To the Adventure!

The last week has been ... interesting to say the least. Hubby started chemotherapy yesterday morning. His schedule was given to us at that time. So his next chemo treatment is on July 29 (Wednesday), and then he gets a 1.5-week-long break from it. In between each treatment, usually during the run of a week, there are blood tests, oncology consultations, home visits from Home Care nursing, physiotherapist, occupational therapist, dietician, and on and on the merry-go-round goes.  Then he goes back on August 10th for the first treatment of his next cycle. 

I'm learning the vocabulary of cancer treatment. At first it was confusing, but I'm catching on.  

The time between the first treatment of one period of time and the first treatment of the next period of time (usually 4 weeks but in this case it's 3 weeks) is called a cycle. The period of time between the first treatment of the first cycle and the last treatment of the last cycle (which is 3 months) is called a round.

Free image from Pixabay

After the first round of treatment cycles, he will have a CT scan to determine if the drugs have had a shrinking effect on the tumors and lumps. If it is working, we go to the beginning of the next (3-month) round. Perhaps at that time, they'll move to a 4-week cycle (3 treatments, 1 per week, followed by a fourth week off). It depends on how well he handles the medications. There are at-home medications for him to take for the day of treatment and for the 2 days after treatment.

So far, after only one treatment, he seems well. He is not bothered by nausea at all, and if he is, then we have medications for him to take as needed for that. The best thing so far is that after we reduced his pain medication so that he wasn't quite so "out of it", he is more alert ... and even with the reduced medication, his pain seems to be less. What a relief!

On July 30, he will see a radio-oncologist to address the oozing / bleeding in the stomach cancer that was observed on July 8th. We'll probably set up some sessions to irradiate that specific area (that is, hit it with radiation) and get the bleeding under control (perhaps) as a result. I have no idea what that will look like or how often he will need to have these radiation treatments. Once I know, I hope I will have the strength to keep my readers informed. 

Caring for someone as close as my husband is to me - he is my best friend, after all - is taxing. Not only do I need to look after his nutrition and medication needs, I need to watch him closely so that he is sure to follow the requirements for looking after his toileting ... specific procedures like sitting to pee, closing the toilet lid, flushing twice, and then washing his hands. These procedures are to help to protect the other people in the house from exposure to his bodily fluids, as they don't know what the long-term effects of that exposure would be for those NOT in treatment. I also have to make sure that if he soils his clothing, it is kept separate from our laundry and double-washed.

And that is heaped up on top of all the things that need to be done to run a household, which, to my shame, has all been handled by my husband - until he was no longer able. Now, my daughter and I have to share the chores: dishes, sweeping, laundry, trash, cat's boxes, feeding the animals, keeping them hydrated, letting the dog out several times a day, groceries ... and also the unexpected duties that crop up. Neighbors have offered and still are blessing us with things we can't handle, like the lawn. Some have dropped off food. It all helps, but the day-to-day can be tiring.

There is much we don't know about all of this. For example, we are not sure if our insurance will cover the cost of the medications they are giving him, or if they do, how much they will cover (and how much they initially cost!!) and even though we have applied for PEI's Catastrophic Drug program, we have not heard whether he will qualify for it. 

At any rate, we are determined to be transparent about his journey and our own parallel journey as we walk this road beside him. His attitude is positive, and so far, so is ours. We surround ourselves with people and music and news that is/are positive, and we speak healing (see previous post) daily into his body. We know so many others are praying for him and sending him healing vibes. And I know that he is loved - so much more than he would ever believe - so very much by so very many. 

In a sense, even though we live on a fixed income, we feel rich, because we have the love and support of family, friends, and neighbors. And we are looked after by our Higher Power. What more could we ask for?  

Mother's Day - a journey

I have had a love-hate relationship with Mother's Day for almost all of my adult life. From the moment I realized that my own mother was - shall we say - not the best mom in the world, and vowed never to be like her, Mother's Day has been fraught with feelings of anger, shame, jealousy of those who had "the best moms in the world", and confusion about how I should feel about the day - and the role. And her.

