Cleveland Clinic called with a date.......January 2nd, 2008......with Dr. Crowe and Dr. Barnard. Dr. Crowe is the surgeon who does the second mastectomy and Dr. Barnard is the plastic surgeon who puts in the tissue expanders in and takes her through this stage until the implants are inserted. The expanders get pumped with a saline solution encouraging her skin to grow to accommodate them and when she has enough skin, she gets the official implants and then tweaking to pretty everything up. Altogether about eight months from, as Tess puts it, “no cans to fancy fake nips.”
The good news is that after this surgery she is not facing chemo, uncertainty, and fighting cancer. This time she will be facing a cancer-free life!
With the recurrence rate so high for triple-negatives, this solution gives her the most peace, the best assurance of a cancer-free future, and the ability to have another baby or two. As she says, “Cheers to a new Year!!!” Be well, have a happy life and “remember to check yourself monthly.”
Wednesday, November 28, 2007
Monday, November 26, 2007
Gratitude Journals
The oddest thing is you never really count your blessings until you are in trouble...just like the temptation to only take your antibiotics until you feel good rather than the full ten days it takes to truly wipe out the infection. There is even a book out now called The Science of Gratitude which I suppose, demonstrates changes in brain chemistry that happens when you have a grateful attitude and affects the way you handle things that in turn makes things turn out better. It all gets terribly complicated but also seems to me that science is continually affirming God’s laws. Give Thanks in All Things, for instance.
So, at Thanksgiving I thought our family should share a sense of gratitude for lessons learned this year and the amazing amount of blessings we have. It went down with the usual...well, our family finds the movie A Christmas Story absolutely hilarious. Life is such an absurd mix of the bizarre. What happened to It’s a Wonderful Life? We don’t live Father Knows Best...not quite The Simpson’s, thank heaven. Actually I’ve never seen them, believe it or now. My children say I would not like it ...I’m even uncomfortable with Spongepants Bob or whoever. But I can’t say we could write our story as the sweet all American family. Nevertheless...
So, what I did was to take a basket of notebooks.....mind you, I love notebooks so I could easily fill a basket with my leftovers, some new, some rejects, some with pages torn out and titles blacked out. I mean, this was not a fully thought out, Martha Stewart planned event. Not that a woman who once did not even put up a Christmas Tree (thereafter referred to as The Christmas We Had To Put the Presents on the Couch) would go to any Martha Stewart lengths. ...I took a basket of notebooks and informed the family that we should start a daily listing of things we were grateful for and share them at Christmas.
First, the jokes came about the notebooks.....old, pages torn out, rejects.....then black humor about what they would really be grateful for (and I won’t go there)....then how about if they just e-mailed Mom and she could keep the books.
Finally they left with their books and an idea of Christmas based on gratitude, the decision of a small Christmas gift exchange among us so the focus is on Christ, and underneath all the horseplay and wordplay, a grateful attitude about who we are and what we are. Happy about the way we’ve handled the year, grateful for the prayers from friends and family all around the world and knowing that their love and support will be there next year also.
So, at Thanksgiving I thought our family should share a sense of gratitude for lessons learned this year and the amazing amount of blessings we have. It went down with the usual...well, our family finds the movie A Christmas Story absolutely hilarious. Life is such an absurd mix of the bizarre. What happened to It’s a Wonderful Life? We don’t live Father Knows Best...not quite The Simpson’s, thank heaven. Actually I’ve never seen them, believe it or now. My children say I would not like it ...I’m even uncomfortable with Spongepants Bob or whoever. But I can’t say we could write our story as the sweet all American family. Nevertheless...
So, what I did was to take a basket of notebooks.....mind you, I love notebooks so I could easily fill a basket with my leftovers, some new, some rejects, some with pages torn out and titles blacked out. I mean, this was not a fully thought out, Martha Stewart planned event. Not that a woman who once did not even put up a Christmas Tree (thereafter referred to as The Christmas We Had To Put the Presents on the Couch) would go to any Martha Stewart lengths. ...I took a basket of notebooks and informed the family that we should start a daily listing of things we were grateful for and share them at Christmas.
First, the jokes came about the notebooks.....old, pages torn out, rejects.....then black humor about what they would really be grateful for (and I won’t go there)....then how about if they just e-mailed Mom and she could keep the books.
Finally they left with their books and an idea of Christmas based on gratitude, the decision of a small Christmas gift exchange among us so the focus is on Christ, and underneath all the horseplay and wordplay, a grateful attitude about who we are and what we are. Happy about the way we’ve handled the year, grateful for the prayers from friends and family all around the world and knowing that their love and support will be there next year also.
Saturday, November 24, 2007
Port Removal
Wednesday while we were on our cruise, November 14th, TJ had his day in court regarding the divorce and Tess was scheduled for her chemo port removal.
Neither went as hoped. Which was partly why both kids wanted to come home with their kids for a normal old fashioned Thanksgiving and was why mother had a hellava time with the Thanksgiving prayer, rambling all over the place and getting all sloppy and emotional.
TJ’s ruling will come down sometime, hopefully in this lifetime. Probably with the same offer he made at the beginning but now including another $12,000 in lawyer’s fees. Oh well.
Tess went in for an expected 30-minute simple port removal procedure and came out 2-1/2 hours later. I don’t know the details...just that the anesthesia wore off several times, she threw up, yelled, cried and finally fainted. Then she escaped and I’m sure her surgeon went home and had a good stiff drink. The surgeon did tell her that she had been doing these since the 90’s and had never encountered one that difficult.
This was a week after going to Cleveland Clinic main campus for all the presurgery workups, including MRI, blood tests, forms and finally a visit again with Dr. Crowe. Again we sent her on her own thinking this was a simple procedure. But, the MRI showed something in the right breast, so sonograms were ordered and a lot of waiting ensued. They finally concluded that it was just some fibrous tissue and there was no need for alarm or for an early surgery...that’s after Tess went through all the heart stopping panic of thinking Good Grief, is it in the other side now? When all was settled and she had her visit with Dr. Crowe, he commented, “Well, I think this is a no brainer. Let’s get that tissue out of you.” Agreed.
She saw the plastic surgeon on the 19th. This is Dr. Stephen Barnard. Our third man. Remember the first was Shiny Teeth, the second wonderful Dr. Levy and now we have Dr. Barnard. Dr. Levy does not work on main campus, so this is the man recommended to her by Dr. Crowe. Tess said he was very professional and very good. Unlike Shiny Teeth, he had photographs of his work, a lot of knowledge and answers. This is what he does every day and at one of the best hospitals in the world, so we trust she is in the best hands possible. They will send the breast tissue to the lab during the operations and if any cells are abnormal, they will test lymph nodes also.
We do not have any dates yet for all these surgeries and procedures. We do know that the whole process is about 8 months. So we are looking at 2008 as our mop-up year. The worst is now behind us and we just have the finishing up to do. Thank the Lord.
Neither went as hoped. Which was partly why both kids wanted to come home with their kids for a normal old fashioned Thanksgiving and was why mother had a hellava time with the Thanksgiving prayer, rambling all over the place and getting all sloppy and emotional.
TJ’s ruling will come down sometime, hopefully in this lifetime. Probably with the same offer he made at the beginning but now including another $12,000 in lawyer’s fees. Oh well.
Tess went in for an expected 30-minute simple port removal procedure and came out 2-1/2 hours later. I don’t know the details...just that the anesthesia wore off several times, she threw up, yelled, cried and finally fainted. Then she escaped and I’m sure her surgeon went home and had a good stiff drink. The surgeon did tell her that she had been doing these since the 90’s and had never encountered one that difficult.
This was a week after going to Cleveland Clinic main campus for all the presurgery workups, including MRI, blood tests, forms and finally a visit again with Dr. Crowe. Again we sent her on her own thinking this was a simple procedure. But, the MRI showed something in the right breast, so sonograms were ordered and a lot of waiting ensued. They finally concluded that it was just some fibrous tissue and there was no need for alarm or for an early surgery...that’s after Tess went through all the heart stopping panic of thinking Good Grief, is it in the other side now? When all was settled and she had her visit with Dr. Crowe, he commented, “Well, I think this is a no brainer. Let’s get that tissue out of you.” Agreed.
She saw the plastic surgeon on the 19th. This is Dr. Stephen Barnard. Our third man. Remember the first was Shiny Teeth, the second wonderful Dr. Levy and now we have Dr. Barnard. Dr. Levy does not work on main campus, so this is the man recommended to her by Dr. Crowe. Tess said he was very professional and very good. Unlike Shiny Teeth, he had photographs of his work, a lot of knowledge and answers. This is what he does every day and at one of the best hospitals in the world, so we trust she is in the best hands possible. They will send the breast tissue to the lab during the operations and if any cells are abnormal, they will test lymph nodes also.
We do not have any dates yet for all these surgeries and procedures. We do know that the whole process is about 8 months. So we are looking at 2008 as our mop-up year. The worst is now behind us and we just have the finishing up to do. Thank the Lord.
Nordie's at Noon
The kids were here for Thanksgiving. A last minute affair. The only fresh turkey left was an 18-pounder...enough for 30 people and we were five! Seven with the two toddlers, but they didn’t eat much turkey. There’s a lot of turkey in all our freezers now and Tom and I have made two turkey soups.
Tess’s friends all read “Nordie’s at Noon” at the beginning of this. I read it a few months ago. Tess pulled it off my bookshelf. “Should I read this?”
Four young women, ages 24 to 33, who were diagnosed with breast cancer met every Tuesday at Nordie’s for lunch. They wrote their story with no holds barred. Two made it and two did not. It is not an easy book to read, especially if you are living the story.
This morning she called, “Why did you let me read that book?”
“I didn’t sleep all night. Is it going to come back?”
Life’s journeys. The fears we face, the fears we are forced to face. Is it better to leave them unnamed and unacknowledged or to bring them out and stare them down? I belong to the “stare them down camp” myself but that might not be the case for everyone. I remembered I drew a series of pictures when I was at the same stage Tess is at now. “Will it come back?”
The reality is that with breast cancer, it can come back; it does come back, years and years later. You are never free of that possibility. But what about the women who have never had it in the first place? They also face the same...worse, actually...odds as we survivors, but not having been there in the first place, they don’t know in their gut that it really really could be them. It’s like being killed in an auto accident. It only happens to the other person. After you’ve been there. You’ve been in the accident, you’ve had breast cancer, and it is no longer your reality that it only happens to the “other” person. You know, in your gut you know, it might be you. That is a different fear to face down. That is a different place. And you can only get back to peace, free from anxiety and worry, when you acknowledge the fear and replace it with your ability to handle whatever comes when it comes, if it comes, who cares if it comes. Then you are are free as you never were even before.
Tess’s friends all read “Nordie’s at Noon” at the beginning of this. I read it a few months ago. Tess pulled it off my bookshelf. “Should I read this?”
Four young women, ages 24 to 33, who were diagnosed with breast cancer met every Tuesday at Nordie’s for lunch. They wrote their story with no holds barred. Two made it and two did not. It is not an easy book to read, especially if you are living the story.
This morning she called, “Why did you let me read that book?”
“I didn’t sleep all night. Is it going to come back?”
Life’s journeys. The fears we face, the fears we are forced to face. Is it better to leave them unnamed and unacknowledged or to bring them out and stare them down? I belong to the “stare them down camp” myself but that might not be the case for everyone. I remembered I drew a series of pictures when I was at the same stage Tess is at now. “Will it come back?”
