THE GOOD, THE BAD AND THE UGLY

This journey that Bob is on and which I ride along with and support and care about is long and hard.  We have seen the good, the bad and the down right ugly days.

Right now and for the past seven to eight weeks we have seen good days.  These days seem to be calmer, not as much tension in the soul.  Bob has been feeling pretty good, actually.  Bob is driving, going for walks, reading and a biggy shopping!!! Yes Bob loves to shop??? for.........hmmm-- electronics, gadgets, "men toys".  Bringing some of those purchases home, then of course, require rearranging of furniture, new drapes, changing shelves.----you know!!! "women's toys"  hehehe,tehe twitter. 

Anyway we have done a lot together these last weeks.  We have just had fun.  Bob is learning that yes he does like to cook and help in the kitchen.  His challenge now is diabetes.  We never stop learning!!!  However no evening stops at Dairy Queen.

My goal in documenting this is there are short seasons of enjoyment among the ongoing cancer.  We are learning to claim these days, enjoy them and thank God for the answer to a prayer no matter how small it seems.

We have made some plans to head to MB on Thurs. April 6 after Bob's chemo infusion.  This has been a huge step for me as I have allowed fear to creep into my heart.  We are both excited to go, to leave our "normal" even for a few days.  I do not allow myself to plan to far ahead as we never know when the good days will turn into bad days.

This past week Bob has his same old friend, pain, back.  Back in the same old spot, back with the same old intensity.  We believe the pain radiates from the same spot that was radiated in Jan.  Bob has connected with our nurse practitioner and she has increased his pain meds. From the radiation pictures she was looking at, the nurse thinks it may be a different spot.  She is checking with the oncologist radiologist.   On Mon. we should get a call from her as well as a visit when we are at the hospital on Wed. 

Next Wed April 5, we see the oncologist.  Pray with us that the protein marker for cancer has not spiked.  Pray for wisdom about what chemo to take.  Pray that we will not have ugly days anytime soon. Pray that we will make this trip to MB.   Pray that our faith in the Living God does not waver and that we will continue to trust Jesus to be ever present on this journey.

'HURRY HARD'------------> BIRTHDAY

We have spent a fair bit of time watching curling over the past several weeks.  We are now into the Ladies' Worlds in Bejing China.  Well,,, we are almost getting ready for bed as we watch team Canada curl their morning games.  Harder to keep track of the event because of the time change from here to China.

Somewhat sadly we did not hurry to Ontario for dad's funeral.  This was a tough decision for Bob to make.  He is feeling so much better but mostly mentally and emotionally.  The physical is still challenging most days.  As we considered what the trip entailed, we thought that getting there and needing to be in bed for a couple of days would be to hard on everyone.  Bob is blessed to know that many, many people attended the memorial to honour his dad.   We saw dad in Oct. just as Bob was beginning to take the pomolyst.  That had been a great visit.  Dad had been reasonably well and we were able to help Reta prepare their home for dad and meet with many health care people who were beginning the journey with dad.  Reta is doing well.  She has had a friend with her most of the last three weeks.

God blessed us with hmmmm--- a mini wake the Thurs. before Dad's memorial.  Bob has cousins in the city whom we do not see---only rarely!!!!!  Ernie Hildebrand"s dad John (Anne) passed away just before Christmas.  Marlene Hildebrand"s dad Dick (Mary) passed away a couple of weeks before dad.  Mary was dad's sister. Dick and Mary lived in the Austin area of MB.  Mary had passed away, I believe, a couple of years ago.  Ernie's folks lived in Beamsville ON.  Anne is still living in Beamsville.  A number of folks who follow this blog know these folks and connections hence the bit of genealogy.  For those who do not know the genealogy yes Dick and Mary did have the same name.  Mary always was a Hildebrand . =)
Marlene and Ernie came to have dinner with us.  We had a super time with them.  Hopefully we will try and connect more frequently.  The three cousins talked about their parents and what they remembered about their aunts and uncles.  Bob and I learned a lot about the family that we did not know and had never heard before.  Part of this because Ernie and Marlene were both born in Paraquay and either remember  and or have heard the stories from their parents over the years.  Most of the family resettled in Ontario.  Bob's dad was the only one of the family who had not moved to Paraquay.  Slowly the family all came back to Canada other than two brothers who eventually made their fortunes in South America.  This evening of visiting was a very special time for us.

