Gratitude and Dough

I found the comments of the last post particularly encouraging.  I want to thank each of you for the tidbits you offered.  It boosted my faith.

Globs of dough seem to be working their charms on me…again. 🙂  Yesterday I happily played in my kitchen.  I love making bread and rarely got to do that in the last six months.  During chemo when I was feeling good enough to be up and around I usually had plenty of other house work to keep me going.  Now I thank God for the strength and energy to do the extra things again.

Reality hits me at the most unexpected times.  Today, while looking at the sales of a local grocery store, I noticed that strawberries were buy one get one free (there might be a reason for that this time of year). 🙂  Automatically my mind started computing what stage I was at in chemo.  (When my white cell counts were low each round I always avoided fruits or veggies that could not be peeled or cooked.  It became habit for me to eat according to the level of my counts.  I ate normally for about four or five days after a treatment and then avoided specifics for several days just for extra precaution)  How wonderful to be hit broadside by this thought: I can eat strawberries whenever I want for as long as I want.  Yippee!

Same ole’ me; yet different

Currently, this is the longest I have gone without chemo since starting the crappy stuff.  Amazing!  I tire easily, but over-all I’m doing fairly well physically.

I wasn’t sure how much we would post after chemo.  I’m still not sure. 🙂  But as someone pointed out (ahem, John Mark) 🙂 our blog title is “In sickness and in Health.”  He laid out a very convincing argument why we should continue.  So here goes, at least for now.

Just like my husband, reflection seems to be my favorite past time lately.  I think too much.  But regardless, here are some of my thoughts as of late:

Somewhere back in the subconscious section of my brain I had the idea that after chemo I’d be this giant-of-a-saint!  I figured that with that kind of fire all the dross would HAVE to go.  Hah!  Haven’t told that part of my brain yet, but that was a joke!  I am still a woman with a fallen nature and I battle with it every day.  I still get annoyed over ridiculous things, and I still want to snap at my husband every now and then, and I still think evil of people sometimes and well, you get the point.  It was embarrassing to be surprised by this.  I should have known.

Chemo required LOTS of focus.  The petty things of life were momentarily smudged into the background, making me think they didn’t exist anymore and never would.  That was a joke too.

I also thought I would never be ungrateful again.  Those days I lay on the couch just longing for even one ounce of strength, I KNEW that if I would be restored to health I’d never again take it for granted.  Hah…again.

Well, this is sounding very cynical.  The fact is this: I have this paranoia of discovering that the last half year really didn’t count for much after all.  What really did it accomplish?  I certainly don’t want to have gone through that hell for nothing.  I WANT to have changed and grown and while I know I have, it’s not always evident.  I also know it’s not just about me.  I believe God had plans outside of me involved in this mess.

Here’s another fact: I’m not perfect.  Never will be this side of eternity.  And though I never would have said it, I think I had this preconceived idea that perfection logically follows hardship.  I need to be okay with God changing me one step at a time.

What I want to say next makes me very nervous because I’m afraid of being misunderstood.  And since I don’t fully understand it myself, I fear others won’t either.  Regardless, I take the plunge.

To be quite honest I’m still in the transition fog, finding my way back to normal life again.  It is not at all how I expected.  I’m not sure what I was expecting.  Maybe days filled with overwhelming happiness just to be done with chemo.  And while I AM incredibly grateful, I deal with a melancholy depression.  I don’t blame you if you think, “Hello!  You’ve been healed.  Why are you depressed?”  I can’t say except that maybe a deep valley physically brings on some emotional/spiritual valleys.  Makes me wonder what Job felt after everything was restored to him two-fold.  His contrast was starker than mine.

I feel lost.  I knew who I was before chemo, and I knew who I was during chemo, but I don’t know who I am now.  I have changed inside, but I don’t know how to apply that to the new normal.  I feel very much like what Frodo Baggins felt when he comes to the end of his journey and doesn’t know how to pick up the threads of a normal life again.

Did I mention that I like to think?

Retreat

Life is at full throttle. Cancer already feels a bit like a bad dream.

Last week Jean and I celebrated our first anniversary and the end of chemo with a trip to Tilghman Island on Maryland’s Eastern Shore. We had the same trip planned for our real anniversary, but after Jean’s hospital stay we decided to wait. So thanks to generous homeowners (whom we have yet to meet) and connections at church, we were able to rent an island home for little more than pocket change.

Tilghman Island is known as “the Pearl of the Chesapeake,” and the claim isn’t unfounded. Only a small canal separates Tilghman from the mainland, but even this gap disconnects it from a certain realm of reality and gives it a spirit of timelessness. One minute you’re driving along, eye on the clock, and a destination in mind. Then as soon as you cross the drawbridge, it’s a deep breath and a sigh–island time.

Tilghman boasts a rich maritime culture. Descendants of watermen, fishermen, and sailors still crab, fish and sail, and amid all the grunge of coastal activity lives an unpretentious dignity. It’s a classiness kept real by it’s closeness to nature and the sea. As my friend Guy Schum puts it, “It’s real class underneath a patina of redneck.”

Here are some pictures.

The House.

Her Highness on a Bike.

Her Swankiness by the Bay.

Gulls on a Dock.

Light and Ducks.

Foliage, Water, and Light.

A Dock in Water.

Us. We spent part of the day off the island in St. Michael’s. The shops are one-of-a-kind. As are the prices.

Callie the Labradoodle Greeting Customers at the Trading Co.

Shrimp and Crab Cake Harrison House Inn.

Waterman’s Rig.

Bay Bridge on the Journey Home.