The reality is that with breast cancer, it can come back; it does come back, years and years later. You are never free of that possibility. But what about the women who have never had it in the first place? They also face the same...worse, actually...odds as we survivors, but not having been there in the first place, they don’t know in their gut that it really really could be them. It’s like being killed in an auto accident. It only happens to the other person. After you’ve been there. You’ve been in the accident, you’ve had breast cancer, and it is no longer your reality that it only happens to the “other” person. You know, in your gut you know, it might be you. That is a different fear to face down. That is a different place. And you can only get back to peace, free from anxiety and worry, when you acknowledge the fear and replace it with your ability to handle whatever comes when it comes, if it comes, who cares if it comes. Then you are are free as you never were even before.
Friday, November 2, 2007
Surgeons and Egos
Back in the early eighties, the dark ages of breast cancer research and information, I had yet another cyst and this one could not be aspirated, so I was referred to a general surgeon. I had a LOT of questions. The normal procedure then was to do the biopsy under full anesthesia, rush the sample to the lab and if suspicious, do a radical mastectomy which meant taking practically everything except the heart and lungs leaving a crater where there had been a good-sized hill.
Well, no. I wanted to make this a two step (now standard procedure) and discuss my options if the biopsy was positive. No radical mastectomy until I had a chance to review it myself. And I wanted to see pictures post-op radical mastectomy. And I wanted to be awake and have him just use a local anesthesia for the biopsy. Both ideas affronted my surgeon. At first he used the fatherly approach....”it would be better for you...” Then he got downright angry when I said I would refuse to sign the consent form for the mastectomy. So we parted ways.
I approached the American Cancer Society. Today, if you have a history of cancer in the family, or if you are facing the possibility of mastectomy, the information is overwhelming. In my day, they guarded it, what there was of it, as if it were the Fort Knox gold. The American Cancer Society REFUSED to talk to me UNTIL I had a positive diagnosis! Awareness and Preparedness???? I think not. “It’s better not to know,” they patronizingly cooed at me. “Come back if you really have cancer.”
It’s almost 30 years later and my blood still rises, remembering.
And Tess is discovering the Surgeon’s Ego is still aware and awake.
Her Dr. B. has refused to do the prophylactic mastectomy, the removal of the other breast for safety’s sake. He is also the one who really questioned her decision not to use his plastic surgeon recommendation. You know, the one with the teeth and expensive shoes. Instead she chose Dr. Levy who showed real interest in the patient. This is also, looking back, the same doctor who had a false negative on the biopsy, a false positive on lymph node involvement, said she could not have more children, left unclear margins and initially found the tumor to be estrogen positive. (Maybe it is a GOOD thing that he bowed out of her life.) Disconcertingly, he did it by not returning her phone calls, nor through his right hand contact Mary, but instead had a scheduler tell her that she might be better off going to Dr. Crowe. End of story.
Tess was shocked, disbelieving, hurt and then furious at this dismissal. “If he wants that boob so bad, I’ll wrap it up and send it to him! He can have it if he’s so attached to keeping it!”
Dr. Crowe and the geneticist at Cleveland Clinic were both supportive of Tess’s decision. Since Dr. Crowe is the head surgeon in the Cancer part, I guess this too is a GOOD thing. Also (since Dr. Levy does not work on main campus where Dr. Crowe is) the plastic surgeon (#3!) only does breast surgery. That, too, is probably a GOOD thing!
(Maybe a little GODincidences here. Keep those prayers going!)
So those dates are being scheduled......for the second mastectomy and implants on both sides. November 8th she sees Dr. Crowe again and on November 29th she meets with Plastic Surgeon #3.
OK......a lot has changed over the course of this journey. Now they CAN have children and depending upon who you talk to, the advice has been to wait anywhere from 6 months after chemo to 5 years. Tess says “I’ll just follow my gut.” And even at the Cleveland Clinic you have to be aware and prepared and proactive.
Well, no. I wanted to make this a two step (now standard procedure) and discuss my options if the biopsy was positive. No radical mastectomy until I had a chance to review it myself. And I wanted to see pictures post-op radical mastectomy. And I wanted to be awake and have him just use a local anesthesia for the biopsy. Both ideas affronted my surgeon. At first he used the fatherly approach....”it would be better for you...” Then he got downright angry when I said I would refuse to sign the consent form for the mastectomy. So we parted ways.
I approached the American Cancer Society. Today, if you have a history of cancer in the family, or if you are facing the possibility of mastectomy, the information is overwhelming. In my day, they guarded it, what there was of it, as if it were the Fort Knox gold. The American Cancer Society REFUSED to talk to me UNTIL I had a positive diagnosis! Awareness and Preparedness???? I think not. “It’s better not to know,” they patronizingly cooed at me. “Come back if you really have cancer.”
It’s almost 30 years later and my blood still rises, remembering.
And Tess is discovering the Surgeon’s Ego is still aware and awake.
Her Dr. B. has refused to do the prophylactic mastectomy, the removal of the other breast for safety’s sake. He is also the one who really questioned her decision not to use his plastic surgeon recommendation. You know, the one with the teeth and expensive shoes. Instead she chose Dr. Levy who showed real interest in the patient. This is also, looking back, the same doctor who had a false negative on the biopsy, a false positive on lymph node involvement, said she could not have more children, left unclear margins and initially found the tumor to be estrogen positive. (Maybe it is a GOOD thing that he bowed out of her life.) Disconcertingly, he did it by not returning her phone calls, nor through his right hand contact Mary, but instead had a scheduler tell her that she might be better off going to Dr. Crowe. End of story.
Tess was shocked, disbelieving, hurt and then furious at this dismissal. “If he wants that boob so bad, I’ll wrap it up and send it to him! He can have it if he’s so attached to keeping it!”
Dr. Crowe and the geneticist at Cleveland Clinic were both supportive of Tess’s decision. Since Dr. Crowe is the head surgeon in the Cancer part, I guess this too is a GOOD thing. Also (since Dr. Levy does not work on main campus where Dr. Crowe is) the plastic surgeon (#3!) only does breast surgery. That, too, is probably a GOOD thing!
(Maybe a little GODincidences here. Keep those prayers going!)
So those dates are being scheduled......for the second mastectomy and implants on both sides. November 8th she sees Dr. Crowe again and on November 29th she meets with Plastic Surgeon #3.
OK......a lot has changed over the course of this journey. Now they CAN have children and depending upon who you talk to, the advice has been to wait anywhere from 6 months after chemo to 5 years. Tess says “I’ll just follow my gut.” And even at the Cleveland Clinic you have to be aware and prepared and proactive.
Sunday, October 14, 2007
Then and Now
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.
"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.
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!
Thursday, August 9, 2007
Round Three Coming Up
So much to report.
July 24th was when I last posted. OK.
One Tit, No Hair, Fat on Steroids
This is where it’s at. Our attitudes are great because you choose happiness and life. We are fortunate to cross threshold after threshold, climb step after step, put one foot in front of the other and just keep going. Things you thought you couldn’t handle or deal with, well, you do. And just as you grow into taking care of more than one kid, you grow into this and the abnormal becomes normal and you know what? The laughter and the love doesn’t get checked at the door. They go right along with you and in the midst of this there is so much joy.
The moments hit. When the 8-year-old encountered at the drug store looks at Tess’s bandana-covered head and asks, “Do you have leukemia? Are you going to die?”
Tess bursts into tears (well, she was there for sleeping pills because the steroids kept her awake so coping skills were trashed) and then exclaims, “No! I’m going to live! And live a long time!” The 8-year-old’s mother came rushing up apologizing and hugging Tess.
When she offered to give some of her pregnancy clothes to a friend and then lost it as she was pulling them out and remembered that she and Jamie had hoped that their second child would be on the way this summer.
When she realized that their fifth wedding anniversary was going to be spent at the Barcolounger Bar getting chemo.
There’s no denying it is a tough road and a life-changing event that goes all the way down to your toes and shakes up your life, your life, not the person next door, your life, the one you had that was planned and going along the yellow brick road with the house, the two kids, the good job. That is what got shook up. Your friends are still on that road. What happened to yours? When did the yellow brick road turn into the sinking tar pit that pulled you in so inexorably, unrelentingly, absolutely? How can you possible be here?
You are.
Team Tess 2
Tess has fantastic support. I told you about the 3-Day Race in Chicago. There is also a Konen Race for the Cure in Cleveland in September. These participants are Tess’s high school buddies. A group that began in Day Care, grew with middle school and added their last numbers in high school. They bought her a freezer to hold all the casseroles that were anticipated and received. They bought Jamie a punching bag to pound when his emotions ran high. They sent cards, hats, scarves, flowers, cookies, and pajamas. When Tess protested that it was too much, they pleaded Retail Therapy was their way of coping. Tess has been a hub in this group of young women, and her illness has brought out new leaders, organizers, creators and connections. Wounds are always opening and closing, aren’t they? Dear God, it is such a circle.
Their website is
http://race.komenneohio.org/site/TR/Events/General?pg=team&fr_id=1020&team_id=8300
and if you are interested in helping them out, the directions are easy to follow.
Reconstruction
I told you about our last plastic surgeon and my problem getting past his shoes and blinding white smile. He was also pretty slow with the portfolio. In fact, we never did see it.
So, last Monday we went to see a second referral. Dr. Levy’s office called almost a month before the appointment to interview Tess and get all her records. This time, rather than spending most of our time with a young nurse, Dr. Levy himself gave us a full hour. His portfolio was in his hands.
He discussed all the options in depth. Tess leans toward a tram flap. That is taking the up and down abdominal muscle, pulling it up backwards and using it as the base and the main blood supply to build a new breast using skin from a tummy tuck procedure and fat from the belly. Yes, it is as bad as it sounds! That is what I had and Tess remembers! But the good things about it are that it is all you and if you gain or lose weight, so does the breast and it tends to feel and sag at the same rate as the other breast. Of course, you do have a bunch of numbness and weird twinges which, frankly, after a while you can’t remember what the other you was, so, so what?
There is far more to this and the other options than you want to read here, but one of the main issues at their stage of life is a future pregnancy. It is not entirely out of the question, but doing the tram flap with its’ tight tummy skin and missing muscle and pregnancy sounded to me a bit dicey.
What was so impressive about Dr. Levy was that he got very interested in the possibility. He called her at 8:00 the next morning to say he had been researching the subject and found a study of 8 women who had successfully gotten pregnant and delivered healthy babies after chemo and tram flap reconstructions. Hurray! A man passionate enough about his work to explore and learn and help. She’s in good hands.
Round Three
Tom is cooking for the freezer and I am packing the suitcase again. She gets the chemo tomorrow but Jamie will be with her, and Cindy, Jamie's mother, is watching Gavin. I'll arrive Saturday with the nausea, the bone aches, the headache and begin pushing the Benefibre, water, and drugs.
We'll be leaning on those everlasting arms and your prayers.
Thanks a bunch.
July 24th was when I last posted. OK.
One Tit, No Hair, Fat on Steroids
This is where it’s at. Our attitudes are great because you choose happiness and life. We are fortunate to cross threshold after threshold, climb step after step, put one foot in front of the other and just keep going. Things you thought you couldn’t handle or deal with, well, you do. And just as you grow into taking care of more than one kid, you grow into this and the abnormal becomes normal and you know what? The laughter and the love doesn’t get checked at the door. They go right along with you and in the midst of this there is so much joy.
The moments hit. When the 8-year-old encountered at the drug store looks at Tess’s bandana-covered head and asks, “Do you have leukemia? Are you going to die?”
Tess bursts into tears (well, she was there for sleeping pills because the steroids kept her awake so coping skills were trashed) and then exclaims, “No! I’m going to live! And live a long time!” The 8-year-old’s mother came rushing up apologizing and hugging Tess.
When she offered to give some of her pregnancy clothes to a friend and then lost it as she was pulling them out and remembered that she and Jamie had hoped that their second child would be on the way this summer.
When she realized that their fifth wedding anniversary was going to be spent at the Barcolounger Bar getting chemo.
