The importance of "me do it"

 

This is one of my favorite pictures of me, maybe two or three years old

There is little doubt that the hand I have personally been dealt lately kind of stinks.  In the grand scheme of things, the fate of one little old lady doesn't matter so much...and I am concerned about the world situation like everyone else. I am learning though, through all of this how feeling helpless to do things for myself, makes the burden of both my personal situation and the world even heavier. 

It is the nature of small children to be trying to do things themselves.  I remember when my kids were little and I would be trying to get them dressed and off somewhere, for example. and they would insist "me do it".  I often let them, which resulted in some of the most interesting outfits ever created, but I digress.

What I didn't realize, is that though I can't speak for other adults, it is also MY nature to want to do things for myself. This came as somewhat of a surprise to me.  For a long time I have been more focused on doing things in service of others....students, family, etc. I often thought, I just wish someone would wait on  me.  Be very careful what you wish for. 

Chemo tired

When I was first diagnosed with cancer and started chemo, I would get so tired...some of the meds drove my blood sugar through the roof which added to the effect.  And I was grateful that when I ran out of steam, there was either my wife or a family member around to help me. 

First walk post surgery

Then, out of the blue, I had an arterial blood clot in my left lower leg and had to have emergency surgery to repair it.  While they had me on my feet, getting to the bathroom and sort of shuffling down the hospital hall within hours, my mobility had (has) been seriously impaired. This came as quite a blow for someone who was doing races only days before.  

Needing help to get out of the chair and hobbling back and forth to the bathroom as my major form of exercise got old VERY fast. Relying on others for most everything else, though I appreciated the help and they did it gladly, made me feel whiny and demanding.  

The PT at the hospital told us the best way to to get the strength back was to walk (with a cane or on a bad day a walker), but it was sore and it seemed SOOOOO hard.  Still, I have been an athlete and I knew that nothing ventured, everything lost. It just doesn't do itself. 

What could I do?  Motivation was hard.  Well, first of all I asked for PT...which my oncologist actually ordered, though the vascular surgeon would have done so at the next visit.  They were in quite close contact. By late the afternoon that the order was put in I had a PT who is also a teacher/researcher at UW and who works with some complex cases.  He helped me learn how to understand the ups and downs in strength and ability that chemo and crazy blood sugars will cause. 

Being put through the paces at the PT gym

But even before that, I decided to call on my sense of humor, and my closet full of costumes.  Glenda and I did a rendition of "Putting on the Ritz" as Frankenstein and the monster (not included here) to honor my staples and walking with a cane.  

I put on rabbit ears and declared, "Rabbits, always hopping, never stopping!" as I limped around the kitchen table. 

Never stoppin'

As the cabin fever took hold, I decided to try a walk in the driveway in lieu of a one mile race I was signed up to do for a virtual challenge.  The race was called The Tin Man's Heart and, naturally there were costumes.  I have to wonder what people driving by must've thought, but mostly I was excited that I had walked for 5 and a half minutes straight and with lots of help made it back up the stairs and into the house. 

Tin man's got heart and so do I

Meanwhile, the PT suggested that for mental health reasons, as well as physical ones it would be good to get outside or at least out of the house more often, so long as we could do so safely.  Once we finally had a warm (50 degree) day, we did an outside walk.  Never was any walk more glorious!  I went 10 minutes without having to stop or sit.  Glenda followed with a wheelchair, in case. This walk gave me confidence that I could do it.  It made me start thinking about how I could carry things, do more things for myself.  It made me feel strong.

Best walk ever!

I started trying things, getting things for myself, taking a few extra steps whenever I got up to do something.  And my mood improved immensely.  I didn't feel whiny and demanding any more. I felt more able to cope with all the crazy.  Do I still need help?  Yes, notably with stairs and with getting my socks and shoes on and with showering because I'm not completely steady on my feet.  My stamina needs improving, I wear out quickly especially in the days post chemo.  But do I think I CAN do it and get back to at least some self-care and physical activity? YES YES YES and that makes all the difference. 

Bonus, today's mall walk, too icy to walk outside

Lions and Tigers and Bears, Oh My!

 It has been a while since I have written here,  and in the meantime I signed up for a Wizard of Oz themed challenge group....so I seem to be thinking in terms of Oz when I think of things lately.  And with what I am going to share here, I suppose I could also be talking in terms of twisters and flying monkeys, too. But Lions and Tigers and Bears and a dark and scary forest seem as good a metaphor as any.

Now let's back up to the very last day of 2021, which was intended to come in more like a lamb than a lion.

Run into the New Year 5k....aka New Year, New You (ewe) 5k

We had combined a local race with one of our virtuals, complete with a play on words.  It was cold, and I wasn't exactly feeling it, but intended to walk the race.  The first two miles were great...but I hit the skids on mile 3.  Hard breathing up the hills and a stitch in my side.  Still I finished wearing my goofy sheep hat.  

