HOSPICE

The last day of November and the world is pretty much dark at 4:30pm.  Winter in Canada is cold, dark and makes me weary.  That is not only winter, but is also how I feel in my daily life: cold, dark and weary.  Bob has been in hospice two days and one night.

The idea of Bob, perhaps, having to go to hospice was something we had talked about.  My desire had been to have him at home until he went to be with Jesus.  Sadly that was not to be.  Bob was loosing the strength in his body.  His legs would just give out on him.  Bob had fallen a fair number of times and thankfully was never hurt badly.  We learned how to navigate in different ways together, then with a walker and then a wheelchair.  The day we were walking together ( I had learned how to have a good position and a good hold on him) we both went down together.  Fortunately neither of us were hurt and we did laugh but that sealed the decision.  Bob transitioned to a hospice.  It is a nice facility with kind, helpful people but it is not the same as home.  It is tough not to have some guilt, that I failed US.  Yet I know that he is safer with showers, going to the washroom etc etc.  As the first day unfolded, I felt the tension ebb away from me.  I was not responsible to have the pills ready at the right times, have a meal that was edible for Bob, make sure that there was water and all things ready and in place.  I was able to be with Bob and love on him with the responsibility left for others.  Yet, the evil one pokes away at my guilt about the responsibility that I gave up.  Pray that I will stand against it because Jesus is my all in all.

Bob is weary and if  we are alone he will sleep for a good percentage of the day and night.  His appetite is not great and he doesn't eat very much.  We have have talked about going to heaven. However, we are human and the hard part is leaving what we know; family, friends and places.  The day we left our condo for the hospice was incredibly difficult for me.  I kept thinking that he will not be back, he won't wear those shoes again, he won't use this elevator again, won't drive our vehicle and won't merge onto the Deerfoot again.  The reality and sadness of all of that made me incredibly emotional and broken.  This cancer journey has been long and often very rough.  Pray with me that Bob's journey will end soon and he will be home in heaven, where there is no pain, no sadness, no sorrow, no cancer.  Pray that the journey will end with Bob still having a twinkle in his eye, a smile and the ability to talk with us.  I love him so.  

The Lord, My Shepherd

"In Pastures green"?

Not always;Sometimes

He who knowest best,

in kindness leadeth me.

In weary ways, where shadows be.

And by "still waters"?

No, not always so; oftimes

the heavy tempests round me blow,

And o'er my soul the waves and billows go

But when the storm beats loudest,

and I cry aloud for help,

the Master standeth by,

And whispers to my soul, "Lo, it is I"

So where  he leads me, I can safely go.

And in the blest hereafter I shall know.

Why, in His wisdom, He hath led me so.

PUSHING ON in NOVEMBER

Bob has pancreatic cancer and cancer most likely at the top of the large bowel.  We didn't know what to do or how to journey on.  The myeloma was totally livable so why does Bob have to have another cancer?  I have all the accusations and fingers that I was ready to point  along with the harshest words I could muster.  However Bob says why?  We can't change anything and what good would it do?   Near the end of Oct. Bob was back in hospital.  This time on Unit 47 which is palliative cancer care ward.  Here the main objective was still pain control.  Bob was in 10 days.  When we left we were under the palliative care umbrella.  This meant being cut loose from Tom Baker Cancer Care.  That was super hard as Bob had been cared for by so many different people and professions for the past ten years.  In my mind I could picture an astronaut who is floating outside the space ship on the end of the long air hose.  Floating secure in what we know.  Then Pftttttt the hose is cut and you are on your own, nothing tangible to hold on to and wanting to be secure and cared for.  We do not have a relationship with the pain clinic.  Yikes!!!!!  We are done with the oncologists.  The reality was tough to deal with emotionally. 

In come the wonderful nurses of the palliative care team.  That is their calling to care for those who have terminal diseases or any other terminal situations.  It took me a while to be trusting and all in.  They come with computers logged in to history along with anything new done by our family doctor.  Our family doc is now the go to for everything.  The nurses have stethoscopes, bandages, creams, etc, etc.  They are well prepared and they come to us!!!!!  They spend time, at least an hour each visit.  Our nurse comes once a week but if needed would come more often.  They are on call 24/7 even on Christmas!!!  There is also a palliative doctor on call 24/7.  This group of nurses have truly proven themselves trustworthy and efficient.  Our regular nurse is Terri and she is impressive.  