There’s no denying it is a tough road and a life-changing event that goes all the way down to your toes and shakes up your life, your life, not the person next door, your life, the one you had that was planned and going along the yellow brick road with the house, the two kids, the good job. That is what got shook up. Your friends are still on that road. What happened to yours? When did the yellow brick road turn into the sinking tar pit that pulled you in so inexorably, unrelentingly, absolutely? How can you possible be here?
You are.
Team Tess 2
Tess has fantastic support. I told you about the 3-Day Race in Chicago. There is also a Konen Race for the Cure in Cleveland in September. These participants are Tess’s high school buddies. A group that began in Day Care, grew with middle school and added their last numbers in high school. They bought her a freezer to hold all the casseroles that were anticipated and received. They bought Jamie a punching bag to pound when his emotions ran high. They sent cards, hats, scarves, flowers, cookies, and pajamas. When Tess protested that it was too much, they pleaded Retail Therapy was their way of coping. Tess has been a hub in this group of young women, and her illness has brought out new leaders, organizers, creators and connections. Wounds are always opening and closing, aren’t they? Dear God, it is such a circle.
Their website is
http://race.komenneohio.org/site/TR/Events/General?pg=team&fr_id=1020&team_id=8300
and if you are interested in helping them out, the directions are easy to follow.
Reconstruction
I told you about our last plastic surgeon and my problem getting past his shoes and blinding white smile. He was also pretty slow with the portfolio. In fact, we never did see it.
So, last Monday we went to see a second referral. Dr. Levy’s office called almost a month before the appointment to interview Tess and get all her records. This time, rather than spending most of our time with a young nurse, Dr. Levy himself gave us a full hour. His portfolio was in his hands.
He discussed all the options in depth. Tess leans toward a tram flap. That is taking the up and down abdominal muscle, pulling it up backwards and using it as the base and the main blood supply to build a new breast using skin from a tummy tuck procedure and fat from the belly. Yes, it is as bad as it sounds! That is what I had and Tess remembers! But the good things about it are that it is all you and if you gain or lose weight, so does the breast and it tends to feel and sag at the same rate as the other breast. Of course, you do have a bunch of numbness and weird twinges which, frankly, after a while you can’t remember what the other you was, so, so what?
There is far more to this and the other options than you want to read here, but one of the main issues at their stage of life is a future pregnancy. It is not entirely out of the question, but doing the tram flap with its’ tight tummy skin and missing muscle and pregnancy sounded to me a bit dicey.
What was so impressive about Dr. Levy was that he got very interested in the possibility. He called her at 8:00 the next morning to say he had been researching the subject and found a study of 8 women who had successfully gotten pregnant and delivered healthy babies after chemo and tram flap reconstructions. Hurray! A man passionate enough about his work to explore and learn and help. She’s in good hands.
Round Three
Tom is cooking for the freezer and I am packing the suitcase again. She gets the chemo tomorrow but Jamie will be with her, and Cindy, Jamie's mother, is watching Gavin. I'll arrive Saturday with the nausea, the bone aches, the headache and begin pushing the Benefibre, water, and drugs.
We'll be leaning on those everlasting arms and your prayers.
Thanks a bunch.
Tuesday, July 24, 2007
Round 2 Done
I have driven Tess bananas today staring at her cute head and face. What a beautiful woman she is. Her scalp was cold so she used a scarf most of the day and it actually is sort of sore with a bit of cradle cap. That got us to wondering if babies heads hurt that much when they have cradle cap. She tried to sleep this morning but could not. Bones are aching and she feels as bloated as a beached whale, but no nausea. Since I was here she took advantage of her baby sitter to get her wig styled. It gives her a cute Kristie Alley look. Afterwards she met Jamie for lunch at Panera and a lady there told her what great hair she had!
Gavin and I visited the library and got some books on tractors which I then had to read to him at least 583 times. I remember sitting on my grandma’s lap being read to and we were just about the same ages as Gavin and me.
I’m off for home tomorrow morning. Round Two is history.
Gavin and I visited the library and got some books on tractors which I then had to read to him at least 583 times. I remember sitting on my grandma’s lap being read to and we were just about the same ages as Gavin and me.
I’m off for home tomorrow morning. Round Two is history.
Monday, July 23, 2007
Bald Heads
The day started a little slow and low. I had a hard time waking up, Tess was feeling crappy and Gavin wanted his breakfast. Tess went back to bed with the cats, Gavin and I were playing, doing laundry, cleaning up, and Hair was everywhere. On Gavin’s cookies, stuck in the clothes coming out of the dryer, every floor surface, every chair, every every!
In a bit of a funk, Tess left to get a cancer massage to work out the fluids from the steriods, the water, the chemicals. Gavin and I went to the playground. When she got back, she was in a much better mood and ready to get rid of the hair. So was I.
Jamie got home and set up shop. To show Tess what to expect, he shaved his own head! Right cute he looked too. Gavin is clapping his hands and I have the broom in hand. Then we start on Tess and take her down. She looked so darn cute! “Ball!” Gavin exclaimed looking at the back of her head. And she does have the perfect shaped head. And she had such gorgeous hair that you didn’t see her face so clearly. She has a perfect oval face with huge green eyes and rosebud lips. It is not fair that she should look so great bald.
Now they are threatening to shave my head in my sleep. I have neither the perfectly shaped domes those two sport nor the perfectly oval face, so my door is LOCKED!!
In a bit of a funk, Tess left to get a cancer massage to work out the fluids from the steriods, the water, the chemicals. Gavin and I went to the playground. When she got back, she was in a much better mood and ready to get rid of the hair. So was I.
Jamie got home and set up shop. To show Tess what to expect, he shaved his own head! Right cute he looked too. Gavin is clapping his hands and I have the broom in hand. Then we start on Tess and take her down. She looked so darn cute! “Ball!” Gavin exclaimed looking at the back of her head. And she does have the perfect shaped head. And she had such gorgeous hair that you didn’t see her face so clearly. She has a perfect oval face with huge green eyes and rosebud lips. It is not fair that she should look so great bald.
Now they are threatening to shave my head in my sleep. I have neither the perfectly shaped domes those two sport nor the perfectly oval face, so my door is LOCKED!!
Saturday, July 21, 2007
Second Round
I remember living in Brazil the first time and thinking how scary it was to live with violence a step away, the murderous traffic and scorpions in the woodpile. Then the tornado in Xenia, Ohio, happened and my maids were horrified at how quickly a small town was practically wiped out.
“How can you bear to live in such a place?” they asked. “Why you could get killed any minute!”
This, just after the kids and I had passed a dead body on the street coming home from church, not a block away.
It is easier to deal with the fears we know. And so it is with chemo. Knowing what to expect and dealing with that is easier even as it gets a little harder. As Tess said, I’ll just plan to have the flu over the weekend! And that being decided, that is exactly where she is........having the flu. No drama, no fuss. That’s not to say that Jamie, Gavin and I weren’t totally flying straight when she got home. Jamie was cleaning cars down to the undercoat, Gavin was throwing fits, and I did have one quick burst of tears over nothing, but all that quickly passed and we were a functioning family by nightfall.
Only two more to go!!!
Details: Blood counts low, and some other numbers both high and low. Counteractions by the oncologist, good nutrition and good old steroids handling it all as expected. Hair still looks good but it is coming out slowly but surely. Jamie cut it to ear length and then Alison layered it. Looks cute.
“How can you bear to live in such a place?” they asked. “Why you could get killed any minute!”
This, just after the kids and I had passed a dead body on the street coming home from church, not a block away.
It is easier to deal with the fears we know. And so it is with chemo. Knowing what to expect and dealing with that is easier even as it gets a little harder. As Tess said, I’ll just plan to have the flu over the weekend! And that being decided, that is exactly where she is........having the flu. No drama, no fuss. That’s not to say that Jamie, Gavin and I weren’t totally flying straight when she got home. Jamie was cleaning cars down to the undercoat, Gavin was throwing fits, and I did have one quick burst of tears over nothing, but all that quickly passed and we were a functioning family by nightfall.
Only two more to go!!!
Details: Blood counts low, and some other numbers both high and low. Counteractions by the oncologist, good nutrition and good old steroids handling it all as expected. Hair still looks good but it is coming out slowly but surely. Jamie cut it to ear length and then Alison layered it. Looks cute.
Friday, July 20, 2007
Support 1
It's time to talk about some of the fantastic support Tess is getting. We'll start with
Meet Team Tess!
This is actually Team Tess II because the name has already been used by her High School Rallying Crowd, so we will refer to them as Team Tess I and talk about their efforts later.
This Team Tess is from her Aunt Robin's church. Aunt Robin is a Lutheran Pastor, married to my brother Bob, and this is what some young beauties at her church are doing:
"Bob's 33-year old niece Tess Reed is in her second round of chemo for breast cancer. The prognosis is good and we are all hopeful that this time next year it will all be past tense. Her husband is Jamie and 18-month old son is Gavin, whose picture is attached, sayin howdy!
The Chicago Breast Cancer 3-Day will begin with Opening Ceremonies at Schiller Woods in Schiller Park on August 10th at 6:30 am and conclude with Closing Ceremonies at Lincoln Park at Montrose Harbor, Grove 16 in Chicago on August 12th at 5:00 pm. the course covers 60 miles in 3 days of walking. Bob and I did this walk from Baltimore to WDC and Beth and I have done a shorter marathon version in Chicago. We hope some of the funds raised in these earlier walks helped improve the treatment Tess is getting now.
But this group of lovelies in the attached photo taken Sunday heard about Tess at church and asked to walk to honor her and in confidence for her full recovery. They are wearing the Pink Ladies shirts with Tess' name on the back. (See picture marked "backside.") On August 12 we will include them and Tess in special prayers in worship.
If you would like to support their efforts, go to www.the3day.org, click Donate, click Chicago, enter the name of the girl.
(To get the name of a girl, email me and I will send you one of the "names. Marlyn)
Meet Team Tess!
This is actually Team Tess II because the name has already been used by her High School Rallying Crowd, so we will refer to them as Team Tess I and talk about their efforts later.
This Team Tess is from her Aunt Robin's church. Aunt Robin is a Lutheran Pastor, married to my brother Bob, and this is what some young beauties at her church are doing:
"Bob's 33-year old niece Tess Reed is in her second round of chemo for breast cancer. The prognosis is good and we are all hopeful that this time next year it will all be past tense. Her husband is Jamie and 18-month old son is Gavin, whose picture is attached, sayin howdy!
The Chicago Breast Cancer 3-Day will begin with Opening Ceremonies at Schiller Woods in Schiller Park on August 10th at 6:30 am and conclude with Closing Ceremonies at Lincoln Park at Montrose Harbor, Grove 16 in Chicago on August 12th at 5:00 pm. the course covers 60 miles in 3 days of walking. Bob and I did this walk from Baltimore to WDC and Beth and I have done a shorter marathon version in Chicago. We hope some of the funds raised in these earlier walks helped improve the treatment Tess is getting now.
But this group of lovelies in the attached photo taken Sunday heard about Tess at church and asked to walk to honor her and in confidence for her full recovery. They are wearing the Pink Ladies shirts with Tess' name on the back. (See picture marked "backside.") On August 12 we will include them and Tess in special prayers in worship.
If you would like to support their efforts, go to www.the3day.org, click Donate, click Chicago, enter the name of the girl.
(To get the name of a girl, email me and I will send you one of the "names. Marlyn)
Tuesday, July 17, 2007
Wig Shopping (R-Rated)
Hair is beginning to go, twenty strands here, twenty strands there. Mom wants her to get a French Cap cut and keep that gorgeous hair for a fall when it regrows and she wants a longer look. Daughter wants to hang onto it thru Thursday night when she has a dinner get-together with Medina friends. Chemo is Friday and she won’t want to go to the hair dresser’s on Saturday so.............I’m losing that game.
