Remember that Wednesday is the first big surgery, and that I probably won't be posting here for a week or two. Updates on my progress will be posted in the 'Journal' section of:
http://caringbridge.org/visit/eileenm
You can leave a message for me on the 'Guestbook' page of the same website, and my mom or the guys will make sure it gets to me.
See you in a couple weeks!
1/18/09
Words and Reality
Benign. Malignant.
Such evocative words, don't you think? Weird to think of tumors being either benevolent little lumps smiling peacefully in their own little world... or evilly plotting monsters hiding in their lairs, sending out their minions to wreak havoc wherever they go.
Such small things, to have such a huge impact on the survival of the world in which they live.
In a way, it's an image that should give us pause when we think about our own impact on the world in which we live. To simply smile benignly upon our own little world may seem like a rather inactive, unimportant activity - but the difference between that and doing active damage can be the difference between life and utter destruction.
Think how much more powerful positive action can be; think how much more powerful chaotic action can be; think how much more powerful negative action can be.
When we choose to either take action or to refrain from taking action, do we have any true understanding of the consequences that follow? Small things can have great consequences, magnificent or disastrous. And we have the power to choose which small actions we are going to take in our own universe, which ripples we are going to send off across our own personal pond.
We may be small, we may often feel insignificant, but we matter.
Every cell, and every soul.
Such evocative words, don't you think? Weird to think of tumors being either benevolent little lumps smiling peacefully in their own little world... or evilly plotting monsters hiding in their lairs, sending out their minions to wreak havoc wherever they go.
Such small things, to have such a huge impact on the survival of the world in which they live.
In a way, it's an image that should give us pause when we think about our own impact on the world in which we live. To simply smile benignly upon our own little world may seem like a rather inactive, unimportant activity - but the difference between that and doing active damage can be the difference between life and utter destruction.
Think how much more powerful positive action can be; think how much more powerful chaotic action can be; think how much more powerful negative action can be.
When we choose to either take action or to refrain from taking action, do we have any true understanding of the consequences that follow? Small things can have great consequences, magnificent or disastrous. And we have the power to choose which small actions we are going to take in our own universe, which ripples we are going to send off across our own personal pond.
We may be small, we may often feel insignificant, but we matter.
Every cell, and every soul.
Update III
It's been a whole week since the last update, and there is much to relate!
This past week I met the new oncologist.
Ah, much better! In he bounced, wild curly hair flying every which way, wide grin on his face, eyes sparkling - a lovely nebishy man, similar to the best of the boys I grew up with in St. Louis Park. And the first thing he did, bless his heart, is tell us that he had studied my case very closely, and agreed with me that it made sense to approach this cancer first with hormonal treatments rather than with chemo. He understands both my reasoning and some of my feelings - he was diagnosed with colon cancer last year, so he's experienced some of the dehumanizing treatment and some of the worries that come with this package.
HA!! So there, Dr. "You can get a second opinion if you like, but he will just tell you the same thing I'm telling you now."
So. Given my low ferritin/iron levels and other blood markers for anemia, my menstrual cycles that tie me to a bathroom for more than a week of every month and the endometriosis that renders them very painful, the PMS that adds a few more days of Not Fun to each month, and the ovarian tumor combined with the suspicious uterine activity on the scans... Dr. Bouncy agrees with the surgeon: it would be reasonable for me to see a gynecologist about having the whole system removed.
Dr. Bouncy also feels it would be a good idea to biopsy the bone on my hip to see if that tumor still retains the hormone receptors that are on the cancer cells in the breast. Not looking forward to that, I must say, but we will try leave each concern unto its own day as much as possible.
New gynecologist - a brisk/abrupt woman who is not my style, but who seems competent enough - agrees with breast surgeon and Dr. Bouncy that a hysterectomy/oophorectomy would be a reasonable choice, both for cancer treatment and for health/comfort reasons.
So. Bye-bye hormones. Hello sudden - and extreme, given my current hormonal status - menopause. What hormones are left in the system after the surgery will probably be eliminated (or more accurately, rendered useless) by drugs that I will have to take for whatever remains of my life.
Wheeeeee... should be fun for me, and a real joy for all the people who have to live with my moods for the foreseeable future!
I finally got hold of the chiropractor/naturopath/homeopathist/kinesiologist I worked with more than a decade ago when I was in serial car accidents (for a couple years I evidently had a big target on my car that said, "I'm bored sitting at this red light, please smash into me.") Well, I got hold of her receptionist, anyway. The extremely busy Dr. Carol very kindly gifted upon me some homeopathic remedies to take before and after the surgery.
