Fall 2017

It is the middle of Sept.---well, almost.  September is like a January.  It is like a starting over or a starting again month.  Lots of new clothes and supplies for school like clean scribblers and new binders.  Purchasing new warmer clothes for the winter months, that will be here all to soon.  Our daughter got into some canning and jam making this year.  So very neat to see that happening.  Putting things "up for winter".  I spent years doing that.  Having a large garden allowed us to feed ourselves for pretty much all year with vegetables and fruit.  Time changes everything and this year our September beginning looks different.

Well we came into Sept. optimistic that the cancer would remain static and the pain would be defeated.  However, we are beginning again to fight this horrible disease, beginning again to find answers to Bob's pain. 
The cancer markers hadn't all made it back from the lab due to the long weekend so an important piece of the puzzle was missing.  The cancer protein marker wasn't back.   Bob's blood counts were all adequate.   It was the PET scan that determined we needed to start fighting again.  This is what is called the IMPRESSION at the end of the results of the PET scan.  Written by the doctor of Diagnostic Radiology and Nuclear Medicine:  

Adverse change compared to previous.  Metabolic activity at several sites of disease compatible with disease progression has increased as discussed above..There is also a new, low-grade, metabolically active focus at T1.  At C3 and L1 there  are new anatomic changes of progression as well.

The last PET scan was on April 24,2017.

Sooooooo for this month Bob has begun to orally take another chemo drug.  Pomalyst has been added.  It is kind of up in the air (I believe) as to whether he will continue with the darzalex infusion.  He has had that for 18 months.  We get a call each month from the drug company that produces and provides this drug.  It is a small thing, but the gal we spoke with didn't mention next months infusion.  She has always given us the date for the next time.

We started over again with the Pain Clinic.  We did that once before but things got all blurry when our oncologist or our GP helped out with pain and then meds got changed and added to and Bob was a mess again.  This time we are more organized.  Bob and I are doing it together and anything to do with pain goes only to our pain team.  To seal that deal we get a call from them every other day---at least for now.  :-}   PLUS we will meet with a home care team who are part of the pain clinic.  These folks are not the cleaning, cooking, bathing home care team.  This team is on call 24/7 and deals with pain and the meds for it. Things usually fall apart on the weekend or the middle of the night.  They will help us get to the right place for Bob or help us adjust what Bob is taking.  Hopefully we won't have to deal at an emerg dept that suggests we should only go to Foothills Hospital because they don't have an oncology dept. and are asking "do you regularly take all these meds?"  The home care team will access what we should do.  However an ambulance will only take you to the nearest hospital.  Anyway we are getting things sorted out-------I hope.

Bob also had a bone marrow aspiration.  This will help the oncologist to see more clearly what is truly happening in the bone marrow.  Results will be at our next appointment at the beginning of Oct.  

We take all of this in our stride.  Bob has the best care possible for multiple myeloma.  Often we both get a little muddled in our thinking and what to do.  We do have God our Father walking along with us and we endeavor to hold tight to His Hands.

A comforting verse taken from Joshua 1:9  Have I not commanded you? "Be strong and courageous.  Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go".
Interesting fact:  Last Sunday I started to teach this verse---well the beginning of it to the 2 year old Sunday School class!!!!!!!

It is indeed a verse for all seasons of life.

AUGUST LONG 2017

The summer is spinning by at a seemingly crazy speed.  After this weekend it always seems to me that it is full out toward back to school.  Getting back to sweaters, long pants and buying the least expensive loose leaf available!!!

The number of times that Bob and I have gone to the Tom Baker Cancer Centre also seems to accumulate ever so quickly.  We are now into the ninth year of fighting this cancer.  We were at TBC yesterday.  One of our friends hoped that our meeting with the oncologist would be mundane.  Well it was ordinary, at least as ordinary as the last couple of visits were.  Gotta love ordinary.  Bob's cancer markers were steady to two months ago.  Dr. B. was thinking the spike in last months numbers was either a lab mistake or an anomaly as the numbers are right back down.  Bob's blood work is low but acceptable according to the doc.  Bob had another round of darzalex yesterday and so nothing has changed, at this point, for his chemo regime.  That fact also makes us happy.

Sadly, the pain Bob has, has increased to the point he can hardly stand it at times.  Before the end of Aug. he will have another PET scan.  This should show what is going on in his hip and pelvis bones to cause such pain.  Everyone seems to agree that bone pain is the worst.  We are seeing the reality of that.  Bob explained the cancer to someone in this way  "the cancer eats holes in his bones and then the bones weaken and can crack."  He had a fall awhile back and that could be what has happened.  To relieve the pain he is trying some alternative pain stuff but today is back on the morphine only.  Fortunately for me, well for both of us, Bob remains optimistic and mild mannered.

We made a trip to Manitoba.  That time in MB seemed to spin by so quickly. We had a memorial and the interment of Bob's dad's ashes.  He has been interred in the same grave as mom.  Gerry had ordered a smaller marker to sit in front of mom's.  One day was the immediate family only.  That turned out very special.  We were joined by extended family and friends on the second day.  We had a meeting at the grave site followed by lunch at our niece's home.  So very good to see all those folks again and reminisce about both dad and mom.  Crystal is almost the spitting image of mom when mom was younger.  Once the pictures were out the similarity of mom and Crystal was amazing.