When my mom was diagnosed with dementia in 2016, and gradually forgot what she had "done to me" - the confusion grew, the existing emotions were an exercise in frustration, and there were more feelings: hatred for the disease that was making her more and more helpless, guilt that I couldn't forget my childhood like she did, and much, much more. All the while, the 2nd Sunday in May was a day I would always dread. I would even make one post early that day and then leave Facebook alone as I didn't want to read all the gushing messages and posts from people whose mothers seemed so much more saintly to them.  I railed against the idea that the "saint" was what others saw, while I got to see what she was like behind closed doors.  I could see both sides in her, but nobody would believe my version of the woman. Nobody, that is, except my older brother, who saw things up close and personal.

I knew all along that she would never change - that she never once thought she did anything wrong. I knew that she would always treat me like I was six years old. What I didn't realize until a few years later was that her own emotional development - through her own trauma of being the victim of child abuse - was stunted. I was raised by a grown woman with the emotional maturity of an 8-year-old. That stark realization, which I came to in therapy in 2019, freed me to see her for the woman she had become in her dementia. All the masks were stripped away and she showed who she really was to everyone, not just to me. She could be so kind, and in the next breath, critical and cruel. But it was still hard to watch. It was harder to listen to people excuse her behaviour by saying, "It's the dementia." 

When my older brother died in February 2020, I lost someone very important and dear to me, whom I still miss terribly. I also lost my only witness, which was just as hard for me. However, I came to understand that it didn't matter what used to be, just what "is". She could no longer recognize me when I went to tell her about Bro. To her, her daughter Judy was six years old, not some sixty-ish woman. And her short-term memory only lasted for about 5 minutes on a good day. By the end of the visit, she asked me how Bro was doing. I couldn't bear to see her grieve all over again, so I said, "Better than ever, Mom. Better than ever." 

And then came the day that she passed away. April 2, 2023, around 8:40 pm, the phone rang, and a nurse told me that my mother had died.

I didn't know how to feel. At first, I thought it was some cruel April Fool's Day joke so I checked my watch. No, it wasn't that. In a fog, I thanked the woman for telling me, and then started going through the motions of the only surviving natural child of someone who has died. Funeral arrangements, phone calls to inform extended family, travel plans, and write-ups occupied my mind - as did the inevitability of preparing to greet the people who would come to the visiting hours and to the funeral. I don't know how I would have gotten through all the preparation without the help of the funeral director, Erin. She was a God-send.

The overwhelming sensation I felt (and still feel) was relief. She was out of her emotional pain, with a perfect memory, re-united with my dad who had died in 1993, and with both of my brothers (the oldest died in 2010 and Bro in 2020). She also knew everything that I was feeling and had felt. For the first time, she understood me. I can't describe how that felt. It gave me ... rest, I guess. Peace.

The funeral was amazing - but surreal. I decided to let people believe about her what they wished, without making her special memorial about me. I wrote up a biography speech for the pastor to read at the funeral... a list of her accomplishments, things that folks there would remember her doing. I learned that so many people loved her - and that I loved her, in spite of everything.

Mom and Dad on my wedding day in 1981.
He was nibbling her ear.

Mother's Day last year felt like a blur. I was still processing some pretty heavy emotions and realizing some new and interesting things about myself. Now, I imagine Mom being the person she always could have been, totally healed from her own childhood trauma, and able to love and be loved without shame, without false modesty, and without fear. It comforts me. It lets me love the good about who she was, to honour the sacrifices she made, to remember the good times.

As Mother's Day approached this year, I also realized something else. I wasn't dreading it. Strange how that is. Instead, I had come to understand that all these years, I was robbing others of the joy of wishing me a happy Mother's Day and keeping them from celebrating ME as a mom. Wow. 

I've been freed. I can't explain much more than that.