The pain Bob has is pretty much well controlled.  He is on methadone with hydromorphon for break thru.  Bob is sleeping pretty much all the time.  He still easily walks around the condo.  He uses a walker for longer stints and often in the condo as well.  He is still showering on his own and uses a bath chair.  The idea of home care coming in to help him hasn't yet found a positive response.  Sadly Bob is eating very little but will drink Boost or Ensure.

Today we had a visit with our family doc to get all of Bob's prescriptions renewed.  The methadone has to come from the palliative doctor.  Anyhow Dr. G gave Bob 3 months supply.  Now that was hopeful and encouraging!!!!!!!

Corinthians 13:7  "Love never gives up, never loses faith, is always hopeful, and endures through every circumstance".

WAITING WAITING

The last couple of months seem long as  I was wanting to share but waiting until we had answers or news.  Right now it seems like I would prefer the waiting.

  We do have some of the answers to the pain Bob is having, which has been getting worse at an increasing speed.  We doctored a fair bit over the pain Bob was having.  Drugs for the stomach, a cortisone shot in his shoulder, increased morphine but nothing seemed to help.  The oncologist had a difficult time with the pain since the multiple myeloma was not active and there were no new lesions on the skeleton.  He told us that if the pain was more than Bob could bear to come to emergency at Foothills.  Dr. B had made urgent requests for scopes--top and bottom as well as an ultra sound and a MRI.  These appointments were still 2 weeks and more away.  We called and told Dr. B we were coming and he called down to emerg to have them watch for Bob.  Once you are admitted as a patient these tests come very quickly.  Bob stayed in hospital on the medical oncology ward for five days.
Bob had a biopsy done on the pancreas after some of the testing showed cysts and folds on the pancreas, and not sure how they see in.  Maybe shadows??  We went home and had to wait to hear the results.   We received preliminary results but our oncologist was determined to not say anything conclusive until the pathology came in.  On Sept 21, Dr. B. called late in the afternoon to tell us there is a malignant mass in the pancreas.  He is not calling it pancreatic cancer since the biopsy sample was small????  Since then we have learnt a few more things, that at this point are not substantiated.

I have to say the weekend was tough.  Trying to get our heads around this news and Bob still having pain and trying to work things out with the folks at the pain clinic.

         It's alright-------questions, pain and stabbing anger can be       poured out to
              the Infinite One and He will not be damaged.
          Our wounded ragings will be lost in Him and we will be     found.
               For we beat on His chest from within the circle of His arms. 

 from a little book entitled  When Life Takes what Matters by Susan Lenzkes

Tomorrow Sept. 27 we head back to Tom Baker to see a, new to us, doctor,  Dr. Sutherland.  This is for a consultation.  What or if anything can be done?  Dr. Bahlis gave this doctor 5stars, Dr.  Farrah gave him a thumbs up and Dr. Google was also most positive.

As we talked with Dr. B today he said some extraordinary things.  We have to believe that God was saying 'I am here and I am still walking with you." Scripture says: "I will never fail you.  I will never abandon you."NLT  Dr.Bahlis began to tell us that he prays for us, that no one can understand why these things happen.  He told us God cares and one day we will all understand.  As the tears rolled down my cheeks he handed me a tissue and he cared.  Bob said "that man knows where his Power comes from.' 
            Waiting to see how the battle will unfold.

CANCER CARE JULY, 2018

On the 4th of July we made our way to Tom Baker Cancer Centre to see Bob's oncologist.
   An aside:

 Have to say the new parking structure is getting closer to being done.  Someone said in the fall yahooo!!!  The tension, as the many cars drove round and round and in and out, was sure building that day.  Not only mine!!!  Soon there will be an uprising of parkees!!!  PLUS the new cancer centre is very much under construction.  The hole is mega and now concrete is going into that hole.  I presume that will be for more PARKING under the new centre.