We then were in Winnipeg to celebrate my mom's 89th birthday.  That was a fun day.  My brother is  a social convener extraordinaire.  Lots of games that all ages from 4-89 took part in.  Mom was even in the 3 legged race-----not to shabby for 89.  My sweet sister and brother in law babied us for a few days (oh so nice), and we spent time with mom.  We had supper with some special friends from the north. 

 We were able to visit with several other friends both in Brandon and Winnipeg too,  so "it was all good".

Oh Oh we also went to the colony where my friend Deanne lives.  We were treated royally by her family and enjoyed fellowship with them and a tour of their colony and life style.

The wheels on the Terrain were just spinning like crazy on the way home as I took over the driving!!!

Hebrews 13:5b  "God has said, "Never will I leave you; never will I forsake you."  We cling to the Father as these days roll along.

STABLE

In the dictionary stable means not fluctuating.  Stability is the strength to endure or stand.

Each of us want to live in a stable environment.  We want our relationships, our finances, our jobs all to be stable.  Most of us want to know what is ahead from day to day.  As we grow older we realize that a stable world is not always the case.  Our world and the forces in it are in constant change almost every day.  Jobs and the security they provide can be tenuous.  Our families change and make choices that perhaps are foreign to what we know and believe.  Partners and friends change.  They can become someone different from the person we learned to know months or years earlier.  Our stable life can be turned upside down leaving us in a muddle not knowing what to do or how to react.  Bob and I are thrilled to know Jesus.  he is stabile, no matter what is happening in our lives.  Hebrews 13:5b says" because God said "Never will I leave you; never will I forsake you".

Bob has waited many months and with baited breathe that the cancer he has would not be constantly marching ahead.  We were at the cancer clinic yesterday and the protein numbers, and the blood work have all remained stable.  HURRAH,  therefore no change to the chemo protocol.  Bob is doing well physically on this protocol.  Under the supervision of a diabetic nurse the diabetes is also stable.
This was not what we expected and so we are very thankful.  Since last month Bob spent 4 days in hospital.  The docs believed it was an infection and because of his compromised immune system he was give a large, strong regiment of antibiotics.  The docs settled on pneumonia as the infection, in the end, however several other conditions cleared up as well.  However the chemo regime was altered and then cancelled for a week.  Thankyou to those who are continually praying for us.  These easier months would not happen without the prayers of friends and family and God's mercy. 

I have to say that Bob has great stability because of our God who never changes.  Bob has endured so very much over these past nine years that I firmly believe that his strength as a person can only be God given.  Celebrate with us this month and pray that our next results will also be stable.

POWER

Today is a super day in a number of ways.  Today is the first day, this year, the temperature has gone above 20C.  The power of the sun changes everything especially how I feel.  Drab, gray days make me, well, drab and gray.  The leaves will very quickly burst forth now....summer is around the corner.

Today was also our monthly trip to the Tom Baker Cancer Centre. We received a call yesterday that Bob's appointment could now be moved forward in time.  There goes supper out!!!! but an earlier time is always good.  The new time was for 12:30.  The  area around TB is under construction and what has gone missing is the parking lot.  This is always a challenge---finding a spot that isn't at COP.  Today we drove  into the closest lot to TB and like we couldn't believe our eyes there was a spot right near the entrance AND no one else was vying for the spot.  We were now early, but were prepared with our reading material and water.  We had hardly gotten settled when "Robert Hildebrand" was called.  And as only I (Shirley) could say "REALLY'!!!!! complete with a smirk,  we were in.  Once in the examining room we didn't wait either, tickety boom, the nurse does her thing and  Dr. Bahlis is in.  Land sakes took my breath away.  All done by 12:43.  That is some powerful performance.

I wish I knew how to copy the PET scan results and the graphs on here to share but I don't and don't have the patience to figure it out.  Soooo you will have to take my word for the results.  They are positive.

"The current PET scan examination shows improvement."..."No new hypermetabolic lytic bone lesions have developed elsewhere in the skeleton."...."No hypermetabolic masses or lymphadenopathy are seen anywhere within the body"...."other previously involved skeletal sites remain stable in appearance and inactive."...  "There is no evidence of active extra medullary myeloma."

Bob's blood work was good.  However the markers for cancer have gone up. The kappa free is 42.5   and the Lambda free at 1.6 making the ratio 26.56 up from 4.8 which is concerning to the doc.  In a month if it gets to be 80 or more the chemo will be readjusted and he may be back with chemo drugs that have some of the yukky side affects. However because of the PET results Dr. Bahlis will leave everything as is as far as chemo goes.

The growth on Bob's head was benign.

God is good and the power of prayer is keeping the cancer more or less static.  The power of prayer is also keeping Bob active and functioning and living life as well as possible

The pain Bob is having is not because of the cancer.  Dr. Bahlis believes that it is the deterioration of the bones.  Bob has holes in the pelvis and many weakened bone areas where there were active lesions.  This is in the spine, ribs---thorax area.  My big prayer now is that he won't fall.  The pain meds Bob takes work well but when he needs to take the short acting one to cover more pain, it makes Bob jerky and he is often sleepy and may sleep away most of a day.  That is usually after an extra busy day.  Our family doctor told us that all of this has aged Bob's body at least 10 years.  That puts him at 78.

We are thankful for these results.  My small ladies bible study prayed for a miracle and I believe that this is the miracle for now, for this month.  Prayer is a powerful tool to strengthen my unbelief.

Psalm 77:14  You are the God who performs miracles; you display your power among the peoples.

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.