Tuesday, August 31, 2010

Lots of Time for Movies

As Ernie's energy begins to wane with a white blood count that is dropping, we find ourselves with alot of time to watch movies as we hang out at the apartment. This is the time when he must take extra precautions with hand washing, the neutropenic diet, wearing a mask, and not being around people. Monday his WBC had dropped to .7 and it will eventually bottom out at .1 in the next few days before it starts heading back up. This means he has no immunity to fight off infection. He takes antibiotic, antifungal and antiviral medication, but things can still happen. So here are a few of our recent views (Ernie is definately missing Nick and their "guy movies"...these are chick flicks):

Definately cheesy in parts, but somewhat entertaining with nice scenery and accents.

Ugh...a bad attempt at remaking Mr. and Mrs. Smith. Basically not worth the $1 at Redbox.

I enjoyed it the most out of the three we've watched, and laughed out loud at a couple of parts, but of course they had to have some dumb stuff in it too. Ernie was wiped out and slept through it.

If any of you have any suggestions for good movies, pass them along. We will have LOTS of time to watch them!

Thank you for your continued prayers as Ernie battles waves of nausea, a lack of appetite, and fatigue. Overall, he is doing very well under the circumstances, has had no mouth sores (we are so grateful for that!), and hasn't needed any infusions the past 2 days. They started giving one daily Neupogen shot at the Clinic yesterday to help those stem cells start multiplying. We plan to hunker down for the next 7-10 days and wait for that blood to start rebuilding!

The Lord is my rock and my fortress and my deliverer. I call upon the Lord, who is worthy to be praised. Psalm 18:2-3

Sunday, August 29, 2010

Nausea - From Yummy to Yucky

This is a food post and those of you who know me, know I enjoy talking about and posting pictures about food:). Well the week in the apartment started out in great fashion on Monday with a take out meal from Red Lobster...Walt's Favorite Shrimp, with baked potatoes and clam chowder. We figured it might be the only night Ernie would feel up to seafood, so we went for it and enjoyed every morsel. (We were so excited to dig in that I forgot to take a picture, so the on-line menu version will have to suffice)

Tuesday was going to be a long day at the Clinic, so I planned our menus and went grocery shopping while Ern was getting infusions. His appetite was normal, it was a cloudy overcast day, so chili stack was our dinner of choice and it hit the spot.

Wednesday we enjoyed using a bit more of the chili over baked potatoes. Really tasted good and I was proud of using more of my chili. Must have been hungry and ready to celebrate the stem cell infusion, cuz I forgot to snap a picture. (I also think I was so overcome by the smell of CANNED CORN, my mind wasn't thinking clearly!)

On Thursday, I got organized early and made homemade chicken noodle soup to simmer in the crockpot all day. Blueberry streusel muffins were a great compliment to the soup, and we enjoyed the dinner and celebrated the day!

Well I was real proud of myself for thinking of ways to use my extra chicken, and I made a nice chicken salad sandwich for lunch on Friday. Ernie however, was hit by his first wave of nausea Friday morning and sadly had ice chips most of the day.

The nausea has pretty much continued for the whole weekend, and now his menu of choice has become jello, crackers, popsicles or Italian Ice.

On the other hand, I had ALOT of chili to eat and continued with my plan for turkey chili cheese dogs. It really tasted good and I was sorry Ernie couldn't enjoy it with me.

Saturday and Sunday Ernie's lab work showed that he needed potassium, so we spent about 4 hours at the Clinic each day. He has had moments where pretzels, peanut butter crackers, and popcorn sounded good to him. When the Zofran doesn't control the nausea we use Compazine or Ativan, but boy, they totally put him to sleep within 15 minutes! We both agree that is still much better than feeling sick or throwing up.

We'll see what the next week brings on our transplant journey, but for the most part we are thrilled to be on the road to recovery from myeloma, and will endure whatever that involves. We miss our family, the grandkids, our friends and our church body, but feel your prayers and see their results every single day. Thank you more than we can express with words.

