Final Post

I have been putting this off, but I feel the time has finally arrived. This will be the final post for Blaine's Progress. I am no longer able to track that, others in another place will. I know he is doing well. I will leave this post up for 2-3 weeks for people who would like to comment to do so.

How are we? There are surely days and parts of days that are hard, and we grieve, but we are handling things. We are moving forward, not moving on. We will not move on from him, ever, but we will move forward. He is eternally part of us.

-Dani is back in school, still loves BYU, has great friends and a good apartment with good roommates who have chosen to room together, taking a basketball class with half of the BYU football team. Hmmmmm.... She has worked hard this last year, paying off a good chunk of her student loans from her earnings. She is moving forward towards her degree. She makes us proud.

-Josh is getting to know Laie, Hawaii as a new freshman at BYU-Hawaii. Today is the last day of orientation and classes start tomorrow. He has made incredible choices this past year and done everything we have asked him to do. He put the family's needs ahead of his own several times, sacrificing things he had worked hard for. He will now, we hope, gain some of those things in Hawaii. We are also very proud of Joshua.

-Alexis continues to choose well, keeping a great circle of friends as close as she can while attending early morning seminary and working in her classes. She looks forward to Basketball season, and will benefit from her now 5'10" frame. She sings in the Advanced Ladies Choir which she enjoys very much, and for whom there is a fabulous director. She finds ways of offering small acts of service that help others. She is a joy and a delight to me. I am proud of Alexis Leigh.

-Kyle has done very well also. I am very proud of the growth and development I see in him. Yesterday I looked outside and Kyle was mowing the lawn. With no prompting from anyone! (Insert angels singing.) He has gained confidence and self esteem, and is enjoying his scout troop and friends. He also looks forward to basketball. I am pleased with, and proud of Kyle.

-Marleigh is teaching music part time at Heber Valley Elementary School as well as teaching private voice, and taking a class at BYU. Yes, we are busy.

Our household make up has changed drastically. It went from six people, to five, to six again this summer, to suddenly three: Alexis, Kyle and I (and Jarah, our golden retriever). I hardly know how to cook for so few! We are learning. My children find it very weird to be part of a one parent home, but we are managing that just fine. They are helpful and kind to me, and mostly to each other. We spent the weekend together in Jackson, Togwotee and Yellowstone Wyoming, in honor of where Blaine and I spent the first part of our honeymoon. It was wonderful. We continue to find joy in each other's company, and seek it first and foremost.

I need to tell you a bit more about who my husband is, not was! He still lives, just in another sphere. He is full of faith in Christ. He was prepared to meet his God, and I am sure did so with joy, and perhaps relief to no longer have to suffer, for suffer he did. He bore cancer with such dignity. He lived his life as my husband and our children's father so very well. I cannot express my pride in him, and the joy I have to be his wife. I am so very proud to call him my husband.
He taught me to be steady in my emotions. He taught me to stand still when all around me was in turmoil. That turmoil never had to reach inside. He showed us how to bear things with dignity and grace, and not just cancer. He had the faith to be patient while things worked out, or didn't, while he stood on solid ground, even when his surroundings were not so solid. He stood still and held firm.

Hel. 5: 12 (Book of Mormon)
12 And now, my sons, remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall.

He lived this injunction. He helped me to live it better, and we pass it on to our children with the hope that they will continue to live it in the excellent manner they have chosen. Blaine built his personal house on the rock of his redeemer, Jesus Christ. The success we have had, and I feel like we have had much of it, is because of that sure foundation. We move forward, continuing to put our faith, hope and trust in our loving Heavenly Father who is the God of life. We put our selves in His loving hands, knowing that He knows how to do His work, and that He does it perfectly. In matters of life and moving beyond this life to the next one, He does not make mistakes. Though I miss Blaine terribly now, I can't wait for the day when I get to rush up to him and throw my arms around him. I look forward to that day with joy, and know that this life still holds much joy for the Blaine and Marleigh Savage family. We are grateful to have shared this part of our journey with you, and look forward to keeping in touch we hope, with so many. God Bless, and take care.



Blaine and his sister, Shauna, one of his life time best friends

Weeks before our wedding

Engagement photo


Dani's blessing day

Joshua's birthday

Alexis, just days old

Kyle at one year

The four amigos


Alexis



Alexis

NH family

Heber vacation

Portland, Maine

Boston, Mass, Freedon Trail

Maine again

Acworth winter!

Bishop Savage and his counselors, Paul Liberty and Daryl Hodgins

Memorial Information

John 14: 27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you.

