This is the least explained and researched subject thus far. Since my tumour was ER (estrogen receptor) positive, it is believed that I would benefit from 5 years of tamoxifen treatment.
Tamoxifen is an antagonist of the estrogen receptor in breast tissue. It has been the standard endocrine (anti-estrogen) therapy for hormone-positive early breast cancer in post-menopausal women, although aromatase inhibitors have been proposed. This is from wikipedia.
Apparently the risks outweigh the benefits, but the risks sound a bit scary. Given my history of migraine headaches which puts me at greater risk of stroke when things like birth control pills (hormones) are added to the mix, I'm not sure this is right for me. The 3 migraines in 12 days from the progesterone further support that. And I do believe these headaches are from the progesterone. I was diagnosed with cancer on April 16th, and the stress of that diagnosis doesn't appear to have caused any headaches. But less than 48 hours after starting the progesterone, I had my first migraine since my diagnosis. Second followed 6 days later, and a third 6 days after that, even when I reduced the dosage. I'm just sayin'.
Sunday, June 27, 2010
Radiation
Just a brief bit about radiation, again, as I understand it.
Necessary to attack the area of the tumour. Chemo works to destroy cancer cells throughout the body. Because cells would have to multiply by the millions before forming anything large enough to detect any other way, the chemo prevents that. The chances of more cancer cells being present in my body are greater because, well, I had a cancerous tumour.
The tumour was surgically removed, which could change the patterns of blood flow in that area, which could then render the chemo ineffective, in that area. Which is why the radiation is necessary. In that area. My understanding of Dr. H's explanation.
When I have my last round of chemo, I'll contact Dr. H's office and set up my schedule for my 6 weeks of weekday radiation. I'll have an appointment before I start, for them to calibrate what they need, to customize the radiation for me. I'll get two little tattoo dots that the radiology techs will use to properly orient me for my treatments. I'll start on a Monday, go every weekday for 6 weeks, and check in on one of those days, probably Tuesdays, with Dr. H, to see how I'm progressing.
The good thing about the chemo is that it pushes back the radiation schedule to the fall, when the kids are back in school. Much less disruptive for our family and easier for this SAHM, who finds herself home even less these days!
Necessary to attack the area of the tumour. Chemo works to destroy cancer cells throughout the body. Because cells would have to multiply by the millions before forming anything large enough to detect any other way, the chemo prevents that. The chances of more cancer cells being present in my body are greater because, well, I had a cancerous tumour.
The tumour was surgically removed, which could change the patterns of blood flow in that area, which could then render the chemo ineffective, in that area. Which is why the radiation is necessary. In that area. My understanding of Dr. H's explanation.
When I have my last round of chemo, I'll contact Dr. H's office and set up my schedule for my 6 weeks of weekday radiation. I'll have an appointment before I start, for them to calibrate what they need, to customize the radiation for me. I'll get two little tattoo dots that the radiology techs will use to properly orient me for my treatments. I'll start on a Monday, go every weekday for 6 weeks, and check in on one of those days, probably Tuesdays, with Dr. H, to see how I'm progressing.
The good thing about the chemo is that it pushes back the radiation schedule to the fall, when the kids are back in school. Much less disruptive for our family and easier for this SAHM, who finds herself home even less these days!
Chemo
Is a yes.
I wrongly assumed that, when my node biopsy came back clean, radiation was all I was facing. The cancer hadn't spread. Considered Stage 1. I thought I would go through six weeks of radiation and be done.
Wrong.
The results of the onkotyping of my tumour are what this decision is based on. The tumour is analyzed and given a breast cancer recurrence score, based on past studies. I believe it's over about a twenty year period, but I've been quoted so many stats and studies recently that I could easily confuse the information. Consider this a very lay interpretation and explanation.
My score was 23. Almost dead in the middle. No clear path is indicated by a score such as this. Another decision I would have to make, though all of my oncologists weighed in on this.
With a score of 23, node negative, ER positive, the risk of the cancer recurring in 10 years, with radiation and 5 years of tamoxifen treatments, is 15%. Add chemo to the attack plan, followed by the radiation and tamoxifen, the that risk is reduced to less than 5%.
My surgeon said she would recommend the chemo, and left it to the medical oncologist to elaborate. She did, and concurred with the surgeon, as did the radiation oncologist. Citing my age (as young -- funny to hear that) and health, as factors in support of that argument, they all believe that I'm equipped to battle aggressively.
The chemo will consist of 4 treatments, given by IV, every 3 weeks. Each treatment takes 3-4 hours. Benadryl is administered with one of the types of chemo I'll be receiving, but I can't recall which one. For that reason, I won't be allowed to drive myself home.
The two types of chemo I will be receiving are cytoxan and taxotere These links are the actual information that was printed and provided to my by Dr. N. Interesting and scary, especially, obviously, the side effects. But you can get the same jolt if you read the list of side effects you receive with any prescription you fill. They have to list EVERTHING. And they do.
Some of the side effects conflict, between these two types of chemo. One may cause loss of appetite, the other, fluid retention. What might the outcome of that look like? Nausea is a given and hair loss seems very likely. I had debated getting dreads before starting chemo, but I'm still on the fence. If I get dreads, I won't lose my hair, and it won't be about just 'trying' out the dreads. On the other had, if I get them and experience hair loss, it might hold the hair together a bit longer. I figure if I don't get them, I won't experience hair loss -- that's the way things usually play out for me!
The prospect of hair loss has prompted the most discussion with friends, family, and of course Marc. He's all for a blond wig! I told him I'd wear it at home, but it probably wouldn't see the outside world. I'm leaning towards scarves. It will be hot and humid and wigs can be hot and scratchy. I've already visited etsy and favourited a few scarves and head covers designed just for this purpose. I love etsy! Pier and I are in agreement about the scarves and we're both etsy fans.