This place

As I look around my apartment this morning, and reflect on the last three months here, so many thoughts and feelings arise. In two days, I will be moving back home from here. I will be resuming an improved version of my former life with my family. It will be improved in the sense that I will be spending more time with them, due to the fact that I will continue to work remotely from home for my employer. It will be improved as well, because I decided to continue my march toward retirement in spite of the fact that my practicum didn't work out; this will leave me more time to volunteer and thus enrich and expand my life and my comfort zone.

But looking around me, I find my thoughts drawn to the lessons and the skills I have learned while living alone, and to the ups and downs of having nobody to answer to in this place except myself. A common thread through it all is the truism that you never know what you can do until you are forced to do it. I've been forced to sleep alone, eat alone, work alone, amuse myself alone, wash dishes alone, take out the trash by myself, do chores without anyone's help, and many more things. 

And I have learned that I can do it. I have learned that I can survive living alone. However, I have also learned that it is a lot easier to do when I have support and connection with the people who love me. My phone has been my lifeline while living here; I talk with my husband three to four times a day on average, and I speak with my brother about once every day or so. My relationships with both of them have deepened in the last three months. 

I also find myself remembering the events of the last three months and how this place has been my "home base" - a place I could be myself - a haven from the stress of being in a practicum with a supervisor who was not a good match for me, and whose attitude and words reminded me too much of childhood traumas I have never fully addressed. This place has housed me, fed me, given me a place to sleep, to think, to cry, and to grow. 

My plants - and other friends...

And soon, I must say goodbye to it. And I find - to my surprise - that I have mixed feelings about that! 

I will miss the freedom to keep my own schedule and be able to listen to music or TV programs (read: Netflix) without using earphones. I will miss the ability to sit in my chair without removing a cat or worrying about cat hair sticking into my clothing (or anyone else's who might visit me). 

But I know that I will be able to bring back certain things with me - like the rugs I bought for the apartment. The big one will adorn my home office and the smaller one will be placed beside my side of our bed. My plants will be in my home office and some will go to their original perches in the front hallway. Others will go back to my work office (the ones that are poisonous to cats). The paintings my family bought for me will also go in my home office - and from the rest of the furniture, I hope to be able to make a livable space in the other room in the basement.

And I am looking forward to being able to be close to my friends and living (instead of just visiting) with my family again. Yes, even the cats - I have missed those furry folks! My own bed beckons me, as does my kitchen (which is over twice the size of this little one in my apartment...) and the other creature comforts: cable TV, access to exercise equipment for when the weather is bad, and oh yes, did I mention my family? And friends? 

But this place - as eager as I am to move and get back to all I hold dear - still holds some sentiment. 

It will be hard to say goodbye.

A Gilded Cage

She sits in her room.  Or she wanders the halls, sometimes with her walker, sometimes without (because she forgets.) Her mind flits about like a butterfly, from memory to memory, all of it disjointed and from different time periods. But to her, it is all the same. 

There is only one consistent thought.  She wants to go home.  That's where she belongs.  She must get out of this place.  And she asks every visitor who comes to see her if they would just help her with her things so she can leave and go back home where she is needed. Her desire is so great to go home that at times, she has gone to the door and pounded and kicked at it. All that gets her is more medication so that she can be more "manageable."

Her visitors, when she begs them to take her home, change the subject. They let her patter on about the same stories, let her ask the same questions over and over again, and when they must go, they make some excuse to get out of the room ... knowing she will forget they were even there in a minute or so. And then she will complain because "nobody ever comes" to see her. 

Mom (in the foreground) in her element - August 2015.
My sister is in the background.

I spoke with her this morning on the phone. She was so pleased to hear from me, and talked about needing to have someone drive her home so she could fix supper because she was working and couldn't come home for lunch. So today, she was stuck in 1992... 25 years ago ... and in that brief period of time, she wasn't even in the hospital. I just let her talk.  It wouldn't have done any good to tell her that this was 2017. She would have forgotten anyway. Time has no meaning for her anymore - except for the interminable wait to go home and how the seconds seem like hours when nobody is in to see her. 