Bob has had a good couple of months.  He doesn't need to nap as much.  We go out walking again.  We walked to church last week.  That would be about 5 to 6 city blocks.  Sheesh that hardly seems far now.  Bob has received a few calls from his former work site plus he was out for one afternoon which he enjoyed.  We went out to a concert.  Bob was glad when it was over!!!!  The two hours of sitting got long towards the end.  He goes for coffee with a few different guys.  He doesn't call Tim Horton's his office yet but does occasionally go to our friends office at Timmie's.  We are enjoying this time together.  It is like a real normal soooo that means getting use to retirement.  We haven't had doctor appointments or tests these past weeks so it truly is an adjustment.  Pray with us that the protein numbers have not shot up.  Should the case be that the numbers stayed low and show no spike Bob may continue on with only the two chemo drugs.  The infusion once a month and the dex once a week, that make life a sweet redemption.

Bob is now hurrying to his next birthday.  On Thurs he will be 68.  We praise God for each one of those years.  There was a time at the beginning of this journey I believed he would not celebrate his 60th birthday.  These birthdays do come along faster and faster each year.

Some great things about getting older: 

 *closed-captioning makes the evening news seem like an exotic foreign movie.

                                                                    *you will probably be among the first hostages to be released.

* Handicapped parking spaces.

*You always get the comfiest chair in the room

LATER!!!!!

HOPE///// BACKING UP

Hope is a confident trust with the expectation of fulfillment. 

 Bob's dad, Peter, had a hope that he would spend eternity in heaven with Jesus.  He believed he would once again see all believers (mom) who have trusted Jesus as their Saviour and have already passed. Today dad is seeing the fulfillment of that expectation.  Dad passed away today, February 26, 2017.
Dad had just turned 94 years old.  His life was filled with so many experiences, joys and losses.  Dad was giving of all his resources, his time, talents and finances to his family when we had need.  He was patient and loving to us and his grandkids.  The three grandkids were his pride and joy.  He loved each of them with an unconditional love.  Dad worked hard his entire life and never gave up.  He was the eternal optimist.  The Fishbooks called him"no problem Pete". 
 We loved him and will miss him greatly.  We talked with dad at least once a week.  "Well hello Shirley Hildebrand, you are looking good today.  How are things out west?  How is my Bob?" spoken in that loud cheerful voice.  Makes me cry as I type those words.   Together dad and Reta were our (Bob"s) leading prayer warriors.  That will leave a huge hole for sure.
Hugs to Reta who together with dad celebrated 25 years of marriage.

Death leaves a heartache no one can heal, love leaves a memory no one can steal. 

 from an Irish headstone

Since the last post; we have received renewed hope for Bob's health. Dad would be pleased.  The protein numbers are at the lowest they have been in nine years.  Bittersweet since Bob stopped taking the chemo on the 12th.  The oncologist was so thrilled that he did not really deal with Bob's decision.  However we did do a backup and Bob is taking the chemo again.  Like the doc says"don't screw up what you have accomplished".  Did he really say screw?  Perhaps not.  At this point Bob is not taking one of the chemo drugs-----the pomolyst.  It transfers to the brain and could have caused the huge side affects that Bob had.  We do not see the oncologist until April but Bob will be doing lab work every week.  He has the darzalex infusion on the 9th of March.  Pray that the protein numbers will stay low without the pomolyst.

Due to the fact that Bob is feeling so much better he has decided that we will be going to Niagara Falls for dad's memorial.  At this point though nothing has been decided.  Pray for Bob's brother as he is the executor for their dad and is in contact with Reta as to plans etc.

