Last weekend I went to the 100th birthday of my high school Christian academy in Chicago, IL. Just to sit in the church, and walk the hallways of the school. The church remains as majestic as it was when I was a child, I attended from 1st grade to 12th. But the classrooms and auditorium seem so much smaller. Nevertheless time stood still and I was 30 years younger, without any emotional baggage.
Another great part was seeing 3 dear childhood friends who prayed for me in their prayer group, every week, Elise, Lauren and Susette, they each took turns messaging me on FaceBook. And another great part was seeing friends who I didn’t know knew I had cancer and had been praying for me.
This whole experience has really taught me the power of prayer. The prayers I asked of so many family friends, and in particular my choir members, without giving ANY specifics of my illness in the days when I was going through test after test. The specific prayers I prayed as the journey unfolded. The corporate prayers made on my behalf from my church’s pulpit, other’s prayer groups, a friend wrote my name in a prayer book in a rustic Chapel in Wyoming, my family’s friends who prayed.
Back to my reunion, I was able to attend with my 3 brothers, who also attended the same school. It was just amazing to share a hotel room with them, This is the first vacation we’ve taken together without our parents, oh the laughter, and the pizza, and more pizza (we LOVE Chicago pizza) and the best part … somehow getting caught in an impromptu FLOOD as we were crossing this major intersection to do some outlet mall shopping … when we walked into the mall … we were dripping soaking wet … leaving a trail of water as we tried to find the nearest restrooms …
Another great part was seeing my first love. I saw him, he didn’t see me at all, and my opening line was, “hello first love” he just hugged me, oh so tight.
Another great part was seeing my teachers, they all looked so great, many looked even younger than they were back in the day.
Another great part was my father being honored, I think it was for leadership, he was once a teacher and principal at the school, and later became the superintendent of education for that same region. He died in 1985. Prior to our arrival (none of us presently live in Chicago) neither I, nor my brothers, knew Daddy was being honored. it was just neat they we all were there to accept it, felt like we had won an oscar, glad none of us broke down crying, I’m sure I can speak for all of us when I say, we still miss him like he died yesterday.
Life is great, and we can all take the time to jot down those things that make life great. Whether it’s today’s adventure, today’s laughter, or today’s overcoming, today’s something to be thankful for, you get me drift …
also, and by the way, let’s keep the prayers circulating for all of us!!!
Although my family at large is on pins and needles awaiting the passing of my 90+ uncle who has lived an abundant and full life, on Monday, I learned of my 2nd cousins passing, 30 years old, previously working on Capital Hill with prominent political figures, more recently building an agricultural business, living a life of confidence, passion and dreams … Suddenly killed in a motorbike accident on his way home from work in Ghana, Africa.
After my father was diagnosed and died from Leukemia over 25 years ago, and after the pain began to dissipate, I learned the advantage of facing a probable death … time to get your house in order, priorities in order, emotions in order, dreams in order … mind you, this does NOT make the passing easier … I can still cry at the drop of a hat, when I think of my Dad’s death combined with his strong will to live and be there for me and his other 3 children. But today I learn sudden deaths prompt you do these things more often and regularly. The only thing certain is life, is uncertainty …
Experiencing the death of a close loved one puts you in another category. I’ve often said this loss cannot be described, it can only be experienced. It’s a club that NO ONE should have to join. In addition, that feeling of loss is compounded or brought to life when a close friend loses a close loved one, empathies and sympathies are heightened, but each individual must grieve in their own unique way.
My favorite sympathy card remains my go to phrase when friends lose close grandparents, parents, sibilings, mentors, friends … “That which you sorrow for, brought SO MUCH joy” … and with that the more joy, the bigger the void, the more sorrow ..
So how do I move beyond this week’s bad news? By just taking life one day at a time, By realizing, life isn’t fair and life can be hard, yet life is good. By remembering life has no guarantees, but we have to keep on living and this earthly life is not our eternal home.
