A Bend in the Road

     The Myeloma cancer became active again since the last chemo treatment in March. The doctors feel it is necessary to do more chemo to get the cancer back into remission before they do the stem cell transplant.  It will have a much greater chance of succeeding.
     So, here is the plan, at least for the next month!  Don was admitted Monday morning to UH for 4 days of 24 hour round-the-clock drip chemo.  This regimen will be tougher than previous ones.  The doctors hope that this will put the cancer back into remission.  After this 4 days, he will have 3 weeks off.  Then, they will check "the numbers" and see where the cancer is - hopefully, in remission!  At that time they will plan again when the stem cell transplant will take place.  If the cancer is not inremission, they will do another 4 days on - 3 weeks off regimen of chemo.  So, the journey continues through the summer. Otherwise we begin the transplant at the beginning of July!
     This has reminded Don of a story he heard about Central Park in New York City and Chautauqua Conference Center in Western NY .  The architect of the roads in both parks, Frederick Law Olmsted designed them in such a way that one cannot see more than 1/4 of a mile ahead without continuing to walk along the road that is before you. So, we are going to continue on this road before us, around the bend, and keep going until we see the end.
     As you read Genesis 12:1-9 we see that Abram (Abraham) was simply told to leave where he was; his comfort zone.  He finally arrived in the land of Canaan and set up a camp and simply trusted God for his future.  You may be going through a period in your life where you have left the familiar but cannot see what is ahead.  Marcie and I are in that place right now.  Let's agree to trust the God of our past and the God of our future to abundantly meet all of the needs of our present. 
     
We have lots of specific prayer requests this week.  Please pray that...

• This chemo will be effective, putting the cancer in remission and getting us back on track for the stem cell transplant.
• That there would be little, if any, negative side effects from the chemo.
• That there would not be any more blood clots.  (Likelihood of having another is increased since Don had the one in his neck.)
• That he would not get an infection.
• That he would get relief from the pain in his right hip and leg. 

Praise for:

• All of the nursing staff who have been so wonderful!  Especially for a young lady who is a believer  and knows many of the same friends we do at CCC.
• Good communication so far this week with medical personnel.  
• A room being available for Marcie at Hope Lodge.
• An excellent, qualified Spanish teacher to cover Marcie's classes this week. 
• Continued support in innumerable ways from family and friends.
• The stem cell collection has been successfully completed and will be ready for the transplant.

We'll keep you updated as we continue forward around this bend in the road.  Thanks for being on this journey with us.

Love,
Don and Marcie

PS - Approximately 11 hours of chemo completed and so far no side effects!  Keep praying!

HAIR TODAY...AND GONE TOMORROW!

Dear Friends,

     Marcie and I wanted to give you an update on the latest events in our unexpected journey. It is even more fraught with "hair-raising" twists and turns than you can imagine!

     The "Chemo-Hair-Apy" party on Friday night was a a blast and a huge success.  We are still awaiting final numbers but we believe we exceeded the goal of $2,500 in funds raised for Emerge's Children's Center.  So many dear friends came and really got into the whole funky hairdo thing; there were some wild and crazy "do's."  We think a lot of  you really enjoyed releasing the inner child.  We do have a therapist on staff to deal with that!   Our friend Rob Ebner has a new (dis)taste of whipped cream as he was the chief victim of the pie throwing event!  What a good sport he was!  How can we begin to thank all of those who worked so hard to put everything together into such a memorable event?  Our deepest thanks to all of you.  For more pictures of the great buzz go to my sister's blog http://lifebetweenthebuns.blogspot.com/

     On Thursday of last week I noticed a small lump in my neck above the place where the catheter is on my upper chest.  It was tender to the touch, but I really thought nothing of it, although I mentioned it to the home health care nurse who came to clean the catheter on Friday morning.  By Saturday evening the lump had grown significantly and it hurt to touch and move my neck.  After consulting with the home health care nurse by phone, we followed the recommendation to go to the emergency room at Western Reserve Hospital (Cuyahoga Falls) about 11:00 Saturday night.  They did a CT scan and discovered a blood clot that was approximately 7-8 centimeters long.  Since it was related to the catheter, which had been installed by University Hospital, I was sent by ambulance to UH about 5:00 Sunday morning.  I felt quite miserable all day Sunday.  After more tests, an ultrasound and consultations with many doctors it was decided to treat the clot with Heparin.  It has been successful, slowly dissolving the clot.  The danger, of course, was that the clot would break off and cause a stroke or a pulmonary embolism, so we are very, very thankful to the Lord for protecting me and getting the right treatment in time.  I will have to be on blood thinner for the next couple of months.  Marcie has been able to stay with me here at UH, so we are comforting and encouraging each other and looking to the Lord for strength.
  