Be strong and of good courage; do not be afraid, nor be dismayed, for the LORD your God is with you wherever you go. Joshua 1:9

Saturday, August 28, 2010

The Transplant Clinic

Since we spend so much time at the Adult Bone Marrow Transplant Clinic these days, I thought you all might like to know a little bit about what it looks like and what we do there. It is housed on the ground floor of a beautiful tall medical building 4 blocks from the main Duke Hospital. I love that I can drop Ernie off right outside the entrance, and that there is a parking garage specifically for this building with special parking places for transplant patients. I appreciate the fact that everything is in close proximity and so well kept.

The Duke ABMTC is well known in the transplant community for its success as an outpatient clinic, and we are so blessed live closeby. How nice not to be hospitalized for weeks at a time while recovering from transplant, but rather to be able to go to an outpatient clinic 7 days a week for care, and then return to your apartment...home away from home!

On the way in to the Clinic, you must first wash your hands for 15 seconds, and put on a mask. There are two different treatment areas or sides in the Clinic, A & B, and both have a number of private rooms, and an open area with beds and recliners around the perimeter separated by curtains. The nurses' station sits in the middle of the room on each side. As you can see, it is very neat and CLEAN!

At first I wondered if we would mind the days when we aren't in a private room and are kind of "out there" with other patients. But you soon learn that you are all in the same boat, going through transplant of some sort, and it creates a bond of understanding and empathy. You see many of the same people each day, and can often learn a little about their journey, pray for them, and stay in touch. You see couples, or patients and caretakers, hand in hand, walking laps around the treatment areas. 17 laps means you have walked a mile and it is encouraging to see people up, moving, and trying to keep up their strength.

Our doctor, Cristina Gasparetto, has a primary clinical interest in myeloma and has received numerous honors and awards for her research. She is Italian, compassionate and knowledgeable in this form of cancer. We KNOW we are in excellent hands. Her Nurse Practioner, and our Coordinator, is Amanda Yopp, and she has been wonderful to work with...a Physician's Extender as they are called. She truly is the hands and feet of Dr. Gasparetto, consulting with her, organizing Ernie's procedures, answering our emails and phone calls, writing prescriptions, and examining Ernie. They are both smart, beautiful women who are taking great care of Ernie. (Dr. Gasparetto's eyes were closed, but it was the only picture I got).

The nurses, social workers, and physicians that we have met are all wonderful, talented and dedicated to what they do. They are pleasant to us every day, work so very hard, and know what they are doing.

And lastly, we have been pleasantly surprised twice at the Clinic when Music Therapists quietly played for the patients as they were receiving treatment. First was a woman playing the dulcimer...we have always been fascinated by this instrument when we see it at the NC State Fair, Village of Yesteryear. Second was a woman playing the mandolin and flute, and we could even request what we would like to hear. What a nice touch to soothe and calm one's spirit.

The Clinic is about 7 minutes from our apartment, and we spend anywhere from 2-5 hours there a day. Patients are weighed, taken to a room, bed, or recliner, and prepared for labwork. Blood is drawn and then we wait (this is when many walk) to see what the next step is going to be. Many walk pulling their IV stand along with them, and others sleep, watch movies, work on laptops, or read. Caretakers go get food, ice, and blankets, and generally help however we can, and entertain ourselves in the meantime.

We certainly are grateful for the Duke ABMTC and the many fine people who work there.

Beloved, if God so loved us, we also ought to love one another. I John 4:11

Friday, August 27, 2010

Stem Cells and Canned Corn?

Wednesday, August 25th, will forever be special to us...it was Ernie's Day Of Transplant (DOT), or 2nd birthday as the nurses like to call it! 4 million of his healthy stem cells were thawed and put into two separate syringes for infusion through his Hickman catheter.

What joy filled our hearts as the reality of a new beginning sunk in. The Melphalan chemotherapy which he received on Tuesday kills, but the stem cells given Wednesday rebuild, giving Ernie a clean start with healthy, normal, new blood cells.