In my initial meeting with Dr. N, we had discussed starting chemo July 1st, which is next week. But at that time, things were still unsettled with my potential menopausal issues. Still are. So that date, right now, is July 13th, pending closure to those other things.
Good and bad, this potential summer of chemo. Good, in that it's once every 3 weeks, so we're not chained to home by my schedule, as we would have been with 6 weeks of radiation. Bad, as staying out of the sun is something one must do while undergoing chemo. But upon further investigation, I can wear sunscreen and am simply more sensitive to the sun. I might possibly break out in a rash. Nothing like undermining the treatments or causing additional damage.
But our PA summers are hot and humid and if I feel as crappy as is written, I can't see myself even feeling like hiding under a brolly poolside. I just hope I'm wrong. The summer will indeed be boring for my kids if that's the case.
That said, again, my wonderful family and friends have come through with offers to take my kids, shuttle and chaffeur them, entertain them. My parents have offered to travel and stay with us if I feel overwhelmed and lousy. I can't say enough how much easier going through this is, with this kind of love and support. It take an army to do all sorts of things, and I'm so blessed to have one behind me.
I wrongly assumed that, when my node biopsy came back clean, radiation was all I was facing. The cancer hadn't spread. Considered Stage 1. I thought I would go through six weeks of radiation and be done.
Wrong.
The results of the onkotyping of my tumour are what this decision is based on. The tumour is analyzed and given a breast cancer recurrence score, based on past studies. I believe it's over about a twenty year period, but I've been quoted so many stats and studies recently that I could easily confuse the information. Consider this a very lay interpretation and explanation.
My score was 23. Almost dead in the middle. No clear path is indicated by a score such as this. Another decision I would have to make, though all of my oncologists weighed in on this.
With a score of 23, node negative, ER positive, the risk of the cancer recurring in 10 years, with radiation and 5 years of tamoxifen treatments, is 15%. Add chemo to the attack plan, followed by the radiation and tamoxifen, the that risk is reduced to less than 5%.
My surgeon said she would recommend the chemo, and left it to the medical oncologist to elaborate. She did, and concurred with the surgeon, as did the radiation oncologist. Citing my age (as young -- funny to hear that) and health, as factors in support of that argument, they all believe that I'm equipped to battle aggressively.
The chemo will consist of 4 treatments, given by IV, every 3 weeks. Each treatment takes 3-4 hours. Benadryl is administered with one of the types of chemo I'll be receiving, but I can't recall which one. For that reason, I won't be allowed to drive myself home.
The two types of chemo I will be receiving are cytoxan and taxotere These links are the actual information that was printed and provided to my by Dr. N. Interesting and scary, especially, obviously, the side effects. But you can get the same jolt if you read the list of side effects you receive with any prescription you fill. They have to list EVERTHING. And they do.
Some of the side effects conflict, between these two types of chemo. One may cause loss of appetite, the other, fluid retention. What might the outcome of that look like? Nausea is a given and hair loss seems very likely. I had debated getting dreads before starting chemo, but I'm still on the fence. If I get dreads, I won't lose my hair, and it won't be about just 'trying' out the dreads. On the other had, if I get them and experience hair loss, it might hold the hair together a bit longer. I figure if I don't get them, I won't experience hair loss -- that's the way things usually play out for me!
The prospect of hair loss has prompted the most discussion with friends, family, and of course Marc. He's all for a blond wig! I told him I'd wear it at home, but it probably wouldn't see the outside world. I'm leaning towards scarves. It will be hot and humid and wigs can be hot and scratchy. I've already visited etsy and favourited a few scarves and head covers designed just for this purpose. I love etsy! Pier and I are in agreement about the scarves and we're both etsy fans.
In my initial meeting with Dr. N, we had discussed starting chemo July 1st, which is next week. But at that time, things were still unsettled with my potential menopausal issues. Still are. So that date, right now, is July 13th, pending closure to those other things.
Good and bad, this potential summer of chemo. Good, in that it's once every 3 weeks, so we're not chained to home by my schedule, as we would have been with 6 weeks of radiation. Bad, as staying out of the sun is something one must do while undergoing chemo. But upon further investigation, I can wear sunscreen and am simply more sensitive to the sun. I might possibly break out in a rash. Nothing like undermining the treatments or causing additional damage.
But our PA summers are hot and humid and if I feel as crappy as is written, I can't see myself even feeling like hiding under a brolly poolside. I just hope I'm wrong. The summer will indeed be boring for my kids if that's the case.
That said, again, my wonderful family and friends have come through with offers to take my kids, shuttle and chaffeur them, entertain them. My parents have offered to travel and stay with us if I feel overwhelmed and lousy. I can't say enough how much easier going through this is, with this kind of love and support. It take an army to do all sorts of things, and I'm so blessed to have one behind me.
What's Next?
We returned from Winnipeg and hit the ground running. Beginning of June, 3 weeks left of school, and many tests and appointments for me. That first week was my bone scan, which involved 2 visits to the hospital, AMH. The first, to inject the dye, and the second, 3 hours later, for the actual scan. The results of that were negative, good, nothing to worry about.
That second week of June was the busy one, with lots of school year end stuff interspersed with 4 doctor appointments. The first, was with Dr. N. medical oncologist. Though my surgeon had called the day before with the results of my oncotyping, Dr. N was the one who explained it in greater detail.
