I promised that this would be a journal of my cancer journey, and my purpose is to be honest about the experience - at least, the experience from my point of view. If you are easily rendered queasy by mentions of bodily bits (especially those normally carried about on our insides) you might want to consider this post to fall under the "Too Much Information" category and skip along to a different post.
You have been Warned...
For the more stalwart, here's a moment from last week:
About 10 days ago my 'cancer navigator' called and breezily informed me that she had scheduled me for a biopsy in TWO HOURS. And, oh, yeah, by the way, she'd forgotten to mention the not-so-little ovarian tumor and questionable activity in my uterus that the PET scan had picked up. Just a small oversight, nothing to be concerned about. Let's get on with the more important issue: why the heck would I not want to meet with my oncologist on Christmas Eve?
So having squashed the noticeably-less-chirpy navigator's Christmas Eve plans for me, I rushed off for the endometrial biopsy, the blood draw to check on what my ovaries might or might not be doing, and what turned out to be a biopsy on the large polyp that had apparently grown up practically overnight on my cervix (Go, Me! I have a black thumb when it comes to growing plants, but I am aces at growing other stuff!)
A few days later my period starts, as expected, and as usual it starts at the most convenient time possible - late in the evening before Christmas Eve, while I am out on the town with the Fabulous Susan.
Luckily I was expecting something similar, so I had the necessary equipment in my bag to deal with said issue. After equipping myself accordingly in the public restroom, I turned to flush the toilet...
And noticed that there was a piece of ME floating cheerfully about in the bowl. I think it might have waved at me and winked, but I was in enough shock that I'm not entirely certain of that part.
This was not a teensy bit, either - it was a couple inches long, and knotted in the middle (as a knitter, I could appreciate that I can evidently knot things as easily on the inside as I do on the outside - I am so talented!)
You may be surprised to find that I was rather shocked and distressed by this discovery.**
For some odd reason the Fabulous Susan had never had this interesting experience, so unfortunately she could shed no light on the situation. I flushed the toilet and decided, Scarlett-like, to think about it tomorrow.
The next morning, bright and early, I called the OB/Gyn's office to see if they could reassure me that people regularly find bits of themselves falling out at random, and that it Probably Meant Nothing. Being Christmas Eve, I had to wait for the On Call physician to return my call, and of course that meant that I and my boys ended up being late for the traditional Christmas Eve Breakfast at my folks'. But we all must make sacrifices when we enter It's All About Me Land...
According to the On Call physician, it is possible that during an endometrial biopsy some tissue could be displaced and subsequently come out during the following menstrual cycle (let's not think too hard about the fact that this particular 'displaced' tissue was considerably larger than the chunk of me taken and cheerfully displayed for my edification during the biopsy itself). I should only be concerned if more tissue appears during my next period.
Well. They do say that with cancer it's important to set short-term goals and to have something to look forward to...
** you may also be surprised to find that the sun does not circle around the earth, but who am I to judge?
12/25/08
Bittersweet
Had a lovely time last night at the annual Christmas Eve get-together with my mom's side of the family. At least one relative made it pretty clear they were thinking this might be our last Christmas Eve all together, which was awkward and sad, but I guess I'm going to have to get used to that feeling. It's weird and a bit awful to think of it all going on without me.
Everything feels somewhat bittersweet right now. I feel it strongly sometimes at odd moments, usually when I am struck by the beauty of the world, a combination of sorrow and poignancy that is very strong. Sometimes I also feel resentment towards the Universe, of course - I don't think, really, that I've been handed a very fair hand throughout my life (how many of us have?), and this feels like more of the same, everything snatched away just as it's starting to look like I finally might come into my own. I try not to indulge that last bit too much, as self-pity is such an unattractive thing and I fear I'm more inclined towards it than I should be. But the feeling does intrude now and again, whether I will it or not.
Still, there is still something tender about that bittersweet feeling, and it does remind me of how precious everything is, how complex and delicately balanced and amazing. 'Awesome' is a word too often used nowadays, but it describes the feeling that sometimes overpowers me lately, in sudden moments of crystalline clarity. It's good to have those moments, between the stretches of chaos and dismay that seem so overwhelming at times.
