NOT My Favorite Things

Syringes and dressings

And plastic cap holders

Rubber glove boxes

And medicine folders

Alcohol wipes that are waiting to sting,  

These are a few of my NOT favorite things!

When the tape tugs,

When the shots sting,

When I’m feeling sad . . .

I simply remember my NOT favorite things

And still I don’t FEEL . . .  TOO bad!

 

Even though Rogers & Hammerstein would not approve of the lyrics, the song pretty well sums up my week back home. We’ve been busy learning how to navigate this new world of syringes, catheters, injections, and a foreign glossary of terminology.

 

And still, it hasn’t been too bad.

 

It’s the daily injections that you think would be the worst, but really, that’s been going well. Sure, they hurt, they sting, but they are also done for the day. The nausea has been kept under wraps with medication and while I’m tired, it hasn’t been a huge distress either.

 

It’s the tunneled central venous catheter that is my biggest pain. It isn’t exactly comfortable as it tugs, pulls, pokes and is literally a pain in the neck. It’s in the way, it’s foreign and worst of all, it’s not going away any time soon.  Ugh.

 

Still, it hasn’t been too bad.

 

And sometimes, not being TOO bad – is actually really good!

Despite what Julie Andrews may sing, only Grace can help me see that.  

What's Next?

Hi Everyone,

If you’re following along on the timeline, here’s an update:

MOBILIZATION:

Finishing this up this week at home – daily injections
 

COLLECTION:

Return to Omaha Sunday afternoon (January 19^th). Labs done on Sunday night.

If Labs are good, stem cell collection begins Monday morning (January 20^th)

Collection could take a couple days or a week. This will be done as an outpatient.

 
HIGH DOSE CHEMO:
After collection, will be admitted into the hospital.
 

TRANSPLANT:

After the High Dose Chemo and in the hospital.

 

We’ll you keep you posted as we get more details on the procedure.

Thank you for the prayers everyone!

 

 

News About the Transplant in Nutshell

Cancer is complicated and it can't really be put into a Nutshell, but I'm going to try! At times there is too much information to keep track of and too much to take in. I haven't been very good at explaining it to others, because there is much I don't understand myself and I'm just beginning to learn. So please forgive me for not keeping you up on things to the extent you may like, especially as you pray.

If you would like to follow me through the transplant process, hopefully this will help a little bit.

THINGS ALREADY DONE:

ü  Four months of chemo already completed to prepare for the transplant

 

ü  Cancer nearly in remission (Prayers heard – thank you all for praying!)

God did this and we are so grateful for the month reprieve from chemo in December to enjoy Christmas with family and friends. I feel good and healthy going into the transplant!
 

THINGS COMING UP:

      Dates we know:

 ·         Tuesday, January 7 - Transplant process begins in Omaha at Lied Transplant Center UNMC
·         Wednesday, January 8 – Procedure to get a port put in. This is good.  It means less pokes and I’ve had enough needles for a while!
·         Thursday, January 9 – Spend the entire day getting chemo (return home that evening)
·         Monday, January 13 – Start giving myself Growth Factor injections (it helps me produce more stem cells and fattens them up for collection)
·         Sunday, January 19 – Back to Omaha to begin the stem cell collection process

 

      Dates from here on out are unknown for the high dose chemo, transplant and recovery

      I will miss my family, friends, coworkers, my church, my favorite chair and my dog a lot!

      February 14^th - Tentative date for returning home to recover

 

That’s everything in a nutshell - plus one Minion! (ok three Minions!)

 

 

 

A few things you may be wondering about –

If the cancer is in remission, why have the transplant?

The reason is basically that the cancer, although nearly in remission now, is sure to come back fairly soon. There is no cure for multiple myeloma, but extending a person’s longevity is possible with treatment. Stem cell transplants have been giving patients about a year longer than they would normally have.

 

Whose stem cells will be used in the transplant?

My own stem cells will be used for the transplant. Since I’ve already been through four months of chemo, the cancer is minimal and my own cells can be used for the transplant. Hopefully enough of my cells for two transplants can be harvested during the collection process. After that, I’ll need a donor match for a third transplant. It is not uncommon for myeloma patients to need several transplants.

What’s up with the Minions?