Her nurse tells me that she is doing fine, that she occasionally gets agitated, feeling like she is trapped there (which she is, really), and they just give her an olazepin and she calms down. So I look up that medication on the Internet, and I think about how offensive it would be to her if she realized she was on an anti-psychotic drug, something to keep her from freaking out.  But she isn't in control of that anymore. And now, as never before, I realize that neither am I.  The hospital staff are in control; the government is in control. 

I know that she is safe and protected where she is, that she is fed nutritious food and sleeps well at night with no danger of her wandering. I get that. And it's probably a blessing that she doesn't realize how powerless and dependent she is. It is just wrenching to watch, even from this distance, to hear her lose more and more of her sense of time and self.  One minute is pretty much the same as the next.  She is incredibly lonely, a nearly empty shell looking for a place to lie down, the homing instinct being the only thing she has left.  Much of what made her what she was, is going or gone. The spark, the chutzpah, those are disappearing into the fog of dementia.

And it's Mother's Day. 

Wow.

All in - chronicles of an in-patient

It's been quite the unusual start to the year. My brother and I had surgery within 5 days of one another - his was for a resection of bowel due to stage 1 colon cancer, and mine was for a total hysterectomy due to pre-cancerous cells in the uterus.

In both cases, excellent surgeons (his in his province and mine in mine) removed the faulty plumbing (so to speak) and cauterized the blood vessels that were nourishing their respective areas. All is well. 

But the experience of going "all in", of committing to the process, of facing the unknown? That's terrifying. Literally. 

I would daresay that nobody knows better than someone with multiple health issues (not the least of which is obesity) the terror involved in facing the prospect of undergoing a general anesthetic (not to mention the whole notion of someone cutting into your body). They explain the risks to you in no uncertain terms; you have to sign a waiver releasing them of any legal repercussions should you die on the table. That's serious stuff, and not "just a formality." Needless to say, that should be enough to give anyone cause for concern.

Add to that my own private terror of The Needle (more specifically, the Intravenous) - the knowledge that not only is someone going to take a hunking two-inch-long steel needle and poke a hole into your vein, but then take a tube (which by definition is BIGGER in diameter than the needle) and slide it into the vein along that same needle - and the pain involved in that process (especially if they MISS), and you have a recipe for the screaming meemies!  As a matter of fact, THAT was the thing that scared me more than dying on the table. Let that sink in for a minute.

And even though they numbed the area with some cream in advance, the pain of their first attempt left me writhing and calling out for my higher power on the bed as they held my arm down and tried to force the tube into a vein in my hand that was no longer yielding blood. So they had to start all over again somewhere else - first the cream and then a repeat of that experience on my opposite forearm ... and with another nurse. This time, she realized that it was a dud with the tube only half-way in - and removed it. "We'll wait for the anesthetist," she stated. "He's really good." 

And he was. He told me what he was going to do and when, he took his time finding a vein, and true to his word, he used a pediatric (child-sized) needle - and from the time of the initial pin-prick until the tube was in, was only about three seconds and the most painless I had ever felt. My jaw just dropped - it was so the opposite of what I had endured the previous two attempts!! He told me that he was going to wait until I was under the anesthetic before putting in an adult-sized intravenous tube - for which I thanked him. 

And then I realized that this was it. That hurdle was behind me, and I was now caught up in a process in which the only way out was forward. There was no turning back now. I was all in. 

The too-much-information details

They had put compression stockings on me to keep me from getting blood clots - which only confirmed to me the fact that I would be "out" for longer than I had ever been before (an estimated 3 hours compared to the 1 hour in previous surgeries elsewhere) and that I would be on my back for almost 24 hours after that. And the stockings were still there, although rolled down a bit, when I awoke in recovery over four hours later.

My first thought - I'm alive! My second thought - I'm awake! My third thought - my mouth is so dry! I spoke that thought out loud, and a nurse moistened the inside of my lips with what looked like a tiny water-filled sponge on the end of a stick. After a while they gave me an ice-chip. It was glorious!

