Yes, It's Still Raining in Houston
First, let me say that we continue to be grateful for the generous gifts, donations, and help of all types. We so appreciate everything that everyone has done for us. We have no update on the insurance situation, but the appeal should have been submitted this week. I will update on that as soon as I hear something. As of right now I have 10 more proton treatments. Cannot wait to have a break.
Despite the continued rain, I've not had any issues with treatments this week. All has gone according to plan. It looks like the rain might clear up by Friday and then it may return Saturday and Sunday for clearer skies next week starting Monday. I miss the lack of rain in Lubbock, it makes for bluer skies and more fun in the sun. If I've heard Jason say it once, he's said a million times that he will never understand why anyone would build a city on what was once a swamp. Honestly, I think that can be said for Houston, New Orleans, and most of Florida. I guess I could say for Lubbock, why would anyone build a city in the middle of the high desert where nothing grows? I guess there's a geographical location for everyone.
Adding a workout with the trainer to my regular routine at this point has been a bit of a challenge physically. This point in my treatment is expected to be the highest fatigue time, the most hair loss, and the most likely time for other side effects. Although proton is so much better than traditional radiation (photon) on all of these dimensions, and although working out is known to be most crucial during high fatigue times, I'm finding myself having to pull pretty deep for the motivation to do what needs to be done. My sweet husband, on the other hand, wants me to continue to push myself because he worries that I'm experiencing brain swelling when I'm napping more than usual. I'm going to chalk that up to guilt for not recognizing that my 20 hours of sleeping per day the weeks prior to diagnosis was a concussion from the brain swelling (surely I'll be able to use this to my advantage at some point).
Our yoga instructor told us to choose a self-affirming statement that can be a personal mantra when practicing. I decided to not choose a statement about my overly "helpful" husband like "Remember that he does these things out of love and try not to kill him." Instead, I have chosen some variation of "I am strong/healthy/determined...One Day At a Time!" This seems to be getting me through the tree pose and the tenth repetition of some very difficult maneuver. If someone could just call my husband and explain that it's OK for me to nap, that'd be very helpful.
Due to my fatigue, I sent Jason, Aidan, & Uncle Stevie out to help Ashley shop for a prom dress. I gave explicit instructions and I've received multiple texts and calls for further instruction. Everyone keep their fingers crossed that 1) she finds something she loves 2) Jason doesn't object to what she likes 3) they find shoes 4) Jason & Aidan are capable of this feat with Stevie's supervision. As I write this, so much about this just seems so wrong...but I don't have another solution right now. Let's just hope she's happy with the outcome!
The rest of the week should be uneventful as Stevie & I help Jason get ready to take the kids & some of our belongings back to Lubbock. They will stay there for a week while Stevie is here driving me to appointments, helping to run errands, etc. This will give Stevie and me some relaxation time and perhaps I will be able to nap without Mr. Worried hovering over me. When all return from Lubbock on the 31st, we will have just 3 more treatments followed by a couple of days of follow-up appointments and packing. Maybe by the time we return to Houston on May 23rd, we will be happy to see Lubbock in our rear view mirror once again!
Comments (8)
Glad to see the sense of humor is still strong!! Nap if you want to (I love ya Jason, but let the woman nap in peace!!).
Sometimes you just have to let go. It is hard and I know you really want to be there for the fun activities, but just think, by taking care of yourself and kicking back mentally, you will be around for the really fun stuff like engagements, weddings, new babies, etc. Picking out a wedding dress beats prom all to hell! And shopping for someone else's maternity clothes is really, really fulfilling, let me tell you! I worry about you in Houston as I know all about that part of the country from living in Austin for so long. I vaguely remember humidity. My friends that had to move to Houston after graduation to make a living were constantly telling me about the problem of mildew in their shoes. Believe me, that is a problem I have long forgotten since moving to Oklahoma and then West Texas. My first tax season is over and now I can resume life. It was real and it was fun, but not real fun. Love that you have returned to Yoga (remember the Yoga Bean) and know that it will keep you in balance. Something so important when shitty things happen. I love you and love that you keep me up to date.
You continue to be such an inspiration, Shannon. Like a boss. You may not be feeling very strong right now, but you radiate strength, so I'm putting this reflection right here. :) I agree you need sleep. Would I feel more comfortable if you nap in a recliner, more upright? I know there are changes to brain physics and fluid dynamics when laying down. I also know, though, that sleeping is important for the brain to clear out "crud" That's a breaking update from the AAN meeting in Vancouver! One last suggestion-can you go to a tan salon for 5 min a day (not enough to tan) to get the light exposure you're missing right now? It really helps, and may increase your brain's exposure to helpful, energizing chemicals, in addition to minimizing melatonin release.
I have been thinking about you guys in all this rain, so glad everything has stayed on track. I hear you on the training. Anything beyond yoga/walking has been really hard for me. I keep some weights in the house so I can do a few small strength exercises, immediately followed by rest. The exhaustion struggle is real!! You are so strong to push yourself through it. Good mantra- I like it!
Permission granted to take naps whenever want-- we can over rule that husband/son of mine!! Try to enjoy something special every day - the nap might just be it on many days!! Love you.
So nap a little! Plus, your sense of humor is probably one of your best tools. So now, you get to CHORTLE--a word coined by Lewis Carroll in 1871 to mean to laugh joyfully in a breathy gleeful way whenever you get the opportunity. I think it was in Through the Looking Glass and combines chuckle and snort.
You got through the doctoral program with a new born! You can do anything!!! :) Love you and hang in there. You are doing amazing! And I fully support you on your decision/need to nap!!
Shannon, as a fellow 'napper' (I can sleep on any surface, on demand!); I say 'Nap On' should be added to your mantra - has a nice, soothing tone, don't you think? Working on Seminar guests for this year and recalling the fun (and exhaustion) from last year. We've got you on the schedule for next year - and we WILL go dancing at Billy Bob's! You're one of my favorites - thanks for the laughs this morning; I'm soggy as a sponge here in DFW!