PET results

Earlier today Jean and I met with Dr. Ali to discuss her last PET scan and life from here. All in all, the meeting was positive and the results were negative (positively so). Her lymph nodes continue to shrink back to normal size, and hardly any abnormal cellular activity is happening. This is wonderful news, and I think it means we’re really done with this journey.

But there’s still that stupid “hardly” disclaimer. The only slightly negative part of the results was this:

Contrarily, new mild FDG activity with maximum SUV of 4.1 is seen in association with a 6X5 mm lymph node adjacent to the left subclavian artery. The node is stable in size, but was previously ametabolic. […] The significance of this finding is unclear in light of the absence of additional hypermetabolic lymph nodes on this exam, and continued decrease in size of mediastinal lymphadenopathy. Continued followup is recommended.

Thanks to Dr. Ali and the internet we know a little bit about these terms. SUV stands for Standardized Uptake Value and refers to the amount of cellular activity going on in a lymph node. The higher the SUV the brighter it shows on a PET scan, and an SUV of 4.1 is only slightly brighter than normal lymph node activity. This reading most likely indicates normal lymph node variance, especially since it’s isolated to one node. It might also be fighting an infection of some kind. Dr. Ali indicated that he’s seen this kind of post-chemo variance in Hodgkin’s patients before, and it’s usually normal, benign activity. In his opinion, reporting doctors tend to over-analyze sensitive tests like PET scans, but he still wants us to repeat the scan in two months. Most likely nothing, but not completely, absolutely clear…

Maybe we were hoping for too much. Being declared cured of cancer takes time. We knew that. But we were anticipating a clear bill of health with 100% certainty, and instead we got one with 99.99% certainty. One niggling little location of miniscule, unknown cellular activity and two months of waiting for the final all-clear. Then what? Will we ever get to that elusive 100%? Will we never worry about cancer again?

It’s impossible not to feel some disappointment, but as Jean and I were processing the report over Applebee’s burgers and fries (how’s that for immediate celebration?) some simple things became clear:

1. Life is uncertain. Our bodies are prone to disease. And all the medical tests in the world cannot give us the future.

2. We need to live one day at a time. Not even two months at a time. You would think we would have learned this by now.

3. Trust in the power of God is a conscious choice.

4. Standardized Uptake Values cannot measure joy.

5. Neither can fludeoxyglucose activity defeat hope.

We are sensitive about making this too big of an issue. When we think about it honestly, based on everything positive about the scan, it would be wrong to communicate anything other than loads of hope.

Sometimes perspective is necessary, albeit uncomfortable.

God is good! Keep praying.

 

Endings

Ever since Monday we have been thinking in terms of lasts. Last chemo. Last Neulasta shot. Last PET scan. Hopefully this will be the last Saturday with Jean languishing on the sofa.

We both feel a bit lost as we think about the transition to a chemo-free life. Apparently even hard routines like chemo cycles give some level of security. One crappy week followed by one good week. Muscle through the first, enjoy the second. Can it really all be good from here?

It’s that feeling of returning home after a long trip. Everything looks and smells just like it did when you left, but something feels different. You notice what you previously overlooked–the ugly paneling, the familiar bed, the position of a book on the shelf. You are home again, but things have changed.

The metaphors mix and mingle. Life is journey, and this was a detour. If so, are we back on the main drag? Life is a tapestry. As we try to pick up the threads of a normal life, I wonder if this is the same piece we were working on six months ago. Trips. Detours. Threads. Ropes. Streams. Roads winding on and on through space and time, and we are caught in the flux and flow.

Enough already. Here we are almost done with all this craziness, and the first thing I do is sit around and introspect. The fact is, I am grateful. Deeply, deeply grateful. Introspection can be an act of worship, you know. The future beyond this weekend looks like a glittering city on a hill. I anticipate chasing the horizon again with Jean. I look forward to being just another young-married couple. It’s just that I don’t want to miss anything I was supposed to see.

Gratitude

I should have counted how many times I started crying today.  I’m a mess!  So many mixed emotions.  The goodness feels overwhelming!

All three nurses on duty today in that infusion center came and stood around me at the end of my time.  Lois, my main nurse, took my hand and pressed a small beautiful stone heart into my palm.  Then she spoke some powerful words into my soul.  One of the things she expressed was how they are sending a piece of their hearts with me.  I just started bawling.  How could I not?  What they don’t know is that I’m leaving a piece of my own heart with them.  They’ve done more for me than they even know.  They have shared in one of the most significant and life changing experiences of my life, and that is not a small thing.

Then I come home and soon after I find a beautiful gift bag with wonderful goodies in it.  Anonymously dropped off on our porch.  I decided I wasn’t gonna probe to find the giver.  You know who you are, and you blessed my day so much!  May God shower down on you ten-fold.

Then Ruthie (bless her heart) provided my dinner.  Another display of love and care!  It makes my day much more restful when I don’t have to be thinking about supper.  Ruthie, thank-you!

Big hearts all around me…

And here I sit on my couch like a cry-baby.  Tears running down my cheeks, because all of a sudden I realize all the things so many people have done for us during this time.  How can I sit here and just say “Thank-you?”  That’s all I can do for now…it’s humbling.  But I want to remember what others have done for us and I want to let it shape my own interaction with people…people around me in need.  I’ve learned so much!

I forgot to mention in my last post that my dear mother was with me once again over the last round.  I will say there is nothing like a mom when you are sick and especially my mom! 😉  When I was so low, she brought me food, did my housework, gave me a foot scrub (bonus! :)), and in general just lifted my spirits.  Thanks Mom!