I copied this scripture because it is what I have been feeling since Blaine was interred in Bicknell, Utah. I cannot describe the sense of peace and serenity I have with all that has happened in the last year and a half. Though it has been exceedingly difficult and he suffered much, he is at peace, at rest. Everything was done that could be, including vitamin and herb supplements, careful diet, and the medical community's level best efforts. Nothing was left untried. He was able to spend his last year in his Utah home which he loved, surrounded by his family, including extended family. Though the kids and I are very sad and miss him tremendously, the peace that surpasseth all understanding remains. It's quite a mix, and one I am grateful for. I think I will be closing this blog soon, but will wait for the final post until after his memorial with family in New England, the beloved Ascutney ward (which is very much family), and any others who wish to participate. Though we will not be there in person, we will have an audio feed so we can hear everything. Until then.

Marleigh

When: 6:00 PM Sunday, August 22
Where: Ascutney Chapel, The Church of Jesus Christ of Latter Day Saints
Who: All are welcome and appreciated
Dress: Sunday best

Directions from 91
Exit 8, towards town (right off ramp from south, left from north)
Left at light onto route 5, towards Windsor
1/4 mile on right, brick chapel set back from the road

Directions to Funeral

Directions to Blaine's services at the LDS Chapel located on 2395 South Mill Road in Heber City, UT (1200 East Mill Road)

From Salt Lake:
I-80 East through Parley's Canyon to Park City
40 East (right exit)to Heber City (follwo signs that say Heber City)
Stay on 40 through town, through all lights (5 or 6) past hospital,
Take a left onto Center Creek Road (just after Log Works)
Chapel will be on the left, about a 1/4 of a mile

From Provo:
Take Provo Canyon (Route 89 East)
End at light in Heber City (about 1/2 hour)
Turn Right, go about 1 mile
Left onto Center Creek Road (just after Log Works)
Chapel will be on the left, about a 1/4 of a mile

Just to reiterate:
Viewings:
6-8 PM Sunday August 8,
9:30-10:30 AM Monday August 9

Funeral:
11:00 AM Monday August 9

All services will be at the Mill Road Chapel (directions above)

There will be a service also in Ascutney, Vermont. Details will be forthcoming.

Thank you again for all of your love. We are sorry we cannot respond to everyone, but please know how much your calls and messages help us even if we can't respond individually. Don't be afraid to try and reach us. If we can respond we will, if not, please know that we are aware you reached out, and that means a great deal. Thanks.

Marleigh

Funeral

Hi everyone,

My dad's funeral is going to be on Monday, Aug. 9th, 11:00 AM at the Old Mill Ward LDS Chapel in Heber City, UT. There will be a viewing the night before on Sunday, the 8th, from 6-8 PM and another viewing monday morning from 9:30-10:30 AM at the chapel. We will be having the burial the next day, Tuesday the 10th, in Bicknell, UT. Everybody and anybody is welcome:) We would love to see you there, even if you didn't know my dad very well.

If you have any questions or need directions, please email us ( nhsavages@hotmail.com )

We love you! Thank you so, so much for all of your kind messages and phone calls. Almost everyone we've talked to has offered to help us in any way they can, and while we don't really have anything specific or tangible, your messages, prayers and phone calls really do mean the world. We're thinking of all of you, too. Thanks again. We have been blessed with the best friends and family. Your love is invaluable.

Love you, and God bless. :)

The Savages

-Here's the address for the chapel:
Map of 1200 E Center Creek Rd, Heber City, UT 84032-3676

Dear Family and Friends,

Tonight at 7:20 MST our dad joined our Heavenly Father, our Savior, Grandma Savage, his sister Becky, and countless others who love him and have been waiting for him to rejoin them.

When we stepped outside after he had gone, we found that there was a giant double rainbow outside. We all felt like Heavenly Father and Dad had sent it to us to let us know that they love us, and he's okay.

Love you Dad. We sure do miss you.

Love,

The Savage Family

Hey everybody, this is Dani.


Yesterday morning at about 7:00 I got a call from my mom asking me if I could go up to the Heber hospital to see her and my dad. The night before my dad had checked into the hospital, and my mom stayed with him all night. It was a hard night. That morning, my mom and dad made the decision to move my dad to our cousins the Haderlie's home to be with us for this last little bit. He doesn't have much time left, we're expecting him to pass away either tonight or tomorrow. Most likely it will be tonight. He has been in a lot of pain for a long time, and it is a blessing for him that he gets to go back home to our Heavenly Father now.

My mom says to tell you all that it's a New England blustery day, which is a tender mercy for her, especially as we have received so many phone calls from that side of the country. To our friends from both coasts and all over, thank you so much during this time, we've felt your prayers, blessings and love. Please keep praying for us. We love you so very much. Take care, and know that even if we don't answer the phone, respond to emails or other messages yet, we will and are so grateful that you've taken the time to show how much you care.

Love from all of us,

The Savage Family

To Seattle and back....

Marleigh and I have always wanted to go to Seattle, to view the coast and maybe see a whale or two.

Well, it never really worked out with work and then moving to the East. But it's always been in the back of our minds. Maybe on our twentieth wedding anniversary -which didn't work out so well since I was on an airplane headed to Huntsman on that day.