Everything feels somewhat bittersweet right now. I feel it strongly sometimes at odd moments, usually when I am struck by the beauty of the world, a combination of sorrow and poignancy that is very strong. Sometimes I also feel resentment towards the Universe, of course - I don't think, really, that I've been handed a very fair hand throughout my life (how many of us have?), and this feels like more of the same, everything snatched away just as it's starting to look like I finally might come into my own. I try not to indulge that last bit too much, as self-pity is such an unattractive thing and I fear I'm more inclined towards it than I should be. But the feeling does intrude now and again, whether I will it or not.
Still, there is still something tender about that bittersweet feeling, and it does remind me of how precious everything is, how complex and delicately balanced and amazing. 'Awesome' is a word too often used nowadays, but it describes the feeling that sometimes overpowers me lately, in sudden moments of crystalline clarity. It's good to have those moments, between the stretches of chaos and dismay that seem so overwhelming at times.
12/23/08
Tumor Or The Tiger?
So here I am, all naked and everything...
Well, that's what it feels like, anyway. And the Universe (bless it) knows that I've been exposed often enough to all and sundry in the last couple weeks. I don't suppose it matters if I expose myself to people I know, along with all the strangers.
Here's the rundown:
I had cancer while pregnant with my first (and, it turned out, my only living) child, when I was 29. At that time I had no risk factors, being at that time a relatively normal weight and young and a non-smoker and a non-drinker - yet there it was, bladder cancer. We found it early, while it was slow-growing and small; my baby was pretty much laying right on top of my bladder and pressing one side of it against the other, and the tumor got riled up and persistently tried to eject the irritant. Several months of constant antibiotics and anti-contraction medications later, and once the baby was viable in case of premature labor, we had the cancer excised and all seemed well. Lots of uncomfortable cystoscopies and five years later, I was declared reasonably safe, and only went in for another cystoscopy check when the scarring caused the odd serious UTI to pop up.
Off I went on my path - which included a very sick baby who grew to a toddler who clearly was on the autistic spectrum, who grew to a gifted child with Aspergers Syndrome, who grew to a desperate public school student who needed homeschooling in order to survive to adulthood. I love my son more than anything, as does my husband, so we set aside our financial needs and our personal desires and concentrated on our child. After all, there would be time for us later, when he reached adulthood...
At the end of November, I find A Lump. I have very dense & lumpy breasts (you really needed to know that, right?), so it wasn't really clear that this lump was necessarily different from the others, and it was a bit hard to find, but there it was. Wrong time of my cycle for a mammogram, so I waited the requisite week and then called for an appointment. The gal evidently didn't really understand what I said, so she made a regular appointment, which it turned out was wrong, so then I had to wait a couple weeks in order to see my GP, have her check The Lump out, have her make an appointment for a diagnostic mammogram (where they have a radiologist on hand to diagnose the films right on the spot, rather than making you wait for the report) and ultrasound, and actually get to the appointment.
It was pretty clear to them that The Lump was not a nice, harmless cyst. They scheduled a core biopsy for two days later.
The biopsy came back. Grade 3 Invasive Ductal Carcinoma. That means it's malignant, and it's growing fast. No word back at that time on whether it was positive for hormone receptors (many breast tumors have hormone receptors for estrogen or progesterone - they are like little sockets for the hormones to plug into and accelerate growth). No idea of the Stage yet; that was to come when I had the mastectomy/lumpectomy and determined how many lymph nodes were involved, etc.
Off to the surgeon for a consult. Explained medical history and recent (if you count at least a year) symptoms, and it is decided that I should have a PET/CT scan.
Well, look at that - the cancer has metastasized to the left hip (illium), the right femur (at the part that is socketed right into the hip), and possibly to the uterus. Also there is a tumor in one ovary.
Surgery put off. The Lump would make a good Lab Rat whose growth or shrinkage would indicate success or failure of treatment (chemo, radiation, hormone elimination drugs, drugs to try to build up your bones while the hormone elimination drugs work towards osteoporosis and the cancer eats them away).
Off to the OB/GYN for a endometrial biopsy and blood draw for a check on my ovarian activity (report to follow today or tomorrow).
Full breast biopsy results finally back - HER2 negative, so unsurprisingly the cancer is not of a genetic origin - there is no history of breast cancer in the family. However, the tumor is receptor positive for both estrogen and progesterone. Well. That would explain the runaway nature of this train, wouldn't it, given my extremely hormonally unbalanced system? How nice.