I was surprised how little pain there was - compared to my expectations that is - and I remember feeling some cramping in my belly area, about a five out of ten.  They suggested something for the pain - and I said yes - they mumbled something about Fentanyl as they pushed it into the IV tube (wow that stuff is strong.)  Apparently the 'good drugs' loosened my tongue (and according to the nurse who was looking after me, I was a "delight." Whatever that means.) And I noticed how much it felt like I had to urinate. "That's the catheter," someone said. "You're doing okay, just let it happen, it always feels like that." Oh. Oh good. Good to know.

This image, entitled "I Am Here To Help You"
is by stockimages and can be found at
www.freedigitalphotos.net

After I was settled in my room, which was in the maternity ward (oh how ironic since they'd just taken my uterus OUT) I remember them cleaning me up, using plenty of water to do so (one of the best, most decadently cared-for experiences I have had in a long time!), and then changing my sheets with me in the bed and the IV still hooked up to my right hand. That they could do this completely amazed me. (Obviously the Fentanyl was still having an effect on me...)

I remember my family suddenly being there and other sensations - the most disturbing of which was my panic reaction when the pregnant lady in the bed beside me got an ultrasound and I could hear the baby's heartbeat. I wasn't prepared for that fight-or-flight reaction. With all my heart I wanted to be anywhere but in that room. The emotions were raw, wrenching, horrific. With every beat of that baby's heart, I could remember the last time I had an ultrasound and heard that noise - all the while knowing in my current situation ... that my youngest daughter would never return to me. I was instantly transported into grief, as fresh as the day I learned she had died in that car crash over 3 years ago, and all I wanted to do was escape that noise: blooka-blooka-blooka... on and on.  I said something about earplugs - and my oldest daughter (who was visiting along with her dad) reached into her pocket and handed me a set of earplugs that so happened to be there. (I looked at her like she was magic, and inserted the earplugs. They stayed in my ears except for nurses' visits, until I gave up trying to sleep around 6:30 am.) My roommate was discharged the next day.

I did sleep a tiny bit that night, but only for five to fifteen minutes at a time - not enough for my body to get any rest. I was afraid that I would drop the call button (not realizing - because of the drugs - that I could tell them about that so they could tie its cord to the bed rail). In my mind, I was responsible for keeping track of that button because it was my lifeline to getting help, so I spent the whole night holding onto it. Not being a back-sleeper, I found that position very uncomfortable (even more so with that huge iron bar under the mattress at the level of my upper backside) but I could do nothing to change it. Makng any movement at all on my own was exhausting; I felt like I'd been run over by a truck or something. Everything was sore ... and I was so tired!  I remember once complaining about the bar underneath of me, and two of the staff moved me (sheet and all) up toward the head of the bed. Then they adjusted the bed to take the pressure off my lower back.It helped a little, but I am short, and gravity is a thing, so soon I was back down on the bar again. I would need to endure this for another 12 hours.  (Only today - four and a half days later - is the bone bruise from this iron-bar experience beginning to show through my skin.)

The next morning, around 7:30 am, they gave me a heparin shot - I stopped the nurse and asked what it was for before the needle went in - and probably I seemed a little paranoid about it (given my experience with sharp objects, it seemed perfectly valid to me!) Heparin is a medication that prevents blood clots - often referred to as a 'blood thinner' but it just stops the blood from clotting and doesn't actually thin the blood. The shot stung, but not as much as I expected. Then the nurse got this empty syringe and headed toward me. I asked her what that thing was for, and she said it was to take my "Foley" out (I had to look it up just now to understand what the syringe was for - thanks, Wikipedia!) I asked her what a Foley was and she said it was my catheter. She hooked the empty syringe up to the tube beside my bed (where the urine-bag was), withdrew some clear liquid, and then pulled out the catheter. Just like that. Interesting sensation, that was. It was no wonder I always felt like I had a full bladder. (Shudder!) Within three hours - since I was still on the intravenous fluids - I had to go to the bathroom!

