Friday, January 6, 2017

Happy New Year - 2017 is upon us!

A very Merry Christmas!!
Happy New Year!

WOW! It is 2017 already, but I am not going to complain, because 2016 is a year I'd like to put behind me - way behind me! 2017 is my year to forge ahead, recover, rebuild, give back ... I guess my "cruise" has not entirely ended, but I do anticipate much calmer waters for the remainder of the journey!

2016 in a Nutshell:

January: A long-overdue physical/wellcheck exam ...
February: Diagnosed with Stage 2 Rectal Cancer
February - April: 6-weeks of daily radiation & low-dose chemotherapy pre-treatment
June: Surgery to remove "dead" cancer tumor & install illeostomy
August-October: 6 sessions of chemotherapy post/preventative treatment (should have been 8)
October-December: 40 days in hospital with chemo-related bowel obstruction/complications
November: Surgery to remove bowel obstruction and reverse ostomy
December 4: home in time for Christmas

In years past I barely went to a doctor more than once, for annual allergy med renewals. In 2016 I had more than 80 medical appointments, not including my 40 days in hospital! I have a 2-inch binder filled with paperwork associated with those appointments. My fridge is a pharmacy.

I was ever-grateful to be home in time for Christmas. Unfortunately, I think I increased Matt's already-overloaded workload with the extra care I required in the first couple of weeks. My first major recovery goal was to be able to go to a Christmas Eve Service. Check. Though our decorations were very minimal this year, we were thoroughly spoiled and blessed this Christmas. Friends "showered" us with a gift-card tree, others played Santa... Thankfully I had done my shopping online early and had all my wrapping done a couple days before Christmas (first time ever!) My taste buds had even recovered enough to allow me to thoroughly enjoy a baked ham dinner prepared by my Mother-in-law. Ahhh, tasty food at last! The ensuing frequent bathroom visits were worth it! Oh, and we received so many wonderful & delicious Christmas cookies (in the mail, with meals, from M-in-law...) that we will be eating them yet for weeks!

Be careful what you wish for ...
For a couple years I had been trying to drop about 10-15 lbs. I think I only dropped 5lbs, and I'd like to think it's because I replaced fat weight with muscle weight, as I was exercising a couple times a week & eating reasonably healthy food. Well, I will now be careful of what I wish for (health rather than weight loss?) as in 2016 I lost 40lbs (~18kg)!! Needless to say I have slim (flabby) legs and flat (untoned) abs right now, but 40lbs was a tad extreme. 25 of those pounds were lost during my recent hospital stay. Although they were feeding me 2300 calories a day via IV fluids my body and my muscles wasted away. I only walked the hallways 3-4 times during my 40-day stay, due to fatigue and weakness.

I have gained about 10lbs since being home. Another 10-15 to go. It has been hard, as my appetite is reduced (my stomach shrunk after not physically eating for most of those 40 days) and I had significant taste aversion - nothing tasted like it should - from the chemotherapy. Thankfully that is wearing off now and every day I am expanding my diet. I am also dealing with "low anterior resection syndrome" which, to put it mildly, is a significant change in bowel habits! Needless to say, I need to be in close proximity to a bathroom for unpredictable and significant portions of the day!