My second appointment was with my OBGyn, as, with all of this going on, mother nature has thrown a bit of a curve ball at me and put my menstrual cycle all out of whack. Menopause? Possibly. But whatever the cause, the situation must be rectified before I can proceed with any treatment. My menstrual cycle has been pretty irratic and irregular for the past couple of years, but has become unmanageably more so. I had a seven week stretch with no period, followed by what is, now, a month long menses. Inconveniently so. Since I was scheduled, as per my surgeon, for a chest/abdomen/pelvic CT for the following week, my OBGyn decided to put me on progesterone to hopefully slow the bleeding, and see what the results of the CT scan might show. (that was at 2 weeks. the progesterone has given me 3 migraine headaches in 12 days, so I, at the doctor's recommendation, cut back the dosage. good and bad, because the flow became heavier again, and the headaches continued. I had cut the dose after 2 headaches, but still got a thrid)
That same afternoon, I visited my surgeon's office for genetic testing, for the BRCA1 and BRCA2 genes, breast cancer genes. Nothing is simple here. The test was the easy part. Different insurance companies pay for different tests and services. Because they can. I was told by Jacki that the lab running the tests would call me to advise where I stood with that. And they did, the next week. I was told that my insurance company would pay for the tests for the first two genes. If positive, there would be no need to proceed further. If negative, tests would/should be run for mutations. Which my insurance doesn't cover. Another $700 for that. Figures. I told them we would wait for the outcome of the first series of test.
Last doctor's visit Friday morning, Dr. H, radiation oncologist. We were joined by resident Philippe, who's last name I don't recall (also because he was both referred to and introduced by, his first name) Radiation is a given. Six weeks, 5X/week. In and out, fairly straightforward, some minor side effects. He explained that while fatigue was common, it might also be caused by the change of pace during radation. Some people can travel an hour in each direction to receive their treatments. I'm fortunate in that I'll be driving 10-15 to AMH, using valet parking which is a deal with the monthly $10 pass, and should be there and back in about hour each day.
The following Tuesday, the 15th, was my CT scan. Another big chunk of time. I took my computer and some of you were lucky enough to get emails from me while I sat and drank two bottles of that barium chalk shake. Mmmmm. Not! Whether it's chilled out of necessity or chilled to make it go down easier, I'm glad they do it. I can't imagine drinking that stuff warm. The straw that's provided helps too. But it's like downing two 454 ml sodas -- soon, you've gotta go. And you're not allowed to! I stopped typing about 25 minutes before the scheduled time for the scan, cuz I just could not concentrate. Thankfully, they called me early and got the scan overwith and done. And the last of my tests and appointments. For a little while.
That second week of June was the busy one, with lots of school year end stuff interspersed with 4 doctor appointments. The first, was with Dr. N. medical oncologist. Though my surgeon had called the day before with the results of my oncotyping, Dr. N was the one who explained it in greater detail.
My second appointment was with my OBGyn, as, with all of this going on, mother nature has thrown a bit of a curve ball at me and put my menstrual cycle all out of whack. Menopause? Possibly. But whatever the cause, the situation must be rectified before I can proceed with any treatment. My menstrual cycle has been pretty irratic and irregular for the past couple of years, but has become unmanageably more so. I had a seven week stretch with no period, followed by what is, now, a month long menses. Inconveniently so. Since I was scheduled, as per my surgeon, for a chest/abdomen/pelvic CT for the following week, my OBGyn decided to put me on progesterone to hopefully slow the bleeding, and see what the results of the CT scan might show. (that was at 2 weeks. the progesterone has given me 3 migraine headaches in 12 days, so I, at the doctor's recommendation, cut back the dosage. good and bad, because the flow became heavier again, and the headaches continued. I had cut the dose after 2 headaches, but still got a thrid)
That same afternoon, I visited my surgeon's office for genetic testing, for the BRCA1 and BRCA2 genes, breast cancer genes. Nothing is simple here. The test was the easy part. Different insurance companies pay for different tests and services. Because they can. I was told by Jacki that the lab running the tests would call me to advise where I stood with that. And they did, the next week. I was told that my insurance company would pay for the tests for the first two genes. If positive, there would be no need to proceed further. If negative, tests would/should be run for mutations. Which my insurance doesn't cover. Another $700 for that. Figures. I told them we would wait for the outcome of the first series of test.
Last doctor's visit Friday morning, Dr. H, radiation oncologist. We were joined by resident Philippe, who's last name I don't recall (also because he was both referred to and introduced by, his first name) Radiation is a given. Six weeks, 5X/week. In and out, fairly straightforward, some minor side effects. He explained that while fatigue was common, it might also be caused by the change of pace during radation. Some people can travel an hour in each direction to receive their treatments. I'm fortunate in that I'll be driving 10-15 to AMH, using valet parking which is a deal with the monthly $10 pass, and should be there and back in about hour each day.
The following Tuesday, the 15th, was my CT scan. Another big chunk of time. I took my computer and some of you were lucky enough to get emails from me while I sat and drank two bottles of that barium chalk shake. Mmmmm. Not! Whether it's chilled out of necessity or chilled to make it go down easier, I'm glad they do it. I can't imagine drinking that stuff warm. The straw that's provided helps too. But it's like downing two 454 ml sodas -- soon, you've gotta go. And you're not allowed to! I stopped typing about 25 minutes before the scheduled time for the scan, cuz I just could not concentrate. Thankfully, they called me early and got the scan overwith and done. And the last of my tests and appointments. For a little while.
My Potluck Friends
That's what we call ourselves. We've been friends for over 20 years, brought together by a common employer, common position. Our first dinner wasn't a potluck, just dinner out. We decided that we'd like to keep getting together for dinner, but thought it would be more fun to take turns hosting potlucks in our homes.