The good, the bad, and the ugly

The good. I was expecting a fluid breakfast on the morning following my surgery, but they brought me toast, a boiled egg, some sort of shiny glutenous mass that looked something like watered-down oatmeal (it was.) They also had lots of fluids: milk, water, and hot water with a teabag and some sweetener, as well as some diced peaches. I could barely see over the tray because I was so far down in the bed that only my shoulders and head would raise when the head of the bed was raised.  I got someone to help me with that, and was finally able to see my food.  The peaches tasted good and so did the egg! I was grateful for the food and made sure to only eat as much as I would have eaten at home - which was about half of the toast, almost all the egg (which by then was tepid), all the peaches, and a few bites of the oatmeal (ugh! even with the teensy bit of brown sugar they gave me...) I used half the milk to make the orange pekoe tea easier on the stomach. There was no coffee. I asked for ice chips and ice water. 

I drank a LOT of water, and even more so after the catheter came out.

Medication time rolled around: the nurse gave me my diabetes pills, a large blue pill they called apo-naproxen that was supposed to help with the cramping, and there was also a stool softener. And at about 10:30, I saw the on-call surgeon, who apparently had assisted with my operation. He explained to me what they'd done, how I was going to be feeling, and when I might get discharged. He said it might be later that day if I was feeling up to it, and that if it was, the nurses could contact him for the paperwork.  (Given the discomfort I was in because of that iron bar under me, I grabbed onto that possibility like a drowning man grabs a buoy.) He drew me some diagrams and talked about the unexpected hernia repair they did - they had not known I had an umbilical hernia and that affected the length of the surgery since they had to check to see if they could still use my belly-button as an entrance port for the tube that contained the micro-camera. They could. Then after they were done doing what I was booked for surgery to do, they had to repair the hernia. The visit was very informative and I got a lot out of what he said. The diagrams helped. The biggest grin came after he said that I would never EVER have to have another pap test AGAIN! 

Soon afterward, the nurse came and blocked off the IV tube and put a "saline lock" on what was still attached and inserted into my right hand. If I would promise to drink water, she said, they could take out the IV tube in a few hours. (Another amazing motivator - since I'm right-handed!)

Every new step I took: getting out of bed, going to the bathroom, getting washed up [mostly] by myself, getting dressed, putting on my socks and shoes, going for a walk, sitting down, standing up, lying down, turning over in bed - all of it took every ounce of strength I had in whatever moment I was doing it.  I was (and HAD to be) totally committed to the task at hand, and when I would finish one small thing and feel "all in," I'd rest a while and then start another. 

There were a few bright spots. I had an amazing nurse and personal care worker.  Plus I surprised my husband and daughter by being dressed and taking a short walk in the hallway (more like an amble, really, quite slow!) when they came in to see me that day, the day after the surgery. Lunch came and they stayed while I ate beef barley soup, half a rubbery breast of chicken, diced carrots and mashed potatoes with margarine. No salt. And instead of the tea, I just used the hot water and milk to make a warm milk drink I used to drink when I was a little girl. Again, I was grateful for the food, and for the company. 

Shortly after that, they removed the nasal tubes they'd been giving me oxygen through. Having that thing off me was wonderful!

I discovered a little seating area in the unit - rocking chairs and a coffee table, by a south-east facing window.  I spent some time there, and even got a chance to visit with a friend for a few minutes - but had to do so outside the unit because at my invitation, she came during the rest period, which I thought started at 2 (it started at 1:30. She arrived at 1:45 and stayed until 2). 

The bad. By that time (about 2 pm), I was so exhausted from having been up (either walking or sitting) ever since 10:45 that morning, that I wanted to lie down. The level of bone-weary tiredness I felt gave new meaning to the expression, "all in." I wearily asked my friend if it would be okay if I went back to my room - and she walked me back to the unit and left me at the door. 

Every step - even though slow - was an effort. My belly felt incredibly tired. Sometimes it cramped with air - apparently when they do surgery by laparascopy, they inflate the abdomen with air. Some of the air gets trapped in there and somehow manages to work its way into the intestine, where it travels - not so quietly and definitely not painlessly - into the colon and out of the body. This is far from comfortable! And it had been happening ever since I woke up from surgery. After a while it just wears you down.