Right now I choose to live with my grief, remember how fragile like is, reaffirm my own mortality (try to keep my house in order) remember what is was like to hold David in my arms when he was first born, and choose to hold the memories of David and my Daddy in my heart forever.
(my cousin passed away on February 18, 2013 – this was held in the draft category for far too long)
Let me just say it’s taken me a long time to get mentally ready, in fact I think my mental and spiritual psyche rose to the occasion on Sabbath, April 27, 2013 right before I was heading out to church – can I hear an AMEN???!!! Mind you this is after a lot of preliminary appointments that began on March 22 and after 4 out of 28 radiation treatments.
Yes I have to do 28 consecutive radiation treatments everyday Monday to Friday and yes that means I go Monday, Tuesday, Wednesday, Thursday and Friday. It’s important that I spell this out, because I’ve said this, and then people say what are you doing tomorrow? … Do you have a lot of doctor’s appointments this week? … Do you have to go every week? (yes I think consecutive includes this) … How many days do you have to go? (28 weekdays)
So does this mean the Chemo didn’t work? Again the hardest part of all this cancer treatment is the non-definitive knowing that the treatment is working, everything that I’ve undergone is based on previous patients success with treatment, yet we know every patient is an individual. This is where faith comes in. So although my cancer PET/CT scans show no signs of cancer, radiation is for those cells that are still so immature that they don’t show up on those screens. The magic number 28, is determined by previous patients with a similar diagnosis to mine and their success after 1-5 years.
I think I lost my mo-jo for treatment – I was actively working on my fatigue factor, limiting my naps, reading more and I just dread feeling fatigued again. Everyone says Radiation is less taxing on the body than Chemotherapy – but for me that statement did NOTHING for helping me to get my mental and spiritual quotients up. I had to return to my ipod’s healing text CDs, music mixes of faith, healing and trust and prayer. A lot of the trials we go through are simply to keep us dependent on God, I am the poster child of God’s dependent!!!
They say Radiation might pose a cumulative fatigue factor while Chemo’s fatigue factor was cyclical and compounding with each successive treatment so I’m believing Radiation will be better and again I pray for no complications and radiation healing what should be healed.
It’s interesting to be “out of your body” and go through the PREP exams when you’re NOT mentally or spiritually ready. Me wondering how many times the nurses and techs have said these same exact words with other patients, similar to telemarketers trying to sell you next day carpet …
Relax your arms (as you hold them above your head for 20 minutes … really? really? – I remember my eighth grade teacher punishing me with a similar exercise, standing upright with my arms extended east to west)
Don’t move (but do breathe)
What kind of music would you like to listen to (I can’t hear any music above the noise of this machine)
Are you ok? (of course not, as the tears are streaming from my eyes to my ears, while I force myself to hold still flat on my back)
You’re doing a good job (the muscle’s in my arm are visibly spasing and tears are rolling down my ears!!!)
Don’t wear the Aquaphor ointment during radiation because we don’t want “no fried chicken” (speaks for itself)
This mold is custom made for you so you lie in the same exact position each time (great can I have mine with a Burberry Print)
If I was in a great mood, none of these statements would have meant anything!!! In retrospect and throughout my care I have been simply amazed at the compassion of my health care team. It takes a special person to work with cancer patients, who experience a wide variety of emotions subject to change at any moment. Some how these health professionals maintain their calm, upbeat attitudes, and I must say even in my lowest points, not one person has come across as scripted or rote. They all do their jobs independent of their patient’s emotions as well as their own lives happenings, none of us are immune from the trials of life.
We could all use a lesson from an Oncology professional they put a whole lot more meaning into grin and bear it they are more like be genuinely compassionate or go home!!!
So each appointment is a precise 20 minutes, so I lay there I breathe, I pray for any and everyone I can think of, I like seeing what gospel songs role forward in my mind, I visualize the bad cells already gone, the normal cells being resilient and strong enough to not suffer any injury from radiation, and God and his angel’s upholding the function of all my organs and lymph nodes that are in close proximity. And lastly, I try not to laugh as I try to figure out what animated emotion-icon my baby brother who lives in California will have waiting for me as I arise and reach for my cell phone :0) I am loved, and I’m not alone!
