My Part Time Job (Post #27)
No, I haven't just lost my mind, that happened a long time ago. 😊 In the past, I've heard people with health challenges complain that being ill is like having a part-time job. Ditto for having cancer. In the past week, I've had 3 appointments, and I have 2 more tomorrow.
Shortly after my ICU stay debacle, I received a call from Dr. Ritchie, a hematologist. My surgeon, Dr. Olson, suggested that speaking with the head of the Bleeding Disorder Clinic at the Kaye Edmonton Clinic might be a good idea and arranged the appointment, which was done over the phone. I had undergone a plethora of testing prior to my surgery, but apparently not at the right lab. (I never knew that a snort of disdain could be so eloquent. I've been practicing, but I have a way to go before I reach Dr. Ritchie's level of expertise in dissing things with a bodily noise.😊 ) So I marched off to the basement of the Kaye Clinic where they proceeded to drain me. Well, so it felt.
13 vials later! The phlebotomist encouraged me to take a photo
as even she found the amount of blood taken to be excessive. 😄
During the course of my conversation with Dr. Ritchie, he mentioned several key items:
- I could have Von Willebrand's, though testing is difficult since stress can affect the results, something of which he seemed to think I had plenty!
- I could have a different bleeding disorder, not yet diagnosed.
- I have already established myself as a "bleeder," and would be treated as such from this point on.
- I would have a follow-up appointment with Dr. Sun, who has taken over from him, as he is trying to retire. 👴
- He is the physician responsible for creating the Factor First card Program, which has been implemented Canada-wide. These are cards that are carried by people with bleeding disorders to ensure that they are seen in a timely manner in the ER, when receiving surgery, or at the scene of an accident. Impressive!
- Oh, and his wife required 3 surgeries before they were able to remove all of her breast cancer.
Last week was my follow-up appointment with Dr. Sun; it was another phone appointment - apparently, no one wants to see my bruises! After reviewing my test results, all of which were normal or close enough, she assured me that I was one of the lucky 1 in 4 "bleeders" who are diagnosed as having a "Bleeding Disorder NYD." (Not Yet Determined) Many of us special cases never actually get a titled diagnosis, because they don't know why we bleed! She did mention that there was a possibility that I might have Ehlers Danlos Syndrome. (I kept switching the names around to Danlos Ehlers Syndrome, so now I just tell people that I might have ED. 😜) Unfortunately, there is no definitive test for my type of ED, just a list of symptoms, so who knows! This was certainly the first time I've had a physician tell me to "Google the syndrome and see if the list of symptoms matches." Well! (I have yet to do that, so obviously, she wasn't too concerned that I'd come up with some bizarre diagnosis, courtesy of Dr. Google.) I have another appointment for yet more blood tests, but they're unlikely to produce a definitive diagnosis. (So why test more? No idea...I didn't think to ask.🤷🏻♀️ ) Perhaps the most exciting part of the appointment was when I was told that I would be receiving a Factor First card in the mail. Unfortunately, my daughter, Marigan, who works in ER, has informed me that:
- I'm not allowed to sell it to the highest bidder on eBay. 😔
- It is not like an "Advance to Go" Monopoly card, putting me at the front of the line, and there is certainly no bonus of $200!
So what does having a bleeding disorder look like? No worries, all these photos are of body parts that would be visible to the public on a beautiful summer day, with me attired in a t-shirt and shorts, so there's no need to blush! Not that I ever wear shorts outside the house, for obvious reasons...🫴 (And no, I did not use any filters, nor alter the photos in any way, hence the very unprofessional nature of them! 😁)
The photos in these two collages 🔼🔽
were taken on August 23, 2022.
These photos🔼 were taken on September 25, 2022.
These were taken yesterday, September 27, 2022.
