Grieving

I keep pinching myself and smiling, then just sink down into my couch, feeling how good it is to be home.  Being quite a vagabond and living out of a suitcase the last five-plus weeks makes being home all that much better.

Even though my physical therapist scolded me for it this week, it's great to sit in front of my computer again - I am hopelessly horrible at writing on small devices. I need to see the "whole sheet of paper" in front of me before I press "send".  Obviously.  Those of you that have endured my poor attempts at "snippet-replies" know what I mean here.

I am swallowing food better.  My doctor told me that they had "kissed" my trachea and esophagus during radiation, and that it would heal up, and it is.  Faster than they thought.  My toenail is growing back, and the other toenails that had threatened to leave as well, seemed to have decided to stay put for a bit longer.  My skin is looking better already.  Feeling better already.

My ribs on the other hand, have started a coup.  Part of my rib cage, mostly the left side and back, feel like I have been kicked by a horse.  Certain movements like coughing and sneezing and getting up out of a chair can kind of make me stop breathing.  My deep breathing exercises that my physical therapists gave me are rather difficult all of a sudden.

I called my doctor's office and talked to the nurse practitioner who smiled at my description and said "we wondered how long it would take to hit you, Karen.  This is normal, especially after five weeks of radiation."  She gave it some correct terminology, and what I repeated back to her was "so,,,, you are telling me my chest muscles are cooked and my ribs and cartilage are barbecued - just so I am understanding this correctly", and she said "well, kind of, yes".

While I am smiling, and glad all over for the end of my treatment, for the ability to be *home*, for the fact that Scott and I both are feeling better than we have for a long time; even with this latest symptom arising, bringing with it fatigue - for the first time in fifteen years I can sleep at night without the help of drugs - heck I can even sleep during the day now without any prompting or help whatsoever - but despite all the little things still hanging around - we are smiling.

If we were dogs, we would be wagging our tails so much our whole bodies would be swinging.

Even so, daily, I still do a little grieving exercise that a good counselor taught me a long, long time ago.

In the front and center of my mind, I remember that I met a lot of people on this journey that aren't smiling today.  Can't smile today.  I know there are some still in the fight.  I know there are some that are no longer in the fight and have passed on.

My first week of chemo was at the James Cancer Center main campus, four days a week for five weeks as I was in the first phase of a study drug trial.  Some days I got a room to myself, other days I was in a small curtained stall waiting for drugs and blood pulls.

While waiting in those stalls, I came to a cold realization while listening to other's intake and evaluations - that some in that "Phase One" department were doing the new drugs for no other reason than to help out science.  Their cancers had overtaken them, won the battle, and yet these people were doing the drug studies so the lab and doctors could see what these new drugs did to active cancer cells.

They even went a step further - Phase One is mostly about determining "the highest dose tolerable" - that's not a field of daisies you walk through in that wing of the hospital.  They were basically being overdosed, then underdosed, then overdosed again to see how their liver reacted.  To see how their heart reacted.  To see how their digestive tract reacted.

Sometimes, it felt like you were four steps from a deep-pitted gulag - some type of torture chamber - only your cell was sterile and clean, the inmates friendly, and your caretakers cheerful and kind.

If you get cancer in the next decade, you owe a great deal of thanks to these people - they literally suffered much at the end of their lives so a doctor could know what dose to give you of their new treatment.

I had a hard time grasping their courage - cancer treatments have not changed a whole lot in some ways for decades and decades - and a lot of that is due to the fact that there just aren't as many people willing to become human guinea pigs.  I would listen to these intakes and realize what they were doing, and then try to get a good look at these people when they got up to leave - I didn't know how they could choose to not take the last couple of months or weeks of their lives to relax a little, get off of chemo, and feel a little better for a bit.

Some were sicker than sick.  And yet they came back day after day, week after week.  I remember listening to one man give his last evaluation - you couldn't help but hear it all being just twenty four inches away with a mere piece of cloth between you.  But his study drug coordinator went over his basics, they hugged and chatted, then she instructed him to keep calling her the next couple of weeks.

