September 19, 2023
Cancer and the Tattoos
September 06, 2023
Resilience... more than just a word
August 16, 2023
The Saga Continues
August 03, 2023
Let the Healing Begin
August 01, 2023
The Countdown is On
It took a fair amount of persistence on my part to get here. Thankfully I kept on returning to the emergency room until I got some tests done and at least reached a diagnosis.
I'm so glad that my surgery is tomorrow. Each day the pain seems to be worse, and this thing inside me is definitely growing. It interrupts my sleep so that I probably get about 4 to 5 hours per night in total. When I do sleep, I dream horrible things like that the tumour is the size of a canteloupe instead of the golf-ball to lime size it is.
The current surgical plan is to remove a section of the abdominal muscle. Not this past weekend, but the weekend before, I had a CT scan. I know I already had one before, but that one was more to just determine that Yes, there is something there. Based on that scan and the following biopsy, a new, more complete CT scan was ordered. Several things happened while I waited for that appointment.
Since I had already had cancer back in 2021, that surgeon regularly monitors me. She had gone off on maternity leave and at my last appointment I saw her practice partner instead. That was in January or so. She indicated at that time she would see me in six months and we'd schedule a scan to make sure all was well. That appointment was coming up soon and while I was still dancing with the doctors at the ER trying to get someone to take me seriously and do something, I actually called that surgeon's office to see if we could move my appointment up a bit. I just knew they'd do something for me. They couldn't move it but I did decide to keep the appointment. Just before that appointment was due, and as a result of the biopsy, I ended up scheduled for the complete CT scan. This scan ended up being scheduled for 2 days after my upcoming appointment with my original surgeon. I finally ended up with a surgeon in London, Ontario who said I should keep the appointment for the CT scan here in my local hospital because to wait for them to have time to put me in would only delay the surgery.
In the meantime, my first surgeon returned from maternity leave a few days a week before coming back full time this month. She was reviewing files and happened to notice correspondence from the surgeon in London. I had listed her as one of my doctors on their forms because she was the only doctor with knowledge of my cancer history and I figured she'd want to know anyway. So she called me up and asked, "What the hell's been going on?" I told her the whole story, lamenting the fact that my former family doctor had closed her practice about 2 months after my last cancer surgery and that me and all her other patients ended up orphaned. An hour later, as I was driving home from work, my phone rang and it was her again. She told me that she had reached out to a colleague at the local medical clinic to ask if they knew any doctors taking patients and she explained my situation. I had to pull over to write some information down because she then told me the doctor said, "I'll take her." Hallelujah! I got a family doctor! Not only that, but when I went for an initial meeting and discussed how my previous doctor had orphaned my family, the doctor said they'd take my husband and son too. And just like that, after 18 months or so, we all got on with a new family doctor.
The day after I met my new doctor, I had my CT scan and they said they'd forward the result to my doctor in a few days. Thrilling words "my doctor".
The CT scan was not as pleasant? smooth? easy? as the last one. The technician was not good with the IV and it hurt throughout the experience. Still, it was one more thing to check off on the list. I called my doctor's office a few days later to ask that they make sure the results are also forwarded to my surgeon. A while later they called to confirm they had sent the results to London and then told me that the scan was clear. Except for the cancer we already know is there, they didn't find any other cancer. I'm still afraid to believe it, but it's very very hopeful news.
As it happens, though, I do have some really positive feelings about the upcoming surgery. Any pain will be healing pain and will diminish with time. As I have said before, the post-surgical pain can't be any worse than what I'm living with right now. I will do whatever it takes to get well again. It so happens that I also had a visit from my late bff in one of my dreams recently. She didn't speak. She just walked up to me and we had a long hug. I thought about it after I woke up and I believe she was offering comfort and reassurance. I think if things were going to go bad, she would have said something. It was good to see her. She doesn't visit me too often and I really needed this.
Today my coworkers threw a little party for me to wish me well. We had veggies, charcuterie, chips & dip, and even a cake. There was a lovely card with a Tim Horton's gift card inside, and even a couple of gifts - a dreamcatcher that says "children matter", and a hair scrunchie, both of which were made here on the reserve. One of our board members, who I absolutely love (she was on my committee when I was a project manager), also dropped by and had a gift of a kind of small tote bag that she had made. I'm really going to miss everyone while I'm off. It's so fantastic to have a job you love and coworkers who truly truly care.
I probably won't be able to add any more to my blog for a while, but I do promise to provide an update as soon as I can. Catch you all on the flipside.
July 25, 2023
Surgery Looms
As my surgery date rapidly approaches, I feel the weight of everything I have to do ahead of time. I need to go over work-related stuff with my boss; stuff like how my files are organize on the computer, how to set up a zoom meeting, how to this, how to that, basically how to function without me for a few months. Then there’s stuff at home like general cleaning, which is just not happening due to a lack of energy and intense pain; and clearing out the basement as our 19-year-old son will be moving down there so he has his own space. Aside from a sleeping alcove, he’ll have a small living room area where he can have his computer and all his other stuff. Of course he’ll still hang with us to watch tv and have meals, but it will be good for him to have his own space besides a small bedroom. Again, though, pain and energy levels have stalled this project as well.