I think we're all pretty good cooks and have gotten better throughout the years, with the challenge of one upping each other's fabulous recipes. Many of my PA friends know my Chorizo Corn Chowder, a favourite I bring to soup suppers or any other gathering where soup's appropriate. That's a Bonnie recipe. Everyone BUT my family loves it. I make whole pots, double the recipe, and freeze it in single servings for me!
We thought we should put a cook book together, for ourselves. We're good at emailing recipes to each other after a get together, but the book has fallen by the wayside.
I left Winnipeg 13 years ago for PA, Tracey, 11 years ago, heading south to TX. But whenever one of us makes it back to the Peg, we get together. And two years ago, we finally took to the road. The girls all traveled here and we visited NYC, among other places. We talk about doing it again and I'm sure we will one day. We such a FABULOUS long weekend together, got along so well, and made many treasured memories.
That's the last time I saw Trac, as our times in Winnipeg don't usually coincide. So I knew not to expect to see her in Winnipeg last month. But I was so pleased when Bonz, Brenda, Monique and Patti worked to arrange their schedule around our short 4 1/2 days there, so that we could get together. Taking either 1/2 or a full day off, we met at Monique's Friday morning for brunch. In the end Patti couldn't make it, as she was heading to Wisconsin for the weekend. Funny enough, Monique was heading out at noon for MN.
Rather than completely repeat myself, you can read about my Friday morning in Winnipeg on my other blog. But I did want to repeat the fact that these girls, in Winnipeg and TX, along with my sister, arranged, through my friend here, Elise, for housecleaning, the first of which was while we were in Winnipeg. What a pleasure to come home to a clean and dust/dust bunny free place! And there are more cleanings in my future, to be scheduled at my convenience.
They also presented me with a beautiful necklace, 'Faith', which I've been wearing 'faithfully', since I received it. It's a reminder to stay strong, and a reminder of the love and support I have. I'm so blessed.
Did I mention that they're great cooks too?!
Can't wait to see you girls again. Love you all, Brenda, Monique, Bonnie, Patti and Tracey.
Wednesday, June 16, 2010
Flowers. For me
Overwhelmed. Again.
I should have devoted a post to the day before surgery, but didn't. It was another busy Monday. But full of wonderful surprises.
I knew Pastor Kay was coming over to sit with me the day before surgery. To talk. To offer communion and prayers. So when there was a knock at the door around the time I was expecting PKay, I was suprised and delighted to see my old friend Lynn at the door.
One of my first and greatest friends here in PA, we have lost touch over the recent years. Our childrens' activities take us in different directions, as has as life. Lynn worked full time and went back to school to become a nurse. She did, maintaining a crazy schedule for years, and graduating a year ago. We finally met for lunch last summer and thought we'd get together more regularly after that. And as so often happens, it didn't happen. But Lynn was back in the loop for book club, so there were more opportunities to see her. Still not regularly enough to have shared my news face to face. She received the email I sent to local and faraway friends. On the advice of her husband, who reminded her I was telling Nick and Gaby over the weekend, she waited til Monday to come over, bearing gifts, love and support. An uplifting music CD, a beautiful journal, and a card bearing a warm and encouraging message. I was touched and just so very happy to see her. And bummed because I knew our visit couldn't be as long as I would have liked. We enjoyed the few minutes we had, and she departed once PKay arrived.
PKay also arrived bearing gifts. A beautiful blue prayer shawl, made by the ladies of the Lamb Circle, at our church. Again I was touched. The goodness of people and their eagerness to reach out and help is awesome. Inspiring. Welcome.
PKay spent over an hour with me. We talked. Got off topic, as we often do. She offered prayers and shared communion.
My pastor is the mother of a soon to be sophomore boy, just like me. With that in common, I think of her probably as a friend first. And while I guess your pastor should be your friend, I sometimes forget that she's also my pastor. I just didn't have the same dilemma growing up in the Catholic church!
Friend and pastor, she's wonderful in both roles, and a blessing to me.
Since I titled this post Flowers, I should mention them.
The day after surgery, I received a delivery. A beautiful arrangement from Marc's office. Over those next few days, a lovely basket of flowers from the Godoskis, all. A box of beautiful cut flowers from my Mom and Dad, sister and her family. Also left on my doorstep was a vase of spring pinks, from my Godmother. All far far away in Winnipeg, but close in my heart.
Cindy brought these sunflowers over on Sunday. Bright and sunny.
An edible assortment from Joanne, who works with Marc.
Cards bearing heartfelt notes and well wishes came in the mail. My friend Peg gave me an inspirational book when she and Sandi made the trip my way, for coffee. Elizabeth left a mysterious bag bearing witch hazel and lavender. Something we had discussed.
While still facing uncertainly in terms of treatment at that point, I was certainly distracted from giving it too much thought. In an absolutely wonderful way. Wow.
Your friends certainly make sure you eat GOOD when you have cancer!
It all started the week after receiving my diagnosis. I got the news on a Friday and was fortunate to have an 8:30 appointment with my surgical oncologist the following Monday. It was a busy day, as Mondays had evolved into this spring. I had an appointment to take Roxi to the vet at 10:30, Gaby had early dismissal from which I was thinking of picking her up, in order to get her to a hair appointment with Annmarie. That was for 2:00. We had to make sure not to dilly dally too much, as Nick had his 3:45 guitar lesson, after which we had to gobble dinner and get Gaby to her 6:00 soccer practice.
With the emotional newness of my diagnosis, I was quickly moved to tears upon listening to Elise's phone message while waiting in the doctor's office. She said she knew I had a busy day, a lot on my plate, and would I let her bring dinner over. I was touched and very receptive to the idea, though the thought did cross my mind that Nick and Gaby might get suspicious. Remember, they knew nothing at this point.
