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.
Monday, December 24, 2012
Gifts
I feel so smashed this morning, and it feels so good.
We have been on the road travelling to Cleveland and Columbus too much these past three weeks. We have been busy trying to get caught up a little bit here at home - Scott has done an awesome job of housekeeping this past year - but there were some things that just needed "done".
We've had poor health for so long, that these last few days of "feeling better", feel really good. And it feels good to work at something. My brain still has a lot of cobwebs - still a lot of confusion, a lot of "not-knowing" when I should know things - but it is working better.
Our son got us a shared, what I call "walkie-talkies" on steroids, and he texted his dad this morning telling him he had hid his walkie-talkie in their Christmas tree. Popop readily obliged and started talking - saying things like he was the Christmas tree talking. The twins were amazed, scared then finally knowing who was really talking - scolded him. It was all pretty hilarious.
So life seems to be full of the normal, ordinary pleasures again.
Plus, we feel as if we have just been handed another gift.
My physical therapist had instructed me a couple of months ago to massage my incision site to release scar tissue. I had been doing that - doing everything/anything to give my arm and muscles some relief when they had clamped up tight the week after my fourth chemo treatment - and while doing that massage two weeks ago, I... found... lumps... on... my... ribs.
Life slowed, then stopped again.
As I had been doing this a couple of times each day, I was pretty familiar with how everything should feel, and I knew that first lump had not been there the day before. Then there were two, then three. All on the bones. All not painful. All making me completely sick in my soul again.
At that time, I was just three weeks out from my last chemo, just barely getting back to eating and feeling better some, so the logical side of my brain said it was too close to chemo to be a bone cancer lump. The side of my brain that is not so logical, just freaked out.
I couldn't even tell Scott at first - he has been too sick with his gall bladder and trying to work to have anything more put on his plate. I didn't tell my kids at first. It's too close to that same time of year again.
I was scheduled for my radiology set-up CT scan in two days, so I called my oncologists, and we all agreed we would have a look at the scan. My radiologist-oncologist, examined the lumps, asked me if I had looked at them in a mirror - I said no - and she said she could see them easily through my skin and that they were substantial; then found another one on my sternum that she was more concerned about.
She promised me she herself would show me the CT scan when I was done and go over every little rib in my body together.
It was a long appointment - I was there for three hours. I now have four dot-tattoos, road mapping where to place the radiation when I start. After the scan, she called me into the "look" room, and showed me my bones. She told me a radiology prep CT scan is not a diagnostic scan, but that my bones looked good, and that I should tell the part of my brain that was freaking out, that the logical part of my brain was correct - and not to worry.
She showed me a few other things that were of concern, then told me to go home, breathe a big sigh of relief, and live again.
I did -- until my oncologist called and said she wanted a full body scan done asap.
The logical side of my brain knew it had looked at my bones with my very own eyes, and was satisfied, but the freaking side of my brain was full of questions, and full of dread again.
So many times this year, I've had a chance to realize that my life could be short. I've had a chance to review, and repent, and be joyful all at once realizing what blessings I've had.
I took time to mull over in my brain what my response would be if I were told I had to do more chemo. I've had nine months of chemo this year, and it has altered my brain, altered my thinking, altered my body, altered my health - and - altered who I am.
I was not sure what my response would have be if told that I needed to step into that brutal, fenced in fighting arena again.
I took time to mull over in my brain what my response would be if I was told I would be meeting God soon.
It didn't help that my scheduled whole body scan was on my "anniversary date" - the same day I had found last year that I had cancer.
Four years ago, Scott had a life threatening illness and then surgery that same day.
December has not been a traditionally good news month for us.
It was a long several days of reflection, and crying before God, and giving it over to Him time and time and time again.
And strangely, there was joy in it all. If this was "my time", I knew that even though there were a lot of things not accomplished, a lot of things left undone, a lot of things not said, a lot of things that would be missed, I also had a deep knowing that I had received more in my lifetime than I could ever be properly thankful for - I knew that God had blessed me with things that others beg Him to gift to them.
In some sense of it all - I could lose everything in a moment. In another sense of it all - I had been given everything and more.
My brain and my soul agreed on it all.
***
My sweet doctor had put in a rush on the whole body scan - so after my dye injection at OSU at 8:30am Friday morning, then my actual scan close to noon - they rushed the results to her at the Center - she had answers by our appointment time at 2pm. God bless that woman - she, as well as I, did not want to be placed once again in the "holiday-skip" - that time of year when medical staffs are cut in half with everyone taking vacation time - it's the most difficult time of the year to get in, get tests done, and the worst time to wait for and get answers.
She gave me a big hug when she walked into the exam room. She said hello to Scott, who has been notably missing the last couple of weeks as he has used up too many sick days. She then told me that my scan turned up the same thing as my first and second scans - a couple of bad discs in my lower back - and arthritis - and NO CANCER GROWTHS!
She thinks it is scar tissue. I'll take that.
My body literally shuddered with relief. It was scary, it was a time of faith stretching, it was soul searching and soul readying - it was all of those feelings, tense muscles and recoiling, afraid of the news, yet ready for whatever may come - it was all released in one sentence out of her mouth.
Scott and I smiled widely with relief.
I asked her how I should determine in the future what to be concerned about - and she answered "you don't - you come to me!" She said she didn't know until she got the scan herself.
My brain told me that God was saying the same thing - "you don't know - you come to Me!"
***
Throughout this whole dilemma, when I was finally feeling better in December, I decided it was time to renew my drivers license that had expired on my birthday in November.
I was denied.
They told me at the BMV that my Social Security name did not match my name on my expired driver's license. Therefore, I could not renew. I was told if I did drive and was to encounter a police officer for any reason, like say speeding or some such thing, I would be "taken in", and my car would be towed and impounded. No questions asked.
Then they dropped the big bomb - I had to go to the nearest Social Security office and get my name straightened out.
In my brain there are some things in life I deem more pleasurable - like poking an ice pick in your eye, or pulling off fingernails. I had tried several times after our house fire in 1995 to correct this problem and it was not *correctable* for a lot of years...... I had just given up and my recent tax returns reflect that - my name is hyphenated with my maiden name to get them accepted.
It's difficult to reflect God in such times.
Soooooo........ last week, Scott was finally able to pretend like he was driving me, and off we went to our nearest SS office more than 45 minutes away, early one morning.
Upon walking in the door, Scott was immediately told by the security officer to either dump his coffee - or take it back out to the car - there was no food or drink allowed in the building. And according to their tv announcements - no cell phone use as well.
We dutifully took our number, sat down, and waited. Scott complained a little too loudly about his coffee, as it was his first coffee since his surgery and he had intended on enjoying it if nothing else that day..... all the while, my intellect was telling me that we were stepping down into the abyss once more, and the pointers all seem to be pointing to the fact that I might never drive legally again.
Then we were called up and surprises of surprises, encountered a most pleasant young man. And helpful. And kind. This was NOT the same Social Security office that we had navigated trying to get five new identity cards seventeen years ago. They were helpful. He gave me a piece of paper to enable me to get my license.
He sent me to the Richland County BMV. We went in, took a number and sat down. They smiled and said their computers had just gone down and they had no idea how long it would be. While I re-positioned myself for the long haul, half of the room cleared out. Then, miracles of miracles, the computers were back up again.
I was out of there with a drivers license in less than 30 minutes. We went back to SS to show them my new drivers license so they could correct the name error (I know - crazy, huh?) and it went incredibly smooth. Incredibly well. Incredibly, we were out of there all said and done between the two agencies within three hours.
That is unheard of. I'm still in shock over it all. I have literally spent hours and hours and hours and days and days trying to correct this problem over the years. I have notes attached to our marriage license. It appears according to those notes that I was close to being suicidal after a "talk" in 2004. So, I am extra relieved to note that even though I was there the day of our wedding, now Social Security admits it as well......
***
We are not anyways near ready for our feasting and family tomorrow. But, I've decided we have done what we could, they are all helping and bringing something and cooking and baking, so we can just cozy down and wrap some presents tonight. And maybe actually put some lights on the tree that Scott put up before his surgery.
I didn't get any Christmas cards out, even though we have greatly enjoyed getting them and hearing from a lot of folks we don't get to see very often.