With baldness on the western front, she and Jamie visited the wig shop. He was a good choice. When the white cap was put on her head to hold the wig securely, they both burst out laughing calling her Penis Head. Then they got a little wild with the new look. Jamie could be both honest and adventurous with the hair and she wound up with a Jennifer Aniston look: Honey blond, darker roots, straight, layer cut. Long enough that she tells me she could set up business on the street, so she is scheduled to get it cut to a length more fitting for Gavin’s mother.
She tried to be encouraging to a mother and her daughters who were wig shopping for the mother. All was gloom and doom on their faces. Chemo had not started yet and they seemed to be in the first shock phases. I’m sure Tess’s attitude seemed bizarre, but hopefully helpful?
Visiting an Oberlin friend, she slipped into the bathroom and put it on. “Oh, migod,” exclaimed Margaret, “If I didn’t know it was you and a wig, I’d be asking what hair products you use.”
Now she has to make out an insurance claim for “cranial prosthesis.”
With baldness on the western front, she and Jamie visited the wig shop. He was a good choice. When the white cap was put on her head to hold the wig securely, they both burst out laughing calling her Penis Head. Then they got a little wild with the new look. Jamie could be both honest and adventurous with the hair and she wound up with a Jennifer Aniston look: Honey blond, darker roots, straight, layer cut. Long enough that she tells me she could set up business on the street, so she is scheduled to get it cut to a length more fitting for Gavin’s mother.
She tried to be encouraging to a mother and her daughters who were wig shopping for the mother. All was gloom and doom on their faces. Chemo had not started yet and they seemed to be in the first shock phases. I’m sure Tess’s attitude seemed bizarre, but hopefully helpful?
Visiting an Oberlin friend, she slipped into the bathroom and put it on. “Oh, migod,” exclaimed Margaret, “If I didn’t know it was you and a wig, I’d be asking what hair products you use.”
Now she has to make out an insurance claim for “cranial prosthesis.”
The Gift
I use angels like Post-it Notes. And I’m not stingy with them. If I’m assigning them to a teenage driver, I ask for four...one on each fender and maybe another on top if I’m really uneasy. House? Hundreds.
For years and years I have relied on them but always for protection. I didn’t think of them as specialized; or I didn’t conceive of the idea that specialized help might be, well, so helpful, let alone available.
Then I sat for two aloof cats in a very calm, neat, even sparse house. A large bookshelf was a veritable library on angels. Since chores took five minutes and cats were neither playful nor lap-interested, our policy of staying at least a half an hour meant that I should just “be” for a few minutes. So I sat down with a book on Getting to Know and Communicate with your Angels.
It was a black day. There’s such a deep sadness about watching your beautiful vivacious daughter face the indignities and mutilations of breast cancer. I’m a person of too much faith to worry or regret. Life 101 is a difficult course. But as a mother and especially since my thirties was a glamorous, fun, exciting time, I can’t believe my daughter must rise to such challenges so early.
So whipping through the How To’s of Angelic E-mail, I asked for two specialists. I wanted an Angel of Time and Priorities. Some celestial being who would make time abundant for me. Not just provide the time, but to help me utilize the time. When I’m down I can stare at the Foxy Pet Sitting Schedule for 5 minutes before “coming to.” The clock will magically go from 8:30 to 11:30 and the desk would still be cluttered, the laundry stacked, the flowers unwatered, the breakfast half eaten and six coffee cups scattered around the house. I really needed a Time Specialist.
Then my second request was for Joy. Send me a Celestial Specialist who was a bit on the frivolous side who would help me find happiness wherever I looked. In a dog’s puzzled face, a thirsty flower, an embedded grease spot eradicated! Close at hand, I wanted good old fashioned Joy.
Well, dear audience, the results were spectacular. Angelic Time Manager flew in and shook me like a puppet on strings. Clutter flew to their correct homes, the carpets were vacuumed, the dogs brushed, the phone calls made.......why hadn’t I used this service before? Do you really have to be desperate to qualify? Sort of a heavenly version of getting food stamps?
And Angelic Joy! She appeared like bubbles in wine. My voice lightened at least two keys. My face cracked and smiled. My chest opened and I could breathe again. And then......the best thing yet.....I got a new toy! A totally unexpected, un-asked-for, unknowable toy. By unknowable I mean I didn’t know I wanted it, hadn’t a clue until it appeared. It went down like this:
I had been watching the Thompson dog for a week. Abby is a 13-year-old lab and the whole family was on a mission trip and didn’t want to kennel her anymore, so I said she could come and stay with us. In the course of a week, she got Aunt Marlyn’s spa and vet treatment because I couldn’t stand to see her ears itch, her nails click, her coat go unbrushed, a nasty lump in her mouth ignored, etc. etc.
Jan and the Twins came to pick her up and slowly notice all the changes....this is a very loved dog. I’m trying to get the girls to help me put some music on an MP3 player that is part of a CD player. Their reaction is that my equipment and technology is badly outdated and clumsy. Jan suddenly says, I Know What She Needs! and before I know what is happening, I am being propelled out of the house, into their van by three very forceful females.......no purse, no Kleenex, no prior potty break. Off to Wal-Mart we speed where they select a wonderful MP3 with pictures and 30 G of memory and ear buds. Jo puts it on my computer and demands my music. I learn to “rip” music.....doesn’t that sound deliciously illegal or fattening? I learn about music stores on line.......that has my Jean Redpath and Bagpipes! And to Sync! Whoa!
And then to make a complete fool of myself next day walking dogs and weaving to the music in my ear buds! Time Manager really had to be on his/her toes because Joy kept leading me to “Rip” more music and learn about getting e-books from the library on line. As Gavin says, WOW.
The moral of this story is........forget about asking for courage, strength, and all the heavy virtues. We’ve been shopping in the wrong departments.......God has a TOY STORE!! Go for Cheerful Hearts!
For years and years I have relied on them but always for protection. I didn’t think of them as specialized; or I didn’t conceive of the idea that specialized help might be, well, so helpful, let alone available.
Then I sat for two aloof cats in a very calm, neat, even sparse house. A large bookshelf was a veritable library on angels. Since chores took five minutes and cats were neither playful nor lap-interested, our policy of staying at least a half an hour meant that I should just “be” for a few minutes. So I sat down with a book on Getting to Know and Communicate with your Angels.
It was a black day. There’s such a deep sadness about watching your beautiful vivacious daughter face the indignities and mutilations of breast cancer. I’m a person of too much faith to worry or regret. Life 101 is a difficult course. But as a mother and especially since my thirties was a glamorous, fun, exciting time, I can’t believe my daughter must rise to such challenges so early.
So whipping through the How To’s of Angelic E-mail, I asked for two specialists. I wanted an Angel of Time and Priorities. Some celestial being who would make time abundant for me. Not just provide the time, but to help me utilize the time. When I’m down I can stare at the Foxy Pet Sitting Schedule for 5 minutes before “coming to.” The clock will magically go from 8:30 to 11:30 and the desk would still be cluttered, the laundry stacked, the flowers unwatered, the breakfast half eaten and six coffee cups scattered around the house. I really needed a Time Specialist.
Then my second request was for Joy. Send me a Celestial Specialist who was a bit on the frivolous side who would help me find happiness wherever I looked. In a dog’s puzzled face, a thirsty flower, an embedded grease spot eradicated! Close at hand, I wanted good old fashioned Joy.
Well, dear audience, the results were spectacular. Angelic Time Manager flew in and shook me like a puppet on strings. Clutter flew to their correct homes, the carpets were vacuumed, the dogs brushed, the phone calls made.......why hadn’t I used this service before? Do you really have to be desperate to qualify? Sort of a heavenly version of getting food stamps?
And Angelic Joy! She appeared like bubbles in wine. My voice lightened at least two keys. My face cracked and smiled. My chest opened and I could breathe again. And then......the best thing yet.....I got a new toy! A totally unexpected, un-asked-for, unknowable toy. By unknowable I mean I didn’t know I wanted it, hadn’t a clue until it appeared. It went down like this:
I had been watching the Thompson dog for a week. Abby is a 13-year-old lab and the whole family was on a mission trip and didn’t want to kennel her anymore, so I said she could come and stay with us. In the course of a week, she got Aunt Marlyn’s spa and vet treatment because I couldn’t stand to see her ears itch, her nails click, her coat go unbrushed, a nasty lump in her mouth ignored, etc. etc.
Jan and the Twins came to pick her up and slowly notice all the changes....this is a very loved dog. I’m trying to get the girls to help me put some music on an MP3 player that is part of a CD player. Their reaction is that my equipment and technology is badly outdated and clumsy. Jan suddenly says, I Know What She Needs! and before I know what is happening, I am being propelled out of the house, into their van by three very forceful females.......no purse, no Kleenex, no prior potty break. Off to Wal-Mart we speed where they select a wonderful MP3 with pictures and 30 G of memory and ear buds. Jo puts it on my computer and demands my music. I learn to “rip” music.....doesn’t that sound deliciously illegal or fattening? I learn about music stores on line.......that has my Jean Redpath and Bagpipes! And to Sync! Whoa!
And then to make a complete fool of myself next day walking dogs and weaving to the music in my ear buds! Time Manager really had to be on his/her toes because Joy kept leading me to “Rip” more music and learn about getting e-books from the library on line. As Gavin says, WOW.
The moral of this story is........forget about asking for courage, strength, and all the heavy virtues. We’ve been shopping in the wrong departments.......God has a TOY STORE!! Go for Cheerful Hearts!
Drought
I’m getting the “where are you?” emails and yes, it has been difficult enough that I didn’t have the energy to keep up the Blog.
Besides Tess and TJ, WonderWoman Wanda had to have a pacemaker put in two weeks ago and they didn’t do it right and last week she had to have it redone. Two surgeries in one week knocked down even Wanda.......who is in her eighties after all. But they got the second one in securely and she is rallying. Even Sister-in-Law Robin thought I needed a boost and sent me a black dog walking cap emblazoned with MOTHER SUPERIOR. I rather liked that title.
Updates forthcoming.
Besides Tess and TJ, WonderWoman Wanda had to have a pacemaker put in two weeks ago and they didn’t do it right and last week she had to have it redone. Two surgeries in one week knocked down even Wanda.......who is in her eighties after all. But they got the second one in securely and she is rallying. Even Sister-in-Law Robin thought I needed a boost and sent me a black dog walking cap emblazoned with MOTHER SUPERIOR. I rather liked that title.
Updates forthcoming.
Saturday, June 30, 2007
Chemo Round One
Well, getting it isn’t as bad as I expected. The Barcolounger Lounge is really set up very compassionately. They are in small cozy rectangles of 6 or 7 loungers each that encourage interaction among the patients and their companions. Each Lounger is equipped with a small TV with all the cable stations, there are really good snacks and drinks available, and the new people each got a lap quilt made by volunteers plus a fleece lap robe from a drug company. Those were needed. They keep it cold in those rooms. Lots of personnel around from the social service ladies to the nurses and aides. It was well staffed and we got more handouts and info than we really cared to know.
All ages. A young man of 22 was the youngest in our group. He has to come every week for Hodgkins disease but was sent home yesterday because his white blood cells were low. His father was very talkative about the adjustment the family was enduring. The oldest was in her eighties (if not nineties) who had her son and granddaughter with her but was too busy playing crosswords to give them or anyone else much mind. One lady had a feather headband that was just too crazy but it went with the rest of her outfit. “E-Bay Head to Toe,” she announced. Another who kept a bit aloof from the rest of us with designer shoes and purse and gold climbing up her arms...I think she was still in shock about being there.
Aunt Jan watched Gavin while we were six hours at the Cancer Center. We came home to cheerful flowers that perked us up. So much has come in from friends and family. Tess keeps her files of cards close at hand and reads and rereads them. They are so appreciated.