Well, my worries were all for naught. When I answered their usual question "What's for dinner?" with "I'm not sure. Mrs. Seyfried's bringing dinner over to us tonight" no one batted an eye.
She and Julie brought over a huge pan of chicken enchilladas, salad and triple chocolate mocha cookies. Everything was yummy and lasted for another 2 meals. I had thought about freezing some of it, but before I could give it another thought, everything was gone.
Surgery was scheduled for another 3 weeks down the road, and I agreed to further offers of meals during that time. After Marc's scrumptious lasagna on the day of my surgery, of which there exist no photos, Nary brought over Chinese noodles and a beef and beans dish. Another winner, and so good that Gaby ate the noodles cold for lunch, at school, for the rest of the week.
Elise had called to ask if I was ready for Peace meals, those prepared by our church members. I said I would love one and Thursday would work well for us. I got suspicious when she called to confirm the time SHE should bring it over. Now I must mention that Elise is a fabulous cook and baker, and I would love to eat meals prepared by her every day. But I didn't want her to go to all that trouble again.
But she did.
Pretzel chicken over polenta served with cheese sauce a la Rachael Ray. Sensational! Oh and of course a love salad and chocolatey frosted cake for dessert. The name escapes me but I enjoyed it for a few more days after all of the chicken was gone.
We were generously provided with meals for three days, which served us into the weekend.
And it started again on the following Monday. I was shuttling Gaby to soccer practice, so I missed my dear friend Kathy's delivery, but I certainly enjoyed it!
She had mentioned she was going to bring this tortilla soup which sounded yummy. And it was! With grated cheese, avocado and sour cream for garnish, and home made tortilla strips to go with it. That was a bowl in a meal. But she had also brought chicken enchilladas and corn on the cob. And a pitcher of real margaritas for the grown ups!
We didn't even touch the enchillas or corn, so it worked out very well that Lisa brought over a pasta casserole the next morning, ready for freezing.
A riccotta pasta casserole, ready for either oven or freezer. This one went south, with much appreciation. So did the Texas toast that accompanied it. Of course we couldn't freeze the salad, and the chocolate covered pretzels didn't need to go there either.
The casserole didn't stay frozen long though. The following week we were readying for our trip to Canada, and it served as dinner both Monday and Tuesday. And it was delicious.
Wednesday saw Elizabeth appear at our door bearing gifts in a giant princess bag.
Seasoned chicken breasts, brown rice and a yummy green salad. Perfect. And ample! I was eating dinners for lunches and there was still leftovers. I was also nibbling on the cold rice whenever I'd open the fridge -- can't resist!
So when Carole brought over Thursday's meal of roast beef, baked potatoes and another beautiful salad, we were running out of room in the fridge! The kids love roast beef sandwiches, and we probably used more of the potatoes fried up over the next few days. The salad, once we finished Elizabeth's, lasted into the weekend.
They had come over early so the girls could play for awhile and I let them leave without getting a picture of Carole and the food. Still got the food though! That's actually Elizabeth's salad from the day before.
Once again the meals took us into the weekend. Marc and I actually dined in NYC that Saturday night, and we all ate at the golf course on the Sunday. (one of those food minimum/end of the month things). So that was two weeks of minimal cooking for me. Which meant quick runs to the grocery store for not much more than milk and fruit. With Lisa's casserole covering those last two meals before we left for Canada, I had had a pretty easy time in the kitchen.
In Canada, meals were prepared for us. Between different family members, the wedding of course, and dining out, another week passed without me really lifting a untensil.
Spoiled? Yeah, I think so. But ever so grateful.
Jacki
Since I've had 3 scheduled blocks of time with Jacki, you'd think there would be at least one post about her, here. And you'd be right. To think that.
I have no reason, no excuse, as to why there has not yet been a post entitled 'Jacki' and perhaps even a 'Jacki II', and 'Jacki the 3rd'. I'm just getting around to it now, even though I met Jacki TWO months ago. That makes me even more behind, if you're keeping track, as I am.
I met Jacki on my second visit to my surgeon's office. With diagnosis confirmed, on the morning of April 19th, Marc and I met first with the surgeon. She provided us with the pathology report of the tumour, all good from her perspective, laid out the surgical options, which were lumpectomy or mastectomy -- no greater success with one than the other, discussed the medical and radiation dynamics of the treatment, and then told us we'd next be meeting with Jacki. (In looking back over previous posts, I realize that I didn't really dedicate a post to this appointment. I think it's an important missing bit of information that I should make sure I add at some point, both for myself and anyone else following along. The appointment wasn't as rushed as I might have made it sound -- just want to stay on the Jacki track)
While Marc was comfortable talking to the surgeon about the options she was presenting -- I mean after all, its science -- he didn't fare as well with Jacki.
I'm guessing Jacki's a nurse, nurse practitioner, I'm not sure. I feel that by asking I'm questioning their ability and qualifications, when in fact I'm just being nosy! Jacki's job that day was to educate me about lymphedema and its risks and prevention. With the sentinel node biopsy, the lymphatic system would be disrupted and possibly not function properly if I didn't take added precautions with my left arm and hand. No more vein puncture or blood pressure. Care in not overloading that side, with both weight and/or activity, not easy as I'm left handed. And an overall increased awareness of my hand and arm. Staying on top of any changes.
Lymphedema is an unusual accumulation of lymph fluid in the tissues of the arms or legs of a patient due to a malfunction of, or injury to, the lymphatic system. Jacki explained how we would measure my 'normal' prior to surgery, using some fabulous new technology, and I would be monitored for the 2-3 years following surgery, when my risk would be greatest.