My shopping has not even happened this year. I couldn't even get out to the grocery store the first week Scott was home - I had a few appointments, he wasn't feeling well, so we just continued eating tomato soup and canned tuna, which is what kept him alive the previous six weeks, and I had subsisted on it quite a bit this year, so it was all good.
Friends of ours brought us out a meal, and it tasted so good. My taste buds are awakening again, Scott was feeling some better, so it was just the perfect low-fat food, at the perfect time. We ate and enjoyed it immensely.
Everything has been put under a microscope in matters of importance. Some things just aren't so important any longer. Clean bathrooms rank high in our house, this past year especially, and other than that, the rest is all ok.
I don't even have a wreath on our door. I don't know where they were put last year in the garage.
But we are overwhelmed with God's grace and mercy washing over us. We are resting in His grace and peace. He has given us so much - we have each other, kindnesses, goodness, the taste of good food being introduced into both of our diets again, and the greatest gift of all - His presence.
And, I sincerely hope I would be saying that even if my test results came back differently.
We don't know what the future holds, but for now, we are resting in His care. In a little over a week, I start radiation and the drives to Columbus daily or staying over, so we hope to savor this time together, both recovering together.
We plan to have a Merry Christmas tomorrow with everyone. We plan to let them all spoil us. We plan to just not worry. We plan to remember how good it is to have loved ones to help and support and care.
We plan to listen to five little girls screaming with delight, playing, crying, playing some more - and we can't wait.
Scott's folks are excited to give the girls their gifts - each year they get them all incredibly cute dresses. We are excited to give our gifts in the spirit of love like never before. (thank you Amazon.com and free delivery!!) The girls are so excited about giving to one another. There have been so many "secrets" and planning on how to give, what to give, and card making, and lavished love over it all.
Scott and I are so very tired, but so very happy at the prospect of being all together and being happy. Money is a side issue on those days. Snowy roads don't matter so much. Laying on yet another narrow table being radiated once again is just a short-term dim memory. Life is now, today, and there will be plenty of time when it's all over to be too tired to enjoy it all.
It will be the most extraordinary, simplest of holidays ever.
And we think it all so great to be here joyfully enjoying it all.
Thursday, December 13, 2012
Scott news
Just a short note to let folks know that Scott is !!**home**!! His gall bladder surgery went well today, despite his surgeons original misgivings about the scar tissue build up that he has from his previous two surgeries. He was able to go in a different "route" - just a few inches east of his 18 inch long scar - and still remove it laproscopically, and then as a bonus, also cut two lesions from his scar tissue that had attached to his intestines, possibly causing some problems as well.
It was all good.
I cannot tell you how happy I am to have him home tonight and how blessed I feel. Scott, not so much right now, but maybe by the weekend he will be feeling better.
And, I know a lot of you were concerned about me possibly driving today, and I feel doubly blessed to say our good friend, and house pastor, Jim, drove us. It was a pleasure to have him there today to just sit with - someone else who loves Scott as well. We left pretty early this morning - he was here just after 5am - and said he didn't mind at all. (And the only thanks he got was that I bought him a long awaited coffee....)
Blessed art thou, Lord God our King, who breathes life into the sick.
It was all good.
I cannot tell you how happy I am to have him home tonight and how blessed I feel. Scott, not so much right now, but maybe by the weekend he will be feeling better.
And, I know a lot of you were concerned about me possibly driving today, and I feel doubly blessed to say our good friend, and house pastor, Jim, drove us. It was a pleasure to have him there today to just sit with - someone else who loves Scott as well. We left pretty early this morning - he was here just after 5am - and said he didn't mind at all. (And the only thanks he got was that I bought him a long awaited coffee....)
Blessed art thou, Lord God our King, who breathes life into the sick.
Monday, December 10, 2012
Bone piles
Beth Shemesh.
I have listened to one particular teaching for almost two weeks. I should have it memorized by now, but my brain's not rolling that way at this point in my life.
After wandering for forty years in the desert, Moses - who knew he was not stepping one toe into the Promised Land - once again implored the people with a long speech that some say took 39 days, to obey God and do what He told them to do. The people agreed and said "We will do what God commands!"
When the tribe of Dan went into the Promised Land, their area of tribal inheritance was next to the coastal plains, which was full of Philistines. A whole land full of Philistines about, oh, three miles away. They were in a constant battle with their close proximity neighbors and were basically holding the door, being the "gateway" to the rest of Israel.
The "battle" seemed to take on two fronts - one was of course physical and that included full front on battles or if you were travelling with a small group of people and were suddenly caught by the raiding parties of the Philistines, you might have wished to be turned over to the Shawnees in North America.
But the battle had another front as well - it was the clash of cultures. The Israelites had been wandering for over a generation of people in a wilderness and the tribe of Dan were especially set up for a close and in depth study of what looked to be a very sophisticated culture just next door. The Philistines in my mind never got past the cave-man-looking-Goliath idea - and yet archaeology says they were at that point more sophisticated than the Hebrews. They used iron. Their paganism allotted them a lot more fun. They just had better "stuff".
How could good God fearing folks keep looking away when - wow - there was a lot of "stuff" going on right down the road - you could look and just see it all - it was that close. Some pagan temples had Amsterdam "freedoms" beat by miles and miles.
They were stuck between the coastal plain three short miles away and the Judah mountains right behind them. On the coastal plain were the powerful Philistines. Dan could not retreat, and constantly faced the pressure of the Philistines.
It got to be too much. After a bit of time the tribe of Dan decided "OIY! we cannot continue to do this", so they sent out spies to another city in the mountains, which is where a lot of the Israelites had fled for protection from their not-too-happy new neighbors.
The spies landed upon a city north to Mount Herman, Laish, and the whole tribe picked up everything, slaughtered the residents of Laish and moved in - leaving their tribal inheritance.
Dan moved from being the cozy neighbors of the Philistines, which they thought wholly too much to bear, to being the first city upon entering Israel on the Via Maris, the major trade route of the day basically connecting much of the then world. And northern armies marching along to invade anyone they took a fancy to take....
Kind of like moving from Cinnamon Lake to Polaris Parkway. Or moving from Polaris Parkway to downtown Jerusalem.
I don't know what they were thinking. To leave their God-given inheritance - the one thing that God gave them - thinking they couldn't take the campfire heat, to an iron furnace stoked and red hot.
But this is the part that I love and cannot get past without pausing it and playing it over and over: "The point that the Jewish Rabbis make on this bit of history, is if you don't work and struggle where God places you, no matter how good it looks somewhere else you always move into a worse situation. You are better off with struggle and pain where God wants you, than to try and go where it is wonderful where you are not called to be.
Dan has always attested to what happens to a people who will not persist and intensely follow God under pressure and stress and pain, and instead try and go somewhere else. You've got to be where God calls even if the struggle is there." (Ray Vanderlaan)
Looking up the history of the city of Dan, it might have been better for them to just cozy up to the Philistine border and stand firm.
I cannot get past this, because that seems to be where God has placed me. And I cannot describe it better. I've got to "be" where God calls, even if the struggle is "there".
I want to retreat to the mountains. I want to go where it looks "more wonderful". But, that's not where God placed me. And this is something I just can't escape and walk away from.
***
The reason the teaching was titled "Beth Shemesh" was - and forgive my brief paraphrase here - was because as archaeologists have dug up this city, they found the local garbage dump and layers of bones. Hebrews don't eat pigs. So the idea was to find out how much the local Hebrews had influenced their world for God by the amount of pig bones they found. (the tribe of Dan and it's inheritance was just a side-bar reference in this teaching)
During the time of Sampson - who was set up to be something really big for God, but ended up poorly with his eyes gouged out by the Philistines and chained between two pillars, he didn't make the best choices in life - but at the time of Sampson the amount of pig bones found in the leftover food places was 25%. At the time of Solomon, much less. At the time of King Hezekiah - none.
No matter what you think about the idea of eating pigs, or such, I kind of wondered what would be the measuring rod today of my influence on my society for God.
I can measure other's influence especially this year - because of what they have done for no other reason than to help those that are sick.