Tess was fine yesterday. Appetite good even with the metallic taste and went for a short walk. Today she has been down almost all day with flu-like symptoms. Very sleepy and poor appetite. She has been diligent about the fluids and food and we’ll walk tonight. All in all, pretty much what they told us to expect but tough on the kids who went from hale and hearty to boring and uncomfortable and unfun plain old sick.
Gavin and I went to the park and got our workout. Jamie got the yard watered and did a real workout. Quiet day.
All ages. A young man of 22 was the youngest in our group. He has to come every week for Hodgkins disease but was sent home yesterday because his white blood cells were low. His father was very talkative about the adjustment the family was enduring. The oldest was in her eighties (if not nineties) who had her son and granddaughter with her but was too busy playing crosswords to give them or anyone else much mind. One lady had a feather headband that was just too crazy but it went with the rest of her outfit. “E-Bay Head to Toe,” she announced. Another who kept a bit aloof from the rest of us with designer shoes and purse and gold climbing up her arms...I think she was still in shock about being there.
Aunt Jan watched Gavin while we were six hours at the Cancer Center. We came home to cheerful flowers that perked us up. So much has come in from friends and family. Tess keeps her files of cards close at hand and reads and rereads them. They are so appreciated.
Tess was fine yesterday. Appetite good even with the metallic taste and went for a short walk. Today she has been down almost all day with flu-like symptoms. Very sleepy and poor appetite. She has been diligent about the fluids and food and we’ll walk tonight. All in all, pretty much what they told us to expect but tough on the kids who went from hale and hearty to boring and uncomfortable and unfun plain old sick.
Gavin and I went to the park and got our workout. Jamie got the yard watered and did a real workout. Quiet day.
Friday, June 29, 2007
Airport Stressors
Here is the site for Regina Brett's article about Tess's experience at the Tampa Airport.
http://www.cleveland.com/brett/index.ssf?/base/opinion-0/1183105988269070.xml&coll=2
http://www.cleveland.com/brett/index.ssf?/base/opinion-0/1183105988269070.xml&coll=2
Barcolounger Bar
Well we are getting ready for the Barcolounger Bar as if we were headed on an expedition. IPods are loaded. MP3 players are checked for fresh batteries. Books, pillows, snacks are stuffed into totes worthy of a 2-week boat soujourn.
Mary at Dr. Barnett’s office called to ask Tess how she was doing and Tess replied that she had been acting like an annoyed ticked-off teenager all week.
“Really? A teenager?” asked Mary.
“Oh Yes. My eyeball sockets hurt from rolling my eyes so much.”
Mary laughed and said “You are a jewel. I still laugh about your warning about your rancid pits. Most of our patients do not have your attitude and humor.”
Speaking of which, you should hear Tess on the Airport Strip Search. In fact if you read this early enough and can catch NPR at 9:00 they are doing a show on Airport Stressors and Tess’s story will be one of the Stressors mentioned. The girl has connections.
Til later...we off to see the Wizard down the Yellow Brick Road.
Mary at Dr. Barnett’s office called to ask Tess how she was doing and Tess replied that she had been acting like an annoyed ticked-off teenager all week.
“Really? A teenager?” asked Mary.
“Oh Yes. My eyeball sockets hurt from rolling my eyes so much.”
Mary laughed and said “You are a jewel. I still laugh about your warning about your rancid pits. Most of our patients do not have your attitude and humor.”
Speaking of which, you should hear Tess on the Airport Strip Search. In fact if you read this early enough and can catch NPR at 9:00 they are doing a show on Airport Stressors and Tess’s story will be one of the Stressors mentioned. The girl has connections.
Til later...we off to see the Wizard down the Yellow Brick Road.
Wednesday, June 27, 2007
Plastic Surgeon, Etc.
It’s time to post another update and a lot has happened.
Plastic Surgeon
We met with this guy on Tuesday. I had a hard time getting past his shinning teeth and $500 shoes. Plastic surgeons are the celebrities of the doctor world. They look good and so does their staff. It is all charm and PR. And of course, since it is the Cleveland Clinic, they are good at it. We had an iffy meeting. We left feeling that our questions were not answered, we didn’t see photos of finished work, and we didn’t get a good handle on what we really could do. But these people are no dummies. The next day they were calling and addressing these same issues without our even having to bring them up. Tess was good. She was very articulate explaining yes, we did feel that way and we were interested in meeting with them again but we were also going to get some other opinions. Which she has already been inquiring about from her oncologist, primary surgeon, and friends.
Bottom line is, the surgery I was able to get in Brazil 16 years ago....granted the Big PX in the Sky of plastic surgery... is still better than one can get in the United States. I have no idea why. But it must be caught up in politics, insurance companies and lawsuits. Doctors have told me for years that my surgery is amazing and I am only now realizing how true that is. It doesn’t look that amazing to me, but then nothing can beat Mother Nature. Nonetheless, I am pleased and I’m sure we can find someone who can please Tess.
A lot depends upon the genetic testing results, but even so she knows what she wants and we should be able to get better answers.
Strip Searched!
As if mastectomy, a chemo port and a prosthesis aren’t enough to deal with, do you know that these things can set off the airport security systems? And yes, they WILL get you down to the nitty gritty before they back off and start apologizing????
TJ!!
You know if it rains, it pours, right? Well, Diane left TJ last week. It was carefully planned to his misfortune. And it is hitting him unexpectedly and heavily in the pocketbook. This is Tess’s Journey so we won’t dwell upon it here, but if you think of a prayer for him and the rest of his little family, it would not go amiss.
The Summer of 2007 will not be forgotten!!!
Plastic Surgeon
We met with this guy on Tuesday. I had a hard time getting past his shinning teeth and $500 shoes. Plastic surgeons are the celebrities of the doctor world. They look good and so does their staff. It is all charm and PR. And of course, since it is the Cleveland Clinic, they are good at it. We had an iffy meeting. We left feeling that our questions were not answered, we didn’t see photos of finished work, and we didn’t get a good handle on what we really could do. But these people are no dummies. The next day they were calling and addressing these same issues without our even having to bring them up. Tess was good. She was very articulate explaining yes, we did feel that way and we were interested in meeting with them again but we were also going to get some other opinions. Which she has already been inquiring about from her oncologist, primary surgeon, and friends.
Bottom line is, the surgery I was able to get in Brazil 16 years ago....granted the Big PX in the Sky of plastic surgery... is still better than one can get in the United States. I have no idea why. But it must be caught up in politics, insurance companies and lawsuits. Doctors have told me for years that my surgery is amazing and I am only now realizing how true that is. It doesn’t look that amazing to me, but then nothing can beat Mother Nature. Nonetheless, I am pleased and I’m sure we can find someone who can please Tess.
A lot depends upon the genetic testing results, but even so she knows what she wants and we should be able to get better answers.
Strip Searched!
As if mastectomy, a chemo port and a prosthesis aren’t enough to deal with, do you know that these things can set off the airport security systems? And yes, they WILL get you down to the nitty gritty before they back off and start apologizing????
TJ!!
You know if it rains, it pours, right? Well, Diane left TJ last week. It was carefully planned to his misfortune. And it is hitting him unexpectedly and heavily in the pocketbook. This is Tess’s Journey so we won’t dwell upon it here, but if you think of a prayer for him and the rest of his little family, it would not go amiss.
The Summer of 2007 will not be forgotten!!!
Sunday, June 17, 2007
Genetic Testing
All of you know Tess is our little Brazilian. We got her when she was 12 days old and all we know of her genetic background is that she is Brazilian and German. The German part being pure German because that crowd did not intermarry and generations after arriving were still speaking German and running German schools in all the neighborhoods. The Brazilian part is mostly Portuguese and Italian with who knows what else mixed in here and there as happens in the New World.
Because of her age, type of cancer, and I suppose a few more factors, Dr. Spiro wanted her to participate in a study being done at the Cleveland Clinic trying to identify genetic factors in cancer cells. So she went Friday for the first testing and profiling. It took quite a lot of time and blood but was very interesting and will be very informative. I don’t know many of the details yet, but am so glad she is going to be tracked by the genetic scientists. Tess was enthused about the quality of the people and the program. The short term results of whether or not she has one of the genetic genes they are studying will have an affect on her treatment, so it is important for that reason also. That result will be back in four to six weeks.
She is now getting herself geared up for Chemo. She looks adorable and that hair could not be more beautiful. I want her to get it cut and make a fall out of it before it starts coming out on her pillow and will be lost. I know she will look darling with a short haircut. The only time she has ever had short hair was when I cut it all off when she had lice (age 2) and I could not get those little nits off the hair strands. Even at age 2 she wailed and cried and was furious with me for ages for doing that. In fact, she cried every time I cut her hair, even if it was half an inch. So she probably is not going to give it up unless and until she has to. The chemo combo she gets might not kill the hair follicles and God help me if I urge her to get it cut and then she kept her hair anyway. I’d never hear the end of it.
There is a growing collection of cute hats and scarves and pajamas!! Everyone is sending her pajamas! They must know she doesn’t get dressed until noon if she doesn’t have to.
Jamie and Tess have an opportunity for a few days in Florida at a nice place in St. Petersburg with his company. Gavin is going to stay with Jamie’s parents and I know they can’t wait to get their hands on him. Chemo starts a few days after they get back.
I’m trusting that all your prayers and positive thoughts will make Tess one of the lucky ones who gets through the chemo easily. She’s young and healthy and has bounced back from the down feelings of the other day. As Karen said, “Wait a minute. You got on the wrong page back there. Let’s get your attitude back where it belongs!” And it is.
Because of her age, type of cancer, and I suppose a few more factors, Dr. Spiro wanted her to participate in a study being done at the Cleveland Clinic trying to identify genetic factors in cancer cells. So she went Friday for the first testing and profiling. It took quite a lot of time and blood but was very interesting and will be very informative. I don’t know many of the details yet, but am so glad she is going to be tracked by the genetic scientists. Tess was enthused about the quality of the people and the program. The short term results of whether or not she has one of the genetic genes they are studying will have an affect on her treatment, so it is important for that reason also. That result will be back in four to six weeks.
She is now getting herself geared up for Chemo. She looks adorable and that hair could not be more beautiful. I want her to get it cut and make a fall out of it before it starts coming out on her pillow and will be lost. I know she will look darling with a short haircut. The only time she has ever had short hair was when I cut it all off when she had lice (age 2) and I could not get those little nits off the hair strands. Even at age 2 she wailed and cried and was furious with me for ages for doing that. In fact, she cried every time I cut her hair, even if it was half an inch. So she probably is not going to give it up unless and until she has to. The chemo combo she gets might not kill the hair follicles and God help me if I urge her to get it cut and then she kept her hair anyway. I’d never hear the end of it.
There is a growing collection of cute hats and scarves and pajamas!! Everyone is sending her pajamas! They must know she doesn’t get dressed until noon if she doesn’t have to.
Jamie and Tess have an opportunity for a few days in Florida at a nice place in St. Petersburg with his company. Gavin is going to stay with Jamie’s parents and I know they can’t wait to get their hands on him. Chemo starts a few days after they get back.
I’m trusting that all your prayers and positive thoughts will make Tess one of the lucky ones who gets through the chemo easily. She’s young and healthy and has bounced back from the down feelings of the other day. As Karen said, “Wait a minute. You got on the wrong page back there. Let’s get your attitude back where it belongs!” And it is.
Tuesday, June 12, 2007
A Reality Check
The door slammed and she threw down the sack of “goodies” and slumped in the chair.
Then in her best social services voice, she began to pull the freebees out of the sack.
“Tess.......This is your extra soft toothbrush for when your teeth are hurting and your gums are bleeding.
“Tess.......This is your special toothpaste you use with your soft toothbrush when your have the mouth sores.