She gave me a brochure to add to my beginning-to-bulge folder of cancer stuff. For education purposes, and perhaps as motivation to stay on top of it, there were photographs of the various stages of lymphedema. That was a little too much for Marc. When I looked at him, he had turned a greyer shade of grey. I patted him on his leg and assured him I'd get us through this. And we both laughed! Cuz watching loved ones in pain and suffering isn't easy, and that's the toughest part for Marc in all of this. I know he helps in other ways. We all have our strengths and weaknesses. And I'm lucky enough to have a variety of supportive family and friends, with a variety of strengths to offer. I'm covered in so many ways.
Back to Jacki. Jacki's very matter of fact, planning her role in all of this, for the next 3 or so years of my future. Its was very reassuring, way back there at the beginning, to hear her talk that way.
Jacki's relaxed, easy going. You never feel rushed with her. She likes to talk. And, since I also like to talk, I also noticed that she's good listener. She encourages questions and takes the time to cover anything you want to know. Her voice is both distinctive and relaxing. Familiar and soothing. You feel like she gives you as much time as you need. And like all of those amazing women at the breast centre, you feel better and so much more confident after spending time with her.
That was important at the beginning. Still is, but even more important then. So I looked forward to my appointment a few days later, to do the baseline reading for monitoring my lymphatic system. (I am SO not the science person and I apologize to those who are, those in health care and especially those I'm writing about! This is for me and those who dare to read it. And those who know me are generally aware of my limitations when it comes to science. But if anyone would like to support my posts with accurate information, links, that sort of thing, feel free!)
I had to remove my shoes and all jewelry. That wedding band is always difficult to remove, but it had to go too. I had to lay still for several minutes, with things hooked up to various parts (can't even remember which parts) and think of something that would always make me happy, and thus, stress free. I chose to think about tucking Gaby into her bed. When she was younger, I would always lay down with her. As she gets older, I don't lay down with her as often, or for as long, anymore. Mostly because she tends to take a LONG time to get ready for bed. I'm amazed at how we can always get to soccer games and practices on time, but bedtime is ALWAYS late. Late or not, a few minutes laying down with Gaby at the end of the day is always a peaceful time. And often very entertaining!
Once the test was complete, we spent quite a while chatting. Again. She spoke of keeping an upbeat and positive attitude and atmosphere during whatever treatments I was facing. A big proponent of aromatherary, as am I, she suggested orange, lavender, and something else I can't recall and will have to ask about again. For energy. We use alot of lavender around here, for relaxing. Candles, oils, pillow sprays and lotions. I've also used eucalyptus for energy.
She's a wealth of information and open to sharing it. When I call my surgeon's office I always hope she'll answer. Not that the other people who might answer aren't kind and helpful, because they are. Jacki's just that something extra special.
I had my third official appointment with Jacki last week, for my BRCA testing. Genetic testing for the breast cancer gene. In her official capacity, she had to explain the test and all of the ins and outs associated with it, including the health insurance aspect. Of course. The fact that the company doing the test might be calling to discuss what might or might not be covered by insurance. (that's another post -- insurance companies being a PITA when you're fighting to get better. That really sucks!) The implications of the results.
Then the fun part. We got to hit the head together, where I swirled scope around my mouth, three times, for fifteen seconds each time and with specific instructions as to how and where in my mouth I was swishing. After the fifteen seconds I would spit into a vial (not unlike a pee cup!) making sure I got that last bit of residue. Now Jacki's done this before and told me that she knew from experience not to look into the mirror or make eye contact. Apparently someone did this and spit all over the mirror. I could see that happening! So I didn't look at Jacki or myself during the process. And we got through it.
There have been a lot of surprises, a lot of pleasant surprises, and a lot more laughs than I would ever have expected in this battle. And a long growing list of amazing people to share this with. Add Jacki to that list.
I have no reason, no excuse, as to why there has not yet been a post entitled 'Jacki' and perhaps even a 'Jacki II', and 'Jacki the 3rd'. I'm just getting around to it now, even though I met Jacki TWO months ago. That makes me even more behind, if you're keeping track, as I am.
I met Jacki on my second visit to my surgeon's office. With diagnosis confirmed, on the morning of April 19th, Marc and I met first with the surgeon. She provided us with the pathology report of the tumour, all good from her perspective, laid out the surgical options, which were lumpectomy or mastectomy -- no greater success with one than the other, discussed the medical and radiation dynamics of the treatment, and then told us we'd next be meeting with Jacki. (In looking back over previous posts, I realize that I didn't really dedicate a post to this appointment. I think it's an important missing bit of information that I should make sure I add at some point, both for myself and anyone else following along. The appointment wasn't as rushed as I might have made it sound -- just want to stay on the Jacki track)
While Marc was comfortable talking to the surgeon about the options she was presenting -- I mean after all, its science -- he didn't fare as well with Jacki.
I'm guessing Jacki's a nurse, nurse practitioner, I'm not sure. I feel that by asking I'm questioning their ability and qualifications, when in fact I'm just being nosy! Jacki's job that day was to educate me about lymphedema and its risks and prevention. With the sentinel node biopsy, the lymphatic system would be disrupted and possibly not function properly if I didn't take added precautions with my left arm and hand. No more vein puncture or blood pressure. Care in not overloading that side, with both weight and/or activity, not easy as I'm left handed. And an overall increased awareness of my hand and arm. Staying on top of any changes.
Lymphedema is an unusual accumulation of lymph fluid in the tissues of the arms or legs of a patient due to a malfunction of, or injury to, the lymphatic system. Jacki explained how we would measure my 'normal' prior to surgery, using some fabulous new technology, and I would be monitored for the 2-3 years following surgery, when my risk would be greatest.