I finished chemo on November 7th.
My reconstruction surgery was scheduled for Dec 20 … so my family (2 younger brothers and my mom) decided to come sit with me in Maryland through the Christmas holidays as I recuperated from surgery. #Mission_Failed. On Dec 19 evening, my favorite and only oncologist suggested that I postpone my surgery because my white and red blood cell counts were low and STILL declining. I was disappointed … because I am a planner … we tried shots to get my counts up but they only gave me a temporary surge … so I had to continue getting my blood drawn every week … my blood had to stabilize on it’s own … then finally had that surgery on Feb 7.
I got released on March 22 by my plastic surgeon to start radiation. By then my consultation had expired so I had to have a re-eval, stay calm, repeat more tests, stay calm, see a physical therapist, stay calm, have 2 separate orientations and at long last … I am in the FINAL chapter of y my treatment … Radiation!
Lesson Learned: My timing, isn’t always – my doctor’s timing – and/or God’s timing
One of my favorite Mantras: “Hurry Up and Wait …”
After my first administration of chemo, brother brought me back to his house. I was just waiting for the vomiting to start. I took a 30 minute crawl-walk outside, I ate the meal my sister-in-law provided slowly.
When it was time to go to bed, my brother walked me downstairs to the basement bedroom, and I was already starting to feel weak. Once I got down there, I told him I had left my anti-nausea medicine upstairs and I needed him to get it for me, he said I didn’t need it. Then I asked him to get me a towel so I wouldn’t ruin the carpet, and we started having this argument. He said I was only nauseous, nausea doesn’t equal vomit, not all people experience nausea, not all people vomit, etc. I told him (cause I’m a planner) I just like to be prepared for the worst, so I either need my medicine or I need a towel. He walked to he guest bathroom and after what I felt was longer than enough time, he brought me back the smallest face towel he could find … we laughed, I took the face towel and told him I’d reimburse him to have the carpet cleaned if I had an accident.
As I look back on this now … he was working on my mental nausea … where the mind goes the mind follows …
I can NOT take away from the very REAL fact that nausea and vomiting with chemo is very real. But each day is a new day to re-program and start over. The nausea does sub-side … eventually. It’s better for me thinking today is going to be better, than for me to start the day off thinking it’s going to be the same as yesterday or worst.
This lesson works for life, where the mind goes, the mind follows, and you have to keep thinking things will get better because if you think things are going to be the same or worse … it’s hard to make it better … I need a better way to say this … ok … you’ve got a hill to climb is it going to be easier thinking you CAN do it, or easier thinking that you CAN’T …
Oh my!!! This is embarrassing … and I have sooooo much to say - – - I think I’m back in blog lane … so hold on to your seat belts …
Well since December 14th entry – I’ve had problems writing the “Thank You” blog – I just can’t get the wording right, acknowledge all the love I’ve received – it’s un-writable. I will continue to WORK on that one. I am mostly amazed by my newer friends, friends that only knew me for 2-3 weeks and outpoured their love and support. Random church members with their encouraging words, one of which said … I wish I could remember the words exactly … it was in the realm of God knowing I could handle this trial … I was honored by that statement, could that be true??? God thought I could handle this, with e v e r y trial I have experienced, my friends who know me, know my mantra has been “How much stronger do You (God) want me to be??????” I don’t think I’ve used that mantra with this cancer, I think I’ve approached Cancer as pray a whole heap of a lot, and check off the check off list – just keep moving forward.
I am also reminded of the friend who was having some breast abnormalities, repeat mammograms, ultra sounds and was scheduled to be biopsied and then the medical team couldn’t find anything to biopsy!!! She didn’t want to share with me her good news! I was soooooo happy for her, NO ONE should have to go through this, and she’s my friend so she definitely should not go through this!!! She had experienced a miracle!!! and I needed to know that God still does miracles because I needed one!!! She felt that I might question God as to why her and not me. Because she said it, as I drove home from our conversational exchange, I realized I have not asked Why me? I have not been angry that I have breast cancer? I have been amazed that my disease was so extensive when I had been having regular annual and 6 months mammograms I was angry that I had to take chemo. I only asked ONE person why? Because I knew she would give me the answer I wanted to here? We can’t always have the answer to Why but we can have the will to fight thank you GPR.
