Alison’s email sent out 5/17/07 to all of their high school friends:
"All~
I got to see our girl Tess today and she is a spunky chiquita...God love her.
She asked me to send an update so I will do my best to inform you of everything we know at this point...
Tess was diagnosed with intraductal invasive carcinoma after finding a lump in her left breast. The breast cancer is in the milk ducts. She had a surgery to remove the "cancer making machine" as doctors call it, a week ago today. Today she went to her first of many appointments at the Cleveland Clinic to meet with the surgeon who performed the surgery to remove the mass in her left breast. It was a hard discussion and the doctor gave her the facts. Thank God she had wonderful Jamie and spectacular Mom Marlyn to give her support at her meeting. The severity of the cancer calls for a mastectomy on the left side and this news was very difficult for Tess to hear. The doctor also informed them that because the cancer is estrogen driven she can no longer have children. The estrogen from a pregnancy would likely bring the cancer back into her body again. Tess is having a REALLY hard time with the thought of never being able to carry a child again. Cancer fucking sucks...
She has a consultation with her oncologist on Thursday and an appointment with a plastic surgeon next week to discuss reconstruction (the left breast after chemo when she is cancer free). Tess will have her mastectomy in the next couple weeks and at this time they will take out her lymph nodes to do further testing. The doctor recommended bypassing the sentinel (sp) node dissection and thought it was best based on her age and the cancer type to just get the lymph nodes out to be sure. Tess feels good about this decision. We will know more about her chemo treatments after this surgery....how many sessions and how often. She is ready to fight and has her boxing gloves (Jamie got for her) on her bed as throw pillows."
And now...
That was then. After that first surgery we learned that she was “triple negative.” At the time it didn’t compute because we were making decisions about the chemo treatments and then getting through chemotherapy. We just knew that the normal adjuvant therapies would not work for her, but again, you can only absorb so much at once. From the TNBC (Triple Negative Breast Cancer) Foundation, the following explains her cancer more fully:
"A triple negative breast cancer diagnosis means that the offending tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name "triple negative breast cancer." On a positive note, this type of breast cancer is typically responsive to chemotherapy. Because of its triple negative status, however, triple negative tumors generally do not respond to receptor targeted treatments. Depending on the stage of its diagnosis, triple negative breast cancer can be particularly aggressive, and more likely to recur than other subtypes of breast cancer."
We are learning to be skeptical of pathology reports...her tumor was NOT estrogen driven as first told to us and the pet scan showed a false positive on a lymph node. And her reconstruction strategies were based on where she thought she was going to be rather than where she was. For instance, future pregnancies were initially thought to be impossible and that may not be the case. A tram flap reconstruction is not conducive to a good pregnancy since you lose an abdominal muscle and get a really tight tummy tuck.
Triple negative is also closely associated with the genetic genes for breast cancer, known as BRCA1 and BRCA2. Tess also tested negative for both of those much to the super surprise of the Cleveland Clinic staff because she fits the profile exactly. Statistics vary depending upon whose study you are reading, but triple negatives make up about 10-11% of all breast cancers and of those 78% are BRCA1 or BRCA2, especially if they have a latino or african-american background. That leaves Tess in about a 3% category of who knows what. (Undiscovered gene?) Does that mean that a preventive mastectomy on the other side would be a good idea?
So many questions again that it is almost like starting over. She has met with CC staff regarding all these issues and next Tuesday meets with the Chief Surgeon at CC to plead her case and get his input. If you are curious about more technical stuff, Google Triple Negative Breast Cancer for more than you really wanted to know.
That’s enough for today. More next time on discoveries and Tess’s strategies.
Sunday, October 14, 2007
Friday, October 12, 2007
Billing Departments
It was a good visit. We broached one of the stickier items of major illnesses........the billing departments!
Tess was feeling most anxious about bills that were coming in and confused about no bills, double bills or excessive bills. Insurance was paying some but not what they expected. Jamie did not have time to sort them out and until now, Tess did not have the ability to deal with that part also. I just laughed.
It is so ironic that just when you are too old or too sick or too confused or too tired that hospital billing departments seem to be the most creative at chaos. I assured Tess that this was normal and undoubtedly things were not as they appeared. It seems to be part of the whole process.
In the first half day of sorting, she discovered another person with her name in South Dakota was getting half of the bills, and of course, not paying them. And that another goodly proportion was going to an old insurance company who of course was not paying them. She turned the snippy Cleveland Clinic administrative clerk from a foe to a friend, and her mother (me!) promised to return the following week with another 3-ring notebook, this time devoted to the art of following the labrinth of mysterious hospital billing.