May the memory of dad (Pete) bring us peace as we prepare to meet him where Jesus makes us whole.

DUTY AND HONOUR

Bob is now officially retired.

 This past Thurs. (Feb. 16) a luncheon was held in Bob's honour at the ranch near the estate where Bob worked.  The staff set the room up so very nicely and it really was pretty.  The meal, along with appetizers was catered and served by Hyatt staff.  We thought it might be sandwiches and dessert but this luncheon was first class all the way.  I was especially pleased and blessed at how Bob was honoured.  Kind words from Kelly, the estate manager, from the President of Exploron as well as the Shareholder.   The emcee Darrell did an awesome job.   Bob has left an imprint with his coworkers.  Several folks from "the city" also came out.  These are people Bob had contact with in the course of his job.   It was special in the fact that I was included in some of the "roasts" and kindnesses.  We were acknowledged as a team and that was special.

For me personally the best part was the speech that Bob gave.  He did so well, even leaving his notes and adding in situations off  the cuff.  To me it showed his mind was clear and he was thinking on his feet.  He was articulate and his hands were not shaking.  Through his words I believe Bob honoured God.  He also honoured the staff and Shareholder.

The company has also put Bob on a monthly retainer.  This allows them to call him and discuss various situations.  Bob will also connect regularly with the young man, who he trained to take his place.

This is exciting for Bob and with a clear head he will be able to manage.  Once again God has gone ahead and blessed us.

All of that was written to set the tone for a decision Bob made.  Last Sunday was the last time he took the oral chemo.

The chemo had started on the previous Thurs. and by Sunday Bob could not go out to church or go anywhere.  We tried short walks and then he would sleep again.  He seemed to sleep a lot--around the clock.  Bob's head was fuzzy and he had tremors sometimes light ones and some times all out shaking.  Thinking of the week ahead Bob realized that he would not make this luncheon or would be a pitiful disaster at it.  Bob has the pain under control and we knew it wasn't the pain meds doing this to him.  So he stopped chemo.  Not sure how this will play out in the weeks ahead.  Bob also wants to gain 25 pounds before he starts chemo again.  That would take him all the way up to 155 pounds.

We checked with Dr. Google about this constant weight loss.  From what we have read we think he may have cachexia.  He is weighed at each doctor visit and we hear "Robert, you have lost more weight" but never had any cautions or teaching.----  Oh yes we did, he was to eat more high fat stuff.

We phoned our oncology nurse and have an appointment to see the oncologist on Tues.  This will be interesting.
In the mean time Bob is living an almost "normal" life.

Bob's dad is not doing well.  He is back in the hospital with sepsis plus at least 2 other organ infections.  My prayer is for mercy for dad and for him to go and be present with Jesus.

Constant change is the course of life.

NEW YEAR MULLIGAN

I wanted to give the definition, that I was planning on using, for mulligan, however when I went to our dictionary (as in a paper, book dictionary) I received a surprise.  "Mul.li.gan: a stew of vegetables, meat or fish and other foodstuffs."  This was the only meaning given.  Hmmmmm, this is Bob's dictionary that he had when he was in school taking structural technology.  Is it really that long ago?  Our world sure has changed.   DUH!!!!!!! This meaning is from the Webster's Seventh New Collegiate Dictionary copyrighted in 1965.  I think yep a lot of words floating along under the bridge since then.

For me, mulligan means (thanks to google) not only  stew but also a "do over", "a second chance".  I am taking the word out of the realm of golf and putting it into a positive for BOB'S JOURNEY.

The last two months of 2016 were difficult for Bob and me.  He really was not feeling well and his health, both physical and mental was struggling.  We carried on the best we knew how with the meds, doc visits and praying.  I truly was beginning to think that my Bob may be going home to Jesus sooner than we thought.  The oncologist following all the blood work said things were doing well as he looked at the results.  This past visit we had a list of what was happening with Bob and made it clear that we now wanted quality of life not quantity.  HOWEVER. no matter what we think is happening, our God is always in control.  Our Dr. wasn't surprised but by looking at the science of the blood, what was happening to Bob should not be happening.  We got a God given mulligan.

