Today's radiation planning session went very well. It took about 30 minutes for the technicians and doctors to get me placed properly and calculate where to place the dreaded tattoos. I've heard some horror stories about having to stay in the same position with your arms over your head for up to 45 minutes. I'd say that I was in that position for just a few minutes, maybe less than five. Then I was allowed to relax my arms while they were back in their "command central" doing whatever they do. There was one CT scan (which showed those notorious internal mammary nodes to be looking normal) which took less than a minute. The doctors and technicians came out a few times to check and make sure I was comfortable. After they were sure about placement, the techs came out and one of them did 6 quick tattoos. They didn't hurt physically - very small needles were used. I asked about alternatives to the "lifetime" reminders but they had nothing to offer. Only one is likely to ever be visible to the public - it is in my "v-neck" area. And if my skin had any freckles or marks at all in that area, it would probably blend in and be unnoticed.
Dr. Harris told us that they will be able to radiate my chest wall without involving my heart and lungs. That is very encouraging as heart and lung damage has been a real concern. The electron beam technology allows them to calculate angles that can direct the radiation to the right areas and avoid damage to vital organs.
While we were waiting for the valet to fetch our car, I got a call from my medical oncologist and she informed me that my tumor markers (CA 27.29 test) were in the normal range. The top of the range is 38 and I was at 34. That's ten points less than they were seven weeks ago, so I am happy about that.
Today's round trip to Boston was just over four hours. We didn't encounter any unusual traffic on the way in, but it was raining a little when we left for home. And we were leaving just after 3 p.m. which is the beginning of the evening rush hour. Hopefully with the upcoming holidays, we'll be able to trim some time off this run. With students going on semester break and workers using up leftover vacation time, the traffic should gradually decrease during December.
Thursday, November 17, 2011
Tuesday, November 15, 2011
Zaps to begin soon
Just got back from my appointment with Dr. Harris, and we now have a plan. I will go on Thursday for the planning session, which takes about an hour. I'll get five tattoos (not happy about that) to assist with lining me up for the treatments. They will make a custom plate to protect my heart. On 11/29 I will go in for a dry run and CT scan, then radiation will begin on 11/30. There will be 25 treatments to my chest wall, internal mammary nodes and supra-clavicle nodes. An additional 5 treatments (boosts) will be directed at my mastectomy scar line. They will be using electron beam technology as it keeps the radiation closer to the skin and chest wall...shallow...and away from the vital organs.
Not exactly sure about how the holidays will impact all this; but if my calculations are correct, I will be done on January 9th. Now we need Mother Nature to postpone winter weather.
Not exactly sure about how the holidays will impact all this; but if my calculations are correct, I will be done on January 9th. Now we need Mother Nature to postpone winter weather.
Sunday, November 13, 2011
The Hair Journey and Other News
I spent a little time putting together some pictures of my chemo hair experience, which is now five months along. The top left picture shows me getting that pre-chemo buzz cut on June 12. That's when I saw my real hair color for the first time in about 20 years! The bottom right picture shows my hair coming in on November 12 and colored with a little help from L'Oreal. It's just a temporary color but it looks better than the "grandma" white that you see in the picture on the bottom left. I'm pretty happy, at six weeks post-chemo, to have hair that could even take a color!
I had my six weeks follow-up with my oncologist last Wednesday and it was delightfully uneventful. My labs looked good and I feel pretty good, too. Earlier the same day I had an appointment with my new primary care physician, so I am now doubly assured that my ticker is working properly, I weigh 122, my blood pressure is normal and neither doc could feel any unwelcome lumps or bumps.
One cool thing - let's give a big "hurrah" for electronic medical records! My new PCP is part of the Elliot Hospital system. Because they have e-records and Dana Farber is somewhat tied into Elliot, she has access to all of my records that have been generated since we moved here. Even better, they can electronically transmit your prescriptions directly to the pharmacy of your choice, including the mail order guys like Express Scripts. Extremely convenient!!!
I have an appointment on Tuesday with Dr. Harris, my Radiation Oncologist at Dana Farber. I thought this might be the radiation planning session; but based on the confirmation call that I received on Friday, I now think it's just a consultation. I'm sure we'll get started soon. Not looking forward to it, the daily drive is going to be tiring for both of us. This, too, will pass...once it gets started.