Our yard was mowed at least once a week since spring by a lawn service. Paid for by a former employer, who was in a lot of ways closer than family to me. He has four kids that need money put into college funds - but he still did it.
He doesn't go to any church. He doesn't spout off 'Christianize', or worthless Christian cliches. Yet he is one of the most "do-the-right-thing" people I know. I watched him make a lot of hard decisions as a new business owner that were really hard, and I watched him always try to do the right thing with each decision.
I never had to lie for him when I worked for him.
We have received a weekly gift card in the mail for either gas or groceries. Anonymously. At first it drove me crazy trying to figure out who it was. But now I just pray blessings over them daily. Better than the gift card, wrapped around it are phrases of encouragement sent on simple white sheets of paper telling me to stay in the fight, to not give up.
I cannot tell you how many times that has made us smile on the most difficult of days.
My brother-in-law in Oregon forwards me emails - sometimes it's a "funny"; sometimes it's beautiful pictures of places that are eye-candy to the soul; sometimes it has a political bent; but it always reminds me that someone believes that I am still alive and open emails.
Well, not always immediately but eventually.
***
So I wonder what we will be measured by when we all stand before the throne? What will be our "pig bones"?
I was talking to my friend Morven the other day, and it seems that sometimes people are so wrapped up in "church" and their major beliefs that are taught to them, that they have little time for the actual Scriptures and the living out of the teachings therein.
It's easy to be so busy with work and church and our "ministries" - to be too busy to actually live out what God intended us to do - to face our struggles, and do good to others.
I'm afraid I have a whole backyard of pig bones to be dug up. I have a lot of restructuring to do in my own life. (and pig farmers, just an FYI - Ray Vanderlaan has millions of videos all over the world about the ancient Hebrews and the Torah and how important it all is to us today -- all because his grandparents sold their pig farm and gave him money to go to school in Israel.... isn't life full of irony at times??)
***
I do know we all have differing levels of what is good. I spent some time with my two favorite five year olds and ended up helping them clean up their rooms some. We ended up digging things out from under their beds and at one point I said "what the heck??!!" when encountering some items, like spoons and 'Gogurts' wrappers and such.
In fact, I think sweet Zoe would love to be a burrowing animal - she might be able to live under her bed if the shadows she sees at night, that she so earnestly and honestly tells me about, do indeed become real.
But I was immediately, and almost sternly, corrected. "You don't say "heck", Grandmumsy!"
And here I thought I was being good by redirecting a word.......
But I know in the land of the sick, the kindest things are the things others have to "do".
And I am most miserable at it myself, so I cannot tell you how much that makes me appreciate it all the more.
But it was great to help them clean up a little - it helped me get back involved in their lives. They come visit me, but I don't realize until I spend time in their rooms what is really important in their lives. I don't know what stuffed animal is most dear to them and gets top billing on top of their beds. I don't know what toys they are tired of, and what ones they desire. I don't know how creative they are until I see things they have made or designs they like, or the nests they make under their beds for "safety's" sake.
I don't know their little hurts at school until they work beside me for an hour and talk. I don't know their horrors of tree branches that make bad shadows at night. I don't remember how much they need to be hugged and told how special God made each of them and how much I love them.
So I was kind of digging in their own "bone pile", and I really, really hope I helped them and that somehow I reflect goodness and kindness and God to them in ways they can grasp.
And I won't say "heck" around them anymore......
I have listened to one particular teaching for almost two weeks. I should have it memorized by now, but my brain's not rolling that way at this point in my life.
After wandering for forty years in the desert, Moses - who knew he was not stepping one toe into the Promised Land - once again implored the people with a long speech that some say took 39 days, to obey God and do what He told them to do. The people agreed and said "We will do what God commands!"
When the tribe of Dan went into the Promised Land, their area of tribal inheritance was next to the coastal plains, which was full of Philistines. A whole land full of Philistines about, oh, three miles away. They were in a constant battle with their close proximity neighbors and were basically holding the door, being the "gateway" to the rest of Israel.
The "battle" seemed to take on two fronts - one was of course physical and that included full front on battles or if you were travelling with a small group of people and were suddenly caught by the raiding parties of the Philistines, you might have wished to be turned over to the Shawnees in North America.
But the battle had another front as well - it was the clash of cultures. The Israelites had been wandering for over a generation of people in a wilderness and the tribe of Dan were especially set up for a close and in depth study of what looked to be a very sophisticated culture just next door. The Philistines in my mind never got past the cave-man-looking-Goliath idea - and yet archaeology says they were at that point more sophisticated than the Hebrews. They used iron. Their paganism allotted them a lot more fun. They just had better "stuff".
How could good God fearing folks keep looking away when - wow - there was a lot of "stuff" going on right down the road - you could look and just see it all - it was that close. Some pagan temples had Amsterdam "freedoms" beat by miles and miles.
They were stuck between the coastal plain three short miles away and the Judah mountains right behind them. On the coastal plain were the powerful Philistines. Dan could not retreat, and constantly faced the pressure of the Philistines.
It got to be too much. After a bit of time the tribe of Dan decided "OIY! we cannot continue to do this", so they sent out spies to another city in the mountains, which is where a lot of the Israelites had fled for protection from their not-too-happy new neighbors.
The spies landed upon a city north to Mount Herman, Laish, and the whole tribe picked up everything, slaughtered the residents of Laish and moved in - leaving their tribal inheritance.
Dan moved from being the cozy neighbors of the Philistines, which they thought wholly too much to bear, to being the first city upon entering Israel on the Via Maris, the major trade route of the day basically connecting much of the then world. And northern armies marching along to invade anyone they took a fancy to take....
Kind of like moving from Cinnamon Lake to Polaris Parkway. Or moving from Polaris Parkway to downtown Jerusalem.
I don't know what they were thinking. To leave their God-given inheritance - the one thing that God gave them - thinking they couldn't take the campfire heat, to an iron furnace stoked and red hot.
But this is the part that I love and cannot get past without pausing it and playing it over and over: "The point that the Jewish Rabbis make on this bit of history, is if you don't work and struggle where God places you, no matter how good it looks somewhere else you always move into a worse situation. You are better off with struggle and pain where God wants you, than to try and go where it is wonderful where you are not called to be.
Dan has always attested to what happens to a people who will not persist and intensely follow God under pressure and stress and pain, and instead try and go somewhere else. You've got to be where God calls even if the struggle is there." (Ray Vanderlaan)
Looking up the history of the city of Dan, it might have been better for them to just cozy up to the Philistine border and stand firm.
I cannot get past this, because that seems to be where God has placed me. And I cannot describe it better. I've got to "be" where God calls, even if the struggle is "there".
I want to retreat to the mountains. I want to go where it looks "more wonderful". But, that's not where God placed me. And this is something I just can't escape and walk away from.
***
The reason the teaching was titled "Beth Shemesh" was - and forgive my brief paraphrase here - was because as archaeologists have dug up this city, they found the local garbage dump and layers of bones. Hebrews don't eat pigs. So the idea was to find out how much the local Hebrews had influenced their world for God by the amount of pig bones they found. (the tribe of Dan and it's inheritance was just a side-bar reference in this teaching)
During the time of Sampson - who was set up to be something really big for God, but ended up poorly with his eyes gouged out by the Philistines and chained between two pillars, he didn't make the best choices in life - but at the time of Sampson the amount of pig bones found in the leftover food places was 25%. At the time of Solomon, much less. At the time of King Hezekiah - none.
No matter what you think about the idea of eating pigs, or such, I kind of wondered what would be the measuring rod today of my influence on my society for God.
I can measure other's influence especially this year - because of what they have done for no other reason than to help those that are sick.
Our yard was mowed at least once a week since spring by a lawn service. Paid for by a former employer, who was in a lot of ways closer than family to me. He has four kids that need money put into college funds - but he still did it.
He doesn't go to any church. He doesn't spout off 'Christianize', or worthless Christian cliches. Yet he is one of the most "do-the-right-thing" people I know. I watched him make a lot of hard decisions as a new business owner that were really hard, and I watched him always try to do the right thing with each decision.
I never had to lie for him when I worked for him.