That was all he had.

I remember these people that I barely knew but was suddenly connected to deeply, and I grieve.  I was there in that group with a different outcome, for a different reason.  I was grasping at a hope for myself.

They were wanting their lives to count for others.

It's all still overwhelming when I think on it and remember them.

And also, the last two weeks, I grieve another grief as well......

***

When my children were young I was faced with some horrible information.  Horrible for others concerned, so I had difficulty understanding my reaction.  I knew I was angry and hurt, I knew I needed to protect and shield and help the ones involved, yet I cried in the shower every morning so others couldn't hear me.  I would take long walks to scream at heaven, and cry again.

I didn't understand my reaction - I was not the one who had been horribly hurt, horribly scarred, horribly had their hearts cut.  I knew I was dealing with a blatant betrayal by someone I thought loved me, but knew by far it was not the worst suffering I was witnessing.

I went to a counselor, a really good counselor, who told me what was happening - even though I was not the one who had been hurt and assaulted - I was grieving.

I told him "nobody has died, I was not the one wounded, what do you mean?"

He explained that many life events cause us to grieve and if we do not handle it properly, it rules us for the rest of our life.  We misplace anger for the grieving and dump it all over others.  We make it into a lot of things it should not, can not be.  I instantly caught the idea, knew what he was saying was truth.  Memories of folks around me that had never properly grieved their pains in their lives instantly came to mind and finally made sense.

Realizing that, I asked him how long it sits on you.  How long is your soul crying while you are living your life?  How long does your spirit weep when you cannot?

He said there was no time limit.

But, he gave me a tool to use, an instrument to help me walk through it.

He had me envision a door, then a room and a comfortable chair to sit down in.  He told me to open that heavy, solid door.  He told me to walk into that safe-room and sit down.  Then he told me to weep and grieve.  When my spirit and soul felt cleansed and spent, I was to get up, leave the room and close the door.

It was amazing.  I asked him if it was all "fixed".

He told me no, that you do that daily.  Really?  How long?

Until you don't need to open that door any longer.

He gave me one more most important caveat - there was one holding the door open for me, then following me in and catching my tears.  He told me that Jesus was there for every step I would take in this grieving process.  What's more - the Bible said he even captured our tears.

My tears were measured and saved.

That was a little different than the information I had been given previously - good solid people don't cry.  You don't grieve.  It shows weakness.  It shows an inability to look at life on the bright side.  It shows someone just feeling sorry for themselves.

All that was debunked and thrown out.  It's mostly spewed by those not knowing their Scriptures very well.

Putting perimeters around my grieving, yet forcing myself, allowing myself, maybe even gifting myself with the ability to grieve, unloaded my life.  While I would think about it all during the day, now knowing that it was a big issue, and that my body, my soul, my spirit were reacting to it and needed a safe place to go to grieve, changed my life.  I could put it on the shelf during the day, not because I was doing the classic "christian" thing - pretending all was well, everything was ok - but I could put it on the shelf during the day because I knew that there would be a proper time to take it off the shelf, explore it, weep over it, mourn it, then eventually put it back.

It has worked for a lot of years, for a lot of griefs.  Thank you Ken Jacobs.  I think because I learned to grieve when I was thirty, I was able to deal with cancer at fifty.

Because he taught me how to recognize grief, then grieve properly, I can laugh while getting punishing chemicals pumped into my body.  I can enjoy life's sweet moments and not feel like I should not because all is not well.  There is a time and place for my grieving, and a time and place to love, and laugh, and live as well.

***

So while we are celebrating the end of my treatment this week, we are also grieving as only mums and pops can do over their grown children.

