Quality time during a lengthy recovery

Luke turned 18 last week. A milestone that I appreciate being able to see. 8 months of slow recovery and lingering effects have definitely slowed me down, but I'm happy to be able to spend time with Luke as he looks for colleges. This photo is us touring select California campuses. We made it up as far as San Luis Obispo, and need to make another tour soon for UC Santa Cruz, Stanford, and Berkeley.  

As for the lasting side effects of the radiation, I'm challenged with chronic swelling of my neck, called lymphedema, which puts pressure against my vocal cords. The lymph nodes in my neck are not functional, so fluid which typically is constantly flowing through the lymphatic system just builds up. I've been battling with my insurance company to get a in-home system that massages the lymphatic system, helping to reduce the swelling, but as of yet, they have denied me. Actually, they approved a pump from one of their contract supply companies, but this company doesn't carry the one specific for head and neck lymphedema. The folks that make the decisions cannot differentiate between a pump for your neck and a pump for a leg or arm. To them, the billing code is the same regardless of what part of the body it is designed for, therefore, I should be happy with the wrong pump.  

I also have to eat and drink very carefully, due to an oddity with my epiglottis. This is the part in your esophagus that sends food one way, and air the other. Mine is whacked now, and all the little intricate muscles in that area do not function effortlessly like before. So that means I am susceptible to choking if I'm not very deliberate with each bite of food or drink of water. Surgery may be an option if and when the lymphedema swelling heals.

It turns out saliva is really important to constantly keep your mouth, tongue and teeth happy. Not being able to produce much saliva has a snowball effect on your teeth, so flossing and brushing multiple times a day (like 5 times) slows the loss of enamel. It is also difficult to exercise when your mouth dries out in minutes. I have a water bottle at all times now.

The brain fog is something I really hope to recover from. Lots of short term memory blanks, times when I can't recall names, or even words. I know it sounds like that's just from being in my 50's, but this is different, and a common side effect.

I was having weekly speech therapy to help with my vocal chords, and also learning how to strengthen my swallowing to safely get food down. My therapist recommended I get a "modified barium swallow test" performed, which requires a MRI while I swallow a barium concoction. It's the best way to find out what exactly is the issue with my swallowing muscles. My insurance said "ok, but you are only approved to have this done at our contract facility." Only problem is that facility does not offer the modified barium swallow test. And you wonder why our health system is inefficient.

I am not complaining. So many friends and acquaintances ask how I'm doing, and I typically say "great, I'm cancer-free", but there's several layers of recovery to deal with, which honestly has an impact on my general happiness at times. Our landscape designer was at our house yesterday, asked me about how I'm doing, and I gave him my standard "good" answer. He said, "well, at least you still got your hair!"

Post Treatment Update

It's been about a month since I last updated on my status. Following my final chemo infusion and radiation on January 17th, I hunkered down as I had been told that the upcoming 2 weeks was going to knock me down in the worst way due to the compounding effects of the previous 7 weeks. Well, the doctors know what they're talking about. The radiation burn around my neck seared into a hideous wound with scabbing and bleeding (I ruined a set of sheets and pillow cases). The inside of my mouth turned bright red as new skin replaced old, radiated skin. And the way the pain medication works, I was on a rollercoaster of feeling good one day, and feeling like hell the next. This continued on until about a week ago. I finally reached the apex of the pain, and have started to slowly feel better.

Last week, the burn around my neck healed up, reducing my pain significantly. Each day now I feel a little more normal. Also, I am weaning off of the pain meds, which also helps me to feel more like myself. I am currently receiving fluid infusion through my beloved chest port 3 times a week, which has helped me stabilize my weight and not get dehydrated as much.

I still have dry skin issues to resolve around the top half of my body, as my skin feels like I just got out of a dehydrator. My fingertips crack and bleed for next to nothing, but this is all pretty minor at this point.

My taste buds are still pretty much dead, and I don't make much saliva, but I'm told this is temporary. Strength and energy is still in need of much rehabilitation, and my mental outlook is in great spirits. Once I'm finally off of the pain meds, I am hoping to return to more normal days of being sociable and also working again. Going to need to work a lot to pay those medical bills!

Treatment # 35 - my last!

Tomorrow marks the 35th radiation treatment to my head and neck. It will also be my last day of receiving chemotherapy. I am exuberant, for sure. But it is not yet time for me to celebrate. As my nurse told me yesterday, starting tomorrow, my body will have to accept and overcome the full brunt of the treatments. They compound together into this final level that will knock my blood counts down, and continue to anger my embattled mouth and throat. That's the bad news.

The good news is that they are calling me a cancer survivor. I am not sure how that can be since I won't have a PET scan for 3 more months while the treatments continue to do their thing. But I'll go with it. The tumor in my neck is nowhere to be found.

So while many of my friends have been warmly reaching out to say "You're all done! Let's celebrate!", I have to inform them that I actually need to get past this pounding of treatments, then work back my strength, which is typically 3 to 4 weeks from now. 

I am so happy to have only 1 more radiation treatment. Each radiation treatment, by itself, doesn't hurt. It's like getting a little bit burned in a spot, then burning that same spot over and over. And the chemo treatment isn't bad while you're being infused. It's the aftermath a few days later that kicks my tail.

So tomorrow I will get through the last of each, and my next mission is to recover and build myself back up. I am happy I've dropped over 40 lbs., and will continue to lose more over the next month. Although, I'd recommend Nutrisystem over this program.