This past week we were able to make it happen, with the help of many, many people; my cousin John and his wife Mary and their great kids, Jenn at the Huntsman clinic for making the arrangements with the Seattle Cancer Clinic, Josh Smart (Captain Josh), James and Jesse for making sure our van was road worthy, Toni at the kennel, and Sue & family, to name a few. Thanks to all those who helped, it's been a long time in the making and has created memories that will last a lifetime for me and my family.

We had a GREAT time. Captain Josh took us out to the San Juan Islands were we saw Orca (Killer Whales), fished, jelly fish, seals, eagles, and even some big horn sheep (go figure).

The kids loved going to the beach with their cousins where they caught clams, oysters, and jelly fish (the dead and non poisonous kind). They also swam and kayaked.

Again, we had a great time. I'll throw in some photo's and call it good for this blog.

Blaine

He's home.

Blaine's nose is bleeding a very small amount now, just residuals. He is home, and has had his final radiation treatment for the tumors he is currently presenting. We are amazed again at everyone's kindness and love. We so appreciate all that everyone does for our family. We are amazed and lifted, as well as very touched. It never gets old, ever. We hope as a family, to one day be able to give to others as we have been blessed. God bless each and every one of you.

Quote of the day:

"Josh, you up to replacing the radiator in the van?"

Silence...

"Whatever happened to super-glue and duct tape?!"

Have a wonderful, wonderful day.

NBFH

Marleigh has mentioned the difficulties of the week. But I think there is a light at the end of the tunnel. The tipping point that brought us to the ER was a nose bleed (from here on I will refer to it as NBFH-nose bleed from heck) that started 8pm Wednesday and is just now subsiding. The cause is a vein on the back side of a cytoma pressing in my nasal cavity. This cytoma has been a double whammy; it has blocked airflow in my right nostril and caused this NBFH in the other. Nasty bugger, and kind of gross. The treatment has been Radiation, Chemo, and inserting a Nasal Foley (sp) which is a tube placed in through my nose into this cavity. The Foley is then inflated to put pressure on the bleeding vein. They've packed my nostrils with everything from Afrin nasal spray, gauze, and tampons (weird but very effective). Again, the good news is that it seems to be working. The NBFH is nothing but a trickle this morning, whereas on Wednesday is felt like a rather large stream. The eye also has begun to resolve, with reduced swelling, and no more gross discharge. The vision is still not good.

It is 7am as I look out over the beautiful Salt Lake Valley. From Huntsman Cancer Hospital we have a great view of downtown including Temple Square. We will be here until the NBFH is no more, so if you've never prayed for a nosebleed-now's your chance. I'm hoping to go home tomorrow... we'll see what the Doctors say.

On a side note... I know we've confused everyone with our email address. Our nhsavages@myfairpoint.net address has blown up, never to be used again. This means our distribution list also went away. So I'm switching to comcast.net. We will still be using hotmail.com, but Comcast offers better distribution list options. As I send out this blog if you receive it more than once, let me know. If there are people who are on the list but don't want to be, let me know. If you notice someone from previous lists that have disappeared, let me know. The best way to get a comment to us is on the comment area of this blog. If you are not sure how to do that, remember to use the 'anonymous' tab when publishing the comment, but please let us know your name in the comment. We like to know who is thinking of us.

Thanks to all who have helped us this week, thanks for your comments and support, thanks for your love.

Blaine

Hard

Blaine is in the hospital and oh boy, has it been rough. I won't try to share everything. He developed progressive symptoms and landed in the ER last night then was admitted. He may or may not get to go home tomorrow. He has new tumors causing him grief, incuding visual impairment in one eye. We've been monitoring changes in his blood pressure along with a slew of other things. He has received multiple rounds of chemo and radiation today, as well as other procedures and meds. This one has been rough. Will blog later, either one of us.

Would it spoil some vast eternal plan?

It’s 5:30 am (MST), haven’t slept a wink… that means I’m back on Dextamethasome. I take this in conjunction with a Chemo medicine called Cytoxan, which seems to be the most effective (if not only chemo that has an affect on the Cancer).

There are blogs that I’ve really hesitated writing and posting. There have been many that I’ve written and deleted because I thought they would be too hard to read. This is one of them. I know the affect they have on those who have been following. You have faith, joy, and hope when we have faith, joy, and hope. You also mourn when we mourn. You suffer when we suffer. And I know you weep when we weep. To me this blog has reasons to weep, but also reasons to show faith and hope. I’ll explain.

We met with Dr. Tricot on Tuesday and frankly the news was mixed. He did his best to put a positive spin on things. He said the results from the PET/CT Scan were inconclusive or could be clouded by the Nulasta shot that I recently had. But upon reading the report, they made the statement that the results were not clouded by the Nulasta shot. Also, when we spoke with him on Monday the results from the Bone Marrow Biopsy were not in. The report came in Wednesday and again, the news was not good. It showed 60% plasma content. 10% means you have Multiple Myeloma. 60% is obviously a very high, discouraging percentage.