Wednesday, October 26, 2011
Expanders are out, everything went well
Just got home about an hour ago. We even stopped and had dinner at Texas Roadhouse (now I know how Rick intends to feed me over the next couple of days).
We got to the hospital around 10:30 and they got me ready. Even though I drank plenty up until about 7:30 this morning, the first attempt at an IV was a failure so I showed the nurse where to make the second attempt. The anesthesiologist was there along with three other nurses - it was quite a party - so the poor nurse was under a lot of pressure!
The doctor came in and marked me up about 11:45 and they took me away at about 12:20. I remember getting from the guerney to the OR table, then it was lights out until I woke up in the Recovery Room about 2:30 or so. Apparently, unbelievably, my Kansas Plastic Surgeon had put in 600 cc tissue expanders rather than the 375 cc ones that he told me he had inserted. So the removal took longer than expected. I guess I missed a big opportunity to be "boobalicious"...lol. It's no wonder those things were so uncomfortable, they were way, way too big for me. Rick was starting to get a little worried because of the additional time involved. But everything was ok.
I was awake in the recovery room for probably 45 minutes. They gave me a snack and a drink, my discharge information and then I got dressed and was out of there. We were at Texas Roadhouse at just past 4 p.m. and we were back in the car at 4:40!
It's nice to be able to take a deep breath and not feel those obnoxious expanders! I'm not in any pain at all, surprisingly. You'd think it might hurt a little. Maybe the anesthesia is still doing its job, or I was already numb from the mastectomies and it's just not going to hurt that much. In any case, I have prescriptions for three days of antibiotics and some Tylenol with Codeine, in case I need it later.
The surgeon told Rick that he "looked around inside" after he removed the expanders and everything looked very good. That is very good, indeed! And he just called to check on me and make sure I was doing well. The care has been excellent!
Recovery should be simple, I can shower tomorrow and resume all of my normal activities except I have a 10 pound weight restriction until I go back to see the doctor in 10-14 days.
I guess next week will include a shopping trip for some prostheses and appropriate bras. That should be another fun experience.
We got to the hospital around 10:30 and they got me ready. Even though I drank plenty up until about 7:30 this morning, the first attempt at an IV was a failure so I showed the nurse where to make the second attempt. The anesthesiologist was there along with three other nurses - it was quite a party - so the poor nurse was under a lot of pressure!
The doctor came in and marked me up about 11:45 and they took me away at about 12:20. I remember getting from the guerney to the OR table, then it was lights out until I woke up in the Recovery Room about 2:30 or so. Apparently, unbelievably, my Kansas Plastic Surgeon had put in 600 cc tissue expanders rather than the 375 cc ones that he told me he had inserted. So the removal took longer than expected. I guess I missed a big opportunity to be "boobalicious"...lol. It's no wonder those things were so uncomfortable, they were way, way too big for me. Rick was starting to get a little worried because of the additional time involved. But everything was ok.
I was awake in the recovery room for probably 45 minutes. They gave me a snack and a drink, my discharge information and then I got dressed and was out of there. We were at Texas Roadhouse at just past 4 p.m. and we were back in the car at 4:40!
It's nice to be able to take a deep breath and not feel those obnoxious expanders! I'm not in any pain at all, surprisingly. You'd think it might hurt a little. Maybe the anesthesia is still doing its job, or I was already numb from the mastectomies and it's just not going to hurt that much. In any case, I have prescriptions for three days of antibiotics and some Tylenol with Codeine, in case I need it later.
The surgeon told Rick that he "looked around inside" after he removed the expanders and everything looked very good. That is very good, indeed! And he just called to check on me and make sure I was doing well. The care has been excellent!
Recovery should be simple, I can shower tomorrow and resume all of my normal activities except I have a 10 pound weight restriction until I go back to see the doctor in 10-14 days.
I guess next week will include a shopping trip for some prostheses and appropriate bras. That should be another fun experience.
Wednesday, October 19, 2011
Surgery confirmed for October 26th
We are on vacation, hoping to get away from some of the breast cancer stress. The weather here in Florida has been less than ideal for beach and pool, but just fine for spending time with friends, shopping, dining, and a little casino action.
Today I got a call from Faulkner Hospital in Boston, and I will be going there on Tuesday the 25th for my pre-op physical and tests. I'll have to undergo an EKG, although hopefully I won't need a chest xray or any lab work as I have test results that are less than 30 days old.