“Tess......This is the rinse for your mouth and throat sores.
“Tess..... Here’s the digital thermometer. If you have 105 temperature, you must call us right away. It could be fatal.
“Tess.....Here’s your information on constipation
...............on bone pain..............on diarrhea management...........on skin rashes........on burning bladders.......Oh that can be very dangerous. You must manage your liquid intake and drink lots of fluids. When you have to pee, do so right away because it could be burning your bladder. You may bleed. Drink fluids.
“Tess.......(as she is now crying and holding her stomach about to vomit before even seeing a barcolounger)........don’t bottle things up. Let your emotions out.
“Tess......Here is the treatment room (And she does view a room full of recliners with mostly greyheads doing crossword puzzles and knitting and one lone younger woman with yellow bags under her eyes, no eyelashes, brows or hair and looking wan and miserable.) “Oh, and honey. You will lose your hair.”
As I’m listening to her and laughing at her performance and crying for her courage, I’m thinking we’re going to need Dave Thompson to get her in that treatment room. Dave was the one who got her on the airplane when we moved to Brazil to live and she was 15 and determined not to go.
Fortunately, a friend of Julie’s who has just completed two years of intensive chemo and radiation, bucked her up. “Just remember. You act like you’re sick, you are sick. You act healthy, you are healthy. You’re strong and healthy just taking a chemo bath to kill cancer cells. So maybe it leaves a little hangover. You’ll be fine.
Then in her best social services voice, she began to pull the freebees out of the sack.
“Tess.......This is your extra soft toothbrush for when your teeth are hurting and your gums are bleeding.
“Tess.......This is your special toothpaste you use with your soft toothbrush when your have the mouth sores.
“Tess......This is the rinse for your mouth and throat sores.
“Tess..... Here’s the digital thermometer. If you have 105 temperature, you must call us right away. It could be fatal.
“Tess.....Here’s your information on constipation
...............on bone pain..............on diarrhea management...........on skin rashes........on burning bladders.......Oh that can be very dangerous. You must manage your liquid intake and drink lots of fluids. When you have to pee, do so right away because it could be burning your bladder. You may bleed. Drink fluids.
“Tess.......(as she is now crying and holding her stomach about to vomit before even seeing a barcolounger)........don’t bottle things up. Let your emotions out.
“Tess......Here is the treatment room (And she does view a room full of recliners with mostly greyheads doing crossword puzzles and knitting and one lone younger woman with yellow bags under her eyes, no eyelashes, brows or hair and looking wan and miserable.) “Oh, and honey. You will lose your hair.”
As I’m listening to her and laughing at her performance and crying for her courage, I’m thinking we’re going to need Dave Thompson to get her in that treatment room. Dave was the one who got her on the airplane when we moved to Brazil to live and she was 15 and determined not to go.
Fortunately, a friend of Julie’s who has just completed two years of intensive chemo and radiation, bucked her up. “Just remember. You act like you’re sick, you are sick. You act healthy, you are healthy. You’re strong and healthy just taking a chemo bath to kill cancer cells. So maybe it leaves a little hangover. You’ll be fine.
Oncology, oncology
This is about last Friday’s meeting which I told you about but promised more details. I’ve noticed that oncologists love patients who have good prognosis. I always got hugs and smiles and Tess got that on Friday. We help elevate the level of cheer and hope in the place.
Dr. Spiro was full of smiles and calling her “Tess.” He was much more relaxed and easy than at the Black Thursday meeting. All of this I count as a good sign. Our results were making his day! Hooray for us!
Frankly I can’t remember all the details. Her chemo will be Docetaxel (Taxotere) combined with Cyclophosphamide (Cytoxan) which recent studies have shown work better and safer than the doxorubicins (Adriamycin) for her type of cancer. Since the symptoms vary from person to person and so much of it is in your mind (30% of the men in a British study who thought they were on a chemo protocol causing hair loss but were actually on the placebos, LOST their hair!!) So I figure don’t worry about the side effects. Dr. Spiro said she might NOT lose her hair and these drugs are not the ones causing heart problems (20 years later) or leukemia (also 20 years later). And Dr. Spiro thinks 4 times with 3 week intervals is the best protocol, which is also wonderful because her body can handle that better. And finally, he okayed 5 weeks from surgery so her healing from that will be far enough along to take on the chemo. That puts the first chemo on Friday, June 29th. So with the prayers and positive thoughts coming in, she will be strong and vital through this part.
Next good news was her trip to Florida. Since he okayed five weeks to chemo start, Tess asked about the trip and if it was dangerous to fly on a plane with risk of infections flying around. “Only if you sit next to a lawyer with TB,” he replied! “Go and have fun.”
And finally she fits the profile of a study being done at Cleveland Clinic for genetic testing for young women with an aggressive breast cancer. That good news means she will be monitored closely and if her cancer is genetically tied, the information gained will definitely help herself and future women in a similar situation.
Today is her Chemo Intro 101 meeting. Tom and I are watching Gavin while she learns what to fill her Chemo Tote with, how to eat before and afterwards, and, I suppose, general Barcolounger Etiquette
Dr. Spiro was full of smiles and calling her “Tess.” He was much more relaxed and easy than at the Black Thursday meeting. All of this I count as a good sign. Our results were making his day! Hooray for us!
Frankly I can’t remember all the details. Her chemo will be Docetaxel (Taxotere) combined with Cyclophosphamide (Cytoxan) which recent studies have shown work better and safer than the doxorubicins (Adriamycin) for her type of cancer. Since the symptoms vary from person to person and so much of it is in your mind (30% of the men in a British study who thought they were on a chemo protocol causing hair loss but were actually on the placebos, LOST their hair!!) So I figure don’t worry about the side effects. Dr. Spiro said she might NOT lose her hair and these drugs are not the ones causing heart problems (20 years later) or leukemia (also 20 years later). And Dr. Spiro thinks 4 times with 3 week intervals is the best protocol, which is also wonderful because her body can handle that better. And finally, he okayed 5 weeks from surgery so her healing from that will be far enough along to take on the chemo. That puts the first chemo on Friday, June 29th. So with the prayers and positive thoughts coming in, she will be strong and vital through this part.
Next good news was her trip to Florida. Since he okayed five weeks to chemo start, Tess asked about the trip and if it was dangerous to fly on a plane with risk of infections flying around. “Only if you sit next to a lawyer with TB,” he replied! “Go and have fun.”
And finally she fits the profile of a study being done at Cleveland Clinic for genetic testing for young women with an aggressive breast cancer. That good news means she will be monitored closely and if her cancer is genetically tied, the information gained will definitely help herself and future women in a similar situation.
Today is her Chemo Intro 101 meeting. Tom and I are watching Gavin while she learns what to fill her Chemo Tote with, how to eat before and afterwards, and, I suppose, general Barcolounger Etiquette
Monday, June 11, 2007
Incredible Jamie
I do have to write about my wonderful son-in-law. His 32nd birthday was the 7th of this month and he spent it anticipating a visit to the oncologist’s office the next morning. His life and future plans which seemed so perfect just a few short months ago have been thrown to the winds. Heavy worries and cruel uncertainty has become the norm. Change is not just a little breeze passing through his life but a whirlwind that has picked him up and he has no idea where, when and how he will land except that it will be on his feet. New job, new house, new neighborhood, new friends, new co-workers, and then this lovely little “c” word invades his territory along with its attendant demands.
With what grace he handles everything. Patience, kindness, understanding. There are not enough words to praise his character and actions.
And how good he is with me. I’m not the easiest person in the world and frankly, dealing with cancer does NOT get easier each time. It gets harder. It is not just a matter of walking Tess through the journey, but also dealing with and avoiding all my ghosts of the past. Sometimes I am supportive and sometimes I need the support. Jamie is always there with a hug or a kind word or a thank you.
So all you readers of this blog, say a special prayer for Jamie and send him lots of love.
With what grace he handles everything. Patience, kindness, understanding. There are not enough words to praise his character and actions.
And how good he is with me. I’m not the easiest person in the world and frankly, dealing with cancer does NOT get easier each time. It gets harder. It is not just a matter of walking Tess through the journey, but also dealing with and avoiding all my ghosts of the past. Sometimes I am supportive and sometimes I need the support. Jamie is always there with a hug or a kind word or a thank you.
So all you readers of this blog, say a special prayer for Jamie and send him lots of love.
Friday, June 8, 2007
Cancer Cheerleaders Strike Out Again
Once more the Cheerleaders were not so cheerful. Everyone is stressing out around Gavin and he knows it so he is being fretful and clingy. Jan is late getting here and the sisters are glaring at each other with Gavin throwing them Good Grief Glances and looking to his mother for support who is just trying to get everyone into a car and get us to the Clinic. She is wondering why does she have a support group who continually falls apart and thinking she needs to find some good Brazilian feel-good pills or something. This just will not do. Jamie and I get a lecture on the way in.....no tears, no holding your heads, for goodness sake, suck it up!
We are late and so there is a very long wait for Dr. Spiro who probably does not even know it but has been rerouted by the clever nurses who have put us in a different time slot.
He comes in smiling and once again it is Tess who holds court and has all the questions like little ducks in a row. And the news is awesome.
For now I’ll just say the chemo has been reduced to 4x 3wks apart and it is a new chemical combination that has better side effects. No radiation (clear margines, node negative) and no tamaxofen because her cancer is not hormone fed so it wouldn’t do any good anyway. She can go to Florida on their trip first and chemo starts June 29th. So much testing and info to get before then, but 5 year cure rate is 87% so we are pleased.
More details later. These sessions are exhausting! Thanks, Jan for babysitting and thanks cheerleaders abroad. Those prayers are working........keep them up!!
And now we are understanding why Dr. Spiro's patients love him. :)
We are late and so there is a very long wait for Dr. Spiro who probably does not even know it but has been rerouted by the clever nurses who have put us in a different time slot.
He comes in smiling and once again it is Tess who holds court and has all the questions like little ducks in a row. And the news is awesome.
For now I’ll just say the chemo has been reduced to 4x 3wks apart and it is a new chemical combination that has better side effects. No radiation (clear margines, node negative) and no tamaxofen because her cancer is not hormone fed so it wouldn’t do any good anyway. She can go to Florida on their trip first and chemo starts June 29th. So much testing and info to get before then, but 5 year cure rate is 87% so we are pleased.
More details later. These sessions are exhausting! Thanks, Jan for babysitting and thanks cheerleaders abroad. Those prayers are working........keep them up!!
And now we are understanding why Dr. Spiro's patients love him. :)
Morning with Spiro
The morning of our Spiro appointment. No one slept last night including the cats. Tess was reviewing our last meeting at the breakfast table.
Tess being Spiro:
Big Smile. “So. This is the worst cancer possible.”
Big Smile. “And in addition.....”
Big Smile. “I don’t sugar coat.” “It’s hard to get in to me.”
Big Smile. “I’m not good with emotions.”
Big Smile. “That’s why I have Sally and Michelle.”
Big Smile.
And Tess’s favorite Sally comment following Tess’s statement, “And by the way, I came out of that office feeling like crap.”
Sally: “Define crap.”
Then Tess went off on an entire skit defining “crap” followed by Sally’s social science trained dialog........”define embarrasment,” “define anger,” “define the f-word.” She had me in stitches.
But we have heard his patients wind up loving him and I have the highest regard for Sally who I think is a genius and Tess loves Michelle.
Tess being Spiro:
Big Smile. “So. This is the worst cancer possible.”
Big Smile. “And in addition.....”
Big Smile. “I don’t sugar coat.” “It’s hard to get in to me.”
Big Smile. “I’m not good with emotions.”
Big Smile. “That’s why I have Sally and Michelle.”
Big Smile.
And Tess’s favorite Sally comment following Tess’s statement, “And by the way, I came out of that office feeling like crap.”