The Minions are joining me on this journey as my mascots. I’m not sure whose idea it was, but I’ve adopted them to come along for the ride, or should I say, they’ve adopted me! They do have certain demands like being in photo ops, special parking spots and other things I won’t get into at this point. But overall, they’ve been fun to have around. You may see them from time to time, showing up in various places and cheering us on!  

 

 

We'll try to keep you posted along the way. Thank you everyone for your prayers!

A Little Coffee With Some Grace

Right now I stand at a threshold, waiting to cross into unknown places and experiences as I look ahead toward the transplant in Omaha. It’s impossible to prepare for this. So much is out of my control and soon, I will be relinquishing even more control.  It’s not an easy place to be.

Yet with the loss of control and the many challenges these past five months, the cancer has not yet entirely consumed my body, my thoughts, my emotions or my spirit.  It’s staying back for now and I attribute this to faithful prayers, quality healthcare and caring support from family and friends.  I also attribute it to Grace.

At every challenge faced, I can honestly and DEFINITELY say that God has provided and continues to provide the Grace I need when I need it. I find it speaking into the pain, the fears, the small victories, unexpected blessings and the enormous unknowns.   On good days, Grace is there whispering the Father’s love. And on bad days it’s there, shouting the Father’s love!

I’m learning to listen to it. And to me personally, Grace continues to speak into each and every situation I encounter:

In the mornings, Grace says,

“Get up and live your life! Even if you don’t feel like it, TRY. And if you can’t get up, that’s ok – live your life anyway, in some way - even if it’s from your bed. Amy Carmichael was and still is a blessing to many people, and she ministered in part, from her sick bed!”  Yet on most days, my feet do find the floor and soon after I’m feeding the dog, and then making coffee in kitchen. I like to have a little coffee with some Grace every morning!

Throughout the day, Grace says,

“Don’t forget there are many people hurting much worse than you - and this life, this struggle, is NOT about you. Look for the hurting and reach out with the Father’s love. That’s what I created you for.”

In the darkness, Grace says,

“Don’t forget to hope. And most of all, don’t forget WHO to hope in. And this is not the kind of hope that puts on a Pollyanna face in hard trials and pretends not to struggle. This kind of hope looks at suffering right in its miserable, ugly and at times evil face and chooses to see what is still good and WHO is still good. Practice your hope at all times.”

In the times of blessing, Grace says,

“Take time to be in the moment - embrace it, treasure it, enjoy it. It is a gift and if you do these things, you will remember it when you need to remember it. Cherish the moments, but above all, cherish the people in the moments and God who provides both the people and the moments.”

In the evening, Grace says,

“Breathe . . . be still and let yourself be weary and rest. Yes, rest your body, but rest your spirit most of all. You don’t have to fight every moment, all day, every day. Pursue instead the One who created rest, and in Him you will find tender healing, renewed strength and the greatest rest.”

When I am overwhelmed, Grace says,

“There is a lot you can’t control. You can’t fix this. You can’t change it. There is a lot you don’t know and there is a lot you can’t even imagine.  You can’t prepare for what’s coming and you can’t prevent it.

But instead, you’ve been called to trust HIM with the knowing, HIM with the planning, HIM with the fixing, HIM with everything. Oh yeah, and you also need HIM for the ability to TRUST HIM. HE does it all, everything. That’s it. And don’t try to wrap your brain around any of it, because you can’t do that either! 

Just remember that His love for you, took His Son to the cross – to die! You can trust HIM.”

Grace says a lot, if I just learn to listen.

So moving forward, I continue to watch, listen and pray for Grace. The Father knows best how desperately I need His Grace. And not just to walk through the journey of cancer, but even more, to live in a way that is God- honoring and courageous so that others can experience His grace.

Because it is in this way, Grace says the most of all.

Where Things Stand

Round 3 Day 2

It's a small milestone, but I'll take it. I've reached the halfway point in my treatments preceding a stem cell transplant. According to the doctor, I'm responding well! The feeling is returning to my feet and my blood work is encouraging. The cancer is retreating and after another two months of treatment, I could be in remission.

Even better, there is talk of moving the stem cell transplant to early January, instead of late December. This way I could spend Christmas and our anniversary with my husband and family, instead of in the hospital away from home. We may know in another month how everything times out. As of yet, I haven’t even been officially approved for the transplant, so a lot has to happen before the end of the year.

The amount of medication I’m taking is incredible to me, but I'm getting used to it. Some of the meds are highly regulated by the FDA and I have to special order it, so that means surveys to take, hoops to jump through and lots of phone calls. Needless to say, some of the meds are also incredibly expensive.