Ultrasound of uterus on Monday, to see what sort of surgical procedure will be possible - although the surgery could literally change midstream during the operation, if it turns out that the hernia situation (or something else) complicates things. Pre-Op physical on Tuesday. At some point an ultrasound measurement of the breast tumor, hopefully, to get a measurement of where we are pre-treatment so that we can compare growth/shrinkage to post-op treatment. Surgery on Wednesday, followed by a 3-6 day hospital stay, depending on type of surgery, complications, and how quickly I can get the plumbing working again. A biopsy of all the excised stuff will tell us if there's any malignancies there - metastasis to organs brings with it a more grim prognosis, so we are crossing our fingers that all fibroids and dermoids and etc. will be benign.
Wish me luck.
This past week I met the new oncologist.
Ah, much better! In he bounced, wild curly hair flying every which way, wide grin on his face, eyes sparkling - a lovely nebishy man, similar to the best of the boys I grew up with in St. Louis Park. And the first thing he did, bless his heart, is tell us that he had studied my case very closely, and agreed with me that it made sense to approach this cancer first with hormonal treatments rather than with chemo. He understands both my reasoning and some of my feelings - he was diagnosed with colon cancer last year, so he's experienced some of the dehumanizing treatment and some of the worries that come with this package.
HA!! So there, Dr. "You can get a second opinion if you like, but he will just tell you the same thing I'm telling you now."
So. Given my low ferritin/iron levels and other blood markers for anemia, my menstrual cycles that tie me to a bathroom for more than a week of every month and the endometriosis that renders them very painful, the PMS that adds a few more days of Not Fun to each month, and the ovarian tumor combined with the suspicious uterine activity on the scans... Dr. Bouncy agrees with the surgeon: it would be reasonable for me to see a gynecologist about having the whole system removed.
Dr. Bouncy also feels it would be a good idea to biopsy the bone on my hip to see if that tumor still retains the hormone receptors that are on the cancer cells in the breast. Not looking forward to that, I must say, but we will try leave each concern unto its own day as much as possible.
New gynecologist - a brisk/abrupt woman who is not my style, but who seems competent enough - agrees with breast surgeon and Dr. Bouncy that a hysterectomy/oophorectomy would be a reasonable choice, both for cancer treatment and for health/comfort reasons.
So. Bye-bye hormones. Hello sudden - and extreme, given my current hormonal status - menopause. What hormones are left in the system after the surgery will probably be eliminated (or more accurately, rendered useless) by drugs that I will have to take for whatever remains of my life.
Wheeeeee... should be fun for me, and a real joy for all the people who have to live with my moods for the foreseeable future!
I finally got hold of the chiropractor/naturopath/homeopathist/kinesiologist I worked with more than a decade ago when I was in serial car accidents (for a couple years I evidently had a big target on my car that said, "I'm bored sitting at this red light, please smash into me.") Well, I got hold of her receptionist, anyway. The extremely busy Dr. Carol very kindly gifted upon me some homeopathic remedies to take before and after the surgery.
Ultrasound of uterus on Monday, to see what sort of surgical procedure will be possible - although the surgery could literally change midstream during the operation, if it turns out that the hernia situation (or something else) complicates things. Pre-Op physical on Tuesday. At some point an ultrasound measurement of the breast tumor, hopefully, to get a measurement of where we are pre-treatment so that we can compare growth/shrinkage to post-op treatment. Surgery on Wednesday, followed by a 3-6 day hospital stay, depending on type of surgery, complications, and how quickly I can get the plumbing working again. A biopsy of all the excised stuff will tell us if there's any malignancies there - metastasis to organs brings with it a more grim prognosis, so we are crossing our fingers that all fibroids and dermoids and etc. will be benign.
Wish me luck.
1/12/09
Wouldn't It Be Loverly?
So my homeschooling-kids-w/Asperger's list popped up this morning with a link to a very worthy cause:
http://www.youtube.com/watch?v=ByCIsxYKJZA
And I got to thinking, wouldn't it be great if there were a group/site that did this sort of thing for cancer patients and their families? Alternative tests and treatments are not expensive compared to the standard ones paid for by insurance coverage... but they are also not covered by insurance companies, which means that tests and/or treatment that cost $3,000 or less per year (CATT, for instance, or using non-radiating thermography instead of mammography) is vastly more expensive for the patient than a $6,000 MRI or PET scan - not to even mention the insane cost of chemo and radiation treatments, etc.