Sally: “Define crap.”
Then Tess went off on an entire skit defining “crap” followed by Sally’s social science trained dialog........”define embarrasment,” “define anger,” “define the f-word.” She had me in stitches.
But we have heard his patients wind up loving him and I have the highest regard for Sally who I think is a genius and Tess loves Michelle.
Tuesday, June 5, 2007
It's a sleepless night before our next visit with the oncologist. The last visit wasn't so pleasant. Here are some excerpts from Tess's email about about that visit to her highschool girlfriends:
“Hello my M-town homies,
We had the visit to the Oncologist on Thurs (that was May 17th, an unbelieveable 3 weeks ago) and I must say he sure did not have a pretty picture to paint. With more indepth testing they were able to determine that my cancer was not estrogen-driven, which is a harder cancer to treat and the implications lead more towards a genetically passed on case. Also, they were able to determine that based on the make up of the tumor and my age that we are dealing with a very aggressive cancer so the fear of spread was instilled. He also confirmed what my surgeon said..no kids..many tears over this subject but I certaintly know that I would make one kickass adoptive mother so that is a tabled chapter for Jamie and I down the road. While his bedside manner is truly for the birds, I will take it b/c he is the best and his staff of nurses are wonderful so I will just bitch to them. Thursday night..no sleep for Tess and feeling very pissed off. Friday was a turnaround for us. I had a cat scan and a p.e.t. scan in the morning to determine if the cancer had spread. At two o'clock, i got the results. THE CANCER IS ONLY IN MY LEFT BREAST AND ONE LYMPH NODE! Happy Feet, Part 2, I never thought I would be jumping up and down about having cancer in one lymph node! This will not alter the treatment much as far as an aggressive approach and they have scheduled my surgery to remove my lymph nodes and my left breast to this Tues., May 22nd. I am expected to start Chemo in about 3-4 weeks after this surgery with reconstruction surgery being the last piece. This timeline certaintly will cover 2007 for us and potentially part of '08.
Ladies, I can't tell you how much all your calls, your emails, your cards, your thoughts, your prayers, THE FANTASTIC FREEZER, and all your other special gifts mean to me and my family. I feel so supported and loved by you guys and am sooooo grateful for this childhood clan. I plan to fight and I will survive this. I will update with more, once I know more.
Enjoy your weekends!
Much love,
Tess "
As you all know, after surgery we learned that the PET scan showed a false positive and there was no cancer in the lymph nodes. So we are hoping for a much better meeting tomorrow and a not so aggressive protocol.
“Hello my M-town homies,
We had the visit to the Oncologist on Thurs (that was May 17th, an unbelieveable 3 weeks ago) and I must say he sure did not have a pretty picture to paint. With more indepth testing they were able to determine that my cancer was not estrogen-driven, which is a harder cancer to treat and the implications lead more towards a genetically passed on case. Also, they were able to determine that based on the make up of the tumor and my age that we are dealing with a very aggressive cancer so the fear of spread was instilled. He also confirmed what my surgeon said..no kids..many tears over this subject but I certaintly know that I would make one kickass adoptive mother so that is a tabled chapter for Jamie and I down the road. While his bedside manner is truly for the birds, I will take it b/c he is the best and his staff of nurses are wonderful so I will just bitch to them. Thursday night..no sleep for Tess and feeling very pissed off. Friday was a turnaround for us. I had a cat scan and a p.e.t. scan in the morning to determine if the cancer had spread. At two o'clock, i got the results. THE CANCER IS ONLY IN MY LEFT BREAST AND ONE LYMPH NODE! Happy Feet, Part 2, I never thought I would be jumping up and down about having cancer in one lymph node! This will not alter the treatment much as far as an aggressive approach and they have scheduled my surgery to remove my lymph nodes and my left breast to this Tues., May 22nd. I am expected to start Chemo in about 3-4 weeks after this surgery with reconstruction surgery being the last piece. This timeline certaintly will cover 2007 for us and potentially part of '08.
Ladies, I can't tell you how much all your calls, your emails, your cards, your thoughts, your prayers, THE FANTASTIC FREEZER, and all your other special gifts mean to me and my family. I feel so supported and loved by you guys and am sooooo grateful for this childhood clan. I plan to fight and I will survive this. I will update with more, once I know more.
Enjoy your weekends!
Much love,
Tess "
As you all know, after surgery we learned that the PET scan showed a false positive and there was no cancer in the lymph nodes. So we are hoping for a much better meeting tomorrow and a not so aggressive protocol.
Monday, June 4, 2007
Back Home
Friday, June 1...Another crazy day. Gavin was up early and he and his Grammy did our morning routine of breakfast, sand table, walk and playroom around rain and parents. Tess actually got a list done of her thank you notes. No actual thank yous yet, but a list. Some progress. She had an appointment for a feel-good pedicure in the afternoon, but you remember our car excitement from the day before. She went out to check and uh-huh, dead as a doornail.
Tess has already made some good friends in Oberlin. They have brought food and run errands and are part of a playgroup for the little ones, so she called her friend Margaret. "Hooray, somewhere I can help" cried Margaret and they arranged for her to take Tess.
Mind you, the girl is only a week and a half out of major surgery and wiped half the day but ......... hey! Shopping, Pedicures, ........ the Will provides the Way.
Meantime, the girls have left and I take Gavin up for a diaper change when I hear all this racket and pounding against the house. No workmen that I know of are supposed to be around, but something seems radically wrong downstairs. So I quickly finish Gavin and we go down. Shadow, the cat, is out on the patio, now trapped under a screen door and on top of a rose bush and obviously in a rather panicked state of mind. It is raining and there has been a clap of thunder. This is an inside cat and don't ask me how she got shut outside. I open the patio door, lift the mangled screen door and she shoots for inside. What a mess. Upset patio pot, rose bush and demolished screen door. This cat has no front claws and weighs about five pounds.. How did she cause so much damage with so little resources?
Big Tom (who is getting littler as I type) came to pick me up Friday at suppertime. I was so anxious to see him and get back to my own home that I was wheeling Gavin down the road to meet Grandpa fifteen minutes before he was due. I figured if Tess could do a pedicure, she could do supper. "You're a much better cook than I am," I said.
"I have cancer!" she shrieked.
But I was already out the door. And she did. She made a lovely supper of baked fish, grilled aspargus and a wild rice mixture. Yummy. She really is a good cook.
I came home and did several pet sits on Saturday and watched movies betweentimes with Tom. Tess has had friends with her for the last several days and will be flying solo on Tuesday. Friday I'll go back up for the oncologist's meeting and we're hoping for a less aggressive protocol in view of the great pathology reports that have come back.
So things are looking great.........other than the fact that we have chemo to get through and another major operation. Thank you one and all for your prayers and continued support. I think that has made all the difference in the world. We are in such a much better place than we might have been, Thank the Lord!!!!
Tess has already made some good friends in Oberlin. They have brought food and run errands and are part of a playgroup for the little ones, so she called her friend Margaret. "Hooray, somewhere I can help" cried Margaret and they arranged for her to take Tess.
Mind you, the girl is only a week and a half out of major surgery and wiped half the day but ......... hey! Shopping, Pedicures, ........ the Will provides the Way.
Meantime, the girls have left and I take Gavin up for a diaper change when I hear all this racket and pounding against the house. No workmen that I know of are supposed to be around, but something seems radically wrong downstairs. So I quickly finish Gavin and we go down. Shadow, the cat, is out on the patio, now trapped under a screen door and on top of a rose bush and obviously in a rather panicked state of mind. It is raining and there has been a clap of thunder. This is an inside cat and don't ask me how she got shut outside. I open the patio door, lift the mangled screen door and she shoots for inside. What a mess. Upset patio pot, rose bush and demolished screen door. This cat has no front claws and weighs about five pounds.. How did she cause so much damage with so little resources?
Big Tom (who is getting littler as I type) came to pick me up Friday at suppertime. I was so anxious to see him and get back to my own home that I was wheeling Gavin down the road to meet Grandpa fifteen minutes before he was due. I figured if Tess could do a pedicure, she could do supper. "You're a much better cook than I am," I said.
"I have cancer!" she shrieked.
But I was already out the door. And she did. She made a lovely supper of baked fish, grilled aspargus and a wild rice mixture. Yummy. She really is a good cook.
I came home and did several pet sits on Saturday and watched movies betweentimes with Tom. Tess has had friends with her for the last several days and will be flying solo on Tuesday. Friday I'll go back up for the oncologist's meeting and we're hoping for a less aggressive protocol in view of the great pathology reports that have come back.
So things are looking great.........other than the fact that we have chemo to get through and another major operation. Thank you one and all for your prayers and continued support. I think that has made all the difference in the world. We are in such a much better place than we might have been, Thank the Lord!!!!
Thursday, May 31, 2007
Riding the Roller Coaster
It continues to be an interesting ride with emotions always up and down. The house which we maintained so lovingly the first few days, has rather been on it's own since Meltdown as we adjust to the reality of surgery and upcoming Chemo. I did get the floors swept, a bed changed, kitchen cleaned and Gavin walked before Tess, Gavin and I headed out to get stamps and gauze.
Then, on the spur of the moment we headed off to check out Costco. Much of the food people have brought to us has been from there and Tess and Jamie are considering a membership. Sometimes the volitility of emotions means you take advantage of whatever sounds fun and you go. Tess had no wallet, purse, etc. with her :), we had no diapers for Gavin, did we turn off the coffeepot at the house?. But off we went. Well, one thing led to another. We had lunch at Panera, we called Jamie to join us, then checked out Playland and played cars on the floor with Gavin until poopy diapers reminded us it was time to head home.
Oh-oh. Car wouldn't start. Funny noise coming from the back hatch door which obviously had run the battery down. Tess heads to Panera to ask who might have a pair of jumper cables in their car. No one. I try to call Tom to have him find my other purse in my clothes closet that has the AAA card in it. Wellll, you can imagine how that conversation went. The purse with the squiggles on it?? No, the red one with the blue handles. The soft one? No, the Coach one. Coach???? What color is that?
Tess had better luck. Not at Panera. She bombed out there but headed across the street to IHop where she saw a 40-yr. old African American lady pulling up. "Do you have jumper cables?"
"I sure do, sweetie. Do you need a jump?"
"Yes. My mother has my toddler who has poopy pants and the battery is dead and no one at Panera had cables"
"Let's talk about this for a minute. None of those white people at Panera are going to help you. Just have faith and we will get you going. So how has the rest of your month been?"
"Not so good. I just found out I have cancer."
"Well, honey. I'm a cancer survivor and you just keep the faith and you will be too. I'm Anita, and you just watch. Now about this car. Pretty soon you'll see my husband come running out of IHop with his hands in the air, saying "What are you doing, woman?" He thinks I can't jump a car, but I can."
Which he did exclaiming, "What are you women doing in this heat messing with cars?" He chased the women out of his way and got the car running. I still had not showed up, being around the corner trying to steer Tom to the right purse in the right closet corner.
"Do you want me to go find your son and mother?"
"No, no. She can't leave without me and I can't leave the car. She'll show up."
I did. Then on the way home, lights twinkled, little stressful ones like brake and battery. But we got home, had tea and to heck with cars, jumper cables and poopy diapers.
Just have faith.
Then, on the spur of the moment we headed off to check out Costco. Much of the food people have brought to us has been from there and Tess and Jamie are considering a membership. Sometimes the volitility of emotions means you take advantage of whatever sounds fun and you go. Tess had no wallet, purse, etc. with her :), we had no diapers for Gavin, did we turn off the coffeepot at the house?. But off we went. Well, one thing led to another. We had lunch at Panera, we called Jamie to join us, then checked out Playland and played cars on the floor with Gavin until poopy diapers reminded us it was time to head home.