Our meeting with Dr. B. was once again very encouraging.  The cancer marker numbers are great.  The protein chain is a bit higher but still amazing.  After checking out Bob's shoulder really well, Dr. B did not believe it to be bone pain from the cancer.  However Bob had an xray plus an MRI and his yearly PET scan are being ordered.  It has come down to thinking that the shoulder pain could be from the way Bob has been using his cane.  Now the cane and I are changing sides.  Bob is often unsteady on his feet so needs to have the cane but perhaps not lean into it all the time.  That has become a habit.
We shall see how changing things up works out.  Status quo as far as the chemo continuing.  Bob will have an extra week off this time as we take some time away from Calgary.  He wont be seeing the oncologist again until the week of Aug. 8.

Generally Bob is feeling not to bad.  He is tired and does nap several times through out the day.  Bob has low strength but I did notice he was walking much faster the last time we were out.  Bob is my super cheerleader as I undertake some new things---again!!!

This update is to say Bob is doing ok and staying positive, as he has always been, throughout this decade.  We are grateful of the hope we have through Jesus,that what we see here is not our home.  We are being prepared to be home with Jesus.  The older we get the more urgent it seems to let people know they need Jesus.  You will have nothing to loose and everything to gain.

JULY 2018

July is a neat month for us.  I especially look at July fondly.  It is the month in which Bob and I were married.  As I think about it we knew so little about planning the event and what went into it!!!  We now know that weddings can be made to be so much more meaningful and look so spectacular and exotic and epic!!!! All we knew was that we wanted to be married and be together forever.  (Ahhh how romantic) . AND so it happened, planned and directed mostly by others but what did it matter!!!  That has now been 48 years ago!!!!  We always thought anyone married more than 25 years was elderly, that was of course, until we celebrated our 25th.  We moved to Calgary as we celebrated our 35th wedding anniversary.  Still so young and totally gungho to be involved with our family here in Calgary and all things Calgary.  This was what we dubbed our Freedom 55 year.  Anniversary 40 happened several years after Bob's diagnosis of cancer.  We were so blessed to celebrate that year.  WOW.  Each year following has been an exceptional gift to us.  No matter what the year held at Tom Baker Cancer Centre we have had July.  Here in this month, we are once again those wide eyed young adults stepping into life together.  Fearless because we have each other and were totally in love.  Since that wedding day we have accepted Jesus into our lives as our personal Savior and have followed Him through reading His Word in the bible and through the teaching of godly men in bible believing churches.  We honestly, remind each other that we would not have survived these 48 years of marriage without God in our lives each day.  It has been an amazing learning curve to follow Jesus, to trust Him and look to Him each day.  Amazing to know the answers to prayer.  Prayers large and small.  Each of us, with faith in Jesus, know that it is our own personal surrender to Him.  Our family does not have eternal life because Bob and I have faith in Jesus.  Each of them need to accept faith in Jesus as their own.  Where will you spend eternity?  I will spend eternity in heaven with Jesus.  Bob and I will both be there and no matter how many Julys we celebrate together on earth, eternity is forever.  Coming?????

A DECADE=TEN YEARS

Soooo we are into a month of no cancer.  This was confirmed by the testing done this past week.  The protein free light chain was unchanged.  The monoclonal #1  was at .5 a month ago and was not tested or the test had not come back by our May 30 appointment.  All the folks we are in contact with at Tom Baker were excited and happy for Bob.  I believe that even Dr. B is in awe of this.  He won't call it remission until several more months have passed.  One thing he said was "that I will never give up on a patient".  Then added "don't take that the wrong way".  We will let you interpret that however you desire.  

So Bob has fought tooth and nail for a decade.  I was thinking about some of the things that happened in the past decade.  Our son was married to Cori, we went to Arizona, grandkids graduated and others left school.  We were blessed with four more grandkids, the oldest is now 9.  We moved from a house to a condo.  I left my job at the preschool at stem cell transplant time.  Bob retired and was honoured by the company.  We had at least 4 different vehicles.  We took 3 kids on a trip to BC.  We made several trips to Niagara Falls.  Bob's dad passed away.  We also had several friends and relatives pass away.  We went on a helicopter ride over the Falls.  Lots of life going on in a decade.  Think about what happened in your life this past decade.