Surgery will be on Wednesday at 11:30. I have to be there at 10:00, so that is not too bad. It is an "easy" surgery (if there is such a thing) and I'll go home later in the afternoon. The tissue expanders will be removed and i will be able to take a deep breath again. I'm not all that upset about this turn of events, and I know it's the right thing so that we can proceed with radiation.
Wouldn't it be nice if one of my previous surgeons had mentioned to me, before my mastectomies and immediate reconstruction back in April, that these tisue expanders might cause a problem with radiation? It's not like we didn't know that radiation would be necessary. It took me about 30 minutes of internet research to figure out that partially filled tissue expanders would cause a problem with radiation planning, where pinpoint accuracy is necessary.
Someone asked me who was the "project manager" for my care. Breast cancer treatment involves, at a minimum, a breast surgeon, plastic surgeon, medical oncologist, radiation oncologist and your primary care physician. At this point, I am the project manager. It's my body, someone has to take control, and I think it had better be my job.
Today I got a call from Faulkner Hospital in Boston, and I will be going there on Tuesday the 25th for my pre-op physical and tests. I'll have to undergo an EKG, although hopefully I won't need a chest xray or any lab work as I have test results that are less than 30 days old.
Surgery will be on Wednesday at 11:30. I have to be there at 10:00, so that is not too bad. It is an "easy" surgery (if there is such a thing) and I'll go home later in the afternoon. The tissue expanders will be removed and i will be able to take a deep breath again. I'm not all that upset about this turn of events, and I know it's the right thing so that we can proceed with radiation.
Wouldn't it be nice if one of my previous surgeons had mentioned to me, before my mastectomies and immediate reconstruction back in April, that these tisue expanders might cause a problem with radiation? It's not like we didn't know that radiation would be necessary. It took me about 30 minutes of internet research to figure out that partially filled tissue expanders would cause a problem with radiation planning, where pinpoint accuracy is necessary.
Someone asked me who was the "project manager" for my care. Breast cancer treatment involves, at a minimum, a breast surgeon, plastic surgeon, medical oncologist, radiation oncologist and your primary care physician. At this point, I am the project manager. It's my body, someone has to take control, and I think it had better be my job.
Friday, October 14, 2011
Complicated doesn't begin to describe it...
I had my consultation with the Dana Farber Radiation Oncologist (RO) today, Dr. Jay Harris, and we were very impressed. First, a resident and a medical student came in and took my history and examined me. Then they went off and shared their findings with Dr. Harris. Dr. Katz (my first RO) had sent some information, also. So Dr. Harris was fully armed with enough information to make the right recommendations.
His first request is that I have the left tissue expander removed. It is covering my heart, and he is concerned that if it remains, he will not be able to radiate my chest wall without doing collateral damage. With the TE out of there, he will use electron beam technology which can be pointed at the proper angles to avoid heart and lung damage. I agreed that I would have BOTH of them removed. I hate them; if one has to go, they can both go. He was pleased with that decision. I have a tentative surgery date of October 26th with Dr. Hergrueter at Brigham & Women's.
Dr. Harris will then radiate the internal mammary nodes that showed up as cancerous on the earlier PET/CT scan. And he will radiate the supra-clavical nodes (in the area of the neck). And the mastectomy scar line will get an extra blast.
With all this, I will have a 30-50% risk of spontaneous broken ribs. My left rib cage took about 50% of the radiation from last year's Mammosite, so it's going to get a really big radiation dose, which weakens the bones. They don't see this as life-threatening, although if it happens it will be quite painful as there is no treatment. He doesn't think that my heart, lungs, or thyroid will be impacted. Also, he is not going to radiate the axilla area (armpit) so that should cut the risk of developing lymphadema.
Radiation reduces my risk of recurrence from 30% to 10%. And oh, it appears that this cancer was not a recurrence but rather what was missed from the first round of surgery and radiation. It showed up in the area of the biopsy scar, and as I have suspected all along, cancer cells were trapped in the hematomas then released as the hematomas dissolved. The radiologist at the Breast Center at Menorah was the only one who was suspicious, back in December, and it turns out she was probably right on. She wanted to do a biopsy and both the medical oncologist and the breast surgeon thought it was nothing.