We have received a weekly gift card in the mail for either gas or groceries. Anonymously. At first it drove me crazy trying to figure out who it was. But now I just pray blessings over them daily. Better than the gift card, wrapped around it are phrases of encouragement sent on simple white sheets of paper telling me to stay in the fight, to not give up.
I cannot tell you how many times that has made us smile on the most difficult of days.
My brother-in-law in Oregon forwards me emails - sometimes it's a "funny"; sometimes it's beautiful pictures of places that are eye-candy to the soul; sometimes it has a political bent; but it always reminds me that someone believes that I am still alive and open emails.
Well, not always immediately but eventually.
***
So I wonder what we will be measured by when we all stand before the throne? What will be our "pig bones"?
I was talking to my friend Morven the other day, and it seems that sometimes people are so wrapped up in "church" and their major beliefs that are taught to them, that they have little time for the actual Scriptures and the living out of the teachings therein.
It's easy to be so busy with work and church and our "ministries" - to be too busy to actually live out what God intended us to do - to face our struggles, and do good to others.
I'm afraid I have a whole backyard of pig bones to be dug up. I have a lot of restructuring to do in my own life. (and pig farmers, just an FYI - Ray Vanderlaan has millions of videos all over the world about the ancient Hebrews and the Torah and how important it all is to us today -- all because his grandparents sold their pig farm and gave him money to go to school in Israel.... isn't life full of irony at times??)
***
I do know we all have differing levels of what is good. I spent some time with my two favorite five year olds and ended up helping them clean up their rooms some. We ended up digging things out from under their beds and at one point I said "what the heck??!!" when encountering some items, like spoons and 'Gogurts' wrappers and such.
In fact, I think sweet Zoe would love to be a burrowing animal - she might be able to live under her bed if the shadows she sees at night, that she so earnestly and honestly tells me about, do indeed become real.
But I was immediately, and almost sternly, corrected. "You don't say "heck", Grandmumsy!"
And here I thought I was being good by redirecting a word.......
But I know in the land of the sick, the kindest things are the things others have to "do".
And I am most miserable at it myself, so I cannot tell you how much that makes me appreciate it all the more.
But it was great to help them clean up a little - it helped me get back involved in their lives. They come visit me, but I don't realize until I spend time in their rooms what is really important in their lives. I don't know what stuffed animal is most dear to them and gets top billing on top of their beds. I don't know what toys they are tired of, and what ones they desire. I don't know how creative they are until I see things they have made or designs they like, or the nests they make under their beds for "safety's" sake.
I don't know their little hurts at school until they work beside me for an hour and talk. I don't know their horrors of tree branches that make bad shadows at night. I don't remember how much they need to be hugged and told how special God made each of them and how much I love them.
So I was kind of digging in their own "bone pile", and I really, really hope I helped them and that somehow I reflect goodness and kindness and God to them in ways they can grasp.
And I won't say "heck" around them anymore......
Friday, November 30, 2012
Reprieve!
I have been set free. I have been given a little reprieve - and I am still smiling over it all.
Just for a month, but it still feels good. My daily radiation treatments for six weeks were slated to start the first week of December - just three weeks out from my last chemo. I met with my new doctor, the Radiology Oncologist, Dr. White, and the appointment between her and talking with her "fellow", lasted over two and a half hours.
I have more knowledge about radiation now than when I first set up the OSHA manual at work years and years ago.
Being too quirky honest at times, I told her up front I came into this appointment with my insides kicking and screaming. I don't want radiation. It's going to hit my heart some. It's going to hit 30% of my left lung and leave some scar tissue behind. It's going to contribute to heart disease with problems with the arteries in the vicinity. I knew all that walking into the appointment, and she confirmed it all and more, and I just sat there.
She is very straight-forward and doesn't mince words, and asked me after explaining all of that "why don't you want to do this?" I laughed because of the obvious and told her that I knew this radiation would turn around and bite me in the ass in twenty years.
She told me it might, but first let's. just. get. to. twenty. years. She again went over the nature of my disease, the staging, the risks, and said "better twenty years than four, hmmm??" with one eyebrow raised.
She said I'm young, (smile inside, yes I did) I'm relatively healthy considering my past year or more, and this will give me an even more 10-15% chance of non-recurrence.
She also said that she has been published as "the doctor that doesn't treat unnecessarily" meaning just because you have one type of cancer she doesn't automatically throw you into radiation treatment without looking over everything, everything and then making that decision.
After looking over everything, and noting some "misses" that I should have had done at the very beginning, and the fact that I missed my last Taxol treatment, she said she wants me "in".
I had one foot in.
Then she said my oncologist's new "fellow", had noted another round of Taxol for me after radiation - and nothing else in this appointment brought every cell in my body to rapt, focused attention in that exam room faster than that one word. I told her it was a new fellow and that was probably a mistake as I'VE HAD SIX MONTHS OF TAXOL - like how much more can my damaged nerve endings take of that stuff??!!!
I also reminded her that they had just kindly tried to kill me with three months of their latest healing kindnesses and I was sure my liver could not take anymore.
She just kind of waved her hand like that's between you and your oncologist, but noted that maybe doing the radiation would null and void any further need of "that stuff".
Oh they are naughty-good sales people there........
I jumped. Both feet, full body.
Then she gave me the month off. I think mostly because after I told them proudly that I drove myself that day, they looked at me and considered the safety of the roadways, and gave me an extra four weeks.
But in all reality, it seems to be more about "missing days". She's not a huge fan of that. In fact, if we have a blizzard, I think I will pack a suitcase and hang out in the lounge after she explained the importance of it all.
She said she doesn't like me missing any days after I start, and as a rule they close for two days at Christmas and one day at New Years, plus they all have an "everything breast cancer convention" to attend for three days the first week of December, so that knocks out a lot of days right off the bat.
And...... there is also that little problem of hubby needing a surgery for his gall bladder which we are desperately hoping happens in December as he has had three more pretty severe attacks since he got home from the hospital and we are not sure how long he can go without eating as everything seems to bring on an attack.
I told him it's like being at the bowling alley -- as soon as one stone drops down into the duct and clears after pain meds and clear fluids for 24 hours -- another one lines up to drop down. He must have a gall bladder full of them, which is what his doctor mentioned.
Oyi.
So I officially start my six weeks of radiation January 2nd. Also known as the six worst driving weeks of the year in northern Ohio.
Another reason we are waiting and causing more trips to Columbus is that with the last chemo treatment, my arm "seized" up again. I could hardly straighten it out one morning....... so even though I have been working with it a lot and have made great strides, she said the "cording" that stretches from my elbow to my lower chest wall "has to go", or I'll never be able to do the long setup appointments. (I think I could have) I'm not sure why it happened as my arm had become pretty loose and working after physical therapy and my late-started-home-exercises before, and they are not sure why it happened, but it has happened and there is something that feels like a tight rope in there still.... She set me up with some PT appointments again.
Ode to lymph node removal......
***
Heidi stayed overnight last week with me, and noticed something about my closet. It has collapsed.
Literally.
The morning that we were leaving early for my second chemo treatment, I reached in to get a sweater - and the whole two racks just collapsed. There's a lot of stuff in there - I haven't rotated out seasonal clothes for over a year, I've been pulling out bigger sizes while I was swollen the first six months of chemo, then adding in smaller sizes, so it was working out to be the perfect storm.
Or the perfect collapse.
Which was fine - I mean you get to a point in life where that is just something that happens - not a life changing event. We were in a hurry, had to leave, closed the doors and that's the way it has been for a while with neither of us not feeling all that well. I've been wearing mostly sweats and sweatshirts anyways, so it wasn't like I was needing to get in there.
But Heidi saw it. And her husband decided to fix it when they stopped through over the weekend.
And I got a bonus - as we were pulling all the clothes out to enable them a chance to get work space, Heidi said "whoa, mom, there's like too many clothes in here".
And that was how my clothing intervention started. She's pretty tough. When they were young, I had a few closet rules: "If you haven't worn it in a year, it goes." Another one was, "if we buy it, you have to wear it five times".
Let's just say, sometimes life comes full circle. If I had a dollar for every time she asked me one of those questions that day, my retirement fund would be rebuilt. She filled up her car with the clothes, then took them to a second hand store in Columbus, and get this - SOLD THEM!!