Over three years ago, Heidi had a tumor removed from her brain.  While the surgery was a success, it left her fighting a daily battle with many and sneaky auto-immune disorders.  Her brain was saved from the invader, but her body could not react nor respond to that human-scalpel-invasion properly.  Her body - even though she has done everything to make it get well again - has gone a little crazy.  Having dealt with auto-immune disorders myself, I know the daily battle.  I know the icky feeling when realizing your greatest enemy is within you.  It pops out in varied and nasty forms - MS, Crone's Disease, rheumatoid arthritis, or my body's choice of options eventually - Grave's.

There are hundreds of ways your body can go auto-immune crazy and try to do you in.  I talked one day with an EKG technician who had done lots of ultrasounds and body scans in his years within the medical field and he felt that "they" would find the cure to cancer, when they found the cure to auto-immune.  I think he might be right.

But Heidi has dealt with this cauldron of crappy symptoms, diagnosis, issues and pain for over three years.  It's a medical rabbit hole you hope to never have to go down.  It's exasperating to doctors, more-so to the patient.

She called me over two weeks ago and told me that she had blurry vision in her one eye.  I had to sit down.  It felt so much like the phone call we had received when she called to tell us about her tumor.  My blood went cold.

She went to the emergency room at OSU and waited most of the day for an MRI and lumbar punch.

I went down and sat with her - complete with my mask on - while Wes went home to tuck two scared little girls into bed.

While I waited they took her up for the MRI.  Then the doctor came in at 9:45pm and said he was ready to do the lumbar punch.  Since he looked all of twenty years old, I respectfully asked him if he ever did one under ultrasound, and he replied "no, don't need it"....

His first attempt ended up with Heidi's heart rate plummeting to 34, her blood pressure not registering, and her skin became so clammy her sheets were wet after they laid her back down.  I asked him if she could be having a reaction to the lidocaine, and he said no, and when Heidi kept murmuring "I don't want this", he stopped and left the ER stall.  He had punched the lidocaine so fast that she had a goose egg on her back.

I didn't feel good about it at all, called Wes to come back in to allow him to make the call.  The head nurse came in twice and told her "she did not have to do this tonight".  That kind of caught my ear but the doctor came back in close to midnight and coaxed her into doing it again - telling her she could lay on her side this time.

I stood towards the end of the bed, watching.  After scrubbing her, he started, and inserted it into her spine a couple of times.  Then I started counting.  At the tenth punch, I wanted to yell "STOP!!"  At the fifteenth punch, I had to squat down close to the floor because I was becoming queasy myself.

I know you can't punch a vein too many times, and had no idea what this was doing to a spinal cord.

He finally got spinal fluid at punch number 19.  Your read that right.  I counted at least nineteen punches into her spine before he found spinal fluid.

When your kids are adults, it gets no easier watching this type of procedure.  I looked away so the doctor would not see me glaring at his pompous ass.  I made a joke so Heidi would not get scared if she saw me angry.

But the spinal tap showed that it was not MS.  Everyone in the small ER room was enormously relieved and ready to forgive a doctor that could not admit he could not do what he had done easily many times.....

The next morning I called Heidi at her specialist's office two buildings down from my treatment center and asked her if she wanted me to run her some Starbucks as she had been instructed to drink caffeine.  I had not been there for more than three minutes when they were called in for the final consult with her doctor.  They invited me to come along.

I went in, sat down, and looked at the MRI eye scans on his multiple screens.  I tried really, really hard to not cry.  I tried really, really hard to hold my emotions off of my face.  I tried really, really hard to not look at anyone.  I don't know a lot about eye scans, but I do know that they should look the same for both eyes.  One looked like it had a clove of garlic behind it.  I also had an inkling of what her prognosis might be and what that hideous looking inflammation meant.

She had lost her sight in her right eye.

Heidi held it together remarkably well.  She asked all the right questions.  Even thanked her specialist and his fellow.

I can be remarkably strong when my kids are involved.  I went down the elevator with them and followed their lead on how the mood of the moment should go.  It was light.  Then we sat down to discuss lunch options, and Heidi started to cry.  She realized immediately that not only had she lost half of her eyesight, but she could possibly lose the rest if this happens again.

