Welcome to my rollercoaster.
(that's me and my son on the 2nd row in the first picture and another son and my husband on the first row in the 2nd pic. Yea for Disneyland!)
I am on maintenance therapy for a whole year!!! I am just finishing up the third cycle-nine more to go! This consists of a quick IV push of Velcade on days 1 and 4 and 15 and 18. It's basically chemo two times every other week. I am also on Dexamethasone-a steriod during those weeks and Thalidomide everyday.
Some of you may remember hearing about this drug. It was used in Europe in the 50's and early 60's as an anti nausea drug for pregnant women. It then cost less than $2.00 a pill. It caused terrible birth defects and was taken off the market. About twenty years ago it was discovered that it kills myeloma cells. It now costs over $5100 a month-thank you insurance! I have to take a test and survey every month to assure the drug maker-Celegene that I am not pregnant-fun!
All of these drugs include side effects and a free ticket to ride the roller coaster. The games begin on the Monday of Velcade when I am at the top of the ride. By Thursday I go in for my second dose and I am heading down the track faster and faster. "okay just relax and take a deep breathe," I say to myself as my energy drains and my stomach begins to churn (not too bad they have good drugs for that) I get chubby checks and a red face. I get shaky and achy from the steriod and have a hard time sleeping. My hands and feet go numb and tingly. By the weekend I am dragging and hit the bottom of the track physically, mentally, and emotionally. Do I raise my hands high in the air and scream as I go down or continue the white-knuckle grip through the whole ride? Is this the time to hold on tight or the time to let go? Let go of the fear and remind myself that things will get better. To draw close to God and rely on faith in him. To replace the "death grip" of fear with faith in God and his plan for me. I am slowly learning.
Philippians 4:6-7 says, “Be careful for nothing; but in everything, by prayer and supplication, with thanksgiving, let your requests be made known unto God.
And the peace of God, which transcends all understanding, will guard your hearts and your minds through Christ Jesus.”
I Peter 5:6-7 says, “Humble yourselves, therefore, under the mighty hand of God; that he may exalt you in due time, Casting all your care upon him; for he careth for you."
"Jesus didn’t die on the cross so that we could go through life scared. Jesus died to take away our sins and our fears. He died to give us hope, to give us life, to give us something, often the only thing, we can trust with complete assurance."The Secret to Riding Roller Coasters by Randall Willard ----(you can read it on the internet)
I am learning to reach for his hand as I descend down the track. Then I start "clackity clackity clack, slowly heading back up about Tuesday. I can feel myself getting stronger each day and try to be somewhat productive as I clack back up the track. Preparing myself for the next round the following Monday.
WHAT A ROLLERCOASTER!!
I am learning to plan my life around this ride with safety belts that never unlock to let you off! Couldn't I just hop on over to a happy little merry-go-round for a change in this crazy amusement park?
I asked the nurse if my body would adjust and this would get easier. To my dismay she said it will actually get harder because the Velcade will continue to build up in my body as the treatment continues. Yuck!
I do feel stronger on the off weeks as my body continues to recover from the stem cell transplants but I don't think I will be off running any marathons anytime soon. I consider the day a success if I can make dinner and do a load of laundry.
I know several people have wondered why I have to do this since I am in Complete remission. Complete remission means there are no signs of active myeloma. This treatment will hopefully kill off all the "sleeper cells" lurking inside my body. The stem cell transplants and high dose chemo wacked off the dandelions now we go in for the roots.
This plan of attack we have chosen is the most aggressive form of treatment used in the U.S. Most major cancer centers including the Mayo Clinic prefer using several different lower dose chemo drugs until they prove ineffective and then resort to one stem cell transplant.
We chose to go with the most aggressive Total therapy 3 treatment. Where you throw everything possible at the cancer before the cells know what hit them and have a chance to adapt. Some studies show that this promises a longer remission which buys time until a cure is found.
There is a lot of research and clinical studies being done. New myeloma drugs are coming out about every six months. There is much hope that a cure is coming. I have to hope that that is the case.
My husband is by my side on this ride, holding my hand as we race down this track together. He constantly amazes me with his strength and ability to juggle so many things. This is not any easier for him. So here we are riding this rollercoaster together, adjusting to this life, and relying on our family, friends and faith to pull us through and.... learning when to let go.
What a ride! Wish us luck!