I'm doing another FAQ post, like the one I did when I was first diagnosed. Next week, I'll start chemotherapy. "Hey wait," you might say, "Didn't you just tell us that your scans are clean? Isn't the cancer gone?"
That crossed my mind, too. So throughout this process, I keep asking questions that can help us understand the reasons behind my treatment.
During my initial meeting with Dr. Cooper (surgeon-extraordinaire), I told him that before feeling this lump and having a mammogram, ultrasound, and biopsy, I was the happiest person around. I asked, "What would happen if I ignored this whole string of events and went on living my normal life?" Now, I won't repeat exactly what he described, but that 2.5 centimeter tumor of cancer cells in my right breast would have made my life miserable pretty quickly. (The charts always say 5-year survival rate, and I'd certainly have been on the wrong end of that one.)
Then I went ahead and had him cut the offending boobie and it's left friend off. He also found some cancer in the right lymph nodes, and they're gone as well. So of course, I had to ask again. "Dr. Cooper. What's my do-nothing prognosis now?" This one wasn't as certain. "Well," he said, "You'd probably pass that 5-year point. And we don't know for sure that the cancer would ever come back. But it probably would. So that's why we're being aggressive with your treatment and sending you to an oncologist."
At that point, we didn't know that the CT scan and bone scan would be clear of cancer. In fact, there could have been another tumor in my body, but there wasn't. We cut out all of the tumors. Yay! Right? So why should I put myself through this chemotherapy poison thing?
The fact is that my body doesn't have any visible tumors, but the odds are that some of the cells from that original tumor escaped into my blood stream and are still there. There's really no way to find out if they're there and where they are. There are these teeny-tiny cancer cells floating around in me. They could do that for a long time. Or my body could fight them on its own (something called apoptosis that my new friend Katie told me about). Or one of them could start dividing and cause a tumor somewhere else (that metastatic thing I mentioned the other day). We have no idea what will happen and when.
But I think you'd all vote with me that we might as well do something about those floating cancer cells. And my choice is to do lots of things. Whatever is out there, I'll do.
Now again, after the clear scans, I posed the, "What's my do-nothing prognosis?" question to the chemo team. Dr. Kirshner printed me my actual survival rate percentages from a site called adjuvantonline.com. (Unfortunately, I'm not a doctor, so I can't get on.) This one talks about the chance of a relapse within ten years. Now, I've got a 31.4% chance that I could do nothing and be cancer free for Maggie's Bat Mitzvah (um...yeah...I don't think she's having one, but that's besides the point). With chemo and hormone therapy (another drug regimen I'll take for five more years after chemo ends), it's up to 70.6% chance of no relapse. And I'm going to throw in some radiation, too, which wasn't on his little printout. Maybe I'll be up in the "chances of being killed by a terrorist" range after that.
During my chemo-teach, I asked Maggie the same question. Though she didn't have the adjuvantonline calculator, she said that she'd track me down at home and drag me in for chemo if I was planning on stopping right now. I wasn't, but just like the reassurance that I'm doing the right thing.
So, what the chemo drugs will do is target the fast-growing cells in my body. These include hair, nails, the lining of the stomach, and the insides of the mouth. Oh yeah, and cancer cells. It's been done for years, and the most effective drugs for my type of breast cancer starts with a combination of adriamycin and cytoxan and is followed by taxol. They're new words to me, too, but I'll know them well soon enough.
Is there a chance that all of this is for nothing? Yes. I could be in that completely cancer-free minority right now. Or I could relapse anyhow. But a bunch nausea and fatigue over the next few months is totally worth the extra percentage points I get from taking my poison.
Let's go, chemo!
Monday, April 2, 2012
It's Raining!
A couple weeks ago, I wrote about finding a way to make these upcoming months, with me facing 20 sessions of chemotherapy, enjoyable for Maggie (age 4) and Reese (almost 3). We have decided to keep them occupied at summer camp and purchase a backyard swingset. That is, we're spending money.
Like responsible, rule-following, 30-somethings, Paul and I had set aside a couple months' salary in a savings account, "just in case..." Although I always thought that the money was for a job-loss scenario, we've decided that it's time to start spending from that account. Paul's words were, "We were saving for a rainy day, and it's RAINING!"
When a few friends began to offer us money to help us through this unexpected bump in the road, I was originally feeling uncomfortable accepting. We are not in dire straits or on the brink of financial disaster. We have a great health insurance plan (thanks, SRC!) and can make prudent choices with our money.
