The Whole Story: Part Three - Reflecting on My (Almost) Presurgery Week

 

    The ten days leading up to my surgery date were full and challenging. We left very early Friday morning to drive across the state and share the news of my brain tumor with my brother and my middle son.  Our hope was to fly, but the flights were all full.  I think the drive was good for us though.  The mountains were absolutely beautiful. Snow, frozen waterfalls and lakes, everything seemed intensified, even more beautiful than usual.  As I sat in my brother's home that afternoon with him and his wife, knowing that I had to share soon, butterflies filled my stomach.  I couldn't believe how nervous I was. My heart was racing and I had trouble catching my breath. Finally my husband signaled me that I couldn't wait any longer and I needed to get it over with so I prefaced it with a request for secrecy regarding what I was about to share until all of my kids had been informed and then shared the news.  They were understandably shocked, but very loving and supportive.  We enjoyed the rest of our visit, playing games and catching up, and then when my son was off work we headed out to meet him at a local restaurant we enjoy.  It was so good to see him, it had been three months, but he looked pretty haggard.  He'd been working on his second quarter of his Master's in Social Work program which included a full course load as well as 20 hours of practicum (like an internship) and 20 hours of work per week, with homework and gym time on top of that.  I hated that I had to add to his challenges, as his mom I desire to lift his burdens not increase them, but I knew that he had to be told.  The butterflies filled my stomach once more, but with my husband's gentle prompting I started in.  I asked him, in his professional opinion, whether it was better to break difficult news directly or to gently lead into it.  He said I should just say it, so I did.  I told him, "I have a brain tumor."  Then I backed up and started telling him the whole story.  I was only a couple of minutes in when he stopped me to tell me that had I started out this way he would have killed me by now. So I guess he knows what he's talking about! We talked through everything we knew and finished our dinner, then headed back to his place to play a game.  He wasn't interested in talking more about things at that point, he clearly needed to process everything he'd learned.  When we finished the game, my husband and I headed to our motel and crashed for the night amidst the shouts and running sounds of every middle school basketball team in the state who were also staying there that night!

    The next morning we headed back over the mountains and prepared for our next sharing session.  Our oldest son gifted me a monthly game night for Christmas and this was the evening we had planned for March.  I messaged him the day before asking if his girlfriend could join us as I had something important I wanted to talk with them about.  She hadn't planned to come originally, knowing that after a long day of house painting she wouldn't likely feel up to games, but I knew that it would be better for her to hear it in person from me. My youngest son lives with us, so when he got home from work I quizzed him to determine where he was at with finishing his quarter with school.  This was (hopefully) his last quarter of his automotive program and he had two classes that he had tried multiple times to pass and had worked so hard for this time.  I needed to know that sharing this news with him would not derail his opportunity for graduation. Not knowing why, he assured me that he was on track to graduate even if he didn't show up for his last class on Monday. I felt like things were as good as they were going to get, so after we sat down and had started dinner I launched into the news.  As my husband was quick to point out, I shared differently with each of my sets of kids, because each of them are unique and we have different relationships.  Sharing the news Saturday night gutted me.  My youngest son held my hand and cried the whole time.  He has always been the one with the tenderest heart, the one who felt things the deepest - or at least as far as I could tell.  I was most concerned about how he would take it, but I think it was really good that I shared with him alongside his brother and his brother's girlfriend.  They were able to think through and ask the questions he wasn't ready to figure out, and they were able to put into words things he needed to hear.  They were all fabulous and supportive, offering help, looking for ways to be present. My oldest offered to come over every evening of the upcoming week, but we settled on him coming the two nights my husband would be serving at the homeless mission. Again, once we wrapped up, we played a game together.  I think that although the games were not purposefully planned to smooth over feelings, they did the job.  It offered a nice transition from the intense emotions of sharing to heading into the next step.

