Everyone, with deep concern, keeps asking me how radiation is going. I can't help myself with my answer - "it's all one big party!!"
Honestly. The folks at the Stephanie Spielman Center could not have set my radiation time at a better moment in time for me - I have met such wonderful women, made friends, and we laugh like hyenas over everything. Getting undressed in front of half of Columbus for however long your treatment has been? Laughter. Getting fitted for bras? Laughter. Showing each other our hair growth? Laughter. We talk about this spring and summer and what everyone plans to do. You might find it difficult to meet a roomful of women more excited about spring this year anywhere else in the continental United States.... We've exchanged names, phone numbers, email addresses, and hope to keep in contact.
We have all come through the valley of the shadow of death, and we could not be happier about it all. And even though I am starting to feel the effects of the radiation finally, the fatigue and skin sensitivity, it still all seems like I am going on a picnic at the end of a long, long, journey.
I know there are those eyeballing the whole radiation route, knowing it's in their near future, and my only advice is to not worry about choosing your time, but instead choose your waiting room mates!! I mean, really. It's been a joy. All through chemo I didn't get to talk to other fellow sufferers. The chemo setup at the Stephanie Speilman Center is that the first 40 women to show up get beds, in single rooms. It's quite nice and setup to accommodate your travel mates and all, and there is a nice feeling knowing all of your symptoms are not heard all over the chemo ward like they were at OSU-Phase One Study Drug ward when I started, but you don't see the same women each week, nor do you really have a chance to talk with them at length. And that's ok, you need to be able to discuss in depth with your chemo nurses what has happened and what will happen...... And honestly, you don't feel all that much like talking. And even more honestly, you don't feel all that much like hearing other's stories - you focus a lot on getting through your treatment, because that's about all the energy you have most days.
But there is no being apart from other "fellow-journeyers" in radiation. We sit together and talk, and laugh and plan things to do with our lives.... That seems to be all the rage in that room, after not knowing for a while if you had plans to make... And can I say, they are so dangone good at accommodating patients. Running early? No problem. Running late? Don't stress, we'll get you in. All it means, is that you meet five more women going through the same thing.
***
I do have to admit I have developed a good case of "treatment envy". Again, the last several weeks /months, I have heard the word *metastatic* used in a sentence with my name attached a few too many times. That word burns my ears every time I hear it.
While talking to these ladies I ask how long they have been in treatment - they respond with "May". "July". "September". And I have to work really hard to not have my head swing around and say "WHAT???!!!" By far, with the women I have met, I get the award for the longest time spent at OSU/JAMES CANCER/STEPHANIE SPIELMAN CENTER. That's a line I didn't want to be standing in.....
But apparently, I hold an advantage in that I don't have to work while going through this like some do. That means I don't have to wear some necessary clothing pieces that the work-world kind of demands.... Also, I can wear whatever clothes I want to wear however I want to wear them - like turning a nice soft 100% cotton long sleeve t-shirt wrong-side-out so the seams don't irritate my skin. While talking to the other ladies, as my fatigue has started, I don't have three teenagers at home demanding time, effort, and everything that goes with keeping up with children. I can go to bed at 7pm, and no one cares.
So even though I have talked with God some about the length of my treatment, and knowing it could have been shorter if I had demanded an ultrasound with my first lump, I'm ok. And maybe even have it easier with radiation than some of the ladies do that have to wear things and do things that cause a lot of skin irritation.
If the damnable word *metastatic* would just go away, I would be feeling even better.
All that to explain my next adventure: I am in a new study. This one is not the same as my last study drug - that study was a drug my own oncologist had developed, of which I was in the very first stage of testing - making us closely tied to each other for life, both wanting and needing good outcomes.
The new study drug is a world-wide, double-blind study. Meaning that neither the patient nor my doctor knows if I am getting the drug or a placebo. After meeting with my study coordinator last week, we are leaning towards the fact that I am getting the real drug, due to my side-effects.
Apparently, only God and a doctor somewhere in a faraway land, knows for sure.
I told my doctor when she was encouraging me to jump into this study in December - because it would enhance my chances of not "recurring" even more - that even though my brain has been quite uniquely on a beach in never, never land, savoring it's last few months of not having to do like actual math or problem solving or anything, I told her that I had added up all my chances I had been hearing over the past 13 months of treatment and I was now standing at 158% for non-recurrence.
I raised my eyebrow at her while she laughed and told her my brain was telling me I was in good standing suddenly. And that I was banking on those odds. Because those are nowheres near the national averages for this *disease*.
But I will take what I can get, and for now, know that I feel better than I have in a very long, long time.
And oddly, just a sidebar, this time my hair is growing in mostly black...... Last summer, it grew in almost all white. Go figure.
***
God and I talk a lot on these long drives. We talk a lot about suffering and how to stay on the journey and how to find the gold in it all. He reminds me that His people have suffered immeasurably from the beginning of time, and more so, His own son suffered a shameful death, all under His care.
We in North America, especially those sitting in pews, don't like to discuss suffering. We like to put labels on it like "complaining". Or "not trusting enough". Or the best one I have heard to date "just don't think about it". Which I found kind of difficult this last chemo blast go around. When one lies in bed for several days at a time, you find a little difficulty in ignoring it all.
And yet, God keeps pointing out to me time after time after time after time, while I listen to the Bible in big huge chunks because that's the way my brain is rolling now, that His book is full of suffering. And full of how those that suffered, dealt with it all.
I can tell you they didn't ignore it. They didn't label it. They didn't think they were not trusting God enough - in fact most times it was the opposite - never did they trust God more.
If you have time, along with the verbal Bible, this is my night time buddy this last week - the last ten minutes rip me up every time..... It might be better titled "What to Think of Suffering"....
http://www.followtherabbi.com/guide/detail/corination
***
I wrote all of this before I had a phone call yesterday. My heart is heavy with concern for one that I hold dearer than life itself. I ask you to pray.
And everyone is asking for an update on Scott - he needs healing and prayer as well. His new doctor at the Cleveland Clinic says he should have had the procedure, when his other doctor sent him home..... Plus, we are dealing with some huge bills with it all, and please just pray that God can work it all out.
But after the phone call yesterday, my heart has stopped, waiting, waiting. I know God hears. And I know God is near.
And like all those fellow-sufferers found in the Bible - I cry out "I THIRST!!" Please, God Almighty, hear my prayer, for I thirst.
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