As far as work goes, who knew there would be so many damn forms to fill out just to have surgery and take short-term disability leave? And as if there weren’t enough forms for that, there is a 22-page booklet of instructions for preparing for the surgery!
I’m managing the pain as best as possible with Tylenol and the very rare occasional boost from Advil (which is counter-indicated due to the blood pressure meds). The pain itself is hard to describe. Most of the time it’s a constant ache as if someone is pressing on my lower abdomen with the handle end of a knife. Other times it’s a sudden sharp pain. Sometimes it gets so intense that it feels like someone took coals from a good fire and just laid them inside me. And yet other times it radiates right through to my lower back. These are the times I’m thankful for seat warmers in my car, which I have used even though it’s 28 degrees outside! Some days I’m able to sit for hours either at work or on the sofa, and some days I can’t get comfortable sitting or laying down, or even standing up. Overall, it’s bad enough that I truly believe the pain I will experience post-surgery can only be an improvement!
Initially we had planned for
my husband to bring me to the hospital and then leave for home when they take
me for surgery. After thinking about it
for a few days, I told my husband I’d prefer to have him there with me for the
day until I’m out of surgery and in a room.
Our son is coming too. This
brings me comfort. I’m scared enough
without doing this and them not being there.
Knowing they are will really do a lot for my peace of mind. The part that does suck though, is having to
be awake by 3:00 am or so. Since we live
a handy 3-hour drive from the hospital, we will have to leave home between 4:30
and 5:00 am in order to get there for the 8:00 am check-in. Surgery is scheduled for 11:00 am and I’m
going to be starving by then since I can’t eat after midnight. Hopefully they’ll have food handy when I wake
up.
July 11, 2023
Where to next?
July 10, 2023
No Dodging the Bullet This Time
Not having a family doctor is really not good. In January of last year our doctor closed her practice. She wasn’t retiring or even moving, just not going to do patients any more. Our local clinic where she had worked, despite having a lot of doctors, did not distribute her patients. We were medical orphans. They declined to have a waiting list and indicated they would assign patients to new doctors based on priority need. So here I sit about 18 months later, having survived cancer once, with thyroid issues, diabetes, and high blood pressure, but apparently I’m not “high need” enough.
Since I don’t have a family doctor, I have to navigate the medical system myself, through the emergency room. Need prescription refills? Go to the ER and wait several hours to see a doctor who will write the refill order. Does the doctor do anything to check my thyroid or diabetes, or even blood pressure to ensure I’m getting the right treatment? Nope. Fortunately, I was able to get accepted as a patient by the diabetes nurse practitioner, but her practice is limited to diabetes. At least I was getting regular blood work done and being monitored for what she could monitor. For all else…yes, back to the ER.
In April I went to the ER because I’d been having abdominal pain that wasn’t going away. Because it was persistent, I realized it was more than possibly gas. Sitting or standing for any length of time became unbearable.
So off I went, for a 7½ hour wait. Unfortunately for me, there was a very social woman in the waiting room. Because the room was packed, I ended up sitting across from her. I swear I have a sign or a tattoo on my forehead that says, “talk to me and tell me your life story” because in short order she introduced herself and proceeded to tell me everything. I didn’t even want to know her name, and in fact had my book in my hand and my reading glasses on. It didn’t matter. In short order she showed me her wedding photos (from ten years before), and told me all about the wedding and how her two brothers stood up for her. I learned her husband served in Afghanistan and that very soon they would be adopting an older girl. The woman had colostomy surgery the previous month and was there to have it checked. At this point she showed me the cover she sewed herself for the baggie she has to wear. I had to admire the Disney tattoo sleeve on her right arm and hear all about her plans for the other arm AND check out the pictures of what she wants there. I discovered she lived in northern Quebec as a kid and that she is now 45 to her husband’s 38. She had been married previously to an abusive asshole. The story goes on and on. I was so relieved when they called her name that I almost didn’t mind another few hours waiting for my turn. I didn’t want to be rude (I’m too polite at times), but I did try several times to put my head down and start reading. She just wouldn’t be ignored. I have no idea why me and not someone else in the room.
Finally, I was called in and I could have cried with frustration. The doctor basically blew me off. He asked where the pain was. I told him I could feel something inside and I put his hand on the lump I felt. He proceeded to press so hard I was almost off the table in pain. He felt all around, on both sides, and then told me it was probably gas. I assured him it wasn’t. When he asked why I was there, I told him “because this hospital has all the good diagnostic equipment” and asked him to use some of it. Instead, he told me he was referring me to a gastroenterologist. (And here I am three months later having not heard anything about a referral appointment yet!)