Marleigh seems to think that he is trying to protect me from the bad news.

The simple fact is that those who are diagnosed with Multiple Myeloma (MM) will die from it (unless they are first struck by lightning, run over by a car, etc). There is no cure, yet. We’ve known this from the beginning and I hope we’ve communicated that through these blogs. The million dollar question is ‘how much time do we MM patients have to live’. We’ve heard numbers ranging from 2 years to over 10 years. From the beginning my MM has been very aggressive, I’ve made Dr. Tricots’ top 5 list of aggressive cases (of over 5000 patients). So, right off the bat the odds have been against me.

Nobody has been willing to give their best guess for the amount of time I have left… until now. When we met with our Oncologists/Medical professions at both Dartmouth and Huntsman they estimated less than a year. One estimated less than half that.

Things we know… I have tumors that continue to grow; both internally and externally. You should see the nasty ones on the top of my head and the equally nasty ones growing on the two ports on my chest. We are going to radiate the big ones on my head and the ones on my chest. The radiation worked on the tumors on my lip and gum, so we think it’ll work on these four. We know the Cytoxan has had an affect on the tumors. After each round they have been reduced. We also know that they come back quickly (except on the radiated ones). This is an indication that the Cancer is alive and well.

Things that we don’t know… we don’t know the affect the new routine/mix of drugs will have. At the onset, Dr. Tricot said it would take 6 weeks to 3 months (and maybe up to 6 months) to know if it is having any affect. So we are still waiting for these drugs to kick in. For me, this still gives me hope and encouragement. I know it’s a long shot, but somehow, someday, and on someone they will find a cure for MM. Why not THIS? Why not NOW? Why not ME? Again, stealing a thread from Fiddler on the Roof; Tevye asks ‘Would it spoil some vast eternal plan, if I was a wealthy man?’ Well, I’m asking ‘Would it spoil some vast eternal plan, if I were to beat this Cancer?’

Now, there are things the Medical Professionals don’t know when they make their prognosis… They don’t know that I am full of faith. I believe I’m going to beat their time frames, maybe by a lot. It could be this new routine/mix of drugs that I’m taking. I could make medical history with this new treatment. Maybe that’s my mission.

I’m more inclined to think it’s because of the faith and prayers of my family and friends. Because of blessings and Temple and Church prayer rolls. As I pray, I’m comforted. I know that I’m in Gods hands, that His Will will be done. If that means the short end of the time frame then that’s what it means. But I hope it means the longer end of the time frame. I’d settle for somewhere towards the upper end of the time frame, say 7 years- Do you think God negotiates ; ) Again, I’m at peace. And I think my family is getting there too, at least that is what I pray for.

Marleigh keeps reminding me of the account of Abraham and Isaac in the Old Testament (Genesis 22 for those interested).

Genesis 22: 1-2, 6-13
“And it came to pass after these things, that God did tempt Abraham, and said unto him, Abraham: and he said, Behold, here I am. And he said, Take now thy son, thine only son Isaac, whom thou lovest, and get thee into the land of Moriah; and offer him there for a burnt offering upon one of the mountains which I will tell thee of… And Abraham took the wood of the burnt offering, and laid it upon Isaac his son; and he took the fire in his hand, and a knife; and they went both of them together. And Isaac spake unto Abraham his father, and said, My father: and he said, Here am I, my son. And he said, Behold the fire and the wood: but where is the lamb for a burnt offering? And Abraham said, My son, God will provide himself a lamb for a burnt offering: so they went both of them together. And they came to the place which God had told him of; and Abraham built an altar there, and laid the wood in order, and bound Isaac his son, and laid him on the altar upon the wood. And Abraham stretched forth his hand, and took the knife to slay his son. And the angel of the Lord called unto him out of heaven, and said, Abraham, Abraham: and he said, Here am I. And he said, Lay not thine hand upon the lad, neither do thou any thing unto him: for now I know that thou fearest God, seeing thou hast not withheld thy son, thine only son from me. And Abraham lifted up his eyes, and looked, and behold behind him a ram caught in a thicket by his horns: and Abraham went and took the ram, and offered him up for a burnt offering in the stead of his son.”
(end of scripture).

It was at only at the LAST MOMENT that the angel of the Lord called ‘Lay not thine hand upon the lad, neither do thou any thing unto him’ and then the Lord provided him a ram caught in the thickets to be offered instead. I believe that my life may come down to the last moments, but there will be a ram in the thickets to be offered instead.