Be a self-advocate ... 
If you ever find yourself in hospital for any length of time, I urge you to ask A LOT of questions, especially about the medicines they want to administer, and other medical treatments. I had more than 8 doctors visiting me throughout my stay (my specialists, or their associates on days they were in the office) and each of them would prescribe a new medicine for my symptoms. I had at least 10-15 different RN's & LPN's (nurses) and aides. After a week or two I finally took charge of my care and after asking a LOT of questions, and doing significant research & self-eduction online (I kept my cell phone & tablet close every day!) I told the doctors and nurses which medications I was going to take! Many of the suggested medications countered each other (bowel stimulant vs. muscle relaxant), or made no sense (appetite stimulant - I couldn't eat! Anti-nausea - I spent 3 weeks vomiting multiple times daily as my bowel was obstructed so stomach juices had nowhere else to go!) ... Obviously there were some I wouldn't refuse (blood thinner, pain meds) but even then, I had to keep telling them the dose & type of pain meds that worked (and what didn't) and that I couldn't take them orally (vs. via IV) due to my gag reflex. I had to work with and remind the nurses of the ratio of saline to potassium so the infusion wouldn't burn as it entered my IV lines (it happened twice - pain immeasurable!) I had many conversations over the nasal-gastric (NG) tube and three attempts at it before I overcame my fear and realized its benefit (especially those last 2 weeks.) By week 4 (after much observation), I could have hooked up my IV nutrition myself, and I found myself catching errors of the nurses as they did it. If your body (or medical treatment) doesn't feel right, get it checked out ASAP and persist in your pursuit for care/treatment until it is resolved. COMMUNICATION is key, and you need to take charge of your care, or have a trusted person who can on your behalf.

I have to add that if you are a nurse: RN, LPN, PCA, PT, or OT - I think you are an angel in disguise! The care I received during my "40 days" was world class, and the selflessness and courtesy of the staff that cared for me was amazing, especially when it came to cleaning up after me, and tolerating me telling them how to care for my needs (politely of course!) and my countless requests for cups of ice! I tried to thank every one of them by name before they left my room. Many of them checked in on me on days they were assigned to other patients!

Don't be afraid to ask for help ...
This may be as simple as sharing your personal battle/s with a friends, but sometimes you also need to be direct and ask for specific help, such as with meals, rides to appointments, playdates, etc. We have been overwhelmed by the thoughtfulness and generosity of our many friends, a neighbor, and also many strangers, throughout the past year. Our neighbor voluntarily maintained our lawn (without our asking) all growing season, and offered meals, rides, and other aid; Our church family and many friends have made countless meals to feed our family (many meals enough to feed us two or three times!); Our swimming friends rallied together to support us financially through Christmas, with a couple playing Secret Santa; Our community aided us with much-needed and appreciated support; My mother-in-law came daily to help after school & evenings while I was in hospital and during my recovery; Friends have given me rides to Dr. appointments during the day; My & Matt's employers have been gracious (with time away from work) and generous with assistance. God has used many folks to provide for our needs in abundance! We are truly blessed!

Time to forge ahead, rebuild, recover ...
My recovery is going slow and steady. I arrived home December 4. There was a bed and commode set up for me on the first floor of our house, which also has a bathroom, kitchen & living room. Though barely able to walk (both ability and stamina) between the recliner and my bed, I have been self-sufficient during the day, with daily visits by either a visiting nurse, physio therapist, or occupational therapist until Christmas. Grandma was still coming to help on school-day afternoons & evenings too. The therapists worked me hard (admittedly I didn't do much on my part between their visits) and were impressed with my progress such that they ended at Christmas, when I could climb/descend the stairs solo. I can now do stairs multiple times daily, albeit slow. I can stand long enough to prepare meals for the family. I daily dress my abdominal wound which is healing nicely (hole barely the size of a Q-tip now!) I am eager to drive again (next week?!), to start walking at the gym, to get back into church activities, and to resume daily chores like feeding chickens (a ways off yet due to lifting/weight limitations & cold sensitivity.) I am eager to see my work colleagues again (starting February?)!! Most of all I am eagerly anticipating Spring (come on March-April!!) and getting back to my gardens and yard work!! I have big plans for my veggie garden and chicken runs this year!

I will have many follow-up checkups this year. I'll visit the oncologist monthly to get my medi-port flushed, and quarterly he'll do cancer screenings via CAT scans, etc. My surgeon will check on me quarterly also for the next year. Then every 6 months for the following two years.

My hair has thinned significantly. I think it may yet all fall out (that which was present throughout my treatment) and I may be headed for a buzz cut, but we'll see. There is enough hanging in there yet to maintain it, but it hasn't grown since April, and is thinning by the handful weekly. Unfortunately we are approaching the coldest months of winter, so I'll be investing in some warm hats!

