 6th. On March 8th we have a captain coming who will take the boat on the bash. Jon has decided he really didn’t want to do it, and I wasn’t looking forward to it. So we will fly back to the house in Arizona and then drive down to San Diego to meet the boat. Privilege will go on the market once it’s back and cleaned up. I’m pretty sad about it, and know how you must feel selling Willow.
We had a very slow start this season because of a few unexpected boat chores. We put the boat in the water in San Carlos last November thinking in January when we came back we would be ready to go. Then in January as we were getting ready to leave Jon changed fuel filters and then the engine wouldnt run well. Tried bleeding the lines, and no joy. Got the engine guy, and turned out we had gunk in the diesel and it clogged the pick up tube out of the tank. So then the fuel got polished. As we were getting ready to leave, Jon noticed the packing gland dripping more than it should and since the boat is doing the bash needed to get that repacked. So back out of the water, and then we were caught in Marina Seca waiting for high enough tides for a week. Then did an in water adjustment of the packing gland while at the dock, and noticed the hose that pumps the sea water over had a crack forming where it comes off of the fitting. So tried finding parts, and ended up just cutting it off a little shorter and rerouting a little, which seems to work just fine. Headed out but the packing gland started dripping lots more, so back in for more adjustments. We finally got nice weather, but wind on the nose, but decided we needed to get going, so motored on down.
I hope with the improving weather you will be able to enjoy the water, and that your health continues to make what it sounds like are very dramatic improvements.
So good to hear your doing better. Don’t worry about Weepy Wendy, it happens and with all the meds and changes, I think that is where the itching comes from. Your writing and sense of humor make me
fell like you were here again. How are the monsters? Take care. Always