Am wondering if I should have a brain/sinus scan, as well - breast cancer tends to metastacize to the liver, the bones, and the brain. My luck hasn't been stellar this month, so I dread the possibility - but I've had a chronic sinus infection for 18 years and certain symptoms for the past few months that I've been attributing to peri-menopause, as I'd been attributing hip pain to arthritis. And I imagine that brain cancer might affect prognosis and treatment.
Should also have my heart checked out, since it's been acting up the last few years, and my cholesterol is high. Chemo can damage the heart, as can radiation in the chest area. Of course, an already wonky immune system, chronic infections and lots of fungal issues also raise risks of complicating chemo treatment. And we still don't know what the problem is with my esophagus and digestive tract, but it sure is causing problems - areas that radiation and chemo are likely to negatively impact, among others.
And here I am, gaping in dismay at the shattered ruins of the dreams I had just a couple weeks ago. As soon as I got the kid off to college (even if he lived at home), I was going to build my own fiber business, do something just for me, spend some Alone Time with the husband, maybe go to a fiber festival using the business as an excuse - the first big travel/vacation since long before the child showed up on the scene. Yup, I was going to live for me, for once.
Now I have to decide between very limited options. Really, I only have two.
Do I let the doctors do as they are likely to insist, and start a regimen of poisons and medications and being carved up and roasted, significantly decreasing my quality of life for at least the near future and in at least some ways for the long term haul, hoping that it might give me an extra year or two with my family before the monster comes back?
Or do I put my trust in what is basically faith healing, and go down the 'natural healing/diet' path in hopes of at least improving my quality of life for a little while, taking the chance that my doctors are right and I might very well be shortening my lifespan (and thus time with my family and friends) considerably?
Well, that's what it feels like, anyway. And the Universe (bless it) knows that I've been exposed often enough to all and sundry in the last couple weeks. I don't suppose it matters if I expose myself to people I know, along with all the strangers.
Here's the rundown:
I had cancer while pregnant with my first (and, it turned out, my only living) child, when I was 29. At that time I had no risk factors, being at that time a relatively normal weight and young and a non-smoker and a non-drinker - yet there it was, bladder cancer. We found it early, while it was slow-growing and small; my baby was pretty much laying right on top of my bladder and pressing one side of it against the other, and the tumor got riled up and persistently tried to eject the irritant. Several months of constant antibiotics and anti-contraction medications later, and once the baby was viable in case of premature labor, we had the cancer excised and all seemed well. Lots of uncomfortable cystoscopies and five years later, I was declared reasonably safe, and only went in for another cystoscopy check when the scarring caused the odd serious UTI to pop up.
Off I went on my path - which included a very sick baby who grew to a toddler who clearly was on the autistic spectrum, who grew to a gifted child with Aspergers Syndrome, who grew to a desperate public school student who needed homeschooling in order to survive to adulthood. I love my son more than anything, as does my husband, so we set aside our financial needs and our personal desires and concentrated on our child. After all, there would be time for us later, when he reached adulthood...
At the end of November, I find A Lump. I have very dense & lumpy breasts (you really needed to know that, right?), so it wasn't really clear that this lump was necessarily different from the others, and it was a bit hard to find, but there it was. Wrong time of my cycle for a mammogram, so I waited the requisite week and then called for an appointment. The gal evidently didn't really understand what I said, so she made a regular appointment, which it turned out was wrong, so then I had to wait a couple weeks in order to see my GP, have her check The Lump out, have her make an appointment for a diagnostic mammogram (where they have a radiologist on hand to diagnose the films right on the spot, rather than making you wait for the report) and ultrasound, and actually get to the appointment.
It was pretty clear to them that The Lump was not a nice, harmless cyst. They scheduled a core biopsy for two days later.
The biopsy came back. Grade 3 Invasive Ductal Carcinoma. That means it's malignant, and it's growing fast. No word back at that time on whether it was positive for hormone receptors (many breast tumors have hormone receptors for estrogen or progesterone - they are like little sockets for the hormones to plug into and accelerate growth). No idea of the Stage yet; that was to come when I had the mastectomy/lumpectomy and determined how many lymph nodes were involved, etc.
Off to the surgeon for a consult. Explained medical history and recent (if you count at least a year) symptoms, and it is decided that I should have a PET/CT scan.
Well, look at that - the cancer has metastasized to the left hip (illium), the right femur (at the part that is socketed right into the hip), and possibly to the uterus. Also there is a tumor in one ovary.
Surgery put off. The Lump would make a good Lab Rat whose growth or shrinkage would indicate success or failure of treatment (chemo, radiation, hormone elimination drugs, drugs to try to build up your bones while the hormone elimination drugs work towards osteoporosis and the cancer eats them away).
Off to the OB/GYN for a endometrial biopsy and blood draw for a check on my ovarian activity (report to follow today or tomorrow).
Full breast biopsy results finally back - HER2 negative, so unsurprisingly the cancer is not of a genetic origin - there is no history of breast cancer in the family. However, the tumor is receptor positive for both estrogen and progesterone. Well. That would explain the runaway nature of this train, wouldn't it, given my extremely hormonally unbalanced system? How nice.
Am wondering if I should have a brain/sinus scan, as well - breast cancer tends to metastacize to the liver, the bones, and the brain. My luck hasn't been stellar this month, so I dread the possibility - but I've had a chronic sinus infection for 18 years and certain symptoms for the past few months that I've been attributing to peri-menopause, as I'd been attributing hip pain to arthritis. And I imagine that brain cancer might affect prognosis and treatment.
Should also have my heart checked out, since it's been acting up the last few years, and my cholesterol is high. Chemo can damage the heart, as can radiation in the chest area. Of course, an already wonky immune system, chronic infections and lots of fungal issues also raise risks of complicating chemo treatment. And we still don't know what the problem is with my esophagus and digestive tract, but it sure is causing problems - areas that radiation and chemo are likely to negatively impact, among others.
And here I am, gaping in dismay at the shattered ruins of the dreams I had just a couple weeks ago. As soon as I got the kid off to college (even if he lived at home), I was going to build my own fiber business, do something just for me, spend some Alone Time with the husband, maybe go to a fiber festival using the business as an excuse - the first big travel/vacation since long before the child showed up on the scene. Yup, I was going to live for me, for once.
Now I have to decide between very limited options. Really, I only have two.
Do I let the doctors do as they are likely to insist, and start a regimen of poisons and medications and being carved up and roasted, significantly decreasing my quality of life for at least the near future and in at least some ways for the long term haul, hoping that it might give me an extra year or two with my family before the monster comes back?
Or do I put my trust in what is basically faith healing, and go down the 'natural healing/diet' path in hopes of at least improving my quality of life for a little while, taking the chance that my doctors are right and I might very well be shortening my lifespan (and thus time with my family and friends) considerably?
12/19/08
Hellooooooo...
The thing about having cancer is that you aren't you any more.
It's not that the doctors and nurses don't care, or that the cancer 'navigator'/coordinator doesn't mean well. It's that they don't know you. It's the cancer that they are familiar with, so that's where the primary relationship gets played out.
They talk at you, but they are talking to the Cancer. It's the Cancer that is treated, the Cancer that is scanned, the Cancer that is irradiated, the Cancer that is measured and cut and biopsied and checked out on a constant basis. The Cancer gets the diagnosis and the prognosis. The Cancer's stats determine the strategy for the battles to come.
You are the transport system and the battleground over which the war is fought. But as mere territory, you have little say in the process - unless you revolt and refuse to be treated at all, which of course leaves you alone and more or less in the dark.
It's nothing personal.
Well, except when the bills start coming in...
It's not that the doctors and nurses don't care, or that the cancer 'navigator'/coordinator doesn't mean well. It's that they don't know you. It's the cancer that they are familiar with, so that's where the primary relationship gets played out.
They talk at you, but they are talking to the Cancer. It's the Cancer that is treated, the Cancer that is scanned, the Cancer that is irradiated, the Cancer that is measured and cut and biopsied and checked out on a constant basis. The Cancer gets the diagnosis and the prognosis. The Cancer's stats determine the strategy for the battles to come.
You are the transport system and the battleground over which the war is fought. But as mere territory, you have little say in the process - unless you revolt and refuse to be treated at all, which of course leaves you alone and more or less in the dark.
It's nothing personal.
Well, except when the bills start coming in...
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