I am experiencing some neuropathy in my fingertips and feet/toes that seems to be lingering. I will be getting that checked out by a neurologist in February. Sure hope it's not permanent. It's not debilitating so much as annoying.

Time to give back ...
Our first opportunity to give back was on Christmas Eve - we stopped in at the hospital after church to give cookies to the nursing staff on the fourth floor and offer thanks for their selfless service and care for the patients. In 2017 and beyond, I am determined to find more ways to GIVE BACK to my neighbors, community, church, and friends, in whatever ways I can. I will definitely join the "meal team" at church. I will shovel snow from neighbor's sidewalks and/or cars next winter (not quite this winter.) I will offer rides, and I will look for and ask for ways to help folks in need. I am compelled to pay it forward after the generosity and thoughtfulness extended to our family this past year, and to be God's hands and feet to those in need in my community. I'm not going to become a "cancer crusader" raising money and awareness ... but I will, however, encourage people to get screened if conversing about my cancer journey!

I Thessalonians 5:16-17
"Be joyful always": Praise God for His faithfulness to carry me through the storms of the past year and keep joy in my heart, despite my circumstances. Praise God for Health Insurance.
"Pray Continually": I pray blessings upon you all in this New Year! Please pray for my continued healing and restoration, and Matt's continued stamina to do the extra tasks I can't yet.
"Give thanks in all circumstances": Again I thank you for the ways you have supported me and my family 'along the road' this past year ... prayers, encouragement, meals, gifts, gift cards, care packages, flowers, financial aid, rides, playdates, help ... I will treasure your generosity in my heart always and be inspired by it frequently.

By God's grace,

Sandii :)


My two tweenage 6th graders.
K: 12 years old                                                      T: 11 years old

Friday, December 2, 2016

Day 37 ...


G'day folks!

Day 37 and counting ...

It's easy to think of all the things I have missed in these past five {unexpected} weeks ... like my family (the kids have not been able to visit anywhere near as frequently as their Papa); the Fall color change (my favorite time of year), which started the week I entered the hospital; Thanksgiving celebrations & dinners, not that I didn't give thanks!; eating; two tooth losses (one each kid!); seeing friends (I had to curb visitors for a number of reasons); swim meets; the great outdoors ... I could go on...

But instead I will think of what I have gained. Victory! I have battled rectal cancer this year and as far as I am concerned, have WON! No more treatments (though plenty of check-ups to come!) I have gained sympathy, empathy, and compassion. You may not believe it, but I was a little short on those. I was a "Suck it in, get over it, and get on with life" kinda person. I am not kidding! I understand now that pain, hurt, and disease can be invisible, and easily masked. I have gained an extraordinary new and heightened appreciation for my husband as he has worked hard to hold all things together, including himself, as he has watched me endure these past weeks. I have gained a new appreciation for food - even if I can't eat much yet - and ways to prepare it (thanks Food Network!) I am eager to get back in the kitchen, and share the space (which I didn't much before) with a daughter who tells me cooking and baking is {one of} her passions. I have seen my kids grow in compassion, courage, love, and & faith.

So, as for me and my progress... I had surgery two weeks ago to fix an adhesion {blockage} in my small intestine (about 12 inches removed) and reorganize my bowel. I also endured two more goes with the NG tube in the past two weeks. Well, I am pleased to report that the plumbing is now consistently {and continually} flowing south, four days now! I no longer have an NG tube (hallelujah!) nor any other tubes on my face! I am down to one IV connection (from as many as five) which should be removed tomorrow, which means I am eating {tentatively} again! My stomach is the size of a walnut after not eating for 5 weeks, so I have some reconditioning to do. I walked the hallway without a walker today for the first time, but have a very long road ahead by way of rebuilding my muscles and strength.

Heading home soon.