How to beat the lonely medical center kiosk blues

Well I have stumbled through my last 5 treatments, keeping a stiff upper lip to handle something new and painful messing with me at every turn. So while I was waiting outside the coffee kiosk in the medical center where I got my morning dose of radiation, I decided to pretend I was normal and order a vanilla latte frappe (blended latte with ice). I already know that I can't taste it, and that cold stuff doesn't get very far down my throat before it gets denied. But I go ahead and order the frozen latte. I got an hour to kill before the chemo infusion, the sun is shining through last night's rain storm, and I'm kinda wondering what would happen with a little caffeine in my angelic system since it's been over a month without caffeine or alcohol. 

I take a small chunky sip of frozen coffee and vanilla syrup, and... yeah, I can't taste it. Why did I think it would different? I didn't. Just wanted to work with it, pick at it, have something keep me company in the lonely medical center kiosk. I was listening to some old Depeche Mode album, thinking about the 80's, and smiling on the inside.

I took my frozen friend with me up to the chemo center, then tossed him into the trash as I entered the elevator. No food or drink allowed where you're going, bro. Once inside I was shown to a quiet private room in the back (thanks to my killer nurses who take special care of me!), and got plugged in for my next infusion session. I slept through most of the quiet "drip drip drip" sounds of the poison being pushed ever so gently into my system, awakening to the random interruption of someone else's monitor alarms beeping. Time to change the bags.

Ground Hog's day will continue tomorrow morning, and repeat 5 time more before I will be done with this phase. Thanks for listening!

10 days to go...

Well I am so enjoying having a blog to unload my darker stuff along with the uplifting positive stuff that takes over my brain like a rollercoaster. My sister sent me a dry erase board and colored pens a few days ago, so I mapped out my last 3 weeks of treatments and appointments, to give me a visual glance for the light at the end of the treatment tunnel.

While waiting on hold for almost an hour for HealthNet customer service tonight, I started doodling with fat pens and ended up with a 5 legged Beast of which I am riding. Thought I'd share that, too. With 10 treatments left to go, and the lymph node full of cancer now almost imperceivable to the doctor's exam, I am starting my true new year countdown.

I wish I had the illustrative skills of many of my cousins or daughter (Bob, Shelly, Sasha) - coulda done something dark and meaningful, but the symbolism is spot on.

My sister's caring gift put to good work. She has been an amazing angel for me.

New Year's Focus

Having cancer sucks. It grinds you down, day by day. It pummels your psyche - doesn't give a damn about your "good attitude", and is always there to remind you just when you find a small escape. "Hey, the good news is you're going to be fine." Yes, I believe this, but I still have to travel this painful road to get there. The here and now. And now the pain is a relentless companion. My tongue, mouth, gums and throat are exhausted and they don't want to play anymore. They don't want me to talk. Or eat. They want to be left alone. 

Today is New Year's Day - January 1, 2018. I will finish my treatments in January. I think I have 12 more treatment days - finishing on January 17. I've got my calendar now where I check off each remaining day. 3 more sessions of chemo. 6 more infusions of fluids. My eyes are on the prize - getting through the next 2 and a half weeks, then starting to repair my body. 

The New Year is all about new beginnings, and making the upcoming year better than the previous. I don't know what that will entail for me, but I'm pretty sure it's only going up from here.

I'm really going to enjoy Christmas next year!

Christmas is a multi-layered holiday, typically filled with buying gifts, going to many parties with friends and neighbors, and enjoying some sort of feast on Christmas day. These are things that I love to do and be a part of, with my family, and with my social circles. Well, maybe next year.

I've been holding off on writing in this blog, because, frankly, I've gone a bit dark due to physical reasons. Primarily, my mouth, gums, tongue and throat have been blasted from the radiation treatments, and I have to mask the pain with pain killers and numbing liquids. It actually hurts to talk, swallow, or even open my mouth. If you've ever seen someone with a broken jaw that was wired shut, that is what I am like when I try to talk. Not a great conversationalist at parties (all of my wonderful friends have lots of questions, and my adrenaline tricks me into thinking I can talk just fine). I've also lost hair in patches at the back of my neck, and even my neck whiskers have just fallen out.

Then there's the food tease! Fresh baked cookies being dropped off by neighbors. Homemade chocolate nut peanut brittle. Cardiff Crack (local marinated tri tip) grilled to perfection so that the meat is falling away from the knife as I carve it up. Grilled salmon. Seared ahi. Baked potato with butter, sour cream and chives. Broccolini spears, all of which I grilled outside as the sounds of neighbors toasting, and enjoying their family dinners wafts through the air. I won't be able to even sample a bite of the Cardiff Crack.

Julia asks me if I can join her in 1 small sip of her favorite Rombauer chardonnay, to toast the eve. No, sorry, alcohol is acidic and stings. Debbie Downer here, checking in for my shift! I am in some sort of torturous prison. 

I am blessed to have both Sasha and Luke sitting together at the dinner table. Also, Torchie and Dan are with us, so it is a small family celebration. Everyone loads their plates, while I hope to be able to soften a mashed potato with sour cream and chicken broth to wash it down. I get 2 bites in, and my mouth says no. So chicken broth it is. I hung around the dinner table and enjoyed everyone's company, then I headed back into bed at 7pm. 

As I went to bed to rest, the kids both went out with friends, Torchie and Dan left to get home early, and Julia followed shortly behind me to get to sleep early since she didn't want to just be by herself in an empty house. Pretty weird Christmas.

This morning I started my new week of radiation treatments. I met with my doctor today, and he's worried I'm losing too much weight. I told him it feels good to get my weight down, but he says I lost 14 lbs from last week, and that's too fast given how little I'm eating. Still feels good to me! So I either need to eat more (not sure how to?) or consider the feeding tube.