However, my wonderful friend Karen has relentlessly assured me that our long-distance friends WANT to help. We shouldn't have to use up our savings to have a lawn service or house cleaner this summer. I should be able to buy a pretty selection of head-scarves and new sweatpants to stay comfortable as my body changes. And the girls should enjoy some extra toys and activities to help make the changes in their lives a little easier to swallow.
Therefore, I have set up a donation widget (below) as a way for you to help if you want to. I don't think it shows up on iPads or mobile devices, but let me know if you find other glitches. The end date is the projected last session of chemotherapy for me, a light at the end of this tunnel.
All of your gestures of kindness: food, childcare, advice, hugs, emails, phone calls, and Facebook "likes" are sincerely appreciated. I am opening this up as one other way for you to help, with love to everyone for their support.
(Note 4/4/2012: We have been receiving the money you've sent, but it's not updating here. I don't know why, as I'd love to have your names scrolling across, but I just want to reassure you that this works.)
(Note 4/5/2012: Yay! It's scrolling. I didn't do anything at all. It's not mentioning Kerry H. and Karen S. because I had been using another glitchy widget, but they are just as appreciated.)
Like responsible, rule-following, 30-somethings, Paul and I had set aside a couple months' salary in a savings account, "just in case..." Although I always thought that the money was for a job-loss scenario, we've decided that it's time to start spending from that account. Paul's words were, "We were saving for a rainy day, and it's RAINING!"
When a few friends began to offer us money to help us through this unexpected bump in the road, I was originally feeling uncomfortable accepting. We are not in dire straits or on the brink of financial disaster. We have a great health insurance plan (thanks, SRC!) and can make prudent choices with our money.
However, my wonderful friend Karen has relentlessly assured me that our long-distance friends WANT to help. We shouldn't have to use up our savings to have a lawn service or house cleaner this summer. I should be able to buy a pretty selection of head-scarves and new sweatpants to stay comfortable as my body changes. And the girls should enjoy some extra toys and activities to help make the changes in their lives a little easier to swallow.
Therefore, I have set up a donation widget (below) as a way for you to help if you want to. I don't think it shows up on iPads or mobile devices, but let me know if you find other glitches. The end date is the projected last session of chemotherapy for me, a light at the end of this tunnel.
All of your gestures of kindness: food, childcare, advice, hugs, emails, phone calls, and Facebook "likes" are sincerely appreciated. I am opening this up as one other way for you to help, with love to everyone for their support.
(Note 4/4/2012: We have been receiving the money you've sent, but it's not updating here. I don't know why, as I'd love to have your names scrolling across, but I just want to reassure you that this works.)
(Note 4/5/2012: Yay! It's scrolling. I didn't do anything at all. It's not mentioning Kerry H. and Karen S. because I had been using another glitchy widget, but they are just as appreciated.)
Friday, March 30, 2012
The Longest Post Ever
Nyah-Nyah! Kept you waiting. How'd YOU like that feeling? Just wanted you to have a taste of it.
Kidding. If you've checked on Facebook, you know that the CT scan and bone scan results were all clear of cancer. We can all breathe again and celebrate this Best Breast Cancer Ever as just that: breast cancer. Interesting fact, though. If it HAD been found in my liver or bones or whereever, it would still be breast cancer. The cells originated in the breast and have breast cell characteristics as they travel and start forming tumors elsewhere. So if the news hadn't been good today, I wouldn't have been reporting colon cancer. I'd have been reporting that my breast cancer metastasized to my colon.
But back to me, and my non-metastatic cancer. Woo-hoo! I'm going to go against the policy of this blog and tell you about my awful day yesterday. However, since I'm breaking my own rule of optimism and positivity (I make the rules, so I can break them, right?), I'm going to write the bad stuff in italics. If you want to skip the italics, I'll meet you back at the bottom of this post when I start writing in regular font again. Actually, there's a lot of cool info here like that metastatic stuff above, but my experience was crappy. Anyhow, here we go:
Yesterday (Thursday) I was scheduled to have a CT scan and then bone scan to look for that metastatic cancer and then today (Friday) I was scheduled to have my chemo-teach (a hour+ session with a nurse who can walk me through everything I need to know about having chemotherapy and answer all of my questions) and then go over to the hospital to have a port inserted into my collarbone area (a little tube/hole thingy so that they can give me my IV chemo drugs without having to poke me with needles all the time).