The good news… My appetite has been good and I’m gaining weight. Both positive signs that I’m still battling. My energy level is good and I remain active; this past week I’ve been fishing 3 times and went up in an ultralight airplane (may be a stretch to call it an airplane) once. Picture a lawn mower with wings (check out the pictures). Thanks Glen, Van, and Grandpa. It was a blast and I hope for a repeat of both activities. I’m still working, I have a great job that allows me to work a majority of my time out of my home office. My next scheduled travel trip is to Chicago in August. I plan on being there. I've just purchased Elk hunting tags for this fall and plan on taking my boys on a great hunting trip.

Marleigh mentioned our recent trip to New England. We love and miss the good people there. It was so good to see our many friends and family. We felt your love and support. Thank you.

Well, I’m going to end this. I know it’s been a mixed bag. Please keep us in your prayer (thoughts if you’re not inclined to praying). I can’t tell you what it means to us, it fills us with love and support.

Blaine

New England

May 24 - fly out of Salt Lake City, snowing
May 25 - 1st day of work, 94 degrees Fahrenheit in the shade, travel to Dartmouth (2 hour drive) for labs, slightly elevated CRP
May 26 - return to Dartmouth, 2 units of whole blood, 1 unit of platelets
May 27 - saw the ocean, Hampton beach, 60's, ocean breeze, beautiful

May 28 - saw Prince of Persia with Blaine
May 29 - Travel to Ascutney for church, see ward and family, HATE to leave, Dartmouth for labs, 2 more units of whole blood
May 30 - work, labs, 2 unit of whole blood
June 2 - 1 unit of platelets, very high CRP
June 4 - Kyle's birthday, totally taken care of by Heber family,even higher CRP, tumor marker, decision to give Cytoxin (chemo) despite counts being low. Blaine receives Cytoxin, 2 units whole blood and 1 unit of platelets over night
June 6 - back to Ascutney for church, stop at house (sniff-sniff), back to Westford, pack, tumors visibly smaller every day
June 7 - fly home to cooler weather, see kids
June 8 - labs ok, no infusions needed
June 9 - Joshua graduates high school with honors, Alexis' birthday
June 12 - Put Josh on a plane for Texas to work for the summer

OK, so a lot has happened in the past three weeks! Emotional roller coaster. Today was a very poignant day. Our oldest son, Josh, has grown up and moved away for the first time. We are SOOO going to miss him. Did I mention that he graduated with honors? Kyle will help pass the Sacrament for the first time tomorrow. Alexis is getting ready to take the test to get her driving permit - I went to the garage to do an errand to find her behind the wheel - !!!! Dani will be moving back to Provo to work and take a summer class, but be home most weekends, I hope. So many changes. Check out Dani's blog - you'll love it.

What a Day!

(cemetary at Normandy, France)

What an emotion filled day! Yesterday Blaine and I were able to travel to Ascutney and visit the congregation we were a part of for 10 years. We were so very happy to see everyone and overwhelmed by the love we felt for them and from them. We miss them! We were then able to spend just a brief hour with most of my family. It was way too short. It was hard to leave both groups, but leaving was a must. We needed to get Blaine up to Dartmouth to get his counts checked. A plug for Dartmouth Hematology/Oncology staff - they made special arrangements to be sure Blaine could get what he needed on a weekend and still go to church and see family. We love them. We also got to see Carol who now works in the HISCU (sp?) unit. Such a treat. Blaine was not in need of platelets yesterday, though by no means were they great, but he did need two units of whole blood, and his whites had dropped again. He is neutrapenic once more. He wanted me to head home today to be with the kids. He'd be fine... he always says that. Just so you know, I am typing from Westford! The kids are doing fine with Aunt Shauna, Uncle Todd, Grandpa, cousins, and a ward that is taking special care of us there. We are so blessed. I will watch Blaine. Docs say that patients adjust to living with low blood counts and can't always tell when they're in trouble, even if they WERE the kind to admit it, which Blaine is usually not (serious understatement here). A second pair of eyes is needed to watch, and a second pair of hands to help. Who's he kidding? He knows he needs me. :)

We're so glad to see everyone we have and sad to have missed the ones who were sick or taking care of sickies. You know who you are! But we love you. Hope Mom and Brian are doing ok.

May we just say a very sincere thank you to those who gave the greatest measure of devotion to this nation. Our freedom isn't free. We also thank sincerely those who served and came home, those who are currently serving, including family, and those wounded warriors who need our care, as well as their families. God Bless America.

Sunday...

We are going to try our best to be at the Ascutney chapel on Sunday for church and then stay from 1:30 - 2:30 approximately. We would love to see anyone who can come and is not sick. We cannot risk exposing Blaine to anyone who could pass on germs, unfortunately. I am not sure we will be able to stay much past 2:30, so please don't come too late. We will update Saturday or Sunday and let everyone know if he is still able to be there. He's felt great the past couple of days.

New England is hot and humid! I love it. It feels good on my skin, and I love, love, love the green and trees. The Celtics are giving me a pain, however. The kids are all wishing they could be here. Hope to see you on Sunday.

