|A very Merry Christmas!!|
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,
My two tweenage 6th graders.
K: 12 years old T: 11 years old