We now have a new team working with us and alongside the oncologist.  Our main contacts are a pharmacist,  he is totally amazing----really!!!. and a nurse practitioner, she is soooo smart---really!!!  We spent two long and one shorter day at Tom Baker this week.  This team found us and met with us wherever we were.   They report to two palliative care doctors.  I don't know what happened to that other group we met at the pain clinic.  Bob may have stumped them.  PTL that we have who we have. 
They have determined that Bob has been over medicated for pain.  He takes several different drugs for different pain such as neuropathy, bone pain, etc.  They have tweaked these meds as some of the chemo also covers pain, they are using all these drugs and trying to get them to work together not just all dumped on Bob.  They also determined Bob has a more than average sensitivity to opiates.   We have a plan--printed out---to follow for the weekend.  once we see how that goes it may or may not be changed.  The pharmacist will call on Mon.  When we were at the hospital on Fri our new buddies could already see a change in Bob.   Bob's treatment will be fluid as the plan is for him to have some radiation on a spot that is"hot" and is where there is pain.  Of course with radiation will come another whole set of side affects.  HOWEVER the radiation should also help with the pain. Bob will then need less drugs.

To me, the care is now in two parallel, co- joined boxes: one for chemo and cancer and one for pain management.  I am pleased.

The Lord knows the length of our days.  God knows all that goes on with us.  Bob and I believe that His Hands are on us and Bob is not going to his eternal home today.

This prayer says it all for us, as we have trusted Jesus with our eternal soul:

Lord, when physical limitations begin to press in, I don't want to be defined by any loss of health I'm experiencing, whether it's a temporary impairment or something more permanent.  I realize this body wont last forever--that it indeed is wearing out.  And while I hope to be as whole as possible for as long as possible, you gave me this body, and so I will be grateful for every day of life you give me in it.  When there is pain, give me the grace to endure it.  When there is frustration, carry me in your patience.  When there is sorrow, comfort me with reminders of my future with you.  And with every physical loss, let there be a spiritual gain that outweighs it and makes it seem small in comparison.

taken from the book A Woman's Prayers from the Heart

PROFESSIONAL HELP

  Today is Dec.15 and we have just come back with a meeting at the pain clinic.  I don't know what happened to the first group of medical people we met with, however I am so pleased with the doctor and pharmacist we met with today.  We spent a lot of time with them --almost an hour and a half.  They had read Bob's chart and were familiar with what had been happening.  They also had a plan.  From this point forward the pharmacist will have the lead.  Altho, he explained, when Bob's pain is stabilized and under control the prescribing goes back to Dr. Bahlis.  Their case load is huge with drug care for cancer patients plus the palliative cancer care.   Bob is staying with the Lyrica and Cymbalta.  These are for the neuropathy plus could be having an effect on the bone pain as well.  The plan is to use only one opioid which will be hydromorphone.  This will be in various amounts and strategies until the right recipe is found.  Bob said that he could live with pain at a level 4.  That would be acceptable to him.  So now we wait until the pharmacist phones this afternoon as to how to go from here.  Bob has taken the agreed upon dose when we got home.  We will also be receiving a detailed instruction paper to follow once our meds are at our pharmacy.  HURRAH!!!!!  Our local pharmacists love us to pieces.  Prescriptions are always changing and each time we go in, Pharmacist Bob and Pharmacist Ali just smile and smile--- they have been great at caring for us.

The doctor we saw today is great.  She checked the pain areas.  She looked at the PET scans again and checked again.  She is going to get in touch with Dr. Bahlis so they can co ordinate any further tests.  Dr. Murray wants to find exactly where the pain is originating.  One possible next step is radiation on the hip, pelvis area ---where there is a tumour.  That does not seem to be where the pain is coming from tho.