Marleigh

New Frontiers in Medicine

So here's the deal. Blaine is severely cytopenic, meaning that his counts are very down, but not pan-cytopenic, meaning that all cell lines are down. His whites are recovering, though clearly not ideal. He is getting platelets and red blood cells today.

We met with Dr. Trico this morning. Blaine's Pet scan shows numerous new lesions, meaning progressive disease. They are not large, but they are present and growing. We knew the disease was progressing by the lesions that we could see on the outside. None of the lesions on the inside of his body are extramedullary, or outside the bone, which is good. Since his counts have not recovered, they cannot do any further chemo until it does. Chemo controls active disease, which he has, as well as affecting bone marrow. Thus the low counts. His platelet count needs to hit 100 before they can treat him again. They were 16 this morning, so pray for Blaine's blood counts to recover so they can treat the active myeloma! He responds to the chemo, but it always 'reseeds' as Dr. Tricot says.

The million dollar question is ... how to keep it from reseeding? Well the dedicated Dr. Tricot has a possible solution. There is a regimen of three common, non-chemo drugs that do NOT affect marrow function and therefore will not drop Blaine's blood counts, that in combination have been shown effective killing cancer stem cells in lab animals and test tubes. Just as healthy plasma cells develop from healthy stem cells, myeloma cells differentiate from defective stem cells. This regimen has not been tested on humans. Blaine will be the very first. Dani says, "He will boldly go where no human has gone before. Sweet!" They will also give carefully dosed and monitored amounts of chemo to control active disease, tapering it off as the stem cells deteriorate. He said this should take 6 weeks to 3 months. But since this has not been done on humans before, we will not know for sure until it gets underway.

To be very clear, this is Dr. Tricot's last line of defense. He says after this, he has nothing else. Blaine's counts are too fragile to try any trial chemo, and he would not qualify for most trials because he is post-transplant. So we are praying for that miracle. If this shows promise, then it has the potential to help many people. This is what Dr. Tricot has been working on. Half of his job is taking care of patients and the other half is looking for a cure. As stated, Blaine will be the first to try this approach.

We leave Monday for the east coast, but I am very unsure if we will be able to do any visiting. We will however, have to go to Dartmouth a time or two, so maybe we can see a few of you there, but this may be at very odd hours ... we hope Gaylin will be working during at least one of those visits. The kids would REALLY love to come as well, but alas, not this round.

That's the news today. Blaine is asleep while he gets his infusion, and I am here typing. It is a beautiful spring day, and we continue to count our blessings. While there are certainly trials, there is also hope. Hope springs eternal. We know in whom we have placed our trust, and we will continue to do so. Take care.

Bear in Heber

Blaine spent Monday night through Friday afternoon in the hospital. He spiked that fever, at first refused to go in (is anyone surprised?), went in growling, then spiked a good, high fever in-patient. He stopped growling. His blood counts were shot. He has required two units of whole blood and three units of platelets since Tuesday. His white counts were about as low as they can get without reading 0.0. His reds were up a little bit yesterday, as were his platelets. His whites only came up marginally, but were none-the-less up a hair. He was treated with high-dose IV antibiotics, and will continue that at home for the next week. His fevers are gone, but he is very neutrapenic, and therefore will stay home except to get his blood checked, until his counts recover. He had a bacterial infection in one of his ports. This came because his of the low white counts, which happens after high-dose chemo which he has recently had.

His face and mouth are exceedingly sore from radiation. He has been in a great deal of pain and could use your prayers. Needless to say, he is NOT getting on an airplane today. The plan is for us to fly out the 24th. Pray that we can! Or that the right things will happen. It will be a joy to see everyone we can, but what we can do is a big question mark right now. I will do what he needs, and that's it. If we can make it to NH, we will. If not, it's for very good reason. Remember we love you, and are DYING to see you, but can only do what health will allow.

We are so very grateful for all of you who have prayed and fasted for us, especially Blaine, and we gain great strength from it. We really do, it is no imagined thing. It is very real. We also thank all of you who send their love through comments on this blog. It also lifts us. We check almost daily to see what people say. We know we don't communicate back as well as we would like, and pray that you will understand. We hardly see or talk to anyone out west who isn't very close either! Thank you. We love you, and pray you will all have your needs met, and joy and laughter in every day.

Speaking of joy, congratulations to our very good friends, the Halley-Streeter family on the arrival of their new bundle of joy, Sarah! She looks beautiful. Take care.
Marleigh

Simple Math Equation

Here's Cancer/Chemo's version of a math problem:

Neutrapenia + High Fever = Hospital.

On Monday I had a fever spike at 102.7... I've been here at the Bone Marrow Transplant (BMT) inpatient unit since then. Not sure how long I'll stay, hopefully I go home tomorrow.

It's very common when your Bone Marrow gets blasted with chemo to have fevers, nobody seems to be overly concerned. Definitely better to safe than sorry. So the hospital it is.