She gave me a brochure to add to my beginning-to-bulge folder of cancer stuff. For education purposes, and perhaps as motivation to stay on top of it, there were photographs of the various stages of lymphedema. That was a little too much for Marc. When I looked at him, he had turned a greyer shade of grey. I patted him on his leg and assured him I'd get us through this. And we both laughed! Cuz watching loved ones in pain and suffering isn't easy, and that's the toughest part for Marc in all of this. I know he helps in other ways. We all have our strengths and weaknesses. And I'm lucky enough to have a variety of supportive family and friends, with a variety of strengths to offer. I'm covered in so many ways.
Back to Jacki. Jacki's very matter of fact, planning her role in all of this, for the next 3 or so years of my future. Its was very reassuring, way back there at the beginning, to hear her talk that way.
Jacki's relaxed, easy going. You never feel rushed with her. She likes to talk. And, since I also like to talk, I also noticed that she's good listener. She encourages questions and takes the time to cover anything you want to know. Her voice is both distinctive and relaxing. Familiar and soothing. You feel like she gives you as much time as you need. And like all of those amazing women at the breast centre, you feel better and so much more confident after spending time with her.
That was important at the beginning. Still is, but even more important then. So I looked forward to my appointment a few days later, to do the baseline reading for monitoring my lymphatic system. (I am SO not the science person and I apologize to those who are, those in health care and especially those I'm writing about! This is for me and those who dare to read it. And those who know me are generally aware of my limitations when it comes to science. But if anyone would like to support my posts with accurate information, links, that sort of thing, feel free!)
I had to remove my shoes and all jewelry. That wedding band is always difficult to remove, but it had to go too. I had to lay still for several minutes, with things hooked up to various parts (can't even remember which parts) and think of something that would always make me happy, and thus, stress free. I chose to think about tucking Gaby into her bed. When she was younger, I would always lay down with her. As she gets older, I don't lay down with her as often, or for as long, anymore. Mostly because she tends to take a LONG time to get ready for bed. I'm amazed at how we can always get to soccer games and practices on time, but bedtime is ALWAYS late. Late or not, a few minutes laying down with Gaby at the end of the day is always a peaceful time. And often very entertaining!
Once the test was complete, we spent quite a while chatting. Again. She spoke of keeping an upbeat and positive attitude and atmosphere during whatever treatments I was facing. A big proponent of aromatherary, as am I, she suggested orange, lavender, and something else I can't recall and will have to ask about again. For energy. We use alot of lavender around here, for relaxing. Candles, oils, pillow sprays and lotions. I've also used eucalyptus for energy.
She's a wealth of information and open to sharing it. When I call my surgeon's office I always hope she'll answer. Not that the other people who might answer aren't kind and helpful, because they are. Jacki's just that something extra special.
I had my third official appointment with Jacki last week, for my BRCA testing. Genetic testing for the breast cancer gene. In her official capacity, she had to explain the test and all of the ins and outs associated with it, including the health insurance aspect. Of course. The fact that the company doing the test might be calling to discuss what might or might not be covered by insurance. (that's another post -- insurance companies being a PITA when you're fighting to get better. That really sucks!) The implications of the results.
Then the fun part. We got to hit the head together, where I swirled scope around my mouth, three times, for fifteen seconds each time and with specific instructions as to how and where in my mouth I was swishing. After the fifteen seconds I would spit into a vial (not unlike a pee cup!) making sure I got that last bit of residue. Now Jacki's done this before and told me that she knew from experience not to look into the mirror or make eye contact. Apparently someone did this and spit all over the mirror. I could see that happening! So I didn't look at Jacki or myself during the process. And we got through it.
There have been a lot of surprises, a lot of pleasant surprises, and a lot more laughs than I would ever have expected in this battle. And a long growing list of amazing people to share this with. Add Jacki to that list.
Richard
Ever since I walked out the door after spending about an hour with Richard, I've wanted to write about him here. This reinforces the thought that I should write fresh. Oh I went on and on about him in my head as I was driving home, but here it is, almost 4 weeks later and I'm finally dedicating that post to yet another amazing human being I've had the good fortune of encountering since this battle to defeat cancer began.
Richard's name on his card has some fancy initials after his name. LPT. Licenced Physical Therapist. Makes sense. CCT. That one's tougher. Something to do with cancer? Maybe. But even a google search couldn't definitively clear this up. It's obviously nothing to do with Cobb Country or combat control. I'll have to inquire further.
But nothing on his card could have prepared me for the uplifting hour I spent with Richard.
I don't consider myself a negative person and don't feel I need others to buoy me, to maintain a positive outlook. Glass half full kind of girl, that's what I am. But I have to tell you, encountering similar minded folks during this battle is not only refreshing, but essential. You can't think any other way when waging a battle against cancer. And if you're lucky enough to have a health care professional like Richard on your team, you won't.
Upon leaving my appointment with him, he had asked me to call my surgeon's office, to let them know I had been seen by him. It was their referral that led me there. Dialing at a red light, I reached Jacki at my surgeon's office. (she deserves a post of her own as well, and has gotten one, in my head, many times!) I was glad to reach Jacki cuz I just knew she would get it. She would understand my elation. After offering the obligatory confirmation of my consult, I had to let her know how appreciative I was.
She wasn't surprised. More shrink than PT, Richard spent more time getting into my head. While his job is to make sure I keep my body on the right physical track during my course of treatment, he's obviously aware of the power of the right mindset and dug to make sure it was there.
I like to think he didn't have to dig too deep to find someone ready to fight, ready to tackle this cancer head on. I know that my resolve to win this fight has been greatly strengthened by the love and support of my family and friends. Here in PA and far far away.
