Wednesday, September 21, 2016

One day at a time ...



Last I wrote I was wallowing in some degree of self-pity over my "series-of-unfortunate-events" birthday, though I was able to find a silver lining and a little bit of happiness amidst the chaos of the day.

So now I have adopted the motto "One day at a time." I never know what is going to happen, or how I am going to feel any given day, so I thank God for every "good" day, and find some way to praise Him still on the "questionable" days! Well, we've had a few "questionable" days over the last six weeks!

August 15: Post-op chemo #2 was not tolerated quite so well as #1. A week later I was in the ER two days with excruciating pain - more pain than I have ever experienced before! More on that later ...

August 22: First day of the school year! Woohoo!! The kids were actually excited to be returning to school, to see friends they had missed through the summer, and meet new teachers for sixth grade, their second year in Middle School. I awoke to a niggling pain in my belly. Not unusual for me, given the issues I've been having with my ostomy. But as we got ready for school, it progressively got worse ... and worse ... and worse. My doctor's office doesn't open until 8 a.m. It was 7:15 a.m. and I was lying on the couch in significant pain as I waived the last child out the door. I called the on-call doctor ... "Should I wait and come in at 8 a.m. or go to the ER?"

Drove myself to ER (Matt had gone to work) — probably shouldn't have, but got myself there in 5 (legal) minutes! When I arrived I could hardly speak for pain, but was able to squeak that my keys were in the ignition of my car in the drop-off loop, something about excruciating abdominal pain, and hand over my license for ID. I was wheeled into a room quickly, but it was about 25 minutes before I was seen! — the most excruciating 25 minutes of my life! Painkiller finally administered ... totally pain free within 15 minutes and feeling completely human again. Can I get a take-home version of that stuff??!!

I suspected a bowel obstruction, but an X-ray and CT scan (after painkiller) looking for that, or a kidney stone, showed nothing. Blood tests showed nothing. Hung out for five hours or so while they tested and deliberated. Felt quite perfectly normal when I walked out of there, but with no diagnosis, and no meds. I still think I had a bowel obstruction that cleared itself after the painkillers. Crossed my fingers it wouldn't happen again.

August 24: Awoke with niggling abdominal pain ... increasing by the minute as we were getting ready for school. Matt stayed home when I expressed the repeat of symptoms. Kids headed out the door at 7:15 a.m. to catch bus & van to school ... 7:35 a.m. rolls by and no bus or van. Found out schools were closed due to mold problems (long-story-short - No A/C in school buildings all summer > A/C on when school starts > condensation on all cooled surfaces due to high humidity > mold). 7:45 a.m. "Kids, you can watch DVD's ... Matt, take me to the ER!"

Same pain & symptoms. Not quite as intense as two days prior, but heading in that direction. Painkiller please... administered. This time it did not take all the pain away, but reduced it to a somewhat tolerable level. Hmmm. Another five hrs of waiting. Only blood tests this time. Nothing. My surgeon was doing rounds that day, so he stopped by for a chat. He decided it might be "intestinal spasms" caused by the chemo, so he prescribed some meds, and 'heavy-duty' painkillers, and sent me home.

I took the meds as needed for only a couple days following and I haven't yet had a repeat of symptoms. Praise God! In consultation with my Oncologist, I opted to skip my chemo treatment on August 29 to see if I could get through a couple weeks without another visit to the ER.

As for school ... the kids went for two days at the start, then had five days off while they cleaned the buildings and "fixed" the mold problems/causes. At some point in that time, all four school buildings — two elementary, middle & high — were closed! The high school, however, was going to take three weeks to "fix" so they resumed school on an altered schedule, sharing the middle school building by doing half days. HALF DAYS OF SCHOOL FOR THREE WEEKS my friends! High Schoolers went 7:30 a.m. -11:30 a.m., and Middle Schoolers from 11:30 a.m. - 4:15 p.m.! Can you say CRAZY??!!

I am blessed to have a completely flexible work schedule (mostly due to my medical treatment/recovery) so I can be home as needed through all this, but I can't begin to imagine the frustration of parents who do not have that luxury. Above that frustration is the concern for the lost educational time that they won't get back. We'll make up the full days lost by going to school a few holiday Mondays and such, but the half days will not be made up. I wasn't about to let the kids sit idle for 5hrs every morning (I still had them wake at 6:30 a.m.) so they made their own breakfast & lunch, read for an hour, completed homework, and did chores to fill the time. TV was only allowed if all other tasks were complete. Can you say "Tiger Mom"??!!

Praise God, school resumed "normal operational hours" today (Wednesday, September 21). Phew! I will be glad to resume a more normal routine. Does normal even exist?!