Something for someone more organized and clever than I currently am to ponder... but wouldn't it be loverly?
http://www.youtube.com/watch?v=ByCIsxYKJZA
And I got to thinking, wouldn't it be great if there were a group/site that did this sort of thing for cancer patients and their families? Alternative tests and treatments are not expensive compared to the standard ones paid for by insurance coverage... but they are also not covered by insurance companies, which means that tests and/or treatment that cost $3,000 or less per year (CATT, for instance, or using non-radiating thermography instead of mammography) is vastly more expensive for the patient than a $6,000 MRI or PET scan - not to even mention the insane cost of chemo and radiation treatments, etc.
Something for someone more organized and clever than I currently am to ponder... but wouldn't it be loverly?
1/11/09
Update II
I am firing the clinic/doctors I've been 'working with' (ha), and going on to a new Team.
I couldn't get an appointment with the very popular oncologist until Feb. 10, which is rather late to be starting over (this is a very aggressive cancer), but I did manage to get an appointment with the new surgeon.
I was very impressed with her nurse, as was mom, and the doctor seemed nice enough. Better, she gave me lots of information. It wasn't all pleasant information; some of it was upsetting, and all the more disturbing because the oncologist I had been going to had completely neglected to mention much of it: the femur still had a spot of activity on it (which he had implied was not the case); the fibroid tumor in my ovary was growing and could burst the ovary and/or turn cancerous; my uterus is pre-cancerous; I should probably have a hysterectomy; and I have a large hernia which I probably will have to let go for a while because 'the cure is probably worse than the disease'.
Well, gee, you can see why the oncologist didn't feel that lowly old me needed to know any of these things. It's not as though I might be making any major decisions in the near future in which having this information might be useful...
Mom looked as though she'd been hit by a truck - I felt the same, but she says that I looked as though this was all old news. My face has never reflected accurately what is going on inside, and clearly it is not learning new tricks at this late date.
The good news is that the surgeon not only made an appointment with a gynecologist for the coming week, but also is having a plastic surgeon see me just before the mastectomy to mark guidelines on me (evidently larger ladies can end up with uncomfortable knots of tissue if the simple side-to-side seam is exclusively used - I will end up looking like Frankenstein's monster, but will hopefully be a bit more comfortable, which is a plus in my book). She also pulled some strings, and I will be seeing the oncologist in the coming week, as well.
So things are finally moving along, and I have hope that this team will prove more responsive and trustworthy than the last. Not The Best of All Possible Worlds (that would be the one where I wake up and find that the whole thing was just a bad dream), but at least I might feel like an individual again - at this point I am grateful for small blessings.
I couldn't get an appointment with the very popular oncologist until Feb. 10, which is rather late to be starting over (this is a very aggressive cancer), but I did manage to get an appointment with the new surgeon.
I was very impressed with her nurse, as was mom, and the doctor seemed nice enough. Better, she gave me lots of information. It wasn't all pleasant information; some of it was upsetting, and all the more disturbing because the oncologist I had been going to had completely neglected to mention much of it: the femur still had a spot of activity on it (which he had implied was not the case); the fibroid tumor in my ovary was growing and could burst the ovary and/or turn cancerous; my uterus is pre-cancerous; I should probably have a hysterectomy; and I have a large hernia which I probably will have to let go for a while because 'the cure is probably worse than the disease'.
Well, gee, you can see why the oncologist didn't feel that lowly old me needed to know any of these things. It's not as though I might be making any major decisions in the near future in which having this information might be useful...
Mom looked as though she'd been hit by a truck - I felt the same, but she says that I looked as though this was all old news. My face has never reflected accurately what is going on inside, and clearly it is not learning new tricks at this late date.
The good news is that the surgeon not only made an appointment with a gynecologist for the coming week, but also is having a plastic surgeon see me just before the mastectomy to mark guidelines on me (evidently larger ladies can end up with uncomfortable knots of tissue if the simple side-to-side seam is exclusively used - I will end up looking like Frankenstein's monster, but will hopefully be a bit more comfortable, which is a plus in my book). She also pulled some strings, and I will be seeing the oncologist in the coming week, as well.
So things are finally moving along, and I have hope that this team will prove more responsive and trustworthy than the last. Not The Best of All Possible Worlds (that would be the one where I wake up and find that the whole thing was just a bad dream), but at least I might feel like an individual again - at this point I am grateful for small blessings.
1/1/09
What I Did On Winter Vacation
After the PET/CT scan, I got a call from my surgeon in the early morning, informing me that she had canceled the surgery because the breast cancer had metastasized to my right femur and left ilium. She said she couldn't explain the bone cancer any more, that she was basically just a mechanic, but that we would want to use the breast tumor as a way to check to see if the chemo was working. Then she hung up.