      As of now, we enjoy a great view of Cleveland's skyline from the 4th floor of the Seidman Cancer Center.  We will know by tomorrow whether my long term stay for the bone marrow transplant will be delayed.  In the meantime, we thank you for your love, prayers and the help you have given in so many ways.

SPECIFIC PRAYERS REQUESTS:

• For a resolution as to the timing of the bone marrow transplant.  We had geared ourselves up emotionally for me to go into the hospital May 7th and get it over with.  It will be a challenge to our spirits if we have to delay it.
• Many doctors have been called in to consult on my case; even a new expert in the field of Multiple Myeloma, whom we will meet with tomorrow.  This doctor will have a significant impact on how my treatment moves forward.  Please pray that we are able to communicate well with each other and that God would direct this doctor's knowledge and thoughts as to the best course of treatment.
• Pray for the nurses and other caregivers who serve cancer patients.  What a blessing they are and how well they serve people! 
• Pray for the opportunity to share Christ with all of these fine caregivers.
• Pray a blessing on family and friends who have been and continue to help and serve us in so many practical ways.

Much love, Don and Marcie

A LITTLE BIT OF GOOD NEWS!

     We arrived at the donor collection center on time at 7:30 a.m.  Don was hooked up via the catheter in his chest to the stem cell collection machine.  It is an amazing process - who thinks up these things?  You can actually see the different parts of the blood being separated!  TMI, right?
     He was there for over 5 hours including all the prep time and post-collection processing.  The pain in his hip was as severe as it has ever been.  A very rough day.  Throughout the collection process they kept saying they were getting good results and most likely he would only have to come back for one more day.  The attending doctor said it is very rare to collect enough stem cells in one day - that Don would be a "Rock Star" if he did that.  Well, guess what?  They called at about 3:30 this afternoon saying they had gotten enough!  Whoopee!  What a relief!  No more shots in the tummy and we get to go home tomorrow!  Thank you, Lord!

AND SO IT BEGINS...

     Greetings from a hotel near the Cleveland Clinic and University Hospitals.  We arrived last night and checked in to a hotel.  (Our name had not been placed on the waiting list for Hope Lodge, thus the hotel.)
     Don has been faithfully giving himself the neupogen shots since Friday to stimulate stem cell growth.  Early this morning we showed up at the Seidman Cancer Center and the central catheter was placed in Don's chest.  He had to lay on his back on a table for a little over an hour and his hips were hurting very badly throughout the procedure.  But he got through it and we came back to the hotel to rest.  Back to Seidman again at 5:30 for a different kind of shot.  Don has been feeling quite nauseous all day and his hip is still hurting.  Finally, at about 7:00 this evening, he has begun to get some relief and was able to eat a little bit. 
     Tomorrow morning we have to be at the Donor Center at 7:30 a.m. and they will begin the stem cell collection.  Please pray that all would go well and they will be able to collect a significant amount of stem cells.  It is unusual to get enough in one day, but it has happened.  Please pray that Don will get some longer lasting relief from the pain in his hip and the nausea. 
     Thank you for your prayers.  Please continue to hold us up before the Lord, dear family and friends.  Reality about what Don will have to go through this week and then staring May 7th for the actual transplant is hitting us hard. 
Much love, Marcie and Don

COMMITMENT, CHEMO-HAIR-APY AND A CATHETER

FOR BETTER OR FOR WORSE...
     Today is our 41st wedding anniversary!  We ask ourselves how can that be possible? Time has a way of flying by, but it is great to know that God is the pilot!  We thank God for each other and for the years He has given us.  When you marry one another you form a covenant relationship.  That's why what you say to one another during the wedding ceremony is called a vow.   Part of that covenant is the promise to commit to one another for better or worse, richer or poorer, in sickness or in health until...Of course, all of us want "the better, the richer and the health" but that is not guaranteed to any of us.  Hence the value of making a covenant before God and man that will sustain you in the difficult days.

HOME STRETCH TO THE HOSPITAL ...