A week later I went back. This time the doctor was a lot more proactive. She immediately sent me for an ultrasound, and when the results were available, she ordered a CT scan. The scan was set for a few days later and I would have to go back to the ER two days afterward to get the results. More waiting, but at least it felt like something was being done. On my return to the ER a couple of days after the CT scan, I was told something was definitely there, about the size of slightly larger than a golf ball. This doctor referred me for a biopsy. And so, a few days later again I had the biopsy.
This biopsy was easily the most painful thing I’ve ever had done to me. It laid me flat for a week. I mean I was up and about within a day of having foot reconstruction, an emergency c-section, and even a hysterectomy. I was told the results would be available in 5 to 10 business days! A week later I tried to reach out to patient records to get my results, but their voicemail box was full and I could never reach a live person. The good news was I had an appointment with my diabetic nurse practitioner and when I brought her up to date on what had been going on, she called the doctor that performed the biopsy and got the results directly from him. The bottom fell away when she turned around and told me my cancer had returned.
If there was any good news in this, she also informed me that the biopsy doctor was going to refer me to a specialist in one of the major cities that is 3 hours drive away from us. This referral happened relatively quickly and about two weeks later I sat in the specialist’s exam room. A broader CT scan is scheduled to take place in about two weeks from today, but at this point she believes that I will need surgery to remove a section of my abdominal muscle, followed by a radiation series. The good news, at this point, is they don’t believe it’s in any of my organs. The CT scan can hopefully confirm this.
It is appalling that I had to push so hard to obtain vital services. A family doctor would have been able to get the process going so much faster. I remember when I broke my foot, my family doctor (who has long since retired) got me CT scanned fast. He got the results within an hour of the scan, and referred me to a specialist ASAP. I had surgery less than three weeks later.
Listen to your
body. You know it best. When someone in the medical field blows you off,
but you know something is wrong, keep at it until you find someone to listen
and take you seriously.
March 24, 2023
You've been numbered
A couple of months ago I was in another city meeting a friend for lunch. As I waited for her, I took this picture of some graffiti that says, “No Digital ID”.
I started wondering exactly what kind of digital ID the individual was protesting. I mean, we have all had digital IDs pretty much since the day our birth was registered. Don’t believe me? Check your birth certificate…it has a number. Check your school records…there’s a student number. Check your driver’s license…yet another number. Credit card or Debit card? Yep, more numbers. Health card, Social Insurance Number, CAA…all numbers. Have you got a mortgage or loan? Have you ever called the mortgage or loan company with a question? What’s the first thing they ask you? You bet…”What’s your client (or loan) number?”
To extend this thinking a little further, the cell phone we all love and carry everywhere…it’s got a number. Somebody wants to be able to reach you, what do they ask? They ask, “What’s your number?” Do you use a computer or laptop? You may not know this, but your IP address is a number. Our lives have been so digitalized over the past decades that it’s impossible to function without a so-called “digital ID”.
Then I started wondering if the protest was more over the government’s insistence on making vaccination status, especially with respect to covid vaccinations, available both on our health cards, but also as a separate downloadable certificate that we were all encouraged to carry on our phones to prove we have been vaccinated. Nothing has been so polarizing as the whole vaccination issue of the last few years. While I don’t want to insult a big chunk of the population, I find a close correlation between those decrying the vaccine and their level of – Education? Intelligence? I’m not really sure which is appropriate. For decades the government has insisted that children be vaccinated for chicken pox, measles, rubella, pertussis, and a bunch of other things in order to attend school. Nobody ever blinked over this. However, tell them they should all be vaccinated against covid and they lose their shit.
For those people, I have this to say: This is a standard vaccine composition. Which of these chemicals do you object to having in your body?
· Propyl acetate
· 2-methylpropyl acetate
· Propanol
· n-Butyl acetate
· 2-Methylpropanol
· 2-Methylbutyl acetate
· n-Butyl propanoate
· n-Butanol
· n-Pentyl acetate
· 2-Methylbut-3-enyl acetate
· 2-Methylbutanol
· 3-Methylbut-3-enyl acetate
· 3-Methylbut-3-enol
· 3-Methylbut-2enyl acetate
· n-Pentanol
· n-Hexyl acetate
· E-Hex-3-enyl acetate
· Z-Hex-3-enyl acetate
· Hex-4-enyl acetate
· E-Hex-2-enyl acetate
· n-Hexanol
· Z-Hex-3-enol
· E-Hex-2enol
· n-Hextyl-2-methylbutanoate
· n-Heptanol
· Camphor
· n-Octanol
· n-Oct-2-enol
· 1-Methoxy-4-(2-propenyl)-benzene
So many of the great unwashed will immediately say, “Nope. None of that shit for me.” What they don’t realize is that this is actually the chemical composition of an apple. It’s living testimony that most people (anti-vaxxers) aren’t qualified to even know what they’re scared of.