A Few Thoughts on Gratitude

Last night I was reading the private blog of a fellow Hodgkin's Lymphoma survivor who wrote, what I think, are some very provoking thoughts on positivity and gratitude.  After being in remission for some time, she just learned that she has relapsed.  Here is an excerpt from her blog...

"I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news.  There is a huge difference between being 'happy' and being 'grateful.'  The gratefulness piece is always in me. Always.  However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality is that more treatment will continue in the future.  I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves.  In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt.  Now, if I feel down for a few days, I let myself.  Usually after a week or two, I find myself back on my feet again and moving.  I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations."

Now, I am generally a very grateful person - and 99% of the time a very optimistic person - but I have to admit that this girl is one step ahead of me because I've only just learned what she already has, that it is ok to let yourself feel down when you actually do...and to let yourself 'be' when you need to.  Sometimes it is necessary to experience those feelings, and then they pass and you move on.  Like she says, for me the gratitude and hope are ever present, but I've come to realize that it is not just ok - but healthy - to let myself experience the emotions of sadness or frustration.

Over the past few months of dealing with chronic Graft versus Host Disease (since my previous post), I've had a few of these moments as my strength has been sapped and my body has been changing in not-so-pleasant ways from two months of being on high-dose steroids.  It has been a frustrating two months, and Wednesday I was admitted to the hospital yet again, while the doctors try to figure out why my blood levels all tanked over the past week.

Yesterday they performed another bone-marrow biopsy on me...and afterwards I decided that I needed to reward myself, since it is such a painful procedure.  This is another good lesson learned - how to allow myself rewards - and so I walked across the street from the hospital to Starbucks and treated myself to an iced mocha caffe with extra whipped topping!  Yum!  Now, that is something to be grateful for!  Also, during the biopsy I just kept thinking, "yeah, this hurts, but at least I'm not cutting off my arm with a dull pen knife!  (Have you seen the movie, 127 Hours?)

So, in addition to those two, I'd like to share a few other random things that I'm grateful for (in no particular order):

- back porches and hammocks
- having a car that is paid off
- dental floss (i love that feeling of freshly flossed teeth!)
- Sunday breakfasts with Sherri and Pam
- spring flowers and a mom with a serious green thumb

- chubby babies - they're just too cute!
- being one of the few people of my generation who has actually benefited from Social Security, and not just paid into it
- today I'm not sore from yesterday's bone marrow biopsy
- CHOCOLATE!!!
- being able to encourage people
- wash -n- wear hair
- best friends, birthdays, ice-cream pie from Handel's, and licking the plate clean!

- the independence of being single
- joyful memories
- finding those perfect shoes that aren't just cute, but make your feet feel awesome...and then buying them in two colors!
- friends with campers who invite you over and feed you yummy camp food (Peggy)
- kids who innocently ask why that girl is wearing a mask, and parents who aren't afraid to give a real answer instead of embarrassingly shushing them
- new home office furniture that I will soon be assembling...it's like a big jigsaw puzzle and I love it!
- Jesus, who never changes and is the source of my gratitude, hope, strength and life
- my laptop, cell phone, ipod, Netflix, and HGTV
- living next door to my parents
- wonderfully supportive friends at work who check in on me and two years ago helped send me to Europe
- looking forward to traveling again
- my nurses at the stem cell clinic who always make me laugh and smile with their antics

It's certainly not a comprehensive list...I could keep going - fruit, indoor plumbing, clothing with elastic, eyesight - but I'll stop for now and just ask this...

What are you grateful for?

Woo Hoo!

This is short and sweet, and sans pictures...
But I have GREAT NEWS to share.  Today I received the results of the PET/CT that I had on Wednesday... and it is No Evidence of Malignancy!!!  See, didn't I tell you, great news!  :)  This is scan no. 2 since my allogenic stem cell transplant last July.

