Part 1: Life doesn't always go according to plan...

It's hard to believe I started this post nearly a month ago.  I thought I was getting back into the blogging saddle, but little did I know what was right around the corner.  

It all started on Sunday, August 13th.  It was a beautiful day with our whole family together.  One of the important items on the agenda was to buzz my hair.  I had been missing having all our grown kids together, and they responded admirably to my request to get together.  And middle son's girlfriend agreed to cut my hair off. 

I was told (and read online) to expect hair to begin shedding approximately 2 weeks after my first chemo treatment.  I saw losing my hair as something of a rite of passage during chemo, and didn't view it as all that traumatic of an experience. That said, I appreciate that it is for many people.  We're all different.  Being practical on so many levels, I knew I wanted to be proactive with a plan to buzz it before the shedding began to make a mess.  I couldn't have timed things more perfectly, as the morning of the scheduled hair cut, my between-chin-and-shoulder-length hair starting shedding like crazy.   I was so glad for that.  While I didn't want to deal with the mess of my hair shedding randomly, or experience the emotional toll of my hair thinning, I did want to experience on some level the shedding.  I didn't think it would feel exactly real if I cut if all off before it actually started to come out on its own.   I'm not sure if excited is the right word, but I was pretty pleased that the plan to buzz and the serious shedding happened on the same day.  I felt really lucky somehow.  

If that sounds weird, all I can say is...  in an experience that has a lot of scary and bad stuff in it, I try to take hold of the good where I can find it; watching my hair fill up the garbage container, and not the shower drain, felt like a win.  

It was a good day in all respects.  While I didn't feel all that emotional, I will admit to feeling a tad nervous before the cutting commenced.  But commence it finally did, everyone taking a turn with the hair clippers, my kids trying to encourage me that I could rock the no hair look, wearing caps and scarves.  Young and/or thin women may look cute, even beautiful, sporting their brave bald heads, but I am neither and I was pretty sure I'd feel less self conscious with a wig when out in public.  That said, I sure did appreciate my kids' confidence in me.  But that evening after everyone had gone, looking at myself from all angles in a mirror, I made a mental note to go get the wig I had picked out a week or so earlier.  The day I picked it out (out of a number I tried on), I couldn't quite make the commitment.  That Sunday evening, I decided there was no need to wait any longer to bring it home.  For what it's worth, I discovered I have a huge "Stork Bite" birthmark on the nape of my head.  Imagine, if you never shave your hair off, you may just never know what is lurking under there...

As Sunday came to a close, I began to have a bit of pain at the surgery site on my neck where an infusion port and catheter had been surgically installed about three weeks prior.  While my neck hurt, I didn't get too worried until Monday when I could see a clear sign of infection.  At that point, I didn't waste any time calling the surgeon, and I was given an appointment at the end of the day.  Relieved to be gotten in, hubs and I made the thirty-minute drive to the surgeon's office to get it checked out.  The surgeon immediately diagnosed an infection, but in hopes to save the port, a plan was made for me to start an oral antibiotic that night, and the next day come back to the hospital for an antibiotic infusion.  Feeling really glad I had gotten myself to the doctor quickly, I was relieved this was the plan.  We were so relieved and feeling good about the situation, we stopped on the way home to grab supper.

It was probably an hour and a half later, after getting back home and dropping me off, Greg made a run to the pharmacy to pick up the antibiotic.  Just minutes after he left, I began to feel chilled, and before he could return I began  experiencing uncontrollable shivers and shakes.  Never in my life have I had such wicked shivering and shaking.  I didn't know a body could do that.  Even a low-grade fever is dangerous for someone on chemo, so I kept taking my temperature. At first there was nothing notable, but within a few minutes, the thermometer read 100.4.  Normally, that's not all that exciting of a fever, but after starting chemo I had been instructed to call with a temperature of anything over 100.  My instructions were 100.1 to be precise.   Being home alone, not sure how long Greg would be gone, I started to get worried at how fast a serious fever might grow.  And how long I could tolerate the insane shivering and shaking before I had a muscle spasm.  

I took Tylenol and called my oncologist, and I think he had my surgeon call me.  It was decided that we needed to go straight to the hospital, which is on the same campus as the cancer center - where I had been just a few hours earlier.  The surgeon told me she would meet me in the ER, and she would remove the infusion port that night.  A half hour later we were at the hospital and I was checking in at the ER desk, and within another hour, I was being wheeled into surgery.  The speed at which it all happened was amazing.  I don't know what it's like where you live, but around here, visits to the ER have become legendary for how long one waits to be seen.  And even after you've been seen, sometimes you're lucky to get a room.  It is not uncommon (I've witnessed twice now) to see patients in beds in the hallways.

I suppose because of my doctor's orders, I was on the short list and I was grateful they got me checked in pronto.  Port and catheter were removed, and sometime before midnight on August 14th I was recovering in a beautiful room on the cancer floor of the hospital.  It took until the next day (Tuesday) to confirm I had a staph infection - it was all along the catheter and port.  And then by Wednesday I was told it looked like the infused antibiotics had cleared it up in my system already.  While I was weak, and very tired from the surgery and medicines, no doubt, I thought I was the luckiest gal alive to have a scary infection clear so quickly.

Early Wednesday afternoon, a hospitalist visited my room and told me I could expect to go home later that day.  My middle son happened to be visiting me at the time, and I was glad I had a witness to (and another participant in) the conversation.  Son (who just happened to be in the area that day) made plans to hang around and take me home when I was discharged - we were told it could take a couple of hours for all that to happen.  The hospitalist said he'd run the decision by the infectious disease doctor and oncologist, but he spoke so confidently about me leaving, I and son began making plans to get me out of there.  Son ran some errands, I got myself at least mentally ready to leave - nearly giddy with relief at the thought of going home.

Two hours passed, and when a nurse came into my room again, I eagerly asked her when I'd be leaving and she told me flatly, "You're not leaving today."   I told her a doctor had told me earlier that I could expect to leave in a couple of hours.  Doubtful, she checked the computer.  There was nothing there to indicate anything of the sort.

Confused that I would be left hanging like that, with clearly no intention of that doctor communicating anything different than he had told me earlier, I was stunned and understandably disappointed.   Not seeing any other choice but to accept it, I settled in for another night in the hospital, thinking and hoping I'd be leaving the next day.

This began possibly the most surreal experience of my life. 

To be continued...

Thank you Peggy B. for this sweet bouquet of fun and pretty flowers.