As I was saying, I wanted to lie down and rest, so I slowly walked back to my room, which was at the opposite end of the unit from where my friend dropped me off.  However, a visitor to my brand new pregnant room-mate was wearing some sort of artificial vanilla scented product (either conditioner or deodorant or hand cream or something) and she was sitting right in front of the bathroom door inside my room. The chemical was so overpowering to me that I could not even go into my room. 

I was at the breaking point. It ... wasn't pretty.

The ugly. With the discomfort, plus the frustrations of the previous day, the insomnia and the fatigue on top of it, this was when my patience ran out ... and I began to be what the nurses would have called "difficult" - but only when I was out of earshot.  I told them about the scent problem. "I don't smell anything," a staff member told me. I sighed. "It's not the smell. It's the chemical!!! I can't go in there. I'll have a reaction."  

I wandered the halls for an hour while my roommate and her visitor blithely visited with each other, and even after the visitor left. I even used the washroom in another semi-private (unoccupied) room - which for some reason upset them more than my complaining did! - and I got frustrated and sighed heavily.  I said I was tired of explaining my sensitivities to every single person (even though I had not explained it to the people to whom I was talking) because nobody understood what this was like for me. I felt like I'd explained it to so many people since being admitted the previous day, that something MUST be on my chart. It was on my allergies bracelet, I reasoned to myself. Were these people stupid or did they just not care that I'd been up for hours wandering around? When I rolled my eyes one more time and said I was tired of explaining my sensitivities to everyone, one of the nurses - annoyed - told me that I hadn't explained it to her.  I said that was true, but I felt like I had to explain it to every single person every single time, and I was tired of it. So ... she said that she wasn't going to ask me to explain it to her. (Yeah I guess I had that one coming, in hindsight.) 

Anyway, I mentioned needing a place to lie down, and possibly using the cot in the family room across the hall from my room because I still couldn't get near my room even though the visitor had left over ten minutes previous to that.  (The chemicals used in making fragrances, as I've often mentioned on this blog, linger long after the person has left.) Nobody said anything. I made my way to the end of the hall and turned into the family room. I headed toward the cot, wearily. I started to get on the cot. At that point, their frustration with me showed through, and the PCW told me that the family room was for use by new mothers and their families (nobody was using it at that time) and that I was not allowed to lie down on the cot because the cleaning staff would not be in until the next day. "You can lay down in your room," she said glibly. "No I can't. I can't get near that room."  "I can't smell anything in there, and I've got a good smeller," she told me. 

Sighhh. The "care" in "health care" seemed sadly lacking at that moment. It sucks not being believed, and I have had that experience way too many times with my chemical sensitivities.

I went to the seating area (at the opposite end of the unit) and sat for a while, close to tears, staring at the floor. The sun had gone around the side of the building, so it wasn't warm there anymore - not nearly as comforting as I thought it might be.  After about 20 minutes, I decided to chance another attempt, and walked slowly back toward my room, passing by the nurses' station on the way. My nurse was standing there and asked if she could get me to sit so she could take my vital signs since she had been getting ready to go to my room anyway. I sat and she took my blood pressure, temperature, and oxygen levels. I told her that I had been up ever since they got me up, and that I would really like to go home. She said she would try to get in touch with the on-call surgeon but that he'd been delivering babies all day, it might be a while before he was able to get away. She said she was going to take out my IV tubing once I got settled there. The IV tubing was only supposed to be in there for 24 hours. It had been about 27 hours at the time.  I got up and made my way toward the room. "I wonder if they will reach the doctor tonight or if I'll have to spend another night on that awful bed," I said to myself.

As I neared my room, I could hear the voice of my second pregnant roommate in a row. She was crying out, sobbing in pain, amid other female voices. At least two staff members were with her, trying to make her comfortable. The baby was pressing on her sciatic nerve, and she was in excruciating pain. I silently went into the room and tentatively tested the air. The chemical had dissipated. It was okay for me to stay. I grabbed my pillow, tucked it under my waterproof butt-pad, and then took my rumpled-up blankets and made a pillow with them for my head, and slowly lowered myself onto my side in the bed with one hip on the pillow area, laying on my side for the first time in over 36 hours.  