Anyway, my brain is plain wore out. Evening shadows have fallen, and there's a soppy chick-flick on Hallmark Channel waiting to entertain me.

Thanks for continued love & support & prayers!

By God's grace,

Sandii

Look, no tubes! Dec 2, 2016.

Wednesday, November 23, 2016

Happy Thanksgiving indeed!


So it's Thanksgiving and I can't eat? ... So what! I'm not hungry anyway! I'm full of IV liquid "turkey and trimmings", including liquid "cream pie" for dessert!

But I sure have MUCH to be THANKFUL for!!

I am thankful that the God of love is carrying me through this medical trial, and giving me strength, endurance, peace, even humor! If I stop wanting my desires, He will be able to complete His healing in me! I give in, go for it Great Physician!

I'll come back to medical stuff but I have to next give thanks for my family & friends.

I am so grateful for, and blessed by, my husband, Matt. He's so full of love and faithful to care for the needs of his family above self. Exhausted, but driven by love & concern for me. I can't express how much I love and admire Matt. God give him strength, endurance, and restful rest each day.

I am blessed to be the Mother of Kaeden, a sweet, and sensitive young man of undiscovered potential, trying to find his place in this world, and his identity, through imagination, music, faith activities, life-experiences, academic challenges, and the noise of life. Lord, quiet the distractions and guide his path that he might clearly be identified as a child and friend of God.

I am blessed to be the Mother of fiercely independent, self-driven, yet tender-hearted, and compassionate Tyya. She has a heart for God, a talent for swimming, and a passion for cooking and baking. She is sweeter than pie. God, grow Tyya's heart for you and grant me the wisdom to recognize and nurture her gifts, talents and passions.

I am thankful for extended family; for my parents & siblings - loving, praying for, and encouraging me from afar.

I am thankful for my mother-in-law - selflessly helping to take care of the kids and Matt in my extended absence and the love she demonstrates by doing such. For making Thanksgiving dinner and letting the kids help & learn!

I am thankful for my sibs-in-law ready to help at a moments notice, praying fervently in the meantime.

I am thankful for my friends, church families, and prayer warriors (local & world-wide) for taking time out of their already busy lives and heaping love, prayers, well wishes, gifts, encouragement, cards, letters, texts, meals, transport, care packages, play dates, cheerleading, lawn mowing ... !! Oh how you have blessed, loved, and inspired me and my family!

I am thankful for our beautiful dog Biskit who must be wondering what happened to her pack leader who vanished a month ago... aknd waits faithfully for her return.

I am thankful for a world-class hospital and for the world-class medical care it provides; for an army of angels dressed as nursing and personal care staff - filled with care & compassion; for skilled doctors and specialists, willing to admit they sometimes don't know what the problem is but are trying to figure it out!

I am thankful for alert & lucid consciousness, personal awareness, curiosity, self-education, self-advocacy, pain, comfort, rest. For medications & the knowledge of what they do, and how they work, especially in me! Yep, I'm even thankful for my uncomfortable NG tube sucking the crap from my stomach so my bowels can rest before waking and working! I am thankful for the hope of healing and wholeness.

I could go on, but you get the picture. My attitude of gratitude is as much a part of my healing process as the medical treatment I am receiving. If I dwell for so much as a moment on the negative & awful aspects of this trial I'd be consumed and without hope. I choose to remain positive, grateful, and full of hope!

Happy Thanksgiving everyone!!

By God's grace,

Sandii :)


Monday, November 7, 2016

Tropical Storm ...


So, I was expecting calmer waters as my "cruise" continued... things seemed to be going along okay, but little did I know a tropical storm was brewing.

The effects of my chemo were accumulating with each subsequent treatment, but I was on a countdown; three more to go, two more to go... Fatigue was increasing, wiping me out for a week rather than a couple days. I was starting to feel a little nausea. Neuropathy (pins & needles in hands and feet, cold-sensitivity) was intensifying. Chemo brain was ruling my days making it very difficult to even get the daily basic chores achieved and needs met. It's hard to rest when things need to be done.