As we try and understand what a real remission means we are at a loss.  Don't get me wrong we are totally thankful and praise our Lord for His great mercy to Bob.  Bob's physical body is dealing with the ravages of this fight.  Dr. B has said that it could take up to a year for the bones to BEGIN to repair themselves as the cells needed for repair are hiding.?????  Naturally there may be holes that never heal.  Bob's spine has also been affected.  All that to say Bob does not really feel any different today than he did 30 days ago.  The first adrenalin surge has passed.  I think we thought we could go back to precancer and Bob would be able to do everything and anything.  So we will take this day by day.  We trust God for each day and what He has for us each day.  We pray that we can serve and will be able to know what that looks like.  Then take each month as it comes and trust remission would be a real word in our vocabulary.

Bob is still on the 3 chemo treatments.  Altho Dr. B thought one extra week off is great idea.  I think the doc doesn't want to stop treatments yet.  The what ifs pop back in and why perhaps allow the cancer to start again?  Would it?

This is a new trail on this cancer road and we will be learning how to navigate it. Trusting God to show the way.  Psalm 119:105--Your word is a lamp to my feet and a light for my path.  

CEASE FIRE

Our monthly trip to the oncologist on May 2 turned out different from the norm.  The kappa free was at 1.19 and the lambda free was less that 1.40 which made the free ratio to be less than .85.  This protein free chain is what the doc follows to check on where the cancer levels are.  Bob basically has no active cancer at this point.  Blew me over, well, Bob too.  Dr. Bahlis showed us the graph and seeing that downward arrow was amazing.  We didn't know what to do with this news.  The battle with this cancer has been 10 years minus 2 months.  Is this cease fire for real?  We seem to be on hold waiting for the other shoe to drop.  The first thing Dr. Bahlis did was stop the oral drug cyclophosphomate.  This is the one we think gives Bob the most side affects.  He is still on two oral chem drugs--pomolyst every day, dex once a week and the once a month infusion of darzalex. He had that infusion last Thurs.

We are thrilled with Dr. Bahlis who is not only Bob's oncologist but a cutting edge researcher on multiple myeloma.  God used Dr. B's procedures and expertize to get to this point.  The Lord also used the radiation from mid March to destroy cancer cells.  

This weekend I could see a difference.  He didn't sleep as much and had more energy.  We went to church at the church.  We weren't part of the FB church this week.  Bob barbecued at noon.  Mike and his family were here.  Bob went to the playground with the kids and still did not have a nap.  

Imagine what you see on a battlefield when a cease fire is called.  In my mind I see black scorched land, helmets strewn about, weapons left helter skelter, burned out vehicles.  Some things can never be the same.  In Bob's cease fire I see 3 larger sizes of jeans, masks,bandages and tape, a huge mountain of pill bottles, hospital beds, a stroke, paramedics, a clam shell from back surgery, patches of pain meds, the smell of the transplant, isolation, tremors, MRIs, PETs, CTs and volunteers bringing a drink and a snack in a waiting room.  Bob's body will never be the same.  On May 10 we go to see a surgeon.  The tumors in the neck have shrunk but still seem to concern Dr. B.  Bob gets an xray and then we see the surgeon.
There isn't any myeloma in the skull for which we are most thankful.  The following is s short quote from the neuroradiologist: " Redemonstrated are osseous lesions lesions at C3 and T1 compatible with known myeloma with slight progressive vertebra body height loss at C3.  There is slight improvement in previous mild cord compression at the C3 level.  no new focus of osseous metastatic disease.  No new regions of cord compression."  The cord suppression is what is concerning as it could cause paralysis.  The radiation has helped that situation, we believe.  

Thankful for the snot getting knocked out of the cancer.  Doing our best to grab hold of the cease fire and enjoy the pause.

DOMINOES

The game of dominoes that I play with Bob is fairly relaxed.  We go about matching the dots at a fairly even pace but with the anticipation that one of us will not be able to make a play and who will that be?  With just the two of us playing, the game can go on for a bit and we become comfortable with the play.  Once in awhile we have stood the dominoes on edge and did the little swirl and then touched the first one and watched them fall one after the other in a neat row even around the swirl.

