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.

FLYING MONTHS-------OCTOBER 2016

We have seen back to school.  We have seen Thanksgiving and pumpkin pie.  We keep waiting to see changes in Bob.  Changes for the positive.  Changes that show the cancer has been kicked in the butt.  Sadly those changes haven't come.

The months fly by--from one appointment to another, from one treatment to another, from one delay to another.  The days often all seem to be the same and blur together.

Bob should be moving to receiving the daratumab once a month.  However he is still taking pomalyst 3 weeks on, 1 week off.  This sounds like it will change as his graph that follows the protein chain continues to go up.  Bob has had the setback 2x on having a PET scan done.  The next one is scheduled for Oct. 26.  The docs need to have a look at what is going on in the bones.  What is causing the pain that we can't seem to overcome.  The PET scans that didn't happen were crazy flukes on our part.  I think hmmmmm why the delay?????  There is a reason for everything!!!!

Bob has been to the pain clinic and those doctors and nurses are now in charge of trying to deal with the pain. We haven't settled on a solution yet----totally--- but are working toward one.  We are able to reach them easily by phone if we need to talk to them.

Dr. Bahlis is thinking of taking Bob off of the pomalyst and using another chemo drug.  Dr. Bahlis wants Bob to even out at the lowest level possible with the daratumab.  The research of using this new drug, daratumab,  is showing our doctors that it may work best as the first course of treatment with newly diagnosed multiple myeloma patients.  Yeah~~~~Bob is part of important research.

Today, he is sleeping.  I can hear him so it is all good.  ;-}   Bob has a sleep apnea machine.  We got it on Friday.  He has tried three different nose pieces but can't seem to sleep with it on.  We rent it for 30 days so will see what will happen with that or if we just give it back.  These machines are very quiet.  I don't hear it at all    DUH     mostly not on!!!!!!!  Bob tells me I need to use it.  REALLY !!!  hmm.  Well, maybe I will give it a go.

Bob is still receiving a pay check from Exploron Corp.  They were going to come up with a plan since the staff at the house still wants to phone him for info etc.  We aren't sure what the plan will be or if there will be one but they have been more than amazing to us and we will be forever grateful.  God has used the owner and staff to bless us abundantly over these years.

We made a trip to Niagara Falls over Thanksgiving.  Bob had some concerns for his dad and so we made plans to go.  This was over a week that was free from most everything.  After we made the plans and had dates etc. booked; dad was admitted to hospital and diagnosed with stage 4 colon cancer and spots on the liver and the cancer was in some lymph nodes.  This was so devastating to dad and Reta.  We were able to help them out some and were there to help with dad's move home to their apartment.  Today he was to receive the first radiation treatment.  The hope is to shrink the tumor so the bowel does not become blocked.  Dad is 93 and Reta is on the other side of 89.  They are fighting hard to keep on keeping on.  Dad and Reta celebrated their 25th wedding anniversary at the end of Sept.  That fact, alone, is amazing for them.

Bob handled the trip better than we though he would.  We are grateful for that.  He is my hero.  He never complained about the pain while we were away.  We did cross one thing off of our bucket list!!!  (even tho we don't truly have one).  However many of our friends do.  We took the helicopter ride over the falls and rapids and the general area.  It was very neat.  The two of us sat in the front too!!! which was special.  Making the right hand turn as we leaned hard toward the door was ok.  Perhaps a bit unnerving for the person sitting next to the door.  HINT--it wasn't Bob.

So as this year continues to fly on by we will hang on tight to each other and to Jesus.  The peace that comes from Jesus truly does transcend all our understanding.

PS
 excuse all my different spellings and punctuation.  The spell check checked out and the punctuation check said   ah ya yi and left it at that.  This disclaimer is for my teacher friend!!!

AUGUST,2016-----The summer it rained

This has truly been a rainy summer.  Considering Calgary does not generally receive a lot of rain at this time of the year it, is somewhat different.  However the abundance of rain seems to be true across the prairies.
 We had amazing thunder storms---with rain!!!!  I had missed the thunder storms we had in MB. Calgary did not seem to get the types of storms we had in MB.  It could be it was easier to see the lightening and hear the thunder away from the city, on the seemingly flat prairie we lived on.   However, the rain has made it  beautiful.  Calgary has never been this green and lush in the eleven years we have lived here.

Yesterday we had Bob's appointment with his oncologist and a chance to see the results of the past months chemo.  It could be like hearing the thunder---what we heard seemed much more clear to us.  
The tweaking or lowering of the pomalyst last month will once again be tweaked.  The dose will go back up again.  The dose will go to where it was prior to July when the results were most dramatic.
We had a feeling things were not at the happy dance point again when Dr. Bahlis's wife Dr. Neri was the one to come in.  She is the one who comes to help us accept, come to grips with and accept the harder decisions.   

The numbers had once again gone up--amazing really, that such a smaller amount of chemo would make such a big difference.  Dr. Neri explained that because Bob has had multiple myeloma for a long period and because it is wide spread the daratumumuab was not working as fast or as well as they had expected.  We could see the lightening and hear the thunder.  Hence the need for the pomolyst.  The goal is to get the free chain numbers down as low as possible before any leveling off.  The docs want to protect the kidneys from  high protein and creatine.  Soooooo more work to drop those numbers!!!  It seems that eventually the myeloma makes its way to organs and begins to destroy them too.  The kidneys seems to be the organ of choice to begin with.   What we heard is: that as much as we are looking to find some relief from this cancer and some semblence of normal (for 2 youngish seniors) that is not going to happen.  Bob will be dealing with chemo, blood tests, and side affects continuing well into the future.  We are hoping that even with all of that it will be many years of future!!!