And now, I have a dear friend’s cousin who is newly diagnosed with Breast Cancer. She started her chemo last week Thursday, April 18th. She’s asking me questions, I’m trying to be a support, I send her to my blog, and I realize, based on her questions … there’s a LOT I haven’t talked about … so I got some catching up to do …
But the biggest lesson in this blog, is keep moving forward and check off the to do list …
I really can’t tell you what happened with my writing. But the longer you don’t blog, the harder it is to blog … so here is my attempt to get back into the saddle
Well I last recall being not as excited as I thought I’d be at the end of treatment #4 which was to be my half time. Things did feel more exciting after treatment #5 it was though that was the official “coming down the slope of treatment” moment. For the first 4 treatments I had Adriamycin and Cytoxan which brought their fair share of nauseousness, and loss of appetite, fatigue, weakness, etc.. Once I got to Taxol, I started having muscle aches, joint aches, soreness, still fatigue, but my appetite came back. I never loss my sense of taste … except as it came to French Fries … my favorite food, AFTER cookies … for the first time in my life I could taste whether or not the deep frying oil had been changed on schedule, the first time, I thought it was just a bad restaurant but after a few more occasions my hypothesis rang true, to this day, I have not returned to fries as much … that might be a good thing … I’ll keep you posted on that … All and all I did not gain or lose weight throughout chemo.
After treatment #6, I started having memory loss and word finding difficulties … Looking at a fork on the table and not being able to call it a “fork”, wanting to say I woke up at 3:00 am and not being able to say wake, woke, awake … I felt like I was playing some form of the game Taboo where I’d never get buzzed. I told my doctor this in my matter of fact way, just amazed at what the human brain can do, I also felt the word finding difficulties matched my dry and hilarious sense of humor, and my doctor was alarmed and said, “do you want to stop treatment?” I was like, “WHAT???” Recall, I didn’t want to start chemo initially in the beginning, do you mean to tell me I can just STOP, I was confused … he changed my chemo treatment interval to 3 weeks (prior it was every 2 weeks) and we re-assessed … my memory had improved, the word finding difficulty improved … so we elected to do ONE more treatment. My doctor said that the regular treatment interval is every 3 weeks, and he started me dose dense every 2 weeks, thinking that at some point I would transition to every 3. He felt that since I had withstood treatments so well, that the cancer didn’t have a change to re-grow (or some fancy word better than that), so he felt the medicine had done it’s job, and my cure wasn’t going to be dependent on treatment number 8, so I stopped at lucky number 7 which is also God’s PERFECT 7. I am finding the words but still tangling my sentences, putting words in the wrong places, so I might need to start talking more to get my words back in my brain or something … I saw the seriousness of this side effect when on last week he wrote on my PET/CT Scan orders: Brain (memory loss, word finding difficultly) … Can I just say chemo is serious!!!
Soooo … all my treatments were finished BEFORE thanksgiving – and although I was still fatigued, nauseous, achey, and my hands and feet darken-ed I was just THANKFUL that I had no more chemo in my future.
It is really a miracle that I was not hospitalized, had no allergic reaction to the medicines, got no infections, no emergency room visits. It’s because of your prayers, your positive thoughts and God’s awesome power that my chemotherapy is complete! Hoorah!!!
Lesson Learned: What ever you are going through, eventually comes to an end, you look back and you can barely remember where it all started. I’m not far away enough to say, it wasn’t bad, for today I say, “IT WAS ROUGH!!! but I made it!!!” … I look forward to having it further behind me, with more great times ahead. Seize each day …
Surgery and Radiation await … oh joy I’m over the hump …