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.
Sunday, January 27, 2013
Saturday, January 12, 2013
Praying for deliverance.....
Many have commented that perhaps I have fallen off the edge of the world.
Almost.
I have not had computer keyboard access and have great difficulty typing with one finger on my smart phone used by a dumb person..... So my communication skills are being stretched.
Today, I woke up feeling like half of me was missing - Scott is in the hospital again. I had been home two hours Thursday afternoon after spending the week in Columbus for my radiation treatments, and while laying on the couch watching DVRed NCIS, Scott calls me and says he is on his way home from school and was having pretty severe chest pains again. He said it felt like his gall bladder attacks but it was his left shoulder hurting this time, along with the front of his chest feeling like it had been kicked in.
I stood up, and said loudly "CALL 911!!" I'm thinking, #1 trouble breathing, #2 chest pain, #3 left shoulder pain - WHY ARE YOU CALLING ME???!!!
He said he could get home, and he did, and I dialed the phone for him to call his surgeon at the Cleveland Clinic to see if this could be "recent-surgery-related" and his surgeon said it shouldn't be, and to get to the nearest emergency room.
In all my travails with hospitals and emergency rooms and long doctor's visits over the years, I have learned a few things - always grab your "go-bag", and always, always, grab your cell phone plug.
I didn't do either. I just pushed him to the car and called Scotty to run us out two aspirin and continued to Samaritan. I called them on the way, asking them if there was a chance we could not have to wait in the waiting room like the last time with flu germs, and they met us at the door to take him immediately back.
Long story long - they admitted him after the usual CT scans and blood work, thinking that perhaps he had a blood clot.
Scott called me the next morning telling me it was his liver enzymes. The hospitalist called me as well and talked with me, telling me that he was looking at the "most obvious" with his liver enzymes continuing to get worse - that perhaps there was a stone in the bile duct or perhaps he had some liver damage from his recent gall bladder surgery, but that at any rate, he was dealing with liver inflammation.
I would almost have rather heard them say "heart-problems". I have seen quite a few animal livers in my lifetime, most of those fatty livers, but there's all sorts of things that can go wrong with your liver, and knowing the rudimentary issues with livers and liver damage of any type, and how that is mostly irreversible - my blood kind of went a little cold.
Plus, I was given strict orders on both sides of the doctor spectrum - from my doctors as well as from the staff at Samaritan - to not be there - that they were full of the flu, as every hospital seems to be at this moment in time. My errant white blood cells that refuse to regenerate to acceptable levels would not stand a chance......
I was a little frantic knowing from much practice that every patient needs a patient advocate - someone who can listen to the information while not drugged and act accordingly. Thankfully, the doctors that he had at Samaritan called me and kept me informed and told me his options and what they wanted to pursue. At the same time, his surgeon at the Cleveland Clinic was talking with me, and he stated that what they were doing was exactly what he would be doing if Scott were there.
Relaxation does not come easy to me at times like this - I am ready for action - but God delivered a peace to me on some levels.
And I admit, by the time a friend drove me to Columbus for my radiation on Friday morning and getting back early afternoon, I was tired and actually fell asleep and napped for a while Friday afternoon. After that, the house, our home, was so lonely.
My better half wasn't here, and wasn't going to be for a few days it seemed.
I have spent most of the night waking and crying out to God on how to pray - how to pray "enough, please Lord", or how to pray "give me more strength", or how to pray "have mercy on us oh God".
I had recently moved to listening to the Acts and the letters of Paul, and again yesterday a verse stood out to me, Acts 19:11-12
11 God did extraordinary miracles through Paul, 12 so that even handkerchiefs and aprons that had touched him were taken to the sick, and their illnesses were cured and the evil spirits left them.
That one portion of scripture at least, leads one to believe that there are evil spirits at times lurking about ones who are sick, and I am pondering that greatly. And wishing I knew one or ones that believed the whole word of God as well, and spent time praying for the sick.
The idea pops up often, and yet we don't seem to take it all that seriously.
***
At any rate, I am heartsick for Scott.
They did do a test late yesterday afternoon finding a stone in his bile duct, which has to be removed by a procedure that cannot be done at Samaritan.
The Cleveland Clinic is not taking any patients for a few days as they have been inundated with the flu. He is waiting to hear if Riverside in Columbus can take him.