I had been struggling on and off since late summer with high blood sugar and while things were improving, I just assumed that this side stitch and subsequent back ache were more of the same.  The back ache subsided...the side stitch didn't.  It wasn't unbearable, but it didn't feel good. And by the 2nd, I decided I didn't want to wait to see my doctor. So off to Urgent Care I went.  

Blood tests and annoying poking and prodding followed (little did I know). At the end, they said that it was likely gall bladder and I should contact my doctor to set up an ultrasound to look for gallstones. They took one last blood test and sent my on my way.  

I was barely home when the phone rang. It was the doctor telling me the last test was considerably out of range and recommending that I go to the emergency department at the hospital. So off we went.  After much scanning and more poking and prodding, I was admitted with a suspected liver infection. After 2 days of scans and blood tests and biopsies I was sent home with a provisional diagnosis of liver cancer. 

One definition of trauma is when you get too much coming at you too fast. The first few weeks of January were traumatic. Finally seeing the oncologist, narrowing down the diagnosis, getting information on top of information, starting chemo....  I studiously avoided Dr, Google to avoid even more (and more confusing) information overload. The final diagnosis was Primary Intrahepatic Cholangiocarcinoma, a rare cancer that starts in the bile ducts. It does not appear to have any environmental or hereditary causes, in short a glitch in the matrix. If you want to know more the best source is the CCA foundation.  Only about 8,000-20,000 cases in the US ever year. The prognosis is guarded at best depending on a lot of things. I am not in any particular pain at this point, and am doing my best to move forward.

The emerald ribbon for liver cancers and the bracelet for the Cholangiocarcinoma foundation

Well, that covers the lions and the tigers, but maybe not the bears... because there is more.  In late January I had my first chemo treatment. It entails IVs, and about 4 hours of infusions including pre-treatments for nausea and 2 different chemo drugs.  It also includes a few days of taking steroids, which is a sure way to drive your blood sugar through the roof if you are a diabetic, which I am. 

First chemo. Channeling Ted Lasso and holding the rabbit Glenda supplied, affectionately called chemo bunny

I am hard to get an IV in and the steroids did their business on me...though oncologists don't get too excited about it until your sugars are miserably high.  Still I was functioning OK.  Was able to get out and walk a little.  Even went to the pool for a water run on the second day.  The third day I was really tired and out of it, felt like I wasn't hydrating enough. Feeling like I'd tweaked something in my left leg on my workout.

By Tuesday the "tweak" became really painful, and after consulting with the oncologist's office we went again to the ER...and spent 10 hours there. I remember distinctly in triage the doctor pronouncing that I had good pulses in both feet, so she wasn't too worried about a clot.  By the end of the day I knew that I had some arthritis in my hip and some disc problems in my back (none of this a surprise...fairly age appropriate)...and good news, no bone metastases.  They also did an ultrasound looking for veinous clots.  They decided that it was likely some inflammation flaring up, prescribed advil, heat, ice and sent me home.  

For 2 days I followed the plan, and it got better, then worse, then better, then worse...you get the picture.  Until Thursday after lunch.  Glenda noticed that my foot looked funny...kinda of purple and my lower leg was cold.  Another call to oncology to tell them, as much as ask them, that we were going back in to ER.  

Flashback to Tuesday, only this time the triage doc, a young man, said, "I'm not finding any pulses in the foot or the back of the knee."  And quickly apologizing as he reached for the pulse in the groin...which was strong and steady. I remember thinking, "Well shit, that can't be good." but not being being panicked until we were put in a room and they were trying to find pulses with doppler.  At that point I freaked out as evidenced by my blood pressure...and was quickly given Ativan, a powerful anti-anxiety med, and rushed off to the CT scan.

The rest of the night is remembered in flashes.  Someone declaring that they'd found it. Doctors and nurses dashing in, telling me that Glenda was being brought up to hug me before we went to OR.  Glenda's worried face saying they'd found something, but I would be fine and she would be there when I got back to the room. Rolling into the OR and then not much until I was back in the room. 

Back from successful surgery.

The it, that they had found was an arterial blood clot, which is rarer than a veinous one, and had not occluded anything by Tuesday. And thanks to Glenda's being observant and getting me there quickly...and the quick work of the vascular team at UW, it appears that the function in my leg has been completely or almost completely preserved. I'm so grateful. But it adds to the long road ahead. It was definitely another trauma...new information, new medication...too much, too fast. It has taken awhile to find our level.

I must say I have an excellent supportive team of family, friends and medical professionals.  I feel exceptionally fortunate to be in Madison with a medical school and an excellent comprehensive cancer center in the Carbone Center.  And, of course, Glenda....she is my rock. Having them doesn't mean this whole situation hasn't been stressful and traumatic, but it does mean we have support while feeling our way along.