But it was a solid day of work, with Heidi doing the brunt of it and also Wes and Scotty and Scott working on the closet repair, and it felt so good.
I have to be honest, it has been a long time since my house has had my intense organizational skills focused onto it alone. I mean, a long, long time.
Plus, we have a lady coming in and doing the bathrooms and dusting and such for us every several weeks. Anticipating her coming in, makes me look at our house through different eyes, and I am like, it's time to unload. It's time to reorganize. It's time to cleanse oneself of all built up "stuff".
So I kind of cleaned out the hall closet. And even gave away three comforters. I gave away a set of dishes - which is not a whole lot as I have quite a dish "fetish" if you will.
But it feels good to look around, and start to think about something else other than chemo and such.
***
We were feeling pretty bad Thanksgiving week. Scott had been in the hospital for a couple of days, I was not feeling top of the world and this was the year our kids all go to their in-laws for Thanksgiving, then will be here for Christmas.
We were ok with it all, and in fact, neither one of us felt up to cooking even. Then that evening Scotty walked in the front door with a roasted duck on a platter that any magazine cover would envy - roasted duck, roasted veggies all around it and dressing.
It was a thing of beauty.
We shared our mashed potatoes, and just cried a little, thinking how blessed we were. I felt halfway bad because the girls were all dressed up and yelled "Happy Thanksgiving" when they got to the door.
We all said what we were thankful for in prayer before the meal. Scott ate gently.
It was the best Thanksgiving ever - we didn't plan it, we didn't think anything of event could happen that day, but Scotty and Leila and Chloe and Zoe brought a lot of joy into the lives of two very "bilious" feeling people that evening.
And you should have tasted his cranberry sauce..........
***
So all in all, one of life's greatest ironies is being played out at our house this week - I suddenly have a strong desire for a Panera Bread salad - and Scott who loves all things eating out - couldn't go and take a bite without causing all kinds of painful alarms to go off in his body.
We keep looking at each other and say "you do what you gotta do to get where you need to be"..... he stuck pretty close by me this past year and has been quite easy on my stomach, so I am sneaking things during the day -- like today I had my first roast beef sandwich in maybe a whole year. It was pretty tasty. So as my sense of taste comes back, I only indulge it in secret.
I do feel so blessed to be coming back to the land of the living - I have spent too much time laying flat out in bed.
This Sabbath day, we are feeling blessed.
Just for a month, but it still feels good. My daily radiation treatments for six weeks were slated to start the first week of December - just three weeks out from my last chemo. I met with my new doctor, the Radiology Oncologist, Dr. White, and the appointment between her and talking with her "fellow", lasted over two and a half hours.
I have more knowledge about radiation now than when I first set up the OSHA manual at work years and years ago.
Being too quirky honest at times, I told her up front I came into this appointment with my insides kicking and screaming. I don't want radiation. It's going to hit my heart some. It's going to hit 30% of my left lung and leave some scar tissue behind. It's going to contribute to heart disease with problems with the arteries in the vicinity. I knew all that walking into the appointment, and she confirmed it all and more, and I just sat there.
She is very straight-forward and doesn't mince words, and asked me after explaining all of that "why don't you want to do this?" I laughed because of the obvious and told her that I knew this radiation would turn around and bite me in the ass in twenty years.
She told me it might, but first let's. just. get. to. twenty. years. She again went over the nature of my disease, the staging, the risks, and said "better twenty years than four, hmmm??" with one eyebrow raised.
She said I'm young, (smile inside, yes I did) I'm relatively healthy considering my past year or more, and this will give me an even more 10-15% chance of non-recurrence.
She also said that she has been published as "the doctor that doesn't treat unnecessarily" meaning just because you have one type of cancer she doesn't automatically throw you into radiation treatment without looking over everything, everything and then making that decision.
After looking over everything, and noting some "misses" that I should have had done at the very beginning, and the fact that I missed my last Taxol treatment, she said she wants me "in".
I had one foot in.
Then she said my oncologist's new "fellow", had noted another round of Taxol for me after radiation - and nothing else in this appointment brought every cell in my body to rapt, focused attention in that exam room faster than that one word. I told her it was a new fellow and that was probably a mistake as I'VE HAD SIX MONTHS OF TAXOL - like how much more can my damaged nerve endings take of that stuff??!!!
I also reminded her that they had just kindly tried to kill me with three months of their latest healing kindnesses and I was sure my liver could not take anymore.
She just kind of waved her hand like that's between you and your oncologist, but noted that maybe doing the radiation would null and void any further need of "that stuff".
Oh they are naughty-good sales people there........
I jumped. Both feet, full body.
Then she gave me the month off. I think mostly because after I told them proudly that I drove myself that day, they looked at me and considered the safety of the roadways, and gave me an extra four weeks.
But in all reality, it seems to be more about "missing days". She's not a huge fan of that. In fact, if we have a blizzard, I think I will pack a suitcase and hang out in the lounge after she explained the importance of it all.
She said she doesn't like me missing any days after I start, and as a rule they close for two days at Christmas and one day at New Years, plus they all have an "everything breast cancer convention" to attend for three days the first week of December, so that knocks out a lot of days right off the bat.
And...... there is also that little problem of hubby needing a surgery for his gall bladder which we are desperately hoping happens in December as he has had three more pretty severe attacks since he got home from the hospital and we are not sure how long he can go without eating as everything seems to bring on an attack.
I told him it's like being at the bowling alley -- as soon as one stone drops down into the duct and clears after pain meds and clear fluids for 24 hours -- another one lines up to drop down. He must have a gall bladder full of them, which is what his doctor mentioned.
Oyi.
So I officially start my six weeks of radiation January 2nd. Also known as the six worst driving weeks of the year in northern Ohio.
Another reason we are waiting and causing more trips to Columbus is that with the last chemo treatment, my arm "seized" up again. I could hardly straighten it out one morning....... so even though I have been working with it a lot and have made great strides, she said the "cording" that stretches from my elbow to my lower chest wall "has to go", or I'll never be able to do the long setup appointments. (I think I could have) I'm not sure why it happened as my arm had become pretty loose and working after physical therapy and my late-started-home-exercises before, and they are not sure why it happened, but it has happened and there is something that feels like a tight rope in there still.... She set me up with some PT appointments again.
Ode to lymph node removal......
***
Heidi stayed overnight last week with me, and noticed something about my closet. It has collapsed.
Literally.
The morning that we were leaving early for my second chemo treatment, I reached in to get a sweater - and the whole two racks just collapsed. There's a lot of stuff in there - I haven't rotated out seasonal clothes for over a year, I've been pulling out bigger sizes while I was swollen the first six months of chemo, then adding in smaller sizes, so it was working out to be the perfect storm.
Or the perfect collapse.
Which was fine - I mean you get to a point in life where that is just something that happens - not a life changing event. We were in a hurry, had to leave, closed the doors and that's the way it has been for a while with neither of us not feeling all that well. I've been wearing mostly sweats and sweatshirts anyways, so it wasn't like I was needing to get in there.
But Heidi saw it. And her husband decided to fix it when they stopped through over the weekend.
And I got a bonus - as we were pulling all the clothes out to enable them a chance to get work space, Heidi said "whoa, mom, there's like too many clothes in here".
And that was how my clothing intervention started. She's pretty tough. When they were young, I had a few closet rules: "If you haven't worn it in a year, it goes." Another one was, "if we buy it, you have to wear it five times".
Let's just say, sometimes life comes full circle. If I had a dollar for every time she asked me one of those questions that day, my retirement fund would be rebuilt. She filled up her car with the clothes, then took them to a second hand store in Columbus, and get this - SOLD THEM!!
But it was a solid day of work, with Heidi doing the brunt of it and also Wes and Scotty and Scott working on the closet repair, and it felt so good.
I have to be honest, it has been a long time since my house has had my intense organizational skills focused onto it alone. I mean, a long, long time.
Plus, we have a lady coming in and doing the bathrooms and dusting and such for us every several weeks. Anticipating her coming in, makes me look at our house through different eyes, and I am like, it's time to unload. It's time to reorganize. It's time to cleanse oneself of all built up "stuff".