    Sunday morning we headed to church and our youngest son opted to join us.  He has been attending a different church for the past few years, but with the news he decided to spend time with us.  It was nice having him there and getting to introduce him around.  We've been visiting this church for a while now, but this was the first time one of our kids has joined us.  After church we grabbed lunch at a local restaurant we enjoy and then headed home for some much needed rest before our evening. My husband drove up to the airport to pick up our daughter. She's a flight attendant and she had a long layover in our area which I had planned to take advantage of in order to talk with all of our kids on the same weekend.  I didn't want to make anyone sit on the news without sharing for any longer than absolutely necessary.  They got back about 8pm and we sat down to a late dinner.  After a little catching up, I launched once more into my explanation of the situation.  She took it very well, and the news actually made a few things make more sense to her.  She has come with me to many doctor's appointments, and I had hoped that she would be interested in joining us the next day for my pre-op, which she was. 

    Bright and early Monday morning we headed into the City for my pre-op appointment with the surgeon's Physician's Assistant.  We brought our daughter and her luggage along since the airport was less than 30 minutes drive from the hospital.  The appointment went well despite my one concern, jaw pain.  After my last prolo therapy appointment at the end of January I began experiencing some inflammation in my jaw, similar to the inflammation I had after my first treatment, and at the site of my jaw surgery 11 years ago. It had come and gone over the next month or so, but since the beginning of March, it had progressively gotten worse. At the beginning of March, I saw my dentist, but because we knew that I had a brain tumor, but didn't know much else, he couldn't do anything diagnostic for me.  The previous week the pain had gotten so bad that I decided to go back to the dentist, as well as my orthodontist, to see if there was anything they could do.  The orthodontist adjusted my retainer some, which helped for a few days. The dentist took x-rays and did a visual examination, but didn't find any evidence of infection.  He suspected that the pain was coming from pulpitis, or permanent inflammation at the root of a tooth.  Because the neurosurgeon had specifically said that I was not to have a root canal before surgery, the dentist wrote me a referral to an endodontist to be used after I had healed sufficiently from the brain surgery. Between Tylenol, Ibuprofen and CBD I had made it through the weekend without too much jaw pain, but starting Monday I was no longer allowed to use NSAIDs before the surgery because they are blood thinners.  At the pre-op appointment I mentioned the jaw pain to the PA, but she said that she was not a dentist and if they had not seen any evidence of infection than it wasn't anything that should affect the surgery. Little did we know...

    While I took care of the pre-op labs, my husband ran our daughter to the airport for work, and then we headed home.  On the way, the pain in my jaw began to increase.  It seemed to come in waves, getting really intense and then receding for a while.  It would be 30-60 minutes in between the deep, aching pain that registered about an 8/10 for me, the same level I would give to labor pain.  When it was present I couldn't talk, I could barely breathe.  All I could do was hold on and wait for it to pass.  I felt like if I could just get home and put some ice on it, I would feel better. I tried that and, unfortunately, it got worse when I laid down.  After discussing it on the phone with the neuro nurse, I decided that it would be best to go into the ER and see if they could determine the source of the pain before my surgery. We chose to go to a local ER rather than driving back into the city.  I'm happy to report that I was seen quickly and moved through the process well at the ER. I was never brought back to a room, though, which I came to understand when they took me through the back of the ER to do imaging and I saw gurneys with people lining all the hallways. It was very disturbing seeing people in various stages of decay, some literally losing digits. Painful cries for help came from rooms with no one seeming to jump to their aid.  It made the several people receiving IVs in the waiting room make sense.  I got my CT scan and then was escorted back through to the waiting room. Eventually the PA who was in charge of my case at the ER called me back and explained that nothing concerning had shown up on the CT so they were going to send me home and he offered me some pain medicine to help.  I decided it wouldn't hurt to have something else in my tool kit so I accepted.  We picked up a small prescription for oxycodone and headed home.  Something in me, I believe it was the Holy Spirit, prompted me to check for drug interactions before taking it, and it's a good think I did.  It had a potentially serious interaction with the muscle relaxer I take every night.  So it turned out that, aside from once more reassuring me that I had no evidence of infection, it was a wasted trip.