His angst is compounded by the knowledge that he has used up almost all of his sick days with caring for me and my illness and treatments; and then his surgery in December. He knows that once his remaining three days run out, his pay will be docked, but possibly his insurance suspended, and that is causing him much anxiety with me in the midst of treatments.
He's not so worried about himself, but is frantically trying to figure out how he can get this done and get back to school asap.
It makes me cry when I hang up with him every time.
Worse, in all honesty, I was angry with him in the emergency room - he is not proactive for his own health, and after the Physicians Assistant told him he needed to stay overnight, he turned after she left and asked me what I thought.
I briskly told him he had not heeded one word of my advice since he started vomiting in October, so I wasn't sure why he was asking me now......
File that under "Things I will repent for all my days"........
***
We are weary of all things medically wrong. We are extended and tired and wish to be vigorous and healthy again. We cried together over the phone last night.
I cried out to God all night long.
There are others that have it much worse. I talk to them every day in the waiting rooms I frequent. Many found in waiting rooms have lost loved ones, lost insurance, lost homes, lost much more.
Being in this community of the unhealthy usually means you lose much that can never be recovered. It is a frightful place to be even when surrounded by loved ones that give you soft places to land.
I don't minimize our situation, but it does keep it all in perspective.
But we are weary to our bones of being unhealthy and long to be in warm sunshine again, working in the garden. Scott has gone to work sick too many days.
We wish to be at least able to crawl into our jobs. Walking in healthy and wise would be counted blessing upon blessing.
Our kids and Scott have talked me into going to a wee ones second birthday party today. It will hurt so much knowing that I can be there, but Popop cannot. We didn't make it to her first birthday party last year either - I had just started a couple of weeks of intense chemo and was in the vast wasteland of the chemically poisoned.....
***
One portion of scripture keeps playing in my mind, one portion has awakened me time and time again and I rely on that.
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
And better yet, Scott just called me and said his liver levels had come back down. All I can say is Thank You Jesus, Thank You Jesus.
Friends of ours have stopped in twice to visit him. Our son has been in and out with him, making sure all is good on that end where I cannot be.
I am so thankful. So as I cry out to God, I also bless Him and thank Him.
We covet your prayers. And I am so thankful that He sends those to fill in the gap.
Almost.
I have not had computer keyboard access and have great difficulty typing with one finger on my smart phone used by a dumb person..... So my communication skills are being stretched.
Today, I woke up feeling like half of me was missing - Scott is in the hospital again. I had been home two hours Thursday afternoon after spending the week in Columbus for my radiation treatments, and while laying on the couch watching DVRed NCIS, Scott calls me and says he is on his way home from school and was having pretty severe chest pains again. He said it felt like his gall bladder attacks but it was his left shoulder hurting this time, along with the front of his chest feeling like it had been kicked in.
I stood up, and said loudly "CALL 911!!" I'm thinking, #1 trouble breathing, #2 chest pain, #3 left shoulder pain - WHY ARE YOU CALLING ME???!!!
He said he could get home, and he did, and I dialed the phone for him to call his surgeon at the Cleveland Clinic to see if this could be "recent-surgery-related" and his surgeon said it shouldn't be, and to get to the nearest emergency room.
In all my travails with hospitals and emergency rooms and long doctor's visits over the years, I have learned a few things - always grab your "go-bag", and always, always, grab your cell phone plug.
I didn't do either. I just pushed him to the car and called Scotty to run us out two aspirin and continued to Samaritan. I called them on the way, asking them if there was a chance we could not have to wait in the waiting room like the last time with flu germs, and they met us at the door to take him immediately back.
Long story long - they admitted him after the usual CT scans and blood work, thinking that perhaps he had a blood clot.
Scott called me the next morning telling me it was his liver enzymes. The hospitalist called me as well and talked with me, telling me that he was looking at the "most obvious" with his liver enzymes continuing to get worse - that perhaps there was a stone in the bile duct or perhaps he had some liver damage from his recent gall bladder surgery, but that at any rate, he was dealing with liver inflammation.
I would almost have rather heard them say "heart-problems". I have seen quite a few animal livers in my lifetime, most of those fatty livers, but there's all sorts of things that can go wrong with your liver, and knowing the rudimentary issues with livers and liver damage of any type, and how that is mostly irreversible - my blood kind of went a little cold.