I'd rather be home, but I sit here and work on my laptop, have my meals brought to me, have people clean up after me. I have a great view of the Salt Lake Valley. Not a horrible deal.

Blaine

Whew!

Just wanted to send out a quick update...

The tumor on the top of my head is virtually undetectable (I hope that means gone). The tumor on my chest is still there but has reduced in size almost to the point of being undetectable. The two tumors on my face are still there, but they have also gotten significantly smaller. Seems to be a very good sign.

I had my lab work drawn on Tuesday, and my 'Myeloma Markers' are holding steady, neither increasing nor decreasing. Again, good news.

You may also notice eyebrows and there's short, stubbly hair under the hat.

So the long and short of it is that between low dose chemo, high dose chemo and radiation, things are holding steady (MM markers) and/or improving (tumors). The high dose chemo takes my energy for a few days (but it is starting to rebound), makes me neutrapenic (compromised immune system-so I need to be very careful with germs), and could take my hair (not a big deal-I've gotten used the the 'bald is beautiful' concept). I'll take it!

Apologies to Vic St. Pierre for not running this through him first, but he had a comment on the last post that hit me right where it was intended and I couldn't agree more; 'near misses' don't count . So thanks Vic!

He said..
'You better not get discouraged!! Someone, somehow we have to keep a strong outlook. Nancy and I were in NY City eating dinner 3 blocks away when they tried to set off the bomb in Times Square on Saturday. They failed and we are still here!! The moral is near misses don't count. Trust that life will prevail. God is looking out for us.Vic'

BTW- I will be in New England for a about three weeks starting May 16th! I hope to be able to take some time on the weekends and go visiting. Marleigh may come out for a portion of that as well.

Blaine

Not Discouraged... anymore

Thanks for the kind words of encouragement. This blog has been a tremendous source of strength for us.

On Friday I had my heavy dose of Cytoxan, as well as my 6th session of Radiation, and I'm still on the lower doses of chemo. I'm sure I glow in the dark.

So, the bottom line is the tumors have started to decrease, slowly. Still hideous, but not quite so much. And my hair continues to grow, it looks rather fuzzy.

So cautiously optimistic is my outlook for this week.

Thanks again for all the support.

Blaine

Discouraged

I'm Discouraged. Not sure what more to write. The tumors have not subsided, and possibly continue to grow. The ones on my face are being blasted with Chemo AND Radiation, but they're still there. Tomorrow I'm getting a higher dose of Cytoxan to try to combat it. We'll see how it goes.

Some good news... my hair has started to grow back.

The bad news... higher doses of Cytoxan normally take my hair. Oh well... if it goes then it was good while it lasted.

I'll be in touch.

Blaine

Radiation

April 23, 2010
As the previous post mentioned, I have a total of four Plasma Cytomas; one on the top of my head, one on my upper lip, one on the inside of my mouth and one on my chest. The plan is to radiate the two on my face because they are without doubt the most difficult and uncomfortable (hideous is a better word). The other two will be left as a measure of the effectiveness of the Chemo. If they shrink and go away, that is good news. It means this mixture of Chemo is working.

First day of Radiation; piece of cake. It took longer to park the car than the treatment. No pain, no discomfort. Like I said- piece of cake.

I'm going to receive a total of eight radiation treatments, day one is in the books. Seven to go.

Blaine

Prayers

Just in case you missed it, let us restate.

This Sunday our family will be fasting for Blaine. We will miss two meals, or not eat or drink for 24 hours. We will dedicate our prayers to his healing, or asking God to grant us that miracle, if it be His will. We are also very concerned for a young wife and mother who is listed as a 'chronic cancer' patient with Hodgkins Lymphoma. She has been battling for years, and is under a constant struggle to live and maintain an acceptable quality of life that allows her to parent her son. She has life threatening disease that is only controlled by life threatening side effects. Her name is Hillary. If you feel to add her to your prayers as well, I know it will be deeply appreciated. God speed and God bless each of you.

Ben Hur...

It’s 3:30 am, Saturday morning. Guess what chemo drug I’m back on? Dextamethasone; which keeps me from sleeping at night. Seemed like a good time for an update (although I’m not going to actually post this until Sunday).

To quote a line from the movie Ben Hur (and Bryson Cook); Pontius Pilate made the statement that “A grown man knows the world he lives in.” To me this means that men and women need to recognize their environment and what works or doesn’t work for them; things that are good and bad, actions and reactions/consequences, what their responsibilities are for themselves, their families, their employers/employees, no rose colored glasses, they see the world as it is.

It’s a great line. To borrow it and apply it a different way; “Most Cancer Patients understand the world they live in”. For most of us, the reality is, in addition to the physical issues (the pain, exhaustion, weight loss, nausea, etc) that there is always a fair amount of anxiety, fear, uncertainty, inconvenience, and anger (to name a few). For example, our appointment today that started at 7:30 am (leaving home at 6:30 am) that we thought would be a couple of hours-tops, turned into an all day event- leaving at 4 pm (arriving home at 5 pm). Fairly common.