The only downside is that I have had a flare up of graft vs. host disease (GVHD) of the gut, which has unfortunately landed me in the hospital for the Easter weekend, so that I can receive some high-dose steroids to reign it in.  My doctor promises though that he will release me so that I can eat Easter dinner with my family on Sunday.  Bummer though that I am missing both Good Friday and Easter Morning services at my church.  That's ok...God's here too!

Happy Easter to YOU!

Valentine's Day = PINK!

I'm always looking for a reason to wear pink...afterall, it's my favorite - my signature - color!  And what better occassion to sport that happy color than on Valentine's Day.  Since the 14th just so happened to be on one of my days to visit the Stem Cell Clinic, I thought it would be a great excuse to sport not just pink, but the hot pink wig given to me by my hair-stylist friend Peggy waaaayyyy long ago when I first started chemo in 2007.  Even though I have about a half inch of hair growth now, I thought the wig would be the perfect antidote to the mid-winter blahs!

And it was a huge  H I T !    Now, I don't wear it often, because I don't like to attract such attention to myself.  But every once in a while, when I am feeling bold and brave, I will go pink.  Just walking into clinic, past the waiting rooms and other nurses, elicited quite the reactions!  What fun!

The nurse assistant Sandy and physician's assistant Zylphia were the first to see me.  From what I understand it had already been a crazy busy morning when I walked in at 8:30, and it was fun to watch them crack up and see the mood lighten a bit!

My nurse Linda, a cancer survivor herself, saw me next.  Her reaction was priceless..."pure sex" is what she called it!  She couldn't stop laughing about it and was excitedly anticipating my oncologist's reaction.  She always tells me that I'm his favorite patient, and knew that he would just love the wig.

When my doctor did come in for his rounds, everyone gathered around to catch his reaction.  It was great!  He laughed and laughed, and told me that it was a good omen because another patient of his was given a pink wig (not as neon of one, he was quick to add) and ever since she began wearing it she has been in remission.  That's wonderful, but for me the wig will get safely tucked back into it's storage spot until the next great occassion!  I already have my healing...

I also gave Dr. Agha a little Valentine's button to wear on his jacket lapel.  I told him he has to wear it all day today, and I think he was quite happy to do so!  I actually regifted it, as I just got it yesterday attached to the most beautifully decorated heart shaped sugar cookie from my lovely friend Pam.  Ohhh and it was so yummy too!  (The cookie, not the button!)  It didn't last till Valentine's day...not even close!  :)  Anyway, the button has a frog leaping over a bicycle and it says "I flip 4 you".  It is very, very cute!  I hated to give it up, but being that Dr. Agha is an avid bicyclist, I knew it was perfect and thought it would be more fun to make him wear it.  And it matched his tie too!

I got blessed by the Stem Cell folks too.  They had a little chinese take-out box decorated with candy hearts and full of sweet treats for each of the patients.  Sugar and chocolate always make me happy!  I had little surprises for each of them too...Valentine's inspired magnetic photo frames for the fridge, which I tied up in pink ribbon with pink nametags for each of the ladies.  Yay for spreading the love!

So, HAPPY VALENTINE'S DAY to you!  Spread the love, because LOVE is the greatest afterall!!!  (1 Corinthians 13:13)

Good News!