I had wanted to ask the doctor that question, but couldn't, not knowing if they realized that or not yet.

I'm grieving over Heidi.  We are grieving over Heidi.  Scott will tell me it's going to be fine, then puts his head down to cover a tear on his face.  We hate that she has to go through this.

Losing your sight in one eye is not so easy.  Driving needs to be relearned.  It causes pain and strain.  It's scary.

But even worse, living with the knowledge that your body could once again turn on you, and you could lose the vision in your other eye as well, is a journey I do not wish for anyone.

Please God, not my Heidi.  Please God.

I thought about all the struggles she has already walked through.  All of the fear.  All of the pain.

I can't, don't, want to think about her having to go through yet another difficult, tortuous life event. I can't bear to hear people say things that cut to your soul - good meaning people that say things that have been said in the church for years - but that cut to your very soul when you are the one on the receiving end of such hurtful words.  Time after time.

"You'll get over it."  Really?  "Let go and let God."  It's just not good reasoning folks - if that were true in instances such as this, you realize quickly that you just did "let God" - and look what happened....  "there's other things that are worse".  Really?  Why, why, why do people of God feel the need to minimize every single pain?  Just for the record, Jesus never did.  Blind?  He healed them.  He didn't tell them they should not worry because they could be blind and deaf.  He didn't tell the paralytics they could be worse - they could be dead.

He never for a minute told me I could be one of the folks in that Phase One wing of the hospital that knew they had no hope, and therefore I should not grieve my own disease.

He never minimized pain nor grief.  In fact, He held the people of Israel accountable for the hurt and grief they had caused the prophets sent to them.

One of the rabbis I listen to teaches that Jesus' ministry was all about the hurting, the downtrodden, the people put on the fringes by the people inside the temple by their wrong ideas and flippant responses.

And yet we still do that very thing.

I don't know what to say to her other than "I love you".  "I wish this had not happened to you".  "I hate this".  It sucks.  There is not a whole lot of good about it.  I'm not going to hand her a list and tell her how her life is going to be gloriously enriched by this.  It might, but that doesn't make it ever easy nor make it less painful.

I do tell her what I learned long ago - I tell her to grieve it.

If my kids say at the end of my life that they learned nothing else from me than to "be real", to be true, to live honestly and to love and trust a God in heaven that we can never fully understand, then I will feel like my life did some good on this earth.

And to the suffering, those suffering anything, I simply say "Grieve it".  And as you grieve it, remember that there is One that loves to be invited into your room of grieving to experience it with you.

And never forget that for whatever reason, He captures your tears.

I don't know why, I just know that I trust the One who said it.

***

I stayed with Heidi the last week and a half of my radiation treatments.  I drove Addy to school in the morning - which was such a joy - then continued on to my treatments.  Millie went with me sometimes.

One day she put on her new dress that she received as a gift for Christmas that has a matching dress for her doll.  If you don't know Millie-bean, know that this is most uncommon.  She prefers staying in her footed pajamas all day if possible.

She told me she wanted to "be adorable" for the ladies at my treatment center.  They were so incredibly kind to her.  One of the volunteers took her for a walk to meet each person that worked there, and as they chatted most of them learned about the incredible and extreme care Millie puts into being a "doll-mommy".

She loved going with me, but I don't think she will understand how she affects the lives of others with her obvious love of life; her joy at being able to play and explore and learn; her absolute trust of others to listen to her and respond to her world.

I don't have a lot of answers, but I know that God gives us joy on the most difficult of journeys, and somehow that joy is so many times wrapped up with children and their sincere and simplistic view of life.  And their total trust that every adult in their life has their best interest at heart, and every adult will help them and love them and care for them properly.

So in the grieving is joy, and in the joy grieving.  God promised us deep and unfathomable mysteries, of which I witness more than I even knew.

I pray my eyes stay opened to heaven above, not what the worldly church teaches about heaven.

And I thank God that He sent me one to teach me some of the fundamentals of heaven - how to grieve, and how to live with joyful moments in the midst of it all.