Praise God for Matt, his Mom, my close friends and many folks who have chipped in at a moment's notice, or by the stirring of the Spirit, to meet our needs as they were increasing.

Monday, October 24, I had chemo #6. They reduced the dose due to the increases I was experiencing in side effects. Monday, Tuesday & Wednesday were surprisingly good post-chemo days for me.

Thursday, October 27, stomach pain returns, as do I to the ER. I'd had a rough night and my ostomy hadn't put out much, when usually it fills once or twice a night. They observed me all day in the ER. My ostomy wasn't flowing. I was nauseated and miserable."We'd like to keep you overnight for observation." I wasn't going to argue. So they admitted me to the hospital.

Friday, October 28: Matt brought the kids to visit in the evening. "Happy Family Day" declared my dear, yet despondent and disappointed, daughter as she reached out to hug me with a pouting face. Our plans to celebrate Family Day, the anniversary of the day we brought the kids home and became a "forever family", were thwarted. But I said to her "Any and every day is a day we can celebrate being a family!" We'll make up for it later. Thankfully our church had an alternative-to-Trick-or-Treating Halloween event so that kids had fun & treats in a safe environment. Unfortunately we also missed our "loosely" observed "Dia de los Muertos" (Day of the Dead) on November 2, as part of Guatemalan All Hallowtide. I was really looking forward to eating Fiambre! Now I just look forward to eating anything.

I figured I'd be home by Saturday at the least... Sunday came and I was still here in hospital. It is a waiting game. Basically my bowels just stopped working altogether... totally inflamed, and inactive (suspected response to chemo). No signs of infection. Little did I realize that the stomach still produces digestive juices even when the rest of the system is out of whack. The volume is a couple quarts/litres a day and when it can't follow it's normal path, there is only one alternative exit. On top of my misery, Matt calls Sunday morning ... on their way to church a deer jumped onto the car from a steep roadside bank and totally smashed in the front windshield and dented to hood  Had I been in the car I would likely have been injured. No one was injured, just shocked, and overwhelmed by our seeming bad luck.

Mid-week and no sign of bowel activity, I tried a nose tube (down into my stomach) for about 36 hrs to pump out the gastric fluids that were still accumulating... it was as completely awful as you might think, and as I had anticipated. I couldn't talk or move my head without gagging, but I could breathe. I was communicating by writing on my cell phone!! And although my stomach got a break from me vomiting, I pleaded for it's removal the next day. I'd prefer to puke, thank you.

So, here I am, now day 12 in hospital, fed via IV (haven't eaten more than half a dozen bites of oatmeal or applesauce since arriving!), getting prodded, poked, and stuck multiple times daily (mostly through IV access ports), and playing the waiting game. I have seen myriad oncologists, surgeons, their associates, and the tag-along residents and students. They do not all agree on my condition, but offer their knowledge & treatment options and work together. I have to mention the nurses and personal care staff... and I PRAISE GOD for every single one of them! I can't imagine having to constantly clean up rancid bodily fluids that are not your own!

And I'm glad to report today the first signs of bowel function returning! My ostomy bag had new fluid in it today (forgive my candor over bodily fluids and functions, but this is my life right now!) Sure it is one more rancid fluid to clean up, but a necessary and welcome one. Next step is to keep it flowing and be able to eat. I am not leaving here until I can eat properly. Wouldn't it be lovely if I could enjoy Thanksgiving Dinner?! Here's hoping!



A little bummed that I have missed the peak of our Autumn color changes during the days I have been in here, but I have been able to enjoy a brief glimpse of it from my window which looks out onto a wide meadow and surrounding woodlands. It sure has been a season of change for me this year...

  • From healthy to cancer survivor
  • From active to passive & hospitalized
  • From family caregiver to family giving care
  • From organized & alert to chemo-scrambled fuzzy-brain
  • From goal oriented to faith oriented
  • From taking things for granted to thankful for every provision
  • From unsympathetic to compassionate
  • From stagnant faith to daily grace

Update: Someone lent us a vehicle to cover transport needs, and the car windshield has now been repaired. Meals are being provided in delicious abundance. Prayers abound! Kids both made Honor Roll in first marking period!