Illustration "Sketch Of Woman Crying"
by luigi diamanti at
www.freedigitalphotos.net

My roommate was crying aloud with her pain as they tried to find a way for her to get out of her bed and go to the bathroom without her pain intensifying exponentially. She was crying loudly and begging them to stop, to make the pain go away; ten feet away, beside her and unknown to her, I was crying silently in my own kind of pain. The frustration and tension of the day welled up in me and I wept - as uncomfortable as it was for my belly and as selfish as I felt (and ashamed as I felt for my selfishness) - on my bed. All I wanted was to go back home. So, I quietly sobbed into my makeshift pillow. My sobbing was muffled by my roommate's.

Nobody saw; nobody knew. Nobody. There was just me on one side of the curtain and two or three staff members with my roommate on the other side of the curtain. 

After my roommate got settled - about 20 minutes later - with some Dilaudid, I slowly got up and went out to the hallway. People were still busy. Nobody had heard from the doctor yet. I went back to my room and sat on the chair beside my bed. The food services lady came with my supper - that same beef barley soup, a couple of crackers, and the most disgusting macaroni and cheese. Still, it was food and I was grateful. I tried a bite of the cookie that came with it, but it had coconut in it, so I left it alone.

Around 5:30 or so, I found my nurse and asked if I could get a couple of extra pillows and a sheet or two for my bed, so I could lie down on my side and maybe catch a nap. At the time, however, all the staff were busy with a new influx of babies and moms, so she pointed me to the cart and showed me where everything was: pillows, pillowcases, and sheets.  So I took what I needed to my room - and I made my bed.  Me.  Not supposed to lift anything above 5 pounds, intravenous "saline lock" still attached to (and into a vein in) my right hand, and here I was, making my bed. Desperation does funny things I guess. Anyway, I got it done and I laid down again, on my side, waiting for my nurse to come in and keep her promise to take the intravenous tubing out of my hand.

I vaguely remember her coming to my bedside at one point, and asking me how long my doctor told me that I would be off work. I said, "Three to six weeks," and she said, "Awesome, I'll tell the on-call doctor..." and she was gone. My IV tubing was still in my hand. I rested my right hand on the bed in front of me. 

And so, this part of the saga ends... and another begins

I must have drifted off, because it was 6:50 pm when I opened my eyes and my nurse was sitting in front of me. "The doctor got back to me and I have your papers here, including your doctor's note for work."  I slowly sat up and she went over the post-surgical care information with me, after I texted my family to let them know I could come home.  They promised to be there around 7:30. The nurse finally removed my IV tubing. It felt so good to be free of that thing!  I was so grateful to be able to get out of there and to not need to spend another night on that iron bar!   

As I gathered together my belongings, I saw the young lady who had been crying in pain earlier. She seemed more comfortable but very groggy - her partner had been in and told them that they gave her twice as much Dilaudid as she was used to. The medication made her feel overheated, so she had a cold cloth on her forehead. We chatted for a little while, swapped stories. She wished me the best and I did the same for her.  

Soon afterward, my family was in the room and we were getting ready to leave. We stopped by the nurses' station on the way out, and they noted the time of my departure. My daughter insisted on wheeling me out in a wheelchair; I did not argue! My husband went ahead and brought the car up to the entrance.  We got me in the vehicle and my husband drove to our pharmacy, where the pharmacists know the whole family. My daughter went in to fill the prescriptions the doctor left for me. Then we drove home ... an exercise in enduring pain from jostling over the potholes and failed repair attempts that riddle our little city's roadways every few feet. When I finally got out of the car and slowly made my way through the cold, bracing air up the deck stairs and into our house, I was so relieved that my whole body relaxed so much that even my family noticed it.

I was finally where I belonged: home.