She has about 40 more calls to make today (!) and I probably should have anticipated this and prepared the 3-ring notebook earlier, but hey. Each in its appointed time. Looking back on my last hospital stay, the charts and accounting pages with all the highlights, codes, connecting lines, etc. look like a page from an advanced math class, and my case was a lot less complicated than Tess's.
Maybe it's part of the cure. When your brain has recovered enough to untangle the billing they know you're almost done!
Tess was feeling most anxious about bills that were coming in and confused about no bills, double bills or excessive bills. Insurance was paying some but not what they expected. Jamie did not have time to sort them out and until now, Tess did not have the ability to deal with that part also. I just laughed.
It is so ironic that just when you are too old or too sick or too confused or too tired that hospital billing departments seem to be the most creative at chaos. I assured Tess that this was normal and undoubtedly things were not as they appeared. It seems to be part of the whole process.
In the first half day of sorting, she discovered another person with her name in South Dakota was getting half of the bills, and of course, not paying them. And that another goodly proportion was going to an old insurance company who of course was not paying them. She turned the snippy Cleveland Clinic administrative clerk from a foe to a friend, and her mother (me!) promised to return the following week with another 3-ring notebook, this time devoted to the art of following the labrinth of mysterious hospital billing.
She has about 40 more calls to make today (!) and I probably should have anticipated this and prepared the 3-ring notebook earlier, but hey. Each in its appointed time. Looking back on my last hospital stay, the charts and accounting pages with all the highlights, codes, connecting lines, etc. look like a page from an advanced math class, and my case was a lot less complicated than Tess's.
Maybe it's part of the cure. When your brain has recovered enough to untangle the billing they know you're almost done!
Wednesday, October 10, 2007
October!
The last two months happened; I was there, but I have to look at my Daytimer to see what I did. I only caught August and September birthdays sporadically and posting here stopped. There's a lump in my throat when I reflect.
My cousin gave me three pocket pals yesterday: Find the joy, Spread it around with simple niceness, and Protect it by forgiveness or forgetfulness. When I think on this, the lump goes away.
Today was the day of Tess's scheduled Tram Flap surgery. Last week she cancelled and changed directions. Alison called her two weeks ago to say Hey, Let's take the boys apple picking. She had a magazine with her that carried the story of a young female mountain climber who was diagnosed with breast cancer. She opted for a bilateral mastectomy, a healthy lifestyle (what does that mean? Mountain climbers probably already have healthy lifestyles!).......anyway, it churned Tess's gut. She went home and began to rethink her options. Tram flap was not good for future pregnancies and that is a possibility in a year or two....or five. Bilateral would mean peace of mind regarding the other breast tissue. And then there was this triple negative issue.
I don't know if it was in the magazine or not but somehow the triple negative pathology came up again and we started an internet search.
You can only process so much at one time and after the genetic testing came back negative we sort of dropped the triple negative issue. But when present directions were ditched, we again reviewed and understood more fully the oncologist Dr. Spiro's doom and gloom first meeting. Just maybe we might not be completely finished with doom and gloom after all. Or better put, we need to carefully consider our options from several directions in order to remain in glory and light. I will post more technical details in a couple days.
Meantime I am heading up to Tess's this morning since that was on the schedule anyway. A good day to play with grandson and review current strategies.
Keep those prayer chains going!
My cousin gave me three pocket pals yesterday: Find the joy, Spread it around with simple niceness, and Protect it by forgiveness or forgetfulness. When I think on this, the lump goes away.
Today was the day of Tess's scheduled Tram Flap surgery. Last week she cancelled and changed directions. Alison called her two weeks ago to say Hey, Let's take the boys apple picking. She had a magazine with her that carried the story of a young female mountain climber who was diagnosed with breast cancer. She opted for a bilateral mastectomy, a healthy lifestyle (what does that mean? Mountain climbers probably already have healthy lifestyles!).......anyway, it churned Tess's gut. She went home and began to rethink her options. Tram flap was not good for future pregnancies and that is a possibility in a year or two....or five. Bilateral would mean peace of mind regarding the other breast tissue. And then there was this triple negative issue.
I don't know if it was in the magazine or not but somehow the triple negative pathology came up again and we started an internet search.
You can only process so much at one time and after the genetic testing came back negative we sort of dropped the triple negative issue. But when present directions were ditched, we again reviewed and understood more fully the oncologist Dr. Spiro's doom and gloom first meeting. Just maybe we might not be completely finished with doom and gloom after all. Or better put, we need to carefully consider our options from several directions in order to remain in glory and light. I will post more technical details in a couple days.
Meantime I am heading up to Tess's this morning since that was on the schedule anyway. A good day to play with grandson and review current strategies.
Keep those prayer chains going!
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