     We suspect things will be happening very quickly now. This Thursday we will be up at UH most of the morning for our orientation.  We will meet with the financial representative of UH and also tour the donor collection center where Don's stem cells will actually be collected. Friday he will be shown how to give himself injections that stimulate the production of stem cells.  Sunday night we will go up and spend the night near the hospital, then they will install the catheter in his chest early Monday morning.  Either Monday afternoon or Tuesday they will begin the process of extracting the stem cells.  We are both nervous but ready to get on with it.  The process will take 3 or 4 days and once they have enough stem cells (they are collecting enough for 2 transplants in case he should need another one in the future) he will be able to come home.  He will have another 2 weeks during which he hopes to continue to work at Emerge before entering the hospital again on the 7th of May. 

SOMETHING FUN...CHEMO-HAIR-APY!

     Rather than wait to lose his hair at the hospital, Don has decided to buzz it before entering the hospital for the transplant.  We have been told he will receive a major dose of chemotherapy at the beginning, from which he will likely suffer all of the negative side effects, including hair loss.  So, on Friday, April 27th from 6:00 to 7:30 p.m. we are having a Chemo-HAIR-apy Party at Emerge Ministries to help raise funds for Emerge's Children's Center.  Everyone is invited to come for refreshments and fun and to watch Don get buzzed.   If you come, you need to do something funky with your own hair and bring a donation for the Children's Center.  You can look at Emerge's website (www.emerge.org)  for specific items that are needed, or you can simply bring a donation in the form of cash or a check.  

PRAISES:

     Friends and family continue to lift us up before the Lord and support us in all manner of ways - spiritually, emotionally, physically and financially.  We have been incredibly blessed by you - our family of believers.
     All of our needs have been and continue to be met.
     God continues to make Himself known in special moments.
     All of the details and plans for the stem cell extraction and stem cell transplant are moving forward.

PRAYER REQUESTS:

     Don's pain has been steadily getting worse for the last 2 weeks and is now getting to be a serious challenge again.  It has shifted to his right hip and is intense when he is in any upright position.  We believe it is because the doctors have reduced the steroid until he is not taking any at all now.  The steroid is what kept the swelling and inflammation down around the L5 vertebrae.  The pain specialists have told us that they cannot do any more until after the transplant and Don's immune system has recovered.
     Don's dear Uncle John in Maryland is also suffering from cancer and a compression fracture.  What a tremendous man of God he has been all of his life!  An example to us in every way.  Hospice care has been brought in to help care for him until he goes on to meet the Lord he has served all of his life.  What a day that will be!  Please pray for Uncle John, who is also enduring great pain, and his wife Olga and family.
     Pray for our meetings at UH on Thursday that we would be able to communicate effectively with doctors and nurses and they would communicate effectively with us.  Also that all the details for each procedure would continue to go smoothly.
     Pray for Don as he undergoes the catheter installation and stem cell extraction next week.

SOMETHING PRECIOUS TO DON:
     "Thank Me for the conditions that are requiring you to be still.   Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again.  Some of the greatest works in My kingdom have been done from sickbeds and prison cells.  Instead of resenting the limitations of a weakened body, search for My way in the midst of these very circumstances.  Limitations can be liberating when your strongest desire is living close to Me."
     "Quietness and trust enhance your awareness of My Presence with you.  Do not despise these simple ways of serving Me.  Although you feel cut off from the activity of the world, your quiet trust makes a powerful statement in spiritual realms.  My Strength and Power show themselves most effective in weakness."  from Jesus Calling (February 16th)

SOMETHING PRECIOUS TO MARCIE:
     "Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name.  He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him and show him my salvation." Psalm 91: 14 - 16

As we progress through the stem cell extraction next week I will keep you updated as often as possible.  Please pray earnestly for us both and our children Anthony, Adam and Anne.
Thank you for your love and prayers.

Marcie and Don
    

 

     

  

What's Next?

     Don has completed most of the testing for his major organs this week in preparation for the stem cell transplant.  Also, he had about 4 days this week with very little pain! 

     We have tentative dates for both the stem cell collection and the stem cell transplant.  If all continues to go well, he will begin receiving shots on April 13th at home that will stimulate his system to produce more stem cells. Then he will go into University Hospital on April 16th and will be in for 3 to 5 days as they collect his stem cells.  They need 10 million stem cells per kilo of his weight, so that is a lot!  Beginning on Monday, they will place a "port" in his chest, which will be in for quite a long time, even after the transplant.  Tuesday and Wednesday they will collect stem cells, a process which will take about 5 hours a day.  At the end of Wednesday, if they have collected enough, they will let him come home.  If they still need more, he will stay one or possibly 2 more days.  They are going to try to collect enough for 2 transplants in case he needs another one in the future. His stem cells will be frozen until needed.