September 12: Chemo #3 ... after a four week break, with no return trips to the ER after my missed chemo, I resumed treatment. I usually sleep through my infusions (4-5 hrs) but this time I was engaged by a fellow patient, Jan, and discovered, as we chatted our way through the hours, that we had similar (colo-rectal) cancers, as we compared treatments, side-effects, and more. We shared some of our coping skills and remedies, laughed at ostomy woes, compared surgery recovery experiences, and encouraged one another on this journey. Thankfully our sessions run concurrently, so I look forward to seeing her again next time. I experienced the usual fatigue in the week following, and this second "off-week" has been pretty good! I even walked 1-1/2 miles one day at the YMCA! Now to rebuild my muscles.

After a six week break, our Princesita has resumed swimming for the fall-winter season. She was inspired by the Olympic swimmers this summer, and has hopes to be an Olympic Swimmer (she actually declared this back when she was 7 or 8) so we'll wait and see where that goes! She improves every season and has been among the top ten swimmers her age in our league since she started at age six. As long as she enjoys it ... that is the main thing! She is off to a great start at school, and is completely self-motivated to get homework, study, and assignments done. We've told the kids we couldn't care less about grades, as long as they are putting in their best effort. She continues to grow musically too, in her piano lessons, and singing in Chorus and Small Ensemble at school. It's a good thing she doesn't share my genes, as I hated homework (& school pretty-much), and hated practicing piano. Needless to say I didn't exactly excel at either!

K-man is settling into a new academic environment this year. Apart from a great reading ability, he has every academic challenge you can imagine. After a year in a Life Skills (special needs) class last year, I insisted this year that he be placed in Learning Support classes and spend more time with the general population of kids, not only for academic growth, but social growth too. Even if he struggles to comprehend and apply what he is learning (hence the learning support), I want him to be exposed to more information and experiences, especially in science, social studies, and the arts, so we can find that spark that ignites an interest in something - other than movies! (He seems to be developing an interest for sci-fi movies.) He logged an hour of reading almost daily through the summer, finding interest in historical fiction books (thanks to a generous friend), and Star Wars novels. His latest book is the first three "Indiana Jones" movies (600+ pages of small-print!) Math is his biggest hurdle (and a diagnosed disability), but if he can learn "life math" - number sense, money, time, how to use a calculator, measurement - he might have a fighting chance. Sixth grade folks, and my boy has yet to master these basic skills.

K-man and I will workout together at the YMCA gym and track while his sister swims. He doesn't want to do any sport, so this is the next best thing to exercise his body and brain!

Dear hubby, or "Papa" as we affectionately call him, opted not to teach (electrical studies) at night school this year, so he could be more available to take care of me throughout my treatment. {{LOVE}} He works hard each day (physical labor as an electrician) and it is still my instinct to want to take care of him, and our family needs, so I do what I can when I am able. He pitches in mightily when I am not. I pray he has the strength to endure this journey with me, as he is suffering through this too. {{LOVE}}

Due to a number of factors (ME being the greatest) we did not participate in our annual Labor Day weekend caving-fest down in West Virginia this year - the first time in 13 years we've missed it :( Our caving "family" kept us apprised of their adventures throughout the weekend, with photo and text updates, so we felt included despite our absence :) At home instead, I labored for a day over half a bushel of peaches to make 22 pints of jam! Packing and travelling for a long weekend of caving might have been easier!? We also celebrated Papa's Birthday with a delicious Pavlova!



I have only just begun to resume my part-time work after two months off, working as able around my treatments and myriad appointments. Although the reduced income has been noticeable, we have been so richly and abundantly provided for. It is amazing the ways that God has provided for our needs. A kind neighbor is mowing our lawn "so that Matt is available to take care of you," he told me. Others have given meals, rides, money, activities/outings/babysitting for the kids ... we want for nothing.

After about five years hiatus, we have joined mid-week small-group Bible studies at a new church, and we are looking forward to not only the spiritual growth, but the opportunity to get to know our new church family. The kids have "graduated" into Youth Group this year {{finally}} and will also participate in a youth Bible Study. My group is studying the book of James, which fits right in with my current journey...



I do have great joy! I know Whose I am, and Who's in control, and that there is a purpose for this life experience that is yet to come. I have a long way to go - in every sense of the Word, a LOT to learn, and a LOT of Christian practices to put [back] in place. My journey has been the catalyst for my desire to renew, refresh, and share my faith, and I pray this study may be fuel for the Fire.

Chemo #4 is Monday, September 26. My "missed" chemo will be added back at the end.

This cruise continues. Enjoying these calmer waters for the time being. As I said earlier, "One day at a time."

Thanks for your love, support, and prayers.

Sandii :)