On a lighter note, one of the side effects of stem cell infusion is a strange odor emitted by the patient. This comes from the preservative used when they freeze the cells. The odd thing about it is that the patient can't smell it! We were told that some believe it resembles the smell of canned corn and BOY WERE THEY RIGHT!

I couldn't detect a smell until we were in the car heading back to the apartment, and from then on there was no getting away from it. There could be worse smells for sure, but what made this so bad for me is that it is the one food I still can't eat because I got sick on it when I was expecting Tara. Yes, it happened almost 30 years ago and woah did it bring back memories. It seemed to be pouring out of every pore in Ernie's body and he couldn't smell a thing! The whole apartment smelled like canned corn and burning a candle for hours didn't do a thing to change it. We headed to bed and I prayed it would be better the next morning and...it was! Barely detectable now. Just a fun fact about stem cell transplant that I sure won't forget.

Thank you all so much for the many prayers you have lifted up for Ernie throughout this important week. His body has handled the whole process amazingly well and we are so grateful. Fatigue is the main symptom he is feeling right now, and that is totally expected, but he has had little to no nausea...a huge answer to prayer!

Wednesday, August 25, 2010

Wordless Wednesday - Mr. Clean

Home Away From Home

On Monday evening we moved into our home away from home for 2-3 weeks, a furnished apartment in Durham. We were pleasantly surprised to find it large (2 bedroom, 2 bath), well furnished, clean, and convenient. We feel blessed to be staying here, rather than in the hospital, and are so thankful insurance covers it as part of the transplant process. It was definitely a role reversal for Nick to be moving us in and then heading home...we all agreed it felt weird for sure! Anyone curious to see what it looks like? Well, let the tour begin...

We are on the first floor corner, bottom right in this picture. There is alot of shrubbery and everything is really well kept.

We were surprised by the two dead bolts...welcome to Durham!

We have a nice screened porch...furniture is an additional charge though, so no sitting outside for us.

Nice master bedroom with 'Dream Bedding'...white soft sheets and duvet with down alternative blanket.

Of course we brought our SITG signed banner and hung it right in the living room...we love it and find it so encouraging!

We also brought a ribbon so we could hang each of the hearts Ernie reads from the encouragement jar. They hang right on our bedroom window so he can look at them often.

Our kitchen has all the conveniences and we were surprised to find that the utensils, pots, pans, coffee maker, and blender all appeared to be brand new! The washer and dryer are in the room right off the kitchen.

This is how we eat...Ernie standing and me sitting.

Of course we needed wall art and Nathan and Natalie provided that for us!

We think this apartment will do just fine as our home away from home, but of course there is no place like our real home and we sure will be thankful to get back to Wake Forest, our family, friends, and doggies!

Tuesday, August 24, 2010

Hair Today, Gone Tomorrow

I had several options for the title of this post: "Hair today, gone tomorrow".....or "Look ma, no hair!".....or how about "Patches McGuff". Well, you know the one I picked. Most of you would recognize me looking something like this:

I lost the mustache a while back, and Nick and Jamie have been cutting it shorter and shorter, but thanks to the chemo treatment, my hair has begun departing for a better place I guess.

Sunday we did not see much hair loss, but come this morning, well, the pictures tell the story:

At this rate, by Friday I won't have to invest in shampoo! Tonight we will go with no guard on the clippers to shave off as much as we can so it won't look quite so patchy. To lose one's hair temporarily to destroy the myeloma is an easy choice.

Thank you all so much for the love, concern and prayers. We love you!