     He will have approximately 2 weeks off after that, then enter the hospital for the stem cell transplant on May 7th.  He will be in the hospital anywhere from 3 to 5 weeks. 

On May 8th he will receive the most toxic chemo so far, and he will most likely suffer all of the negative side effects - hair loss, nausea, etc.  But they have assured us they are prepared for all of these and will take care of him.  The actual transplant will take place on May 9th.  It is kind of anticlimactic as the stem cells are simply given to him through the port and it only takes about 45 minutes. The second full week of his stay will be the hard week, as that is when all of the negative side effects will hit.  

      Once they have determined he is doing well enough, perhaps after the second full week, he will be released from the hospital and moved over to Hope Lodge where he will stay until he is well enough to come home.

     We feel this sort of "looming" over us, and I think we both just want it to be over with.  It is an amazing miracle, what stem cells can do, but it is not going to be a pleasant experience for Don.   He will most likely be off work all of June and perhaps July as he recovers.  They tell us fatigue will be a major factor in the recovery process.  They also said they have never had anyone go back to work in under 2 months.  I am actually looking forward to his recovery during the summer months as it will be the first summer we have had off together in many years!

Praises:
     For God's extraordinary intervention in our lives on a daily basis.

     Don had 4 really, really good days past week - the least amount of pain he has had in several months.  It was back with a vengeance on  Tuesday night, but we were thankful for these times when he is pretty much pain free.

     Other than the pain in his hips, Don continues to feel pretty good.  He is working at least 5 hours a day and is able to make it to a few meetings. 

     Friends and family have been so gracious in taking him to appointments and to work!  We thank God for every one of you!

     We are assured of God's continued presence and help in this trial as He continues to manifest Himself to us through people and circumstances (God moments).

     We are so blessed by the cards we receive and the many people who continue to pray for us.

Prayer Requests:

     That Don and I would face the long hospital stay and all that it entails physically, mentally and emotionally with courage,  peace and mutual strength.

     That the myriad of details and tests and procedures that need to be scheduled and completed will go smoothly.

    That times of being without pain would become the norm rather than the exception.
     That the swelling caused by the steroids would dissipate quickly.  

Thank you everyone for your continued interest in our journey; the way that you uphold us in your prayers and care for us in so many ways.
Love,
Don and Marcie

     

 

Getting closer...

Dear family and friends,
     This will be a brief update from Marcie again this week.  We received very encouraging news from our local oncologist this past week - Don's numbers are under a "1" for the first time!  This means that the cancer is shrinking and he is moving in the right direction to be ready for the stem cell transplant!  We give thanks to our heavenly Father and to all of you for your prayers.  We wish somehow we could know how many prayers are being sent to the Father on Don's behalf - I'm sure they would number in the thousands! They are obviously having a great effect!
     He finished round 5 of the intravenous chemotherapy, and no more is scheduled of that for now.  He will finish round 2 of the Revlimid chemotherapy drug he takes by mouth on March 13.  We have an appointment with our University Hospital oncologist this Wednesday and we are hoping that he will give us some firmer dates for the stem cell collection and the actual stem cell transplant.
     One of the next things in the process is for testing to be done on all of Don's major organs - heart, lungs, liver, kidneys, etc. to make sure they are strong enough for the stem cell transplant.  I would imagine that will be taking place sometime in the next month.Please pray that God will strengthen these vital organs.
     Don continues to work at least 5 hours a day - sometimes they are turning into longer days with meetings, etc.  He loves being able to continue with his work and ministry.
     We were surprised and excited to realize that the newspaper article in the Akron Beacon Journal was picked up by many other newspapers around the country.  It has appeared in Washington state, Idaho, Florida, Canada, California and many more.  We have received several phone calls and letters from people who read the article and were encouraged by it or have endured Multiple Myeloma themselves and wanted to encourage us!  It has been very interesting to hear people's stories.  Don will share more about them when he has time to write a longer post.
     Please pray for us as we get closer to the next couple of hurdles - the testing of major organs and the stem cell collection itself.  Pray that everything would go smoothly so that there will be no delays in scheduling the transplant.  But we also pray that God's hand would be in the timing of everything. 
     Don's pain has become more intense in the hips - it is usually quite acute in the morning and evening.  We are thankful it is only during those times because this gives him several hours during the day when he is at work that are relatively pain free.  However, it does make mornings and evenings hard to get through. I have so much more empathy for people who live with chronic pain - some who have even lived with it for years.
    Don will write soon - most likely after our appointment on Wednesday when we hope to learn more information.  Until then,  grace and peace be to you all.
     Love, Marcie and Don