It will be awesome when the new cancer centre is built.  Sadly our former provincial governments dithered around making a decision about building the centre for a large number of years.  For all I know it may have been completed or almost completed by now.  Today Bob and I saw the reality of that.  We knew that Tom Baker was beyond capacity but this took the cake:  The doctor had booked a room to see us in however someone was using the room.  Then a switch happened and we could go in and the other folks went elsewhere.  This room had the title QUIET  ROOM and had a love seat and 2 comfy side chairs--not an examining room.  The room was super hot with a noisy fan.  This room I was thinking was where a family perhaps came to be told a loved one had a cancer diagnosis.  When the doctor wanted to do an examination of Bob she went out to find a room but there was nothing available.  So part of the exam was done with Bob standing up.. When he was to lie down well it was super funny--feet over one end and head up one love seat arm.  The doctor was not impressed and apologized profusely.  The shortage in cancer funding is huge especially when we consider how many people are dealing with some form of cancer or other.

In spite of the many hurdles and shortages that the professionals at Tom Baker Cancer Care deal with, they have all been more than caring and amazing.  They do more than their very best, to treat each patient and family with respect and care.  Bob and I are grateful for everyone of these professionals, whom we have dealt with over the past eight years.  We are also grateful to our Lord Jesus Christ for allowing us to live in this province at this time.

Christmas 2016

I am sure that each of you hear and say;"wow, Christmas already".Hardly seems possible, in some ways, how quickly the seasons pass.

Bob's journey continues on.  The road seems harder and we are tired of the seemingly never ending bumps and detours.
Since my last blog Bob totally ditched the sleep machine.  He very often had panic attacks with the mask on.  We decided that he did not really need one more thing to deal with.
Bob continues going to the hospital once a month for the daratumumab infusion.  This infusion takes 4 hours and he is able to sleep through most of it.  Bob is still on the pomalidomide (pomalyst).. The protocol for that is taking the pills orally for 3 weeks and having a week off.  Added to the regime now is cyclophosphomide.  Taken orally every other day. Plus the dexamethazone for 3 days around the time of the infusion.  Those are the chemo drugs.

Bob spent a few days in hospital over the Nov/Dec calender flip.  He was really sick.  The big concern was the neutrophils being down to point 3, so with really no immunity he was in isolation in emergency------most interesting situation and very challenging for Bob.  He was given a number of Filgrastm needles in the belly that get those neutrophils reproducing.  Five days later the blood test showed them to be at 3.  Therefore onward and upward with the next round of chemo.  Lots of stories about this hospital stay!!!!

We were hoping for a chemo break but both our family doc and the oncologist noted that with the protein number going down we don't want to jeopardize what the chemo has accomplished.The kappa lambda free ratio is 80.41.

The other thing that happened in the hospital is the doctors tried to get the pain control meds under control.  One thought was that he was actually overdosed.  We were at the new hospital near our place so they had totally different ideas than the Pain Clinic and Oncology Dept over at Foothills.  All the symptoms are under control and Bob is back down to hydromorphine again.  He had already done the Fentanyl and methadone.  He seems to be holding the pain but the opioid wave may be coming to an end as he does have some more pain again.  Once again we are working with the pain clinic.  Half way through the month Bob goes for blood work to make sure all is well .  He had been going only once a month.

So much yuck detail but so many things I do not want to forget.

Bob's dad's health is deteriorating.  Seems like his mind is going too//- dementia or cancer???  Very hard for them.  The doctors are not doing any more treatments.  He had radiation.  Reta also said they didn't think they would do more treatment even if it was offered.  Pray for God's peace and mercy for both dad and Reta.

************                               *************                    

Merry Christmas to each of you.  Celebrate this Christmas season with family and friends and enjoy much happiness in even the smallest joy.

In Jesus, we find more gifts than our hearts can ever imagine.

 May I ask that you give a thought to why Jesus came to earth and as a baby.

For in Christ the fullness of God lives in a human body.  Col. 2:9

With gratitude to those who percivier in prayer for Bob and me.