Richard did what he was supposed to do: made sure I had a compression sleeve for flying to Winnipeg the next week. Though as he explained to me, the sleeve probably wasn't necessary as flying wouldn't cause lymphedema. But as it was requested, he would provide it and instruct me on its use.
He gave me a thorough lesson on the lymphatic system and the cause of lymphedema. Germs. The lymphatic system fights germs. When altered by the removal of lymph nodes which in my case was three, it may not function as normal.The more nodes removed, the greater the impact. Richard wasn't the first health care professional to tell me that my risk of developing lymphedema is slim to none based on the minimal number of nodes removed.
I was advised on how to wash my hands and arms three times a day, like a surgeon. I was given a sample of a topical antibiotic and advised to carry it with me and apply it to any cuts, hangnails and even mosquito bites that appear on my left arm.
We went over the precautions I should be taking with my left arm, and I received pages of literature on the subject of lymphedema.
I was also advised to think about how I was planning to live the next 45 or 50 years of my life, because that was my future. Defeating the cancer and continuing on. Probably not his exact words. Like I said, it's been almost a month since I was there. But it wasn't an 'if' I beat the cancer. It was all about doing what I had to do to get it done.
We talked about our upcoming trip to Winnipeg for Pier and Nate's wedding and why I hadn't told Marc's side of the family. And when I was planning to tell them. I said I wanted to tell them before we left Winnipeg but after the wedding, which left a small window. He asked why. I said I wanted to be able to tell them in person, and by them, I mean Pier, Manon and Nathan. And I wanted to get a hug. Another hug. The hug that knew. If that makes any sense. Whether or not they felt the same way as I think I would, I believe I would like to have another opportunity to hug someone after knowing that. Rather than seeing them, hugging them, having them go away, then receiving the news of their diagnosis. Again, just me.
I really don't know if I've done Richard justice here. I feel that I haven't. But more than painting a picture for others reading this, I just wanted, in this case, to record a memory for myself. I spent an amazing hour with this person, walked out feeling even more positive and upbeat, and am grateful for all of it.
I don't have to look hard to find a silver lining in my cancer chapter. Here's another one. Thanks Richard.
Richard's name on his card has some fancy initials after his name. LPT. Licenced Physical Therapist. Makes sense. CCT. That one's tougher. Something to do with cancer? Maybe. But even a google search couldn't definitively clear this up. It's obviously nothing to do with Cobb Country or combat control. I'll have to inquire further.
But nothing on his card could have prepared me for the uplifting hour I spent with Richard.
I don't consider myself a negative person and don't feel I need others to buoy me, to maintain a positive outlook. Glass half full kind of girl, that's what I am. But I have to tell you, encountering similar minded folks during this battle is not only refreshing, but essential. You can't think any other way when waging a battle against cancer. And if you're lucky enough to have a health care professional like Richard on your team, you won't.
Upon leaving my appointment with him, he had asked me to call my surgeon's office, to let them know I had been seen by him. It was their referral that led me there. Dialing at a red light, I reached Jacki at my surgeon's office. (she deserves a post of her own as well, and has gotten one, in my head, many times!) I was glad to reach Jacki cuz I just knew she would get it. She would understand my elation. After offering the obligatory confirmation of my consult, I had to let her know how appreciative I was.
She wasn't surprised. More shrink than PT, Richard spent more time getting into my head. While his job is to make sure I keep my body on the right physical track during my course of treatment, he's obviously aware of the power of the right mindset and dug to make sure it was there.
I like to think he didn't have to dig too deep to find someone ready to fight, ready to tackle this cancer head on. I know that my resolve to win this fight has been greatly strengthened by the love and support of my family and friends. Here in PA and far far away.
Richard did what he was supposed to do: made sure I had a compression sleeve for flying to Winnipeg the next week. Though as he explained to me, the sleeve probably wasn't necessary as flying wouldn't cause lymphedema. But as it was requested, he would provide it and instruct me on its use.
He gave me a thorough lesson on the lymphatic system and the cause of lymphedema. Germs. The lymphatic system fights germs. When altered by the removal of lymph nodes which in my case was three, it may not function as normal.The more nodes removed, the greater the impact. Richard wasn't the first health care professional to tell me that my risk of developing lymphedema is slim to none based on the minimal number of nodes removed.
I was advised on how to wash my hands and arms three times a day, like a surgeon. I was given a sample of a topical antibiotic and advised to carry it with me and apply it to any cuts, hangnails and even mosquito bites that appear on my left arm.
We went over the precautions I should be taking with my left arm, and I received pages of literature on the subject of lymphedema.
I was also advised to think about how I was planning to live the next 45 or 50 years of my life, because that was my future. Defeating the cancer and continuing on. Probably not his exact words. Like I said, it's been almost a month since I was there. But it wasn't an 'if' I beat the cancer. It was all about doing what I had to do to get it done.
We talked about our upcoming trip to Winnipeg for Pier and Nate's wedding and why I hadn't told Marc's side of the family. And when I was planning to tell them. I said I wanted to tell them before we left Winnipeg but after the wedding, which left a small window. He asked why. I said I wanted to be able to tell them in person, and by them, I mean Pier, Manon and Nathan. And I wanted to get a hug. Another hug. The hug that knew. If that makes any sense. Whether or not they felt the same way as I think I would, I believe I would like to have another opportunity to hug someone after knowing that. Rather than seeing them, hugging them, having them go away, then receiving the news of their diagnosis. Again, just me.
I really don't know if I've done Richard justice here. I feel that I haven't. But more than painting a picture for others reading this, I just wanted, in this case, to record a memory for myself. I spent an amazing hour with this person, walked out feeling even more positive and upbeat, and am grateful for all of it.
I don't have to look hard to find a silver lining in my cancer chapter. Here's another one. Thanks Richard.
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