    Tuesday was mostly a rest day, and then on Wednesday we headed to the City once more to do my final Spinal Stability Test to check the effectiveness of my prolo therapy on my thoracic spine. The test went well and it was determined that the joints had stabilized. The PT did a little extra work on my back trying to get a few ribs to twist back into place which increased the inflammation in my back, drawing it out of my jaw!  The rest of the day I had almost no jaw pain, and I hoped I had seen the last of it.  I enjoyed dinner and a game night with my youngest and oldest sons and his girlfriend and headed off for a good night's sleep, which was interrupted when the pain returned at 2am.  I had spent the better part of most nights that week sitting up in a chair hoping the Tylenol would kick in and take the edge off so I could get a couple more hours of sleep, so it wasn't terribly shocking.  The real disappointment was that the pain that had been coming in waves was now constant.  Tylenol would still take the edge off for 3.5 hours or so after I took it, but I could only take it every 6 hours since the maximum dosage per day is 4 grams, or 4 doses of 1,000 mg each.  

    Thursday I attempted to distract myself with one last counseling appointment, one last webinar for my travel agency, wrapping up a few loose ends on some reservations I was making for people, and a coffee date with a friend.  Yes, I was still in quite a bit of pain while I did all that, but I am fairly used to pushing through pain. I also had my husband run me some muscle relaxers to help. Friday I rested for most of the day and then went to my Mom's for one last Grandma Night (our family night where everyone gathers at my mom’s for dinner).  My middle son had travelled home that day as well and he met us there.  We visited, ate, played a game, and I headed home MUCH later than I had planned. 

    Saturday began the prep for surgery.  I was scheduled to be in an MRI tube for two hours doing a full scan of my brain and spine with and without contrast so that the surgeon would have clear imaging to work with.  I had woken up with a migraine which didn't respond to the medicine I took to stop it. Laying flat for so long really flared up the jaw pain as well, so by the time I had finished I was not in good shape.  My face was swollen on the left side and quite tender around the jaw, sinuses, and lymph nodes. I had become really worried about a potential infection as my pain and swelling had increased over the week, so I called the OR front desk to ask about their recommendations and after passing from one person to another it was determined that I should go downstairs to the ER (although they called it an ED) to get checked out. Over the next 6.5 hours I rested in a closet sized room (that was MUCH better than the ER I had visited earlier in the week), received another CT, was visited by a multitude of providers who eventually determined that I did in fact have an abscess and quite a bit of fluid build up on the roof of my mouth that would have to be drained.  A very young resident was sent down from the Oral Maxillofacial Surgery Center to do the procedure at my bedside, which was both super painful and awkward as I held and used my own suction device as he struggled with lighting, and finding enough room for instruments in the itty bitty space. I thought that having all that drained would decrease my pain, but once the local anesthetic wore off, which was quite quickly, it came back with a vengeance.  We were discharged and instructed to pick up antibiotics and an antiseptic mouthwash at the after hours pharmacy. We were also given the news that Monday's surgery definitely called off.

    I want to remember that Sunday. I was going to have all my kids with me at church for the first time in forever, but because I was at the ED until the wee hours of the morning and I really wasn’t feeling well besides, church was at home. The kids still all showed up and we had a nice day. To tell you the truth I don’t remember much from it, but we did get a family picture which I ended up giving out for Christmas.

Here's the thing: After weeks of build up and being told how important it was to have it taken care of right away, I was left with more than a little concern about my brain surgery being cancelled. I knew we couldn't go through with it as long as there was an active infection in my head, but I didn't know how to process this place I was in. All I was told was that the clinic would call me, "sometime next week" to reschedule. I still know for sure that God has me.  I know that He put things together for them to find the infection before it would cause serious harm.  I will trust Him for our next steps.

Proverbs 16:9 The mind of a person plans his way, But the LORD directs his steps.

The Whole Story:

Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter