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?

7 comments:

Nancy K. said...

I am in total awe of how you are conducting yourself during this nightmare. I think I know what I would do, but it's easy to think when it's not really me in the situation. Whatever you decide, you're in my prayers and I hope we can meet and spend some wonderful fiber time together soon!

Dori Ann said...

I almost sense a calm over you since we emailed over the results of your tests.I am so glad you have a supportive family, although I know even being surrounded with them, you can still feel alone. Your blog is a wonferful idea. As to your decision, it will take alittle time and research I'm sure. I'm not sure how they have improved on side effects with some of the treatmens, I also understand quality of life is a big issue. Maybe alittle of both?
But ya know, you could start with your business on a small scale, or even go thru the motions, have fun and not worry about selling anything :))

Glorious Hats said...

It sounds like you are in a land where all options are difficult paths.

Drs tend to want to "do" something because if they find it of course it must be treated. Do more months "alive" equal more time with family. More time to talk, to laugh, to love, to experience good, to spin fiber. On the other hand does not aggressively trying to reduce the cancer load really allow a more "normal" life. Oh for a crystal ball and accurate way to predict which path will serve you and family more effectively.

Are there hospice people in your area? What can/do they offer - in tx, supportive care or services, pain management, palliative care. If you choose to let the Cancer run it's course naturally- will they support you in your decision, advocate for you, help you fill your days with family, friends, rather than nakedness, tests, treatments, illness secondary to treatments?

One often feels such a loss of control once the medical system is engaged -- I often wonder is the treatment for the good of the person with the illness or being done to make the "care providers" feel better that they are trying to save a life or extend it.

Is there any middle road. Tx that slows the Cancer without side effects that reduce quality of life?

It is great that you have an ability to express you feelings. You surely present your story and the decisions that you face with grace and dignity.

Whatever choices you make, you have my caring, concern and support for what that is worth.

Also, is it helpful to you, for those of us you know not at all, or just slightly, to share our thoughts, responses, opinions? Or will you be better served with lighter comments and just letting you know we are here reading and sharing so you are not writing in a void?

With very kind regards,
Jane

Anne said...

I'm glad you have started to recount this journey in your new blog....I think it may help you, but what a dreadful runaway time you are having these past few weeks :-(

Can I say, I wouldn't worry about osteoporosis at this stage...osteoporosis is very slow and reversable as I am experiencing. Forget the cholesterol too, really. People are always discussing it on my diabetes forum and believe you me the pharma industry has really taken people for a ride on this one. Did you know that low cholesterol is a risk factor for cancer - so keep your levels up !

with lots of love,
Anne

Delighted Hands said...

You have articulated a very hard situation beautifully. I am sending you a hug; will sit next to you and listen. I don't think there is any one right answer-just one that will work for you.

The Violet Hoarder said...

You are such a beautiful soul...and wiser about this all than you probably even understand. Your relative equanimity in the face of everything astonishes me. I'm sure at times you must feel like the world is falling to pieces, but your voice is like a steady flame. Many of your decisions will probably be made in your heart not your head. The right door will open--you won't have to ask. Go out in nature whenever you can. It's a great healer.

Scientific Lutheran said...

As much as my heart is breaking, I cannot imagine what yours is doing.

I enjoy your other blog, and was crushed for you to hear of the range of tumor diagnoses.

I'll keep up with you, and keep you in my prayers. May God give you his peace, because I'm not sure where else you'd look to find enough peace to handle this.

I want to put something else, but everything sounds dumb, or patronizing, or something, so I guess I'll leave it with, You will remain in my prayers now.