The cancer navigator wasn't in all that day, and none of the other navigators there answered their phones, either. Nobody returned my increasingly frantic messages until late the following morning, when my cancer navigator called to tell me that she had made appointments for a biopsy and blood draw and oncology appointment (see earlier post re this), and told me about the possible reproductive organ involvement.
I talked to the oncologist on the 29th. Not happy with the man himself - to say that he was condescending and uncommunicative and closed off would be an understatement. I won't go into details, except to say that he gave us his two treatment plans for breast cancer and the only information he would give us on side effects is "Your hair will fall out and you will be tired, you will go into immediate menopause." When I asked about my multiple chronic infections and whether these would be a problem with the chemo, he admitted it would, but when I asked if these should be treated first, he simply replied in the negative and would not explain further.
Well, that is NOT an adequate explanation of side effects and expected outcomes, especially with a patient who is asking questions and who specifically asks about Quality of Life vs. Quantity - esp. one whose life expectancy according to said doctor is "1 or 2 years, maybe 3."
And it was only THEN, as he was telling me that he was ordering an MRI study of the spots on my hip & femur, that he let slip that the previous scans were odd, because there didn't seem to be any lymph node involvement at the time of the scan. He also said that keeping the breast tumor (which has now been compromised by the biopsy and is gleefully shedding malignant cells into my system) was more for psychological benefit of patients, because they felt better if they saw that their breast tumor was shrinking.
Now, this is a LITTLE bit important to know, since the surgeon had canceled the surgery without telling me all this, and without asking me about MY preferences on the matter. And that information would have made a difference to my choices of treatment, as having had a separate and independent cancer in the past, I think the lymph node non-involvement was significant to the possibility that these are separate independent cancers rather than metastasized cancer. If none of them had metastasized to that point, then treating them in order to shrink them or changing my body's environment to cut off growth factors could actually significantly prolong my life; if they are metastasized, then I have other cancers landing and growing in all sorts of spots all over my body, and the prognosis is more grim. Instead, I have perhaps lost my window of opportunity to get rid of the tumor before it got to my lymph nodes.
It's not that any of that is a sure thing, it's that they didn't bother to give me the information I could have used in order to make the decision for myself - a decision that is crucial to MY life, not to theirs.
Would THEY want to be treated this way, if they were in my position?
The cancer navigator wasn't in all that day, and none of the other navigators there answered their phones, either. Nobody returned my increasingly frantic messages until late the following morning, when my cancer navigator called to tell me that she had made appointments for a biopsy and blood draw and oncology appointment (see earlier post re this), and told me about the possible reproductive organ involvement.
I talked to the oncologist on the 29th. Not happy with the man himself - to say that he was condescending and uncommunicative and closed off would be an understatement. I won't go into details, except to say that he gave us his two treatment plans for breast cancer and the only information he would give us on side effects is "Your hair will fall out and you will be tired, you will go into immediate menopause." When I asked about my multiple chronic infections and whether these would be a problem with the chemo, he admitted it would, but when I asked if these should be treated first, he simply replied in the negative and would not explain further.
Well, that is NOT an adequate explanation of side effects and expected outcomes, especially with a patient who is asking questions and who specifically asks about Quality of Life vs. Quantity - esp. one whose life expectancy according to said doctor is "1 or 2 years, maybe 3."
And it was only THEN, as he was telling me that he was ordering an MRI study of the spots on my hip & femur, that he let slip that the previous scans were odd, because there didn't seem to be any lymph node involvement at the time of the scan. He also said that keeping the breast tumor (which has now been compromised by the biopsy and is gleefully shedding malignant cells into my system) was more for psychological benefit of patients, because they felt better if they saw that their breast tumor was shrinking.
Now, this is a LITTLE bit important to know, since the surgeon had canceled the surgery without telling me all this, and without asking me about MY preferences on the matter. And that information would have made a difference to my choices of treatment, as having had a separate and independent cancer in the past, I think the lymph node non-involvement was significant to the possibility that these are separate independent cancers rather than metastasized cancer. If none of them had metastasized to that point, then treating them in order to shrink them or changing my body's environment to cut off growth factors could actually significantly prolong my life; if they are metastasized, then I have other cancers landing and growing in all sorts of spots all over my body, and the prognosis is more grim. Instead, I have perhaps lost my window of opportunity to get rid of the tumor before it got to my lymph nodes.
It's not that any of that is a sure thing, it's that they didn't bother to give me the information I could have used in order to make the decision for myself - a decision that is crucial to MY life, not to theirs.
Would THEY want to be treated this way, if they were in my position?
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