This is why I’m full, after taking my meds in the morning!  

The side effects are not bad enough to keep me from going to work. I think I missed a day when I had a bad reaction to my infusion, but otherwise, I’m still showing up and they aren’t telling me to go home (yet). I’ll be discerning and NOT share too many specifics about the side effects, but just know they are bearable and wide and varied! It’s like a smorgasbord on some days. The most difficult for me is the tiredness and blurry vision. For someone who loves to read, this is a bummer!

The appointments, tests and management of the cancer has been a hand full. I now have one planner for regular stuff and then I have my cancer planner. 

OK, I’ve got to put in my planner that I need to come up with a better name than cancer planner!

My family is doing well, all things considered. Corey is a tremendous support and Kaylee helps me out a lot and encourages me to be brave. As always, my folks are a huge help - always willing to feed us, run errands and checking in to see what we need. All of us are processing this differently and that is to be expected. We all try to speak the truth (in love) about my condition. The only sugar coating at our house is on cookies.

That’s where things stand – hopefully that brings you up to speed! I’m sure there will be more to report on when the transplant get closer and the cancer will be restaged.

Here is a picture of my “bad day basket.” My mom put this together with gifts for me to open on bad days. Right now it holds my prayer shawls as well. One is from a church here in town that does this as part of their ministry for people in the community. Another is from my childhood home church in Kansas. And the third one is from the Prayer Shawl Ministry at the church where I work. The blood cancer makes my hands and feet especially cold, so I’m set for cooler weather!

Thanks again everyone for the cards, the food, the gifts and especially the prayers!

The Outpouring

Round 1 - Day 23

Grace came and it is still coming in all of its amazing forms, colors, shapes and surprises.

Cards, hugs, well wishes, gifts, helping hands, emails, flowers and prayers. Just know I that I treasure them all and thank you for each and every one. The designated card wall in the study will have to be expanded – all because of the grace spilling over. 

And the many words and conversations in person kindly spoken. I appreciate them as well, knowing that the person asking “how are you” is actually taking a risk, since I might actually tell them “how I am” and we could be there for a while.

Cancer is not easy to talk about, even though nearly everyone has been touched by it in one way or another. It's uncomfortable, awkward and many times painful to even bring up in conversation, so thank you for reaching out to me and taking that risk. I know for some of you, it's difficult and it's a sacrifice to do so.

It's also another form of grace pouring down, especially when I needed it this past week. Helping at a University barbecue and attending a family reunion were both causalities as I hit a rough patch in my chemo. A trip to the emergency room was not what I had in mind for Labor Day weekend, but I AM “leaving normal” and with cancer I shouldn't be too surprised.  As I recovered, the couch became my refuge and water my only friend for a while, but I also had an outpouring of grace draw from – thanks to you! I'll say it again, my card wall will have to be expanded.

My family and I can't begin to thank everyone as we would like, so I hope this post communicates in part how very much we have appreciated your support and encouragement since my diagnosis. We are so undeserving, but so grateful!

About the Cancer & the Treatment

About the Cancer - Multiple Myeloma

Myeloma is a type of cancer that begins in the bone marrow. It is a cancer of plasma cells. Plasma cells normally make antibodies that help fight infection. Myeloma starts with a change to a single B cell. With myeloma, the change in the B cell causes it to become a myeloma cell instead of a normal plasma cell. As the myeloma cells grow in the marrow, they crowd out the normal plasma cells. They also crowd out normal white cells and red cells. Myeloma that is found in the marrow of many bones in the body is often called multiple myeloma. Most patients with myeloma have this form of the disease.*

The Treatment Plan:

Step One: 

Drug Therapy, including Chemotherapy

Four rounds (about a month each) taken orally and with infusion. I started my first treatment on 8-12-13. 

Step Two: 

Stem Cell Transplantation (using my own stem cells) with High Dose Chemotherapy and Radiation in Omaha (possibly December of 2013)

This is a condensed and general overview for a very complicated treatment. Suffice it to say, that this type of cancer is very serious, complicated, unpredictable and not curable at this point. The goals for me will be to try to keep the cancer at bay as much as possible, and therefore increase longevity and quality of life. 

  

*For more information, please visit the Leukemia and Lymphoma Society website

http://www.lls.org/