The worse part is the uncertainty and anxiety. I’ve known in my heart of hearts that I wouldn’t be in remission long, my Cancer has been too aggressive. At Dartmouth I went from remission to relapse in the blink of an eye. Things have been better here in Utah. However, after my last round of chemo I got sick; a head cold developed into a mild pneumonia. It knocked me down for a couple of weeks. But I’ve shaken both. However, a couple of weeks ago I started to get sores on my head, three of them to be precise. One on the top of my head, one on my upper lip (hideously ugly- imagine the biggest, ugliest wart you’ve ever seen. That’s what it looks like), and one on the inside of my mouth, on my upper gum. I thought they were ‘side effects’ from all the drugs I’m on. Well, again because ‘I know the world I live in- the Cancer world’, I thought that like most of the side effects I’ve had that they would come and go. I had been waiting for these to go- but they didn’t.

Monday morning we called our Oncologist who immediately called the Dermatologist to get an appointment. At 2pm on Monday I was in their office having a biopsy on the bump/sore on the top of my head. We discover another bump on the right side of my chest, next to my single lumen port. Very discouraging.

We were scheduled for Re-Staging on Wednesday (Labs, X-ray, Neurology appointments, the dreaded bone marrow biopsy, and the equally dreaded MRI). We were also told we would receive the results of the biopsy on my head. The results came in, and it wasn’t good. The bumps/sores are Plasma Cytomas… tumors like the one that lodged itself into my vertebrae, compressing my spine. Obviously, the cancer is back. Again, very discouraging.

So what does this mean? It means that, once again I have cancer in my bone marrow. It means that, at the moment, my very aggressive Cancer is winning. (On the bright side, the biopsy showed very small amounts of cancer in my bone marrow. It also showed that the lesions on my bones had actually reduced. So that was good news.)

It also means that my chemo routine changes again. The approach has been to hit me with large doses of chemo and then let me recover over six week intervals. Then hit me with another large dose and let me recover. The new approach is to keep me on smaller doses of chemo all the time. I will take three of the four chemo medications orally (Cytoxan, Dextamethasone, and Etoposide). The final chemo is Velcade that I take through an infusion on Fridays.

Here’s the rub… and if I’ve bummed you out too much already, this would be a good place to stop reading. Go listen to happy music or watch a Disney movie:).

Chemo makes you very weak, it lowers your immune system, makes you very susceptible to catching something that is difficult to recover from.
But even worse… generally, Cancer is smart (and my Cancer has proven to be very smart). It quickly learns how to combat or get around the new chemo. It figures things out and finds new ways to grow. Hopefully it takes it a long, long time to catch on this time. Another Miracle would be nice.

Now the $64,000 dollar question (actually with inflation who knows what it’s worth now?)…… Have I given up?

Complicated answer. The short answer is heck no. I have a wife to take care of and kids to raise. I have responsibilities to them (and the church) that I plan to fulfill. That I need to fulfill. Throughout this whole ordeal I have been full of faith. I’ve always felt/believed that I was going to win. I now know that in many ways I’ve already won. I have a great wife and super great kids. They are strong! Whatever happens, they will survive and thrive. I am still full of faith that my Heavenly Father loves me and knows what is best for our family. We are at peace with that. I’m praying that I have many good years ahead of me (regardless of the medical prognosis). But again I know that I’m in Gods hands and that He knows what He’s doing.

Rest assured, I am going to continue to fight this thing has hard as I can. I’m not giving up! I’ll certainly do my part to beat it.

Again, We Cancer Patients know the world we live in and the struggles that exist in that world. I can honestly say that Cancer Patients are the toughest group of people you’ll ever meet. Football players… wimps in comparison. We tread onto the ledge of death on a regular basis and with great medical teams, most of us fight our way back.

One of my favorite Old Testament stories is that of Moses when he led the children of Israel out of Egypt. They faced impossible odds that the children of Israel just couldn't quite see through, they failed to grasp the big picture, they lacked sufficient faith. When Moses led them to the Red Sea, they were convinced he had led them to their death. Hear Moses’ response: “And Moses said unto the people, Fear ye not, stand still, and see the salvation of the Lord, which he will shew to you to day: for the Egyptians whom ye have seen to day, ye shall see them again no more for ever. The Lord shall fight for you, and ye shall hold your peace.

Our family will be fasting this next Sunday. Join us if you can.

I’m going to end this very somber, depressing blog. Sorry to bring you down.

On a funny note, I was in Huntsman’s gift shop today and got a kick out of some of the t-shirts for breast cancer. I’ll share a couple:
• ‘Of COURSE there fake… The real ones tried to kill me!’
• ‘Cancer has taken both my breasts, but at least men look me in the eyes now.’

Take Care, We love all of you.

Blaine