What we could hear next is:  Bob's job, as he left it when disability kicked in, is not going to be there.  It cannot be.  Bob is tired, dizzy, at odds with side affects, and well, getting plain worn out.  How this will end is still up in the air.  He wants to feel useful but what that could look like we don't know.  Leaving is totally an option just a number of questions to deal with first.  The next couple of weeks will tell the tale.  

Today, Bob is at the hospital to receive chemo and then again in two weeks.  Then all the tests and another oncologist meeting.  Ohhhh that takes us to another month---September, yikes.

 Trusting that we will be able to discern what path the Lord has for our lives.

Psalm 3:5&6   "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight."
I need to claim that anew and hang on amidst the thunder and lightening.

JULY, 2016

I have been waiting, for the past three months, to be able to write that we have overcome, beaten, destroyed and killed the cancer. That is not the case. I liken it to one of those huge ocean liners heading full tilt in one direction and then needing to change course in the opposite direction. It takes time to turn the ship around and it takes time to stop the devastation of the cancer in Bob's body.

The daratumumab and the dex held the line for two months. The blood numbers that are followed as markers did not show any increases in the cancer but neither did the numbers show great gains in defeating the cancer. A month ago Dr. Bahlis decided to add the chemo drug Pomalyst to Bob's regime. This is a drug that he takes every day for three weeks and has one week off of it. Bob failed this drug---it had lost it's effectiveness after a time. The cancer pharmacy did not want to allow Bob to have it because it had failed. HOWEVER Dr. Bahlis made it plain that this is a totally different protocol using it with the daratmumab. It was explained to us thus: the daratumumab attaches to the cancer cells so that Bob's own immune system will then be able to find the cancer and kill those cells. This can be slow for several reasons in Bob's case. The pomalyst is more like an atomic bomb. The drug goes in and kills lots of cells at one time and hopefully diminishing the cancer cells. Working together these two drugs should move along the death knell of cancer cells more quickly.

Bob has now completed month 1 of 4 of every other week of dararumumab and dex. He has also completed month 1 of using the pomalyst. We have gone from feeling defeated to having a true sense of hope.

In June Kappa Free-----192. in July Kappa Free---33.10

Lambda Free---1.35 Lambda Free--5.42

Ratio-----------142.22 Ratio------------6.11

The accepted ratio (on our print out) should be 0.26-1.65

So we are doing the hAPpy dAnCE.

This joy comes at a cost to Bob's body as every drug has side affects. Knowing, once again, that most of Bob's physical struggles are resulting from the chemo gives us a renewed hope. As tough and often debilitating the side affects are, for now ,we know that the cancer is not in the organs wrecking havoc. Some of the symptoms can be handled by tweaking the chemo (which was done today) or tweaking the drugs that counteract the side affects. The pain from the damage to bones done by the cancer is under control. All in all we are figuring things out.

Bob and I have been on this journey a full eight years now. That is a lot of time and energy invested!!!! Makes me think waaaay back to when Bob proposed to me. He thought he had invested enough money on hamburgers at the A&W that he couldn't afford not to marry me. Those were the days of the car hops and no seat belts-- so romantic!!! How did we ever survive?

We are surviving dealing with cancer. More than surviving---conquerors because of Jesus. The hope we have for His best and ultimately eternal life.

1Peter 1:3 "All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus from the dead."

                     

THE PLAN

Today made us realize that when one has a plan, one needs to be sure that everyone involved in the plan, is on the same page, and following the same map.  I suppose it is also important that details are explained so that those who are not creating the plan, have a real sense of  what the brainstorming means.
All that to say Bob and I were going down a different trail from what the doctors were planning.  The treatment Bob is taking is NOT  Car t cell therapy as I had earlier told y'all.  This treatment has been proven for lymphoma but alas not near ready for multiple myeloma.

The treatment Bob is on is DARATUMUMAB which you can check out online if you are so inclined.  I am sure that we hadn't heard that word before.
The brand name drug being used is darzalex
Daratumumab (Darzalex) is an anti-cancer drug. It binds to CD38.^[1]Daratumumab was originally developed by Genmab, but it is now being jointly developed by Genmab along with the Johnson & Johnson subsidiary Janssen Biotech, which acquired worldwide commercialization rights to the drug from Genmab.^[2]

Multiple myeloma cells uniformly overexpress CD38. We studied daratumumab, a CD38-targeting, human IgG1κ monoclonal antibody.

In step with the darzalex Bob also needs to take a lower dose of dex.  Depending on results other chemo drugs may be added. In our heads we were hoping for no more chemo drugs.  Alas this is not the cure we thought it could be however there is always HOPE and it may be yet.  This dazalex was approved for use in Canada in Dec. 2015.  Our doctors are really pumped about it.  Success is pegged at 35-40%.  Pray with us that this will be successful for Bob.

This is a long haul treatment. All the treatments are in hospital with the lab work done a couple of days prior.  Once a week for 2mo. then every other week for 4mo. and then depending on results once a month.  It is actually very doable.    

Exploron Corp had extended Bob a short term disability which at Bob's age is unbelievable.  Dr. Bahlis filled out the forms today and put down that the term would be until Dec.  That is totally not reasonable for the company.  We are waiting to see what HR has to say and what the future holds with them.   

We have thought a lot about how today turned out.  It was not how we had imagined,misheard, or thought it was going to be.  We do know that God has cared for so many details in these past years that He will also walk with us and give direction for the future.

I am sorry that I got lead away on a rabbit trail and gave everyone wrong info. There is hope on the horizon and cures for cancer.  It will come and we are proud to say that Bob is part of that hunt.

The first week begins tomorrow April 21.  The first infusion time will be 10 hours (lunch is packed).