Oh-oh. Car wouldn't start. Funny noise coming from the back hatch door which obviously had run the battery down. Tess heads to Panera to ask who might have a pair of jumper cables in their car. No one. I try to call Tom to have him find my other purse in my clothes closet that has the AAA card in it. Wellll, you can imagine how that conversation went. The purse with the squiggles on it?? No, the red one with the blue handles. The soft one? No, the Coach one. Coach???? What color is that?
Tess had better luck. Not at Panera. She bombed out there but headed across the street to IHop where she saw a 40-yr. old African American lady pulling up. "Do you have jumper cables?"
"I sure do, sweetie. Do you need a jump?"
"Yes. My mother has my toddler who has poopy pants and the battery is dead and no one at Panera had cables"
"Let's talk about this for a minute. None of those white people at Panera are going to help you. Just have faith and we will get you going. So how has the rest of your month been?"
"Not so good. I just found out I have cancer."
"Well, honey. I'm a cancer survivor and you just keep the faith and you will be too. I'm Anita, and you just watch. Now about this car. Pretty soon you'll see my husband come running out of IHop with his hands in the air, saying "What are you doing, woman?" He thinks I can't jump a car, but I can."
Which he did exclaiming, "What are you women doing in this heat messing with cars?" He chased the women out of his way and got the car running. I still had not showed up, being around the corner trying to steer Tom to the right purse in the right closet corner.
"Do you want me to go find your son and mother?"
"No, no. She can't leave without me and I can't leave the car. She'll show up."
I did. Then on the way home, lights twinkled, little stressful ones like brake and battery. But we got home, had tea and to heck with cars, jumper cables and poopy diapers.
Just have faith.
Retail Therapy
Wednesday, May 30th.
The Day after Meltdown we all woke up feeling rinsed clean. Gavin got the kids up...Grammy slept right through his first morning cooings. Then after Jamie got off to work, I headed to this computer and Google was so cooperative in helping me set up this blog. At 9:45 I was still in my jams at the computer when Tess yelled, Retail Therapy Time!! So in 15 minutes we were out the door to Great Northern Mall where Gavin frolicked in the playground and Tess found cute pj's & sweats at Victoria Secret. Even I found some decent T's at Christopher & Banks that weren't so tight they flattened my bosum or so long they reached my knees. What are these designers thinking of these days????
Fun Food Fest at the Food Court........Mickey D's for Gavin, Taco Bell for Mom and Chinese for Grammy. Jamie picked up Tess for the visit with Dr. Barnett and Gavin and I came on home.
As mentioned before, the visit went well. Dr. Barnett was cheering his work and telling Tess how happy she was going to be with it, while Tess was wailing as the bandages were removed and she hated having missing parts, at the same time she was making them laugh as she warned them about rancid and musty armpits. Mary, the doctor's nurse told her she really must have a very good guardian angel because the hope from this visit is that there will be no radiation and possibly reduced chemo. Hooray!
Before Tess even got home, Michelle, the oncologist's nurse called to discuss the visit. She also praised Tess's angels and prayer support group. "Really, Tess, I honestly believe if you had come in a month later this would not be a happy story. It could well have metastacized by then. You are so protected to have gotten here early."
Thank you everyone for those prayers, candles and positive thoughts sent our way.
The Day after Meltdown we all woke up feeling rinsed clean. Gavin got the kids up...Grammy slept right through his first morning cooings. Then after Jamie got off to work, I headed to this computer and Google was so cooperative in helping me set up this blog. At 9:45 I was still in my jams at the computer when Tess yelled, Retail Therapy Time!! So in 15 minutes we were out the door to Great Northern Mall where Gavin frolicked in the playground and Tess found cute pj's & sweats at Victoria Secret. Even I found some decent T's at Christopher & Banks that weren't so tight they flattened my bosum or so long they reached my knees. What are these designers thinking of these days????
Fun Food Fest at the Food Court........Mickey D's for Gavin, Taco Bell for Mom and Chinese for Grammy. Jamie picked up Tess for the visit with Dr. Barnett and Gavin and I came on home.
As mentioned before, the visit went well. Dr. Barnett was cheering his work and telling Tess how happy she was going to be with it, while Tess was wailing as the bandages were removed and she hated having missing parts, at the same time she was making them laugh as she warned them about rancid and musty armpits. Mary, the doctor's nurse told her she really must have a very good guardian angel because the hope from this visit is that there will be no radiation and possibly reduced chemo. Hooray!
Before Tess even got home, Michelle, the oncologist's nurse called to discuss the visit. She also praised Tess's angels and prayer support group. "Really, Tess, I honestly believe if you had come in a month later this would not be a happy story. It could well have metastacized by then. You are so protected to have gotten here early."
Thank you everyone for those prayers, candles and positive thoughts sent our way.
Meltdown
Tuesday, May 29th was Meltdown Day. We all woke up with nightmares including Gavin, the baby. Jamie went back to work after the Memorial Holiday. At six in the morning he was down whaling the punchbag Team Tess got him for working out his issues and anger when the stress levels reached red level. I went out to fix the one oscillating sprinkler that wouldn't oscillate and couldn't find it. I was sure Jamie had thrown it away before I had a chance to fix or return it. Poor Jamie, totally innocent. But I had a crying fit over a sprinkler because I didn't want to think I was crying over Tess. Tom called and was moaning because he had only one pair of pants to wear because he has lost so much weight and he had an acre of flowers to water because I was at Tess's and it hadn't rained. Meantime, Jamie is worried about all the watering he has to do here. Alison was on vacation and when Beck wouldn't sleep and the crib broke down and they couldn't get a new one in the car, broke down into crying fits. Talk about displacement! All of us wailing over something tangible and beating it up because we can't beat on the cancer.
Tess is shouting Where is my team? Where is my Team? My whole Team has crumpled! I have no backup plan! No Team Two in training! You guys have to get your shit together...Now! We haven't even started chemo and reconstruction. Enough. Don't let this happen again! This is not acceptable!
Tess is shouting Where is my team? Where is my Team? My whole Team has crumpled! I have no backup plan! No Team Two in training! You guys have to get your shit together...Now! We haven't even started chemo and reconstruction. Enough. Don't let this happen again! This is not acceptable!
Wednesday, May 30, 2007
Hello
Hello everyone. Today is May 30th and we are a month into our fight with the Big C. Today we have the checkup with the surgeon for the first time. Her mastectomy and lymph node removal was last Tuesday. The pathology came back TOTALLY CLEAR so that was fantastic news. Thanks everyone for your prayers and positive thoughts...I'm sure that has sent those cancer cells running.
Just to give you a chrono line of what has happened so far:
April 15th, Sunday....with Alison who had found a breast lump and urged Tess to check. She did and found a lump.
April 20th, Friday....her doctor who sent her for a diagnostic mammogram.
April 24th, Tuesday...Diagnostic mammogram where they scheduled her for a sonogram.
April 26th, Thursday...Breast Sonogram where they were very solicitious and she burst into tears but still was unaware.
May 2, Wednesday...Meeting with surgeon at Cleveland Clinic to try to aspirate the "cyst." Only able to get a few cells but those were benign. Nonetheless, the surgeon felt it was important to "get that thing out of you as soon as possible." A good thing too. We have read many stories of false negatives that grew to be very invasive cancers. But we were still blissful at this stage.
May 7th, Monday...Biopsy. Surgeon still felt it was benign.
May 8th, Tuesday...CC called with the results. Big turn of events. Invasive Intraductal Carcinoma. Not one of your easier cancers to deal with.
May 14th, Monday...Meeting with the surgeon. Very sweet but not encouraging. Dealing with an aggressive cancer that would require extensive treatment. Tumor was 3.5 centimeters with unclear margins. Subtle recommendation for full mastectomy with lumph node incisement. Suggested with meet with oncologist before surgery.
May 17th, Thursday...Meeting with the oncologist. Black Day.
Black. He prepared us for spread of the cancer because of it's type and the fact that it had reached both the lymph system and the blood system.
May 18th, Friday...PET scan, CAT scan and bloodwork.
May 19th, Saturday...Plastic surgeon called surgeon to discuss type of surgery so that reconstruction options would be as varied as possible. Meantime, results of tests came back and we were cheering in the grandstands at cancer in only one lymph node. Can you believe?
May 22nd, Tuesday...Surgery.
May 23rd, Wednesday...Home already and doing very well. Drains dragging and high on drugs.
May 25th, Friday...Lab results. Lymph node was a FALSE POSITIVE!!! CANCER HAS NOT SPREAD THAT WAY!!!
Also clear margins so no spread to the chest wall. Way good. Thanks again for those prayers and thoughts!!! Keep those candles burning and those rosaries glowing and dances around the fairy rings. This is an ecumenical group. We welcome all positive thoughts. (We have rosaries blessed from Majagorie(sp?), Lourdes and the Vatican!) Wow and double Wow.
So that brings you uptodate. What a roller coaster emotionally and physically. But do you see how long between events? Young women out there .............. do those breast checks!!!!
I have to go now but this will be the site where we keep all of you informed as to our progress. The next steps are chemo and reconstruction. Hopefully with the false positive on the lymph node we can skip radiation. Blessing to all. Love, Marlyn
Just to give you a chrono line of what has happened so far:
April 15th, Sunday....with Alison who had found a breast lump and urged Tess to check. She did and found a lump.
April 20th, Friday....her doctor who sent her for a diagnostic mammogram.
April 24th, Tuesday...Diagnostic mammogram where they scheduled her for a sonogram.
April 26th, Thursday...Breast Sonogram where they were very solicitious and she burst into tears but still was unaware.
May 2, Wednesday...Meeting with surgeon at Cleveland Clinic to try to aspirate the "cyst." Only able to get a few cells but those were benign. Nonetheless, the surgeon felt it was important to "get that thing out of you as soon as possible." A good thing too. We have read many stories of false negatives that grew to be very invasive cancers. But we were still blissful at this stage.
May 7th, Monday...Biopsy. Surgeon still felt it was benign.
May 8th, Tuesday...CC called with the results. Big turn of events. Invasive Intraductal Carcinoma. Not one of your easier cancers to deal with.
May 14th, Monday...Meeting with the surgeon. Very sweet but not encouraging. Dealing with an aggressive cancer that would require extensive treatment. Tumor was 3.5 centimeters with unclear margins. Subtle recommendation for full mastectomy with lumph node incisement. Suggested with meet with oncologist before surgery.
May 17th, Thursday...Meeting with the oncologist. Black Day.
Black. He prepared us for spread of the cancer because of it's type and the fact that it had reached both the lymph system and the blood system.
May 18th, Friday...PET scan, CAT scan and bloodwork.
May 19th, Saturday...Plastic surgeon called surgeon to discuss type of surgery so that reconstruction options would be as varied as possible. Meantime, results of tests came back and we were cheering in the grandstands at cancer in only one lymph node. Can you believe?
May 22nd, Tuesday...Surgery.
May 23rd, Wednesday...Home already and doing very well. Drains dragging and high on drugs.
May 25th, Friday...Lab results. Lymph node was a FALSE POSITIVE!!! CANCER HAS NOT SPREAD THAT WAY!!!
Also clear margins so no spread to the chest wall. Way good. Thanks again for those prayers and thoughts!!! Keep those candles burning and those rosaries glowing and dances around the fairy rings. This is an ecumenical group. We welcome all positive thoughts. (We have rosaries blessed from Majagorie(sp?), Lourdes and the Vatican!) Wow and double Wow.
So that brings you uptodate. What a roller coaster emotionally and physically. But do you see how long between events? Young women out there .............. do those breast checks!!!!
I have to go now but this will be the site where we keep all of you informed as to our progress. The next steps are chemo and reconstruction. Hopefully with the false positive on the lymph node we can skip radiation. Blessing to all. Love, Marlyn
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