So I kind of cleaned out the hall closet. And even gave away three comforters. I gave away a set of dishes - which is not a whole lot as I have quite a dish "fetish" if you will.
But it feels good to look around, and start to think about something else other than chemo and such.
***
We were feeling pretty bad Thanksgiving week. Scott had been in the hospital for a couple of days, I was not feeling top of the world and this was the year our kids all go to their in-laws for Thanksgiving, then will be here for Christmas.
We were ok with it all, and in fact, neither one of us felt up to cooking even. Then that evening Scotty walked in the front door with a roasted duck on a platter that any magazine cover would envy - roasted duck, roasted veggies all around it and dressing.
It was a thing of beauty.
We shared our mashed potatoes, and just cried a little, thinking how blessed we were. I felt halfway bad because the girls were all dressed up and yelled "Happy Thanksgiving" when they got to the door.
We all said what we were thankful for in prayer before the meal. Scott ate gently.
It was the best Thanksgiving ever - we didn't plan it, we didn't think anything of event could happen that day, but Scotty and Leila and Chloe and Zoe brought a lot of joy into the lives of two very "bilious" feeling people that evening.
And you should have tasted his cranberry sauce..........
***
So all in all, one of life's greatest ironies is being played out at our house this week - I suddenly have a strong desire for a Panera Bread salad - and Scott who loves all things eating out - couldn't go and take a bite without causing all kinds of painful alarms to go off in his body.
We keep looking at each other and say "you do what you gotta do to get where you need to be"..... he stuck pretty close by me this past year and has been quite easy on my stomach, so I am sneaking things during the day -- like today I had my first roast beef sandwich in maybe a whole year. It was pretty tasty. So as my sense of taste comes back, I only indulge it in secret.
I do feel so blessed to be coming back to the land of the living - I have spent too much time laying flat out in bed.
This Sabbath day, we are feeling blessed.
Wednesday, November 21, 2012
Priestly Visits
They send you home with drugs that have words on the labels like "for the treatment of schizophrenia", or the real-deal anti-psychotic drugs; or they are for anxiety -- they send them home with you because they use them in what medical professionals call "off label use" -- they are the best they have found so far to combat nausea after chemo.
Not only are you wiped out and put down for the count with chemo, but your brain and mind also enter the battle as you take drugs that your psyche doesn't need - but your body does.
For days while on these drugs, not only are you emotionally drained from the pain and sickness of it all, you are emotionally challenged because suddenly your brain is working in reverse. Not only does super low red blood cells make me weep openly and suddenly, but the drugs they send home with me make me think there is little hope - for anything.
Today is Day 13 after chemo, and my stomach lining decided to start a come-back yesterday. My gastro has calmed considerably. I am beginning to feel real saliva in my mouth that does not include the metal-maalox taste. I still cannot do kitchen smells, nor garbage smells, nor look at raw meat.
I used to have the most iron-clad stomach. When I worked at the veterinary clinic I assisted with surgeries at times. Other times I would stand in the surgery room door to be able to talk with my boss and go over my checklists with him - multi-tasking if you will - while eating my lunch. Some pretty hideous injuries would walk through the door, and I never blinked an eye.
I know from my time spent at the orthodontist as a lab tech, a lot of people are not so lucky. Many have a pretty easy gag reflex and get queasy just thinking about putting a tray of impression material into their mouths. I remember the day one patient vomited so hardily they hit the window several feet away.
In my whole lifetime, I have rarely vomited.
Chemo changes your whole stomach. It changes your esophagus. It changes your gastro. It changes the lining of your mouth. If I accidentally see raw meat now, I am gagging over the sink. Still today. Thirteen days out.
The drugs they give you are supposed to change that "click" in your brain - make your brain make your body believe that it's not wanting to vomit.
This has been the most miserable three months of my life. I have never felt so weak, so sick, so strategically laid low. I have never been so depressed some days. I have never hurt so bad. It's been a while, but I might have exchanged a couple of child-births without drugs for many of those days.
When I showed up for my last chemo thirteen days ago, the blood work showed pretty poorly still, so my doctor decided to cut my chemo by 20% and still give it. My red blood cells are more of the culprit this time, and I remember that every time I go up steps or any type of incline and demand more oxygen from them - they can't give it even yet.
Since she was cutting the chemo some, I asked to use steroids longer and cut out the other drugs - and then "step down" to only one drug that had agreed with me since January - with little mental side-effects.
I. was. smashed. And still depressed. And still hurting. And still down. But I wasn't hallucinating, I wasn't dreaming nightmares, and I wasn't looking for high windows.
She had told me at the beginning that she was going to "whallop me" with this chemo to increase my chances of non-recurrence. (whallop is my word, not hers, but my brain is so far down the road, I don't remember a lot of things like certain words used)
I didn't think it was going to be this bad, and even if it was, I thought I could endure anything for three months.
I probably won't say things like that again.
I cannot, cannot tell you how relieved my body is knowing this is hopefully my last chemo ever. I pray no one, no one that I know will ever be "whalloped" like this. I pray I never forget the depth of feeling I have anytime I hear of anyone suffering now.
***
When I do Christmas letters - the annual ones that go out maybe every three years or so as I'm not all that good at Christmas cards - I have mused that I am never at a loss for good, raw material to include in those letters. This year is no different.
Scott woke me up Sunday night about midnight and I took him to the emergency room. He was having pretty severe pain across his lower chest and was vomiting again. He has been vomiting off and on for four weeks, and kept making excuses, kept saying he was fine, anything to not head north to Cleveland again for a visit with his gastro doctor there.
After a CAT scan, they told him he had good-size gallstones in his gall bladder duct. We transferred to the Cleveland Clinic hoping to maybe get a fast surgery and be done with this, but were disappointed to hear that they would rather him wait six weeks for the surgery after his gall bladder and such have had time to "calm down". Wait on the inflammation to go down.
He was instructed to not eat any fried foods, nor to indulge in fats. You might as well have burned his wagon and left him on the Oregon trail buried up to his neck in fire ants.
Our daughter Heidi, God bless her, came up to help me out on Monday - I practiced driving to Cleveland with her in the car to be sure I could, then she drove me home that night and stayed over. Then she drove me up Tuesday morning, and I brought Scott home Tuesday evening while she headed off to her in-laws for Thanksgiving week.
About Lodi, I think my adrenaline finally gave out, but we made it home quite nicely.
Scott is feeling better, but enormously tired still. If he is feeling anything else, he is not telling me just yet.
So we are quite an odd pair here - he wants to eat, and is incredibly desirous of foods he can't have. I don't care so much if I eat, and am quite content to eat basic things just to keep my stomach happy.
***
With all of our hospital stays over the past 12 years, I have told Scott we should write a book along the lines of "through the curtain", or "on the shuttle bus", or "conversations on the elevator". While in a hospital, you almost always have a room mate, and it always makes for some extra stress or extra pleasure depending on who is on the other side of that curtain. Many times, you don't even see who it is, you just start talking.
Scott's first room mate this week was Paul. He was 81 and had just had a tumor removed from his tear duct. It looked painful, but he was cheerful and had a wonderful voice. He told Scott that he knew almost every square inch of the view from his window - that he had grown up in that neighborhood all those decades ago.
On Tuesday, his wife and her friend came to pick him up. They told Scott all about their own gall bladder stories, which were all encouraging, wished us well and left. Paul said that when he came back soon "to see the Rear Admiral", he was hoping to have another good room mate like Scott. I asked Scott what he meant after he left, and he said he was coming back for a colonoscopy.
Wes brought Addy and Millie in to see Scott and pick up Heidi mid afternoon, and they walked up to his bed and their first words were "YOU HAVE A BEARD, POPOP!!"
Then they properly admired his IV and asked him if it had hurt. They put his bed up and down a bit and thought the hospital wasn't such a bad place after all. Maybe.
They left, we started paperwork to go home hoping to beat rush hour traffic, and then waited. And waited.
They brought another patient for Paul's bed. He was about our age, walked in with jeans and a T-shirt coming from another wing of the hospital. His wife carried his bag. He got into bed and asked her to pull the curtain back so he could see us and talk to us. He asked me if I minded if he got into his boxers. I saw he didn't have hair under his hat, saw he was thinner than when he had bought his jeans; I saw his port sticking out from his t-shirt sleeve and told him he could strip naked if he wanted, I would not be bothered.