Today is Wed. and already we have seen a live game of dominoes take place this week.  We were becoming somewhat comfortable with Bob's health.  Nothing new was happening as far as the cancer went.  The dots were matching up. Perhaps we were a bit frustrated as even tho the dots matched we weren't really winning either.  Last week Bob had an MRI done of his neck and upper spine.  On Friday Bob's oncologist called saying he would like to go over the results with us.  This was somewhat unusual as he always did that sort of thing at the scheduled appointments.  We met with Dr. Bahlis and all of a sudden the game changed.  We have a picture of the MRI and are able to clearly see what has happened and understand what we were told. I will quote-more or less--from the findings: Destructive lesions are again demonstrated at C3 and C7 progressed as compared to previous, pathological fracture at C3 with approx two thirds loss of height, retropulsion and epidural tumor, eccentric to the left resulting in mild cord compression,  pathological fracture at C7 at approx 25% loss of height anteriorly and extending into the anterior epidural space on the right effacing the thecal sac and slightly flattening the anterolateral cord without evidence of cord suppression.  Mild disc disease is noted at multiple levels.  There are some other notes but the above notes were what put the upright dominoes into play.  Lab work, wait to see the oncologist radiologist, this doc is straight forward, 'we do radiation on those two sites, cord compression will lead to paralysis", then to radiation department, CT scan, then the marks for radiation, mask made to keep the head from moving during treatment and at 5:15 the first radiation treatment. That is a lot of falling dominoes over a short period of time.  Today Bob was back for the second radiation treatment.  There will be 5 all together.

Our oncologist also talked about surgery at the C3 point.  Everything will be re-evaluated once radiation is complete.  Unless notified differently our next appointment is the 28th.  Having a collar for Bob seemed to be something both docs mentioned but that was as far as that went.  Bob was told to be careful with no sudden movements or head jerks?????  Tomorrow we see the oncology radiologist before radiation and will ask him about a collar and how to go about getting one.  The collar is Barbie's biggest concern what with all the pot holes etc.  Amazing, one day we don't know and continue on with life and then freak out the next because we do know.

We are thankful for friends who are taking Bob to radiation and to our family for their prayers and continuing source of information!!!!!  We are thankful for the medical people and the actions they take to deal with Bob's cancer.  Should you be one who prays please pray for much wisdom for these doctors and all the medical teams.  Pray for our mental health, our physical health and our spiritual health.  Pray that we will not doubt that God is still on the throne of our lives.

February 2018-----Happy Valenines Day

We, as Canadians, make a big deal out of Valentines Day.  Show those you love how special they are.  Chocolate, lots of chocolate, roses, hearts and a sea of red and pink are to be part of the celebration.  Yesterday we gave our three youngest grandkids their valentine treat.  They had no clue what these heart shaped boxes of chocolate were.  I gave them hints:  did your teacher tell you about cutting out heart shapes, did you buy valentine cards to give to your friends?  Nik, being very perceptive says is it about girls?  Yeah, kinda.    So each of you, get with the programme and let those you love know it!!!!

In Sept Bob had radiation on his spine and since that time he has not had the horrid pain in his hip or back.  That has now been five months of celebrating Valentines day.  He only takes small amounts of opiates and has functioned at his new normal pace.  Bob was even able to do two pieces of glass.  He had given that up, so being able to do the glass was a positive.  He has been able to drive wherever we went.  Bob drove himself to his last infusion.  For me this time has been me not being on the edge of the cliff, being able to breath.

The last two visits to the oncologist have shown the cancer markers going up.  Don't get me wrong they only went up a wee bit and all the med people celebrated how great Bob is doing.  All I can see is the graph going the other way.  I guess I am a glass half empty person.  Bob has been sleeping so much more and not getting up for night snacks, sleeping until like ten am.  He has now started to have pain again in his back and hips.  I hate it!!!!  It means more pain med, new drugs, chances of all past events happening again.  Today I have lost my grip, the anchor is slipping and I am afraid.  This is not who I have been and I struggle with it.

Please pray that the pain in Bob will not get worse.  Pray that I can do this with the Lord holding onto both of us.  Pray that God's love that is with us every day will shine through us to our world.