Having radiation at Dana Farber will involve about a 3-4 hour round trip each and every weekday for seven weeks. We will check out public transportation options to see if there is a way to minimize the commute. This will get very interesting with traffic and winter weather on the horizon.
I am very much looking forward to our Florida beach vacation next week!!!
His first request is that I have the left tissue expander removed. It is covering my heart, and he is concerned that if it remains, he will not be able to radiate my chest wall without doing collateral damage. With the TE out of there, he will use electron beam technology which can be pointed at the proper angles to avoid heart and lung damage. I agreed that I would have BOTH of them removed. I hate them; if one has to go, they can both go. He was pleased with that decision. I have a tentative surgery date of October 26th with Dr. Hergrueter at Brigham & Women's.
Dr. Harris will then radiate the internal mammary nodes that showed up as cancerous on the earlier PET/CT scan. And he will radiate the supra-clavical nodes (in the area of the neck). And the mastectomy scar line will get an extra blast.
With all this, I will have a 30-50% risk of spontaneous broken ribs. My left rib cage took about 50% of the radiation from last year's Mammosite, so it's going to get a really big radiation dose, which weakens the bones. They don't see this as life-threatening, although if it happens it will be quite painful as there is no treatment. He doesn't think that my heart, lungs, or thyroid will be impacted. Also, he is not going to radiate the axilla area (armpit) so that should cut the risk of developing lymphadema.
Radiation reduces my risk of recurrence from 30% to 10%. And oh, it appears that this cancer was not a recurrence but rather what was missed from the first round of surgery and radiation. It showed up in the area of the biopsy scar, and as I have suspected all along, cancer cells were trapped in the hematomas then released as the hematomas dissolved. The radiologist at the Breast Center at Menorah was the only one who was suspicious, back in December, and it turns out she was probably right on. She wanted to do a biopsy and both the medical oncologist and the breast surgeon thought it was nothing.
Having radiation at Dana Farber will involve about a 3-4 hour round trip each and every weekday for seven weeks. We will check out public transportation options to see if there is a way to minimize the commute. This will get very interesting with traffic and winter weather on the horizon.
I am very much looking forward to our Florida beach vacation next week!!!
Wednesday, October 12, 2011
It's all gone!!!
Yes, it is! I had a PET/CT scan yesterday and I got the best news of my life this morning - the cancer is ALL GONE! After 16 months of biopsies, worries, waiting, treatments, more biopsies, more worrying and more waiting, my family, friends and I can all enjoy a collective sigh of relief! Those nasty internal mammary nodes didn't light up; actually nothing from my eyebrows to my knees showed any signs of cancer.
I cannot begin to express how I am feeling right now. It is now exactly two weeks after my last chemo and I am going to forever celebrate 9/28/2011 as my "cancerversary." Undergoing chemo was the hardest thing I've ever done in my life, and it seems appropriate to celebrate its end as I now start to count off the days of my life as a true "survivor."
I'll be consulting with Dr. Harris this Friday. He is the head of Radiation Oncology at Dana Farber and one of the best in the country. That said, I am totally impressed with the knowledge and compassion of Dr. Matthew Katz, who is part of the Elliott Hopsital Oncology Department and with whom I had my first consult. He ordered the PET and he called me less than 24 hours after the test with the results. His credentials are pretty impressive, too.
http://www.roa-ne.com/staff/dr-matthew-katz-md.php
I'm borrowing a saying from Eleanor Roosevelt. "A woman is like a teabag. You never know how strong she is until she gets into hot water."
I cannot begin to express how I am feeling right now. It is now exactly two weeks after my last chemo and I am going to forever celebrate 9/28/2011 as my "cancerversary." Undergoing chemo was the hardest thing I've ever done in my life, and it seems appropriate to celebrate its end as I now start to count off the days of my life as a true "survivor."
I'll be consulting with Dr. Harris this Friday. He is the head of Radiation Oncology at Dana Farber and one of the best in the country. That said, I am totally impressed with the knowledge and compassion of Dr. Matthew Katz, who is part of the Elliott Hopsital Oncology Department and with whom I had my first consult. He ordered the PET and he called me less than 24 hours after the test with the results. His credentials are pretty impressive, too.
http://www.roa-ne.com/staff/dr-matthew-katz-md.php
I'm borrowing a saying from Eleanor Roosevelt. "A woman is like a teabag. You never know how strong she is until she gets into hot water."
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