The best news to come from this current unpleasantness is that all my doctors agree that we should end my Chemotherapy treatments. NO MORE! NADA! ZIP! ZILCH! YAY!!! Now I get to focus on getting out of hospital, healing/detoxing from Chemo, and preparing from my ostomy reversal in the New Year.

I'm kinda tuckered out folks. This blog is the longest time I've focused on anything, and achieved something, for the past 2 weeks! I'm heading for a nap and some pain meds!

Thanks One and all for your love & faith-filled prayers & support! Please keep it coming!

By God's grace,

Sandii



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 :)




Friday, August 12, 2016

Crappy Birthday to me?

That's my house ... and the street in front of it ... earlier this evening ...

Crappy Birthday to me, Crappy Birthday to me ... :\

Firstly, I am overwhelmed by the many well wishes for joy, happiness, and continued prayers that you have all offered me today. The day started off GREAT and very HAPPY indeed!

My daughter, with whom I had been at odds for most of the day yesterday, woke at 5:30am to decorate our dining room with Birthday decor, because she knew I wasn't exactly in "celebration mode" for this birthday, all things considered. She went all out ... see photo ... and I think it was one of the best birthday gifts I have ever received!! I made waffles for breakfast to keep up the momentum. I got to eat one before we had to head out the door to appointment #1. So far so good. And then ...

My loving daughter surprised me by decorating this morning :)
The day was busy with appointments of one kind or another (yes, even on my Birthday) and my carefully planned day, enveloped in 90°+ weather and 1000% humidity, turned south when my car battery DIED mid-morning, creating a substantial disturbance in the Force. Apart from nearly melting in the heat, I missed an important appointment that can't be rescheduled. I thanked T for the morning decorations again.


After dear hubby rescued me and I swapped to an un-A/C pickup truck I tried to create a mid-day bright spot by stopping for ice cream - for the kids. I have neuropathy, a chemo side-effect, that I can't enjoy cold foods, drinks, water, or handle cold things ... but I did sample a little ice-cream anyway and swished it around in my mouth a little to warm it up before swallowing. Yum?

Another afternoon appointment did not allow me much rest time, and I was truly fatigued by the heat, and still pretty sore about the car battery, but I was counting down to going out for dinner, and a tender juicy steak & Caesar salad ... wish granted. But I was so hungry that I ate too fast, almost to the point of nausea. Belly aching, we headed home. Dark storm clouds nearing, thunder and lightning, we make it home before a gully-washer unleashes it's fury!!

My darling Princesita chose and colored this gorgeous picture for me
So we get home and settle into a family movie ... there is a knock at the door 20 minutes later and the neighbor was there to tell me the street was flooded up to our porch (see top photo), which meant water was pouring in our basement. The basement drain seemed to handle it ok. The biggest loss that we have discovered so far are basement pantry items, but now we will have to battle mold, while our dehumidifier is already running all day-every day.

It was all a recipe for two very grumpy, short-tempered parents. And God has graced us with two incredibly resilient, thoughtful, on-their-best-behavior, grace-filled kids, who are watching us melt down ... and offering hugs. 

The floodwaters have receded (drains were blocked due to road construction), and we decided to finish watching the movie to take our minds off things before we assess the full extent of damage/loss in the basement.

God is good. It could have been much worse. I had a 'spare' vehicle to use. The steak was juicy & tasty! Our basement is not a complete washout. I am loved, and I have a dining room full of "Happy", to remind me of that ... not to mention all your wonderful wishes!

So, I guess it really is a Happy Birthday after all! 