He was getting pain management after the trial study they had driven to Cleveland to get into didn't work out, then heading back to Roswell to get back into the study he had left there. They were from upper state New York.
He had leukemia. His bone marrow transplant had failed and he was getting into studies to try to stop the fatal march of his disease. His wife said his doctor had told him he "had Christmas". They had asked about his birthday in the spring, and his doctor didn't know. Two weeks ago, his bone marrow was 90% gone, but then had come back up some and they didn't know why or which treatment might have helped.
We talked back and forth and shared stories. He had also started his treatments in January.
They both knew his wife was going to be a widow soon if one of the studies did not miraculously change his bone marrow and fight his disease.
We could not help but listen to his intake. The nurse said she was hoping to win the lottery - he told her that she would never believe how little money they had at that moment and how happy they were. The nurse asked him if he felt safe at home. He told her that neither one of them had ever raised a hand to each other. He told her that they loved each other more now than they had when they married twenty-five years ago.
He was a Catholic, and asked for Holy Communion.
When we left, we stopped at the foot of his bed and told them we would be praying for them. Steve and Corrina.
Journeys in *Cancer Land*.
***
Actually, it was another "God-moment" that has been so lavishly laid out in front of me time after time this past year.
A couple of days before my third treatment, I was feeling better, so my sister-in-law Polly took me out for the day. We traveled to Norwalk, Ohio, and went to all her favorite shops - and of all things, I bought a pink coffee table in a second hand furniture store. It barely fit into the back seat of her car.
I still smile every day when I look at it in my brown and gold living room. It smiles back at me and says "I have potential!" "You are going to love repainting me one day!" "I am the perfect size, perfect shape!" I haven't seen potential in anything for a long time.
That coffee table and I are friends - it has made me look ahead and think about something other than loathing chemo for brief moments.
Polly has keen eyes, and she knew I wasn't quite in step with everything, so after a few shops she took me to a coffee shop. When we pulled into the parking lot behind it, a woman walking a dog leaned over and smiled and waved at me in the car. I kind of knew what this might all mean - God was directing someone's steps once again to directly coincide with mine - to directly meet me and send me a gift.
We got out of the car and walked towards the door. The woman caught up to us, walked in with us and she asked me how long I had been in chemo. We talked a bit about surviving chemo, then she told me she had been diagnosed in her early thirties, the very year she had taken on the care of her sister's six young children.
She smiled at me like these people all do that God sends, gave me a big hug, and said "you're going to make it - you're going to be ok". They say that, because I don't look so much like I'm going to make it. I don't look so much like I'm going to be ok. But they say it like it came straight from God. She blessed me, then her kids who were now teenagers all needed her and we said good-bye.
When we got our coffee - "it was on the house". She was the owner.
Polly and I sat at a window table and Polly marveled at what had just happened. I told Polly it was not all that uncommon these days. I told her that as bad as I had felt with this chemo round, that my *hope-meter* was in the basement. And just when I thought that I could not walk back into that fourth floor chemotherapy door in two days, God would send me one the likes of Melchizadek out of nowhere. A high priest from God Himself, committed to blessing me. They always radar onto me and will not be done until they have caught me, anointed me, and encouraged me with the breath of heaven.
Leukemia-Steve told me when we were talking "it doesn't matter how much time you have - you have today".
***
I cried while walking beside the gentleman pushing the wheelchair taking Scott down to the hospital exit. He was older than me, with an accent. He asked me if I was ok, and I told him we had just left talking with a patient who had leukemia.
He told me he believed in God and that there were no mistakes in God's kingdom. After we left Scott in the pick up room, he walked out with me and said "I want to tell you again, there are no mistakes in God's kingdom. Everything has a purpose, everything has a plan".
Normally, I hate to hear those words because I think they are things that Christians say that they don't really believe, or words that are easy to vocalize and hide behind when they don't really know them.
When this gentleman said this to me, I knew that God was speaking through him. I thanked him, and blessed him, and walked out to get the car from the parking garage.
***
I start six weeks of radiation the first week of December. It will end up being seven weeks with the holidays falling as they do. There have not been any full recovery breaks this year - I've gone from six months of chemo to surgery to chemo then to radiation.
My doctor said my blood counts will not have had time to recover, but she wants me there and she wants me to just take it easy, rest a lot, and finish the course.
I don't know why God has me walking this long journey, but I am picking up the gold nuggets along the way, examining them, putting them into a pouch for later use and reflection.
And this week with neither Scott nor I in the full flush of health - in fact you won't find a hint of flush even close by - yet, we are thankful. There is so much hurting and pain and misery in the world - especially within the communities of the "unhealthy" - that sometimes it is hard to see beyond the fire burning about you, the flood waters trying to sweep you away.
But we are thankful because we have today. We are thankful we have a God. We are thankful to be met on a journey by those sent from God to minister to us more than we ever thought possible to experience.
And tonight, from my deepest bone marrow trying desperately to repair, I am thankful that while I count out the days from chemo, that I am no longer counting the dreaded days until the next chemo.
Not only are you wiped out and put down for the count with chemo, but your brain and mind also enter the battle as you take drugs that your psyche doesn't need - but your body does.
For days while on these drugs, not only are you emotionally drained from the pain and sickness of it all, you are emotionally challenged because suddenly your brain is working in reverse. Not only does super low red blood cells make me weep openly and suddenly, but the drugs they send home with me make me think there is little hope - for anything.
Today is Day 13 after chemo, and my stomach lining decided to start a come-back yesterday. My gastro has calmed considerably. I am beginning to feel real saliva in my mouth that does not include the metal-maalox taste. I still cannot do kitchen smells, nor garbage smells, nor look at raw meat.
I used to have the most iron-clad stomach. When I worked at the veterinary clinic I assisted with surgeries at times. Other times I would stand in the surgery room door to be able to talk with my boss and go over my checklists with him - multi-tasking if you will - while eating my lunch. Some pretty hideous injuries would walk through the door, and I never blinked an eye.
I know from my time spent at the orthodontist as a lab tech, a lot of people are not so lucky. Many have a pretty easy gag reflex and get queasy just thinking about putting a tray of impression material into their mouths. I remember the day one patient vomited so hardily they hit the window several feet away.
In my whole lifetime, I have rarely vomited.
Chemo changes your whole stomach. It changes your esophagus. It changes your gastro. It changes the lining of your mouth. If I accidentally see raw meat now, I am gagging over the sink. Still today. Thirteen days out.
The drugs they give you are supposed to change that "click" in your brain - make your brain make your body believe that it's not wanting to vomit.
This has been the most miserable three months of my life. I have never felt so weak, so sick, so strategically laid low. I have never been so depressed some days. I have never hurt so bad. It's been a while, but I might have exchanged a couple of child-births without drugs for many of those days.
When I showed up for my last chemo thirteen days ago, the blood work showed pretty poorly still, so my doctor decided to cut my chemo by 20% and still give it. My red blood cells are more of the culprit this time, and I remember that every time I go up steps or any type of incline and demand more oxygen from them - they can't give it even yet.
Since she was cutting the chemo some, I asked to use steroids longer and cut out the other drugs - and then "step down" to only one drug that had agreed with me since January - with little mental side-effects.
I. was. smashed. And still depressed. And still hurting. And still down. But I wasn't hallucinating, I wasn't dreaming nightmares, and I wasn't looking for high windows.
She had told me at the beginning that she was going to "whallop me" with this chemo to increase my chances of non-recurrence. (whallop is my word, not hers, but my brain is so far down the road, I don't remember a lot of things like certain words used)
I didn't think it was going to be this bad, and even if it was, I thought I could endure anything for three months.
I probably won't say things like that again.
I cannot, cannot tell you how relieved my body is knowing this is hopefully my last chemo ever. I pray no one, no one that I know will ever be "whalloped" like this. I pray I never forget the depth of feeling I have anytime I hear of anyone suffering now.
***
When I do Christmas letters - the annual ones that go out maybe every three years or so as I'm not all that good at Christmas cards - I have mused that I am never at a loss for good, raw material to include in those letters. This year is no different.