A Girl who LOVES her Grandpa

What a wonderful time we all had this weekend just being together! But I can assure you that there was one little girl who loved her time with Grandpa more than anyone else. After not being able to see Grandpa for almost 3 weeks, Natalie was counting down the minutes until we were going to Grandma and Grandpa's house. She changed into clean clothes, she scrubbed her hands, and though she was reluctant, she wore the hospital mask...all so that she could snuggle with Grandpa (and do one of her favorite things: play on his iPhone!):

When it was time for dinner, she said, "I don't want to eat. I'd rather stay here with Grandpa." And it wasn't until I assured her that Grandpa was getting up to eat too, that she came to the table. We all sat down and Grandpa came over to complete our circle, as we held hands to pray. As soon as he grabbed her hand to pray, Natalie looked up at him and said, "I love you Grandpa." It was the most innocent, unsolicited, genuine statement of affection. And it left not a dry eye around that table!

There are many things that Natalie loves, but one thing is for sure: She is a little girl who absolutely loves and adores her Grandpa!

Monday, August 23, 2010

Send Off Dinner With Family

It was so good to gather as a family once again, after a few weeks of isolation in preparation for the stem cell harvest. Now it was time to say goodbye for a few more weeks while we move to Durham, have the transplant, and wait for Ernie's blood to basically start from scratch and rebuild. Leah and Kyle came in town to meet their new nephew (on the Guenther side) and joined us for our special dinner Saturday night. Grandma joined in the fun as well.

Ernie was so excited to be able to spend time with the family and see our grandchildren again! (Mask came off only to eat)

Masks were definately the order of the night, and even the Nats got in on the fun!

After a delicious steak dinner we enjoyed our new favorite dessert...Pioneer Woman's Apple Dumplings (add a scoop of vanilla ice cream while serving)!

What a wonderful time we had! We look so forward to getting through the transplant process so that we can enjoy many, many more family dinners together!

Sunday, August 22, 2010

Biding Time in Durham

These are some of the foods Ernie will hopefully be enjoying in Durham. He loves anything cold, so popsicles always hit the spot. And then there are Cheetos...for some reason they are something he is really craving right now. Hard candy helps with dry mouth, and of course, who wouldn't love Dove chocolate!

'Words with Friends' is something we both love to play...basically it's Scrabble on our phones. We sit for hours playing one another, along with other family members and friends. It really helps to pass the time while waiting...which we do alot of lately!

Laptop, webcam, Encouragement Jar, 2 books that Nick thinks he would enjoy. Ernie will spend hours working in his laptop, writing and answering emails, and checking the kids' blogs. He loves picking a new note out of his jar each morning and his heart truly is encouraged by every one of them. And books...well we'll see. He doesn't do much reading apart from things on his computer, but Nick hopes he'll start.

Time for tea! That's what I hope for...less coffee and more tea. Just brings me to a place of relaxation and my favorite color is red, so I love my cup and teapot.

Thank you notes. I love handwritten notes and there are so many people I want to thank for Standing in the Gap. Unfortunately I don't have a record of all who purchased raffle and dinner tickets, but for those who donated that I do know about, hopefully you will receive a thank you note.

Watermelon. This just tastes really good to Ernie right now, so we will be sure to have plenty of it on hand!

My Transplant Handbook (never leave home without it), Bible (my daily bread and source of strength), Journal (so much happening that I want to record), 2 new books (not a reader but am going to try), and yes...Weight Watchers point counter, food tracker and motivational reading (sadly I seem to be finding all the weight Ernie is losing).

Yarn and knitting needles. My Mom taught me to knit last night and I have started a "Prayer Shawl". This is a ministry where the knitter prays for the breast cancer patient who will be receiving her shawl. I have always wanted to learn to knit and thought it would be a great distraction while sitting and watching Ernie sleep during treatment.

Nick got us a subscription to Netflix, so we all have enjoyed a number of movies already... right from the comfort of our own bed!

Of course there will be lots of traveling back and forth from apartment to clinic, lots of lab studies and different medications and infusions, and hopefully lots of rest and sleeping for Ernie. We'll see what else we can find to do, but for now these are the things we'll be sure to bring along!

Thank you again for your prayers on this journey. Eight months ago this was our goal...get to transplant! We can hardly believe the actual day of transplant is almost here and we are so very grateful.