Expect the Unexpected

bone marrow room

Bone Marrow Exam Room (with a view)

…raw…today i feel completely devoid of strength and hope…

 I slept very little last night and when I woke this morning, tears were on my cheeks. Images from yesterday’s bone marrow biopsy played through my mind and I realized that I had forgotten the biggest challenge of being a patient: to expect the unexpected.

I have been in remission from leukemia for 6 years. And the Crohn’s disease has been in remission for the majority of the past 9 years. Basically, I have forgotten how hard it is to be a patient.

Yesterday was a brutal slap back into the reality of how hard it is to be a patient. And I don’t want to be a patient; however it seems that right now I don’t have much of a choice.

The cancer clinic is in a different  building than it was back in 2007. And while this newer more expensive building might be brighter and shinier to some people, I miss my sunny spot seat in the old office. I miss the old system. I have never liked the new building and, and yesterday only made me dislike it even more.

The practice I am with recently merged with another practice. Any adult understands that you don’t merge offices, departments or companies  without a lot of stress.

In addition to the merge, my procedure took place on a Friday afternoon.  Fridays are hard in hospitals. I am not currently working in health care, but I have spent the majority of the past 19 years working as a speech pathologist (speech therapist) in hospitals. Fridays are unpredictable and often run long. Not only was yesterday a Friday, it was the first Friday after the holiday season (after 2 oncology systems merged) so the staff were tired and I get it.

I am a pretty forgiving patient because I understand that working in healthcare can be both rewarding and emotionally draining, so when I saw fatigue and stress on the faces of the staff yesterday I tried to take it with a grain of salt. However, it was a bumpy ride. There were steps that were forgotten and had to be done at the wrong time and apparently I have had so many procedures over the years that my tolerance for twilight sedative is so high that it no longer sedates me.

I felt everything.

Suffice it to say, when procedures are universally recognized as being very painful, that is because they are very painful.

While they pressed me down and drew samples of fluid and bone from my hip, I squeezed the nurse’s fingers so hard that I was shocked to see they were still attached to her hands when the procedure was over. Tears streaming down my face, they coached me to breathe until I finally screamed “I hate this so much” and they kept saying “I  know, we are almost done”…”breathe”….

When it was over, they rolled me onto my back so that my throbbing hip would press against this sealed pack they made to cover the puncture. I felt embarrassed and apologized for my emotional outburst during the procedure. They said “you were not cursing at us, that is what usually happens”. My heart was hollow as I thought of the many, many times I have said that exact same sentence to my patients or their family members. That may sound funny coming from a speech pathologist, but you have to understand that most of my patients were recovering from trauma so they were in and out of various states of consciousness, they had broken bones, they were often on ventilators; all of which meant that the things they had to do during evaluations or therapy would often trigger enough physical pain or fear that they would act out. Yes, I have had many patients curse at me.

I totally understood what the staff were saying to me yesterday: “we had to do the procedure, it hurt, you screamed, understandable, move on”.  and i felt so small…

While my sister was driving me home, my husband prepared a cozy fire, he washed and dried a new pair of super soft pj’s for me, he got things we needed from the store. He was ready to help make me comfortable. As soon as she pulled into our driveway he came out to help us. I was so broken that I did not even speak. With his help, I limped into the house. I asked for time alone and changed into the soft pj’s in complete silence. About an hour later, I hobbled to the kitchen. I turned around and literally just fell into his arms sobbing, while I told him bits and pieces about how hard it had all been.

As if the events of yesterday had not been tough enough, I ended up with a very bad migraine last night triggered by the medications at the hospital, dehydration from the day and the fierce pain of the procedure.

It was late, I was in bed and my entire body was shaking from the pain of both the migraine and bone marrow exam. I had taken so much medicine that I could not take anything else. I had nothing left but to bury my head into an ice pack and beg God to grant me sleep. I remembered the day when He seemed to audibly pronounce the word “strength” off the coaster across the counter-top at my parent’s house.

strength

I wondered just exactly how much strength was God trying to say that I will need? I don’t know right now. I know that we are at a huge pause and should know more soon.

Today things have been so dark and sad.

My hip is starting to feel better but I am still really crushed in spirit. And truth be told, I am scared. Yesterday they gave me the recent labs and the level of the leukemia marker. The number and spike from my visit a month ago felt like a sad exclamation point on my heart showing that the leukemia marker was back. The graph was higher than it has been since I have been looking at it (7 years) and for the first time since remission it said in capital letters, bold print

DETECTED

I wish we could go a million miles away. I wish I could be healthy again, I wish we could go out and have fun.

I am sure anyone reading this understands that trapped feeling of desperately needing to breathe but not being able to escape a situation, because it happens to everyone, just different circumstances.

On the bright side, I actually had what I am calling a miracle. The crohn’s pain is gone. So many people have been praying about that very specific thing and it stopped. I did not go on steroids, nothing changed. I just woke up yesterday morning and it was gone. And that is not how crohn’s works. I have lived with it since 2001. And it does get better, but not that fast. I am not eating salads yet (because I don’t want to end up in the ER) but I have been able to add toast and even homemade chicken salad for lunch. Which means I got to “cook” today. And I love to cook. So while it was really just very basic chicken salad, I still got to mess around with ingredients. And that took my mind off of everything for a while, and I was able to eat it, pain free.

Today we took our Christmas tree down (I think it is understandable that we are running late this year). As I wrapped ornaments I tried so hard to absorb the words “joy” “peace” but they just rolled off of me; they did not even bounce off me, just rolled away, they never even engaged. I did try. I need those words to engage with my spirit. Please pray for a renewed sense of strength, hope, faith, joy. I need to get my fight back.

Wrapping it up in gratitude

Today I am grateful for

  1. My husband’s love
  2. My sister’s company yesterday
  3. My family’s love
  4. These soft pj’s
  5. I can eat again

***My husband just called me to the window, 3 deer were in our front yard, they were beautiful***

5. I am grateful and feel happy that I got to see those 3 deer

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