Scott woke me up Sunday night about midnight and I took him to the emergency room. He was having pretty severe pain across his lower chest and was vomiting again. He has been vomiting off and on for four weeks, and kept making excuses, kept saying he was fine, anything to not head north to Cleveland again for a visit with his gastro doctor there.
After a CAT scan, they told him he had good-size gallstones in his gall bladder duct. We transferred to the Cleveland Clinic hoping to maybe get a fast surgery and be done with this, but were disappointed to hear that they would rather him wait six weeks for the surgery after his gall bladder and such have had time to "calm down". Wait on the inflammation to go down.
He was instructed to not eat any fried foods, nor to indulge in fats. You might as well have burned his wagon and left him on the Oregon trail buried up to his neck in fire ants.
Our daughter Heidi, God bless her, came up to help me out on Monday - I practiced driving to Cleveland with her in the car to be sure I could, then she drove me home that night and stayed over. Then she drove me up Tuesday morning, and I brought Scott home Tuesday evening while she headed off to her in-laws for Thanksgiving week.
About Lodi, I think my adrenaline finally gave out, but we made it home quite nicely.
Scott is feeling better, but enormously tired still. If he is feeling anything else, he is not telling me just yet.
So we are quite an odd pair here - he wants to eat, and is incredibly desirous of foods he can't have. I don't care so much if I eat, and am quite content to eat basic things just to keep my stomach happy.
***
With all of our hospital stays over the past 12 years, I have told Scott we should write a book along the lines of "through the curtain", or "on the shuttle bus", or "conversations on the elevator". While in a hospital, you almost always have a room mate, and it always makes for some extra stress or extra pleasure depending on who is on the other side of that curtain. Many times, you don't even see who it is, you just start talking.
Scott's first room mate this week was Paul. He was 81 and had just had a tumor removed from his tear duct. It looked painful, but he was cheerful and had a wonderful voice. He told Scott that he knew almost every square inch of the view from his window - that he had grown up in that neighborhood all those decades ago.
On Tuesday, his wife and her friend came to pick him up. They told Scott all about their own gall bladder stories, which were all encouraging, wished us well and left. Paul said that when he came back soon "to see the Rear Admiral", he was hoping to have another good room mate like Scott. I asked Scott what he meant after he left, and he said he was coming back for a colonoscopy.
Wes brought Addy and Millie in to see Scott and pick up Heidi mid afternoon, and they walked up to his bed and their first words were "YOU HAVE A BEARD, POPOP!!"
Then they properly admired his IV and asked him if it had hurt. They put his bed up and down a bit and thought the hospital wasn't such a bad place after all. Maybe.
They left, we started paperwork to go home hoping to beat rush hour traffic, and then waited. And waited.
They brought another patient for Paul's bed. He was about our age, walked in with jeans and a T-shirt coming from another wing of the hospital. His wife carried his bag. He got into bed and asked her to pull the curtain back so he could see us and talk to us. He asked me if I minded if he got into his boxers. I saw he didn't have hair under his hat, saw he was thinner than when he had bought his jeans; I saw his port sticking out from his t-shirt sleeve and told him he could strip naked if he wanted, I would not be bothered.
He was getting pain management after the trial study they had driven to Cleveland to get into didn't work out, then heading back to Roswell to get back into the study he had left there. They were from upper state New York.
He had leukemia. His bone marrow transplant had failed and he was getting into studies to try to stop the fatal march of his disease. His wife said his doctor had told him he "had Christmas". They had asked about his birthday in the spring, and his doctor didn't know. Two weeks ago, his bone marrow was 90% gone, but then had come back up some and they didn't know why or which treatment might have helped.
We talked back and forth and shared stories. He had also started his treatments in January.
They both knew his wife was going to be a widow soon if one of the studies did not miraculously change his bone marrow and fight his disease.
We could not help but listen to his intake. The nurse said she was hoping to win the lottery - he told her that she would never believe how little money they had at that moment and how happy they were. The nurse asked him if he felt safe at home. He told her that neither one of them had ever raised a hand to each other. He told her that they loved each other more now than they had when they married twenty-five years ago.
He was a Catholic, and asked for Holy Communion.
When we left, we stopped at the foot of his bed and told them we would be praying for them. Steve and Corrina.
Journeys in *Cancer Land*.
***
Actually, it was another "God-moment" that has been so lavishly laid out in front of me time after time this past year.
A couple of days before my third treatment, I was feeling better, so my sister-in-law Polly took me out for the day. We traveled to Norwalk, Ohio, and went to all her favorite shops - and of all things, I bought a pink coffee table in a second hand furniture store. It barely fit into the back seat of her car.
I still smile every day when I look at it in my brown and gold living room. It smiles back at me and says "I have potential!" "You are going to love repainting me one day!" "I am the perfect size, perfect shape!" I haven't seen potential in anything for a long time.
That coffee table and I are friends - it has made me look ahead and think about something other than loathing chemo for brief moments.
Polly has keen eyes, and she knew I wasn't quite in step with everything, so after a few shops she took me to a coffee shop. When we pulled into the parking lot behind it, a woman walking a dog leaned over and smiled and waved at me in the car. I kind of knew what this might all mean - God was directing someone's steps once again to directly coincide with mine - to directly meet me and send me a gift.
We got out of the car and walked towards the door. The woman caught up to us, walked in with us and she asked me how long I had been in chemo. We talked a bit about surviving chemo, then she told me she had been diagnosed in her early thirties, the very year she had taken on the care of her sister's six young children.
She smiled at me like these people all do that God sends, gave me a big hug, and said "you're going to make it - you're going to be ok". They say that, because I don't look so much like I'm going to make it. I don't look so much like I'm going to be ok. But they say it like it came straight from God. She blessed me, then her kids who were now teenagers all needed her and we said good-bye.
When we got our coffee - "it was on the house". She was the owner.
Polly and I sat at a window table and Polly marveled at what had just happened. I told Polly it was not all that uncommon these days. I told her that as bad as I had felt with this chemo round, that my *hope-meter* was in the basement. And just when I thought that I could not walk back into that fourth floor chemotherapy door in two days, God would send me one the likes of Melchizadek out of nowhere. A high priest from God Himself, committed to blessing me. They always radar onto me and will not be done until they have caught me, anointed me, and encouraged me with the breath of heaven.
Leukemia-Steve told me when we were talking "it doesn't matter how much time you have - you have today".
***
I cried while walking beside the gentleman pushing the wheelchair taking Scott down to the hospital exit. He was older than me, with an accent. He asked me if I was ok, and I told him we had just left talking with a patient who had leukemia.
He told me he believed in God and that there were no mistakes in God's kingdom. After we left Scott in the pick up room, he walked out with me and said "I want to tell you again, there are no mistakes in God's kingdom. Everything has a purpose, everything has a plan".
Normally, I hate to hear those words because I think they are things that Christians say that they don't really believe, or words that are easy to vocalize and hide behind when they don't really know them.
When this gentleman said this to me, I knew that God was speaking through him. I thanked him, and blessed him, and walked out to get the car from the parking garage.
***
I start six weeks of radiation the first week of December. It will end up being seven weeks with the holidays falling as they do. There have not been any full recovery breaks this year - I've gone from six months of chemo to surgery to chemo then to radiation.
My doctor said my blood counts will not have had time to recover, but she wants me there and she wants me to just take it easy, rest a lot, and finish the course.
I don't know why God has me walking this long journey, but I am picking up the gold nuggets along the way, examining them, putting them into a pouch for later use and reflection.
And this week with neither Scott nor I in the full flush of health - in fact you won't find a hint of flush even close by - yet, we are thankful. There is so much hurting and pain and misery in the world - especially within the communities of the "unhealthy" - that sometimes it is hard to see beyond the fire burning about you, the flood waters trying to sweep you away.
But we are thankful because we have today. We are thankful we have a God. We are thankful to be met on a journey by those sent from God to minister to us more than we ever thought possible to experience.
And tonight, from my deepest bone marrow trying desperately to repair, I am thankful that while I count out the days from chemo, that I am no longer counting the dreaded days until the next chemo.
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