No, my husband doesn't beat me, and yes, I'm a klutz, but this is a bit extreme even for my level of klutziness. (I like to tell people that my middle name is Joy, not Grace, but my youngest sister's middle name is Grace, and well...if you know her...😁 Let's just say that we not only look and sound alike!) So now you know why I'm a fan of long skirts and opaque tights! Do the bruises hurt? Yes, they do, though only if I bump them, which, unfortunately, happens more often than I prefer. But aren't they pretty colors?? 🌈🎨
I had a rather lengthy appointment last Thursday - it was over 1.5 hours! One of the theories raised for why I crumped post-surgery, was that I had an allergic reaction to something in the OR. Upon arriving at Dr. Sideri's Allergy Clinic I was interviewed by a nurse, who wondered whether I wanted the full battery of allergy testing, or whether I'd prefer to limit it to likely culprits. As a chemo patient, I didn't think that subjecting my body to multiple allergic reactions would be a bright idea, so I elected to limit the testing. Marigan and I (yes, she's kinda like a service animal and accompanies me everywhere...😄) were then taken to Dr. Sideri's office where she proceeded to take a very complete history. She then tested me for three things, plus the usual control and histamine reactors. One was lidocaine, one was bupivacaine (both anesthetics) and the last was a cleaning agent often used in operating rooms. (It was the prettiest shade of pink.) Fortunately, or unfortunately, depending on your perspective, (Dr. Olson would love for Dr. Sideri to have discovered an allergy!) I only reacted as a healthy non-allergy person would, and got an itchy spot from the histamine. Meanwhile, Dr. Sideri was combing my files on both Netcare and ConnectCare, hoping to find any other possible culprits. It never fails to amuse me when I speak with healthcare providers who, upon reading my recent medical history, look at me with wide eyes and inevitably say something along the lines of "My goodness! You were really, really sick!" This brings me to today's appointment...
I began virtual therapy today. It was time. Marigan and I were recently enjoying a Hallmark production when they showed the requisite hospital scene. This time, the hospital room just happened to be in the ICU. As my brain processed and recognized the various monitors and I saw the nasal cannula on the patient's face, I felt a rising sense of panic as the thought, "No! I'm never going back to being an inpatient! They can't make me!" flooded my mind. I had a serious flight, fight or freeze response. To a Hallmark production. That's when I knew it was time to speak to a professional counselor. Does that mean I've stopped trusting God? After all, one of His names is Counselor!
"For to us a child is born,
to us a son is given,
and the government will be on his shoulders.
And he will be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace."
Isaiah 9:6
No, absolutely not. I believe the reverse to be true. Every day on this journey has not only underscored my need for God, but also His ability to provide exactly what I need. The counselor I was matched with (through the Physicians and Family Support Family) specializes in clients with a history of medical trauma. Not only that but during our session this afternoon, I was struck by how similar her speech patterns were to a friend I respect highly. We had an immediate connection and I didn't even try the whole "It's fine. I'm fine. Everything is fine." thing that I like to pull; something tells me she'd call me on it.
Meanwhile, in true Pollyanna style, I'll keep looking for the positives, such as marveling at the number of wonderful people I've met on this unwanted journey. Dr. Sun and Dr. Sideri are both such compassionate, brilliant physicians, I felt honored to be their patient. Honestly, I haven't had a single bad experience, despite the fact that our healthcare system is in a state of crisis. I'm always amazed at the ability of healthcare workers to continue to give, even when they are burned out. And no, I'm not just saying that because my family includes a physician, a medical student, and a nurse. It's a common refrain among all healthcare providers.
So tomorrow is my usual lab test followed by an appointment with Dr. Zhu, my oncologist. I feel amazing, (other than lips that are falling off and constantly tearing eyes) so I'm hoping these feelings translate to a good neutrophil count! We're hoping that we get the all-clear to continue chemo with my third infusion on Monday. And so I continue to wait upon the Lord, knowing He's got this. 😊
"But those who wait on the LORD Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint."
Isaiah 40:31
Let not your heart be troubled
Let not your faith be swayed
Even when the mountains start to shake
Let not your hope grow weary
Let not your peace give way
Even when the levee starts to break
Let not your heart be troubled
Let not your vision fade
Remember all the promises He's made
Come all ye heavy laden
Come here and find your rest
Come and lay your head upon His chest
And He will carry all the weight
Trade your worry for His grace
His yoke is easy, His burden light
Lift your head up, lift your eyes
Wait, wait
Wait upon the Lord to give you strength
Wait, wait
Wait upon the Lord to give you strength
Let not your heart be troubled
Let not your flame go dim
Everything you need you find in Him
Yes, everything you need you have in Him
Jillian Edwards "Let Not Your Heart Be Troubled"
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