Hello Everyone!
Well, the world traveler has returned home and has some wonderful news to share with each of you!
Sherri and I arrived at home Friday evening after some flight delays due to poor weather. We were greeted by friends with silly string at the airport, drove home, and tried over the weekend to recover from jet lag and a 6 hour time difference. We went to church on Sunday, which was like returning home. It felt so awesome to be standing in church again, worshipping God. It was such an incredibly wonderful feeling and just so right and perfect. Pastor Thomas told the congregation in both services of Sherri’s and my return home from our European trip, and explained why the trip was necessary, about my upcoming stem cell transplant, and then invited me to stand before the congregation (in both services) surrounded by all the cancer survivors in the congregation, and they all prayed over me. It did my soul such good to be again surrounded by my family – my church family – after 6 weeks of separation. I had missed being in their presence as we together seek God’s presence. Truly, nothing can replace that.
On Monday morning (the 24th) I had a PET/CT scan scheduled at Hillman. Dr. Agha wanted to get this scan done prior to the scheduled Stem Cell Transplant in order to reassess the disease progression before admitting me on Wednesday the 26th, as planned. This morning, Tuesday the 25th, I had an appointment with Dr. Agha to review the results of the scan.
Dr. Agha and his team walked into the exam room smiling. He welcomed me back and asked all about the trip…where had I gone, what had I done, how did I feel, etc. I told him the various places and adventures that Sherri and I had gone on, and impressed him with the extent of the physical activities I had done, from hiking to kayaking, to rock-climbing, to canyoning, and everything in between. He asked me, rather pointedly, if I had drank any red wine. I assured him that I hadn’t, that I don’t like the taste of wine. He inquired if I had been taking any supplements or medications on the trip. No, I stated that I hadn’t. He did the rest of his typical routine, throughout which he and his team asked me a few more times about drinking red wine. After again confirming that I hadn’t had any, Dr. Agha sat down in front of me, stating that he had personally reviewed the PET/CT scan himself since the radiologist hadn’t prepared a report of it yet. Then he told me very simply that the tumors have begun to shrink. He said that although he isn’t a radiologist, he can read a scan and has done so many times, and that indeed, the tumors were smaller! He said that he wanted to wait for an official report from the radiologist before postponing the stem cell transplant, but that he expected the radiologist report to state the same and that he fully anticipated that a stem cell transplant at this time isn’t necessary. He said that his team would call me later this evening, one way or the other, and let me know the results of the official report, and whether I would need to be admitted to the hospital the following morning.
Around 10 pm tonight, I called the hospital answering service and soon received a follow-up call from Dr. Agha…inadvertently, the individual responsible for calling me tonight forgot…but Dr. Agha told me that he had indeed reviewed the radiologist’s report by that time and that yes, the tumors had shrunk! He said that we will not proceed with the transplant, that the donor would be put on a hold (so that he is still reserved for me if I do need him at some point in the near future), and that he wants me to wait two months and have a follow-up PET/CT scan.
CAN YOU BELIEVE IT!?!?!?
I believe that this is the beginning of the supernatural healing that has been prayed for by so many people. I believe that this reversal of the disease, this shrinking of the tumors, is God alone. I believe this, for one, because I have a personal relationship with Jesus Christ and through that relationship know that God is able to do anything, that He truly is all powerful, and that He truly is in control. (He doesn’t just take control when it isn’t given to Him, and He isn’t always responsible, but He is always able, and He is always bigger and greater than our comprehension.) Secondly, I believe that this is a miraculous healing because there is nothing else that it can be attributed to. The doctors are stumped and want to believe that it is because of some red wine (which I didn’t even drink!). It isn’t due to medical treatment, because I haven’t had any since January when I had radiation (and previous scans showed that the tumors grew and increased in number since then). It isn’t due to changes in my diet, because although I did try a special “Macrobiotic” diet for about 4 months, I ended this diet prior to leaving for Europe because I didn’t want to be restricted when on vacation. While on the diet, I had a PET/CT scan that showed an increase in the tumors. While on vacation, I indulged in sweets and other foods known to be foods that certainly don’t aid in eliminating cancer, but rather promote cancer. So diet is certainly not a reason to explain the sudden regression of the tumors.
All Dr. Agha could say is that sometimes diseases such as this will experience a spontaneous regression and a change in their biological state. True, but even that doesn’t state ‘why,’ but rather only ‘what.’
Judge for yourself, but I believe this to be God’s hand at work. And Praise God for it! Throughout these two years since being diagnosed, I have praised God continually. I do so all the more now! This is the work of God alone, in response to the thousands of prayers that have gone up on my behalf.
To Him who is able to do exceedingly, abundantly more than we could ask or think, to Him be the Glory!
I look forward to writing you another letter in two months!
Much love and blessings, Amy