Plus, I was given strict orders on both sides of the doctor spectrum - from my doctors as well as from the staff at Samaritan - to not be there - that they were full of the flu, as every hospital seems to be at this moment in time. My errant white blood cells that refuse to regenerate to acceptable levels would not stand a chance......
I was a little frantic knowing from much practice that every patient needs a patient advocate - someone who can listen to the information while not drugged and act accordingly. Thankfully, the doctors that he had at Samaritan called me and kept me informed and told me his options and what they wanted to pursue. At the same time, his surgeon at the Cleveland Clinic was talking with me, and he stated that what they were doing was exactly what he would be doing if Scott were there.
Relaxation does not come easy to me at times like this - I am ready for action - but God delivered a peace to me on some levels.
And I admit, by the time a friend drove me to Columbus for my radiation on Friday morning and getting back early afternoon, I was tired and actually fell asleep and napped for a while Friday afternoon. After that, the house, our home, was so lonely.
My better half wasn't here, and wasn't going to be for a few days it seemed.
I have spent most of the night waking and crying out to God on how to pray - how to pray "enough, please Lord", or how to pray "give me more strength", or how to pray "have mercy on us oh God".
I had recently moved to listening to the Acts and the letters of Paul, and again yesterday a verse stood out to me, Acts 19:11-12
11 God did extraordinary miracles through Paul, 12 so that even handkerchiefs and aprons that had touched him were taken to the sick, and their illnesses were cured and the evil spirits left them.
That one portion of scripture at least, leads one to believe that there are evil spirits at times lurking about ones who are sick, and I am pondering that greatly. And wishing I knew one or ones that believed the whole word of God as well, and spent time praying for the sick.
The idea pops up often, and yet we don't seem to take it all that seriously.
***
At any rate, I am heartsick for Scott.
They did do a test late yesterday afternoon finding a stone in his bile duct, which has to be removed by a procedure that cannot be done at Samaritan.
The Cleveland Clinic is not taking any patients for a few days as they have been inundated with the flu. He is waiting to hear if Riverside in Columbus can take him.
His angst is compounded by the knowledge that he has used up almost all of his sick days with caring for me and my illness and treatments; and then his surgery in December. He knows that once his remaining three days run out, his pay will be docked, but possibly his insurance suspended, and that is causing him much anxiety with me in the midst of treatments.
He's not so worried about himself, but is frantically trying to figure out how he can get this done and get back to school asap.
It makes me cry when I hang up with him every time.
Worse, in all honesty, I was angry with him in the emergency room - he is not proactive for his own health, and after the Physicians Assistant told him he needed to stay overnight, he turned after she left and asked me what I thought.
I briskly told him he had not heeded one word of my advice since he started vomiting in October, so I wasn't sure why he was asking me now......
File that under "Things I will repent for all my days"........
***
We are weary of all things medically wrong. We are extended and tired and wish to be vigorous and healthy again. We cried together over the phone last night.
I cried out to God all night long.
There are others that have it much worse. I talk to them every day in the waiting rooms I frequent. Many found in waiting rooms have lost loved ones, lost insurance, lost homes, lost much more.
Being in this community of the unhealthy usually means you lose much that can never be recovered. It is a frightful place to be even when surrounded by loved ones that give you soft places to land.
I don't minimize our situation, but it does keep it all in perspective.
But we are weary to our bones of being unhealthy and long to be in warm sunshine again, working in the garden. Scott has gone to work sick too many days.
We wish to be at least able to crawl into our jobs. Walking in healthy and wise would be counted blessing upon blessing.
Our kids and Scott have talked me into going to a wee ones second birthday party today. It will hurt so much knowing that I can be there, but Popop cannot. We didn't make it to her first birthday party last year either - I had just started a couple of weeks of intense chemo and was in the vast wasteland of the chemically poisoned.....
***
One portion of scripture keeps playing in my mind, one portion has awakened me time and time again and I rely on that.
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
And better yet, Scott just called me and said his liver levels had come back down. All I can say is Thank You Jesus, Thank You Jesus.
Friends of ours have stopped in twice to visit him. Our son has been in and out with him, making sure all is good on that end where I cannot be.
I am so thankful. So as I cry out to God, I also bless Him and thank Him.
We covet your prayers. And I am so thankful that He sends those to fill in the gap.
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