PS. My first Chemo went very well. Mild neuropathy (as explained above and expected to accumulate through treatments) and fatigue a couple days after, but otherwise feeling pretty fine. Good appetite. No nausea Praise God!! My Ostomy is giving me all kinds of trouble due to my sensitivity to adhesives, and I had a major blowout last night at midnight {sigh}, so I entered this day sleep-deprived. God knew I really needed my daughter's gift this morning to get me through this day.

Next Chemo is Monday, August 15th.

Sunday, July 31, 2016

Rough seas ahead ...

Five busy weeks have passed since my surgery ...

I finally got around to taking "Birthday" pictures of K-man, who turned twelve while I was in hospital. I can't believe how much this wonderful young man has changed in the past year! I think he grew a whole head taller! Gone is my boy soprano and he's been replaced with a squeaky tenor/baritone. This kid loves all things Star Wars!!


T had a great summer swim season, most of which I missed. {{Special thanks to my bestie Denyse and other team families who transported T to and fro.}} She snuck in a 'bonus' season as a 10/under swimmer as her birthday is a couple days after the cut-off. I was very happy to meet my recovery goal of getting to the three championship meets at the end of the season. It started with the Divisional (2A) Meet last Saturday (July 23) - six teams. Kids were only allowed to swim three events, so we picked her best: Girls 9-10 50m Freestyle, 50m Backstroke & 50m Butterfly (which she swam in the Medley Relay Team) ... See T's results below left.

The 16 fastest swimmers in each event from the combined four divisions advanced to All Stars the next day (Sunday), which is a championship meet for the whole league/all four divisions (20+ teams). See T's results below right.

 

And as if that isn't enough, the fastest 8 swimmers in each All Star event then move on to Mid Caps, which was held yesterday. (July 30) Mid Caps is a Central PA "east-shore league (top 8) vs. west-shore league (top 8)" championship meet. But after all her hard work I wasn't sure she would go to Mid Caps as T strained her shoulder mid-week. Rest (no practice), ice packs, and ibuprofen helped, and off we went. T's Medley Relay team placed second, she placed 6th in 50 Freestyle, and 5th in 50 Backstroke, very near her best times! A spectacular effort with a dud shoulder!! Now for a {welcome} 6-week break until the winter season starts!!

As for me, I continue to gain strength and endurance daily, thanks be to God. I move about quite freely now, though at a significantly slower pace than I am used to. I still have to be careful not to overdo it. I get as many tasks done as I can in the mornings, and I am usually laid out in the recliner for the afternoons and evenings. I started driving again around July 20 which has reduced the stress of arranging rides for the kids and I to our various appointments. My diet is slowly gaining variety, though that may be short lived. My ostomy is uncomfortable. The function and maintenance of it is going fine, it's my sensitivity to adhesives that is causing a problem, as the ostomy bags adhere to my abdomen, and are causing significant irritation to the skin underneath. Still consulting with a variety of doctors and nurses (and YouTube) about how to treat it.


I sail back into rough seas this week as I start the final round of chemotherapy on Wednesday, August 3. Long infusions (3-4 hrs?) and a pump for 48 hrs, every two weeks, for 8 sessions (about 4 months). This round of treatment is largely preventative. It further decreases my chance of recurrence. I'd appreciate your prayers going into this phase of treatment, as the side effects are likely to be much greater than the last round of low-dose chemo. Potential hair loss is the least of my worries, it's the nausea I am most concerned about. I can barely sneeze due to pain/tightness in my abdominal muscles - I don't think I can deal with full-blown nausea. I am eager to get this phase started but most importantly finished.

I have friends who are undergoing chemo ... one of them has been doing this every two weeks for years. YEARS. You probably know someone enduring the same. With so many people praying for me, my prayers are focused on my fellow warriors. My prayer for them is strength for each day, comfort from pain/nausea, peace that surpasses all understanding, a strong support network, LOVE in abundance, and a hope that is not disappointed... All the things I have been blessed with. I know God is listening and has answered so many prayers thus far.

Thank you for your continued prayers, encouragement, and support.

In Christ's strength,

Sandii