So I lined up my childcare for two straight days (thanks to Jennifer, Julia, Kurri, and Holly), did some carseat shuffling, and was off to the CT scan at 7:45am. Upon arrival, I was given a huge, I mean large McDonalds size huge, drink of this red punch-like solution that would make my body show up correctly on the CT scan. I had to finish it in 45 minutes and then it would be my turn to be scanned. While I was drinking and waiting, the hospital called my cell phone to tell me that my arrival time for the port insertion would be 2 hours before the scheduled time. But that was during my chemo-teach. (Oh, I forgot to mention, if you ever get cancer, you do not get to choose appointment times. They are made FOR YOU with none of your consent. So I didn't schedule this conflict. They did.) So I went to the desk at the oncology center where I was waiting and shuffled myself to an earlier time slot. Then patted myself on the back for handling this crisis seamlessly and went to finish my god-awful punch.
Soon, it was my turn for the scan. Nurse inserted the IV into my left arm (did I tell you that because I now have no lymph nodes in my right armpit, I'm never to have a needle in my right arm for the rest of my life?), and pressed whatever solution was in there through the needle. I felt a huge amount of pressure on my arm and one nurse yelled to the other nurse, "Stop!" It seems the needle had busted right out the other side of my vein and the solution didn't go where it was supposed to. So the arm started to swell (hematoma) and I started to cry, less from the pain than from the fear of something going wrong. Ice pack, deep breaths, and we moved forward, finding a vein approximately an inch away from this huge lump in my arm because the right one is out of service. I was still weepy walking out of there, but washed my face and headed off to the bone scan.
Since it's a separate department, though in the same building, I had to again show my insurance and co-pay another $10. Normally, I'm eternally thankful for our great insurance plan, but in my emotional state, I nearly cried again. Just the inconvenience of having to get the wallet out while holding an ice-pack to my swelling arm. But soon I was called in for a new solution to make my bones glow. Seriously, before a bone scan, they make your bones radioactive (low level, like what's in a banana), you wait another 90 minutes, then they can take pictures and see inside your bones. So I sat in the chair while the nurse injected this radioactive stuff into me. While I was there, she asked, "Do you have young children at home?" I thought she was reading my red swollen eyes and trying to make pleasant conversation, so I replied, "Yes. A 2-year-old and a 4-year-old." She said seriously, "Can someone else take them for the rest of the day? You'll be radioactive." I just started bawling again. I THOUGHT I was prepared. Childcare - check, 4 appointments in 2 days - check, food in bag for long waits - check, co-pays - check, radioactive Mommy - WTF?!?! Wouldn't this be important to mention BEFORE I arrived that day?
So I left the room for my 90 minute wait and called Paul and Kurri. Kurri would pick the girls up from preschool and Paul would leave work early to take them for the rest of the day. Then I got to sit and wait and try not to cry. The mean nurse who told me to stay away from my kids did tell me that drinking water will help it spread and dissipate, so I chugged about a liter of water right away.
My story's not done, but here's a super part, so I'm exiting italics mode for a little bit. Because of my hematoma, the nurses from Dr. Kirshner's office had been alerted and actually called to see me to check out my arm during my long wait for the bone scan. They had to use my leg for my blood pressure as they checked me in (if you were reading the italics, you'd know why), but once I was in the examination room, both Katy and Maggie, the nurses who I'll be working with through this whole cancer process, came to see me. What wonderful women!
While she checked my arm, I was telling Maggie that I wasn't sure if I wanted a phone call with the CT scan and bone scan results as soon as they were in, or if I just wanted to wait until morning when I was going to see her again anyhow and Paul would be there. She said she'd see if she could get an exact time so she could call when Paul was home, and went to the computer in the exam room. She clicked around and then said, "Um, I have to check the other computer. I'll be right back." Literally about 2 minutes later, she returned with a print-out in her hand and said, "CT scan is clear. Got it already." I started giggling uncontrollably, hugged her, thanked her a thousand times, and promised that I'd be in much better shape when she saw me tomorrow.
Uh-oh. Back to italics. Still waiting for the bone scan, I went back to drinking my water, but was feeling a little nauseous and I was starting to get a headache. Luckily, they called me a few minutes before my 90 minutes was up and I got to lay on a table to be scanned. This machine was really slow and I'd say I was laying there about 20 minutes for a never-ending series of pictures. I passed the time by counting in my head, and each picture took between 180 and 200 "seconds". Ouch, my head was getting quite painful by the end, but at least it was over.
There was no way I could've waited for results, and I probably shouldn't have driven home feeling that awful, but I made it into the house just in time to puke in the closest bathroom. This puke-fest, accompanied by a horrible migraine and some diarrhea, continued for about 6 hours. I did call the oncology office just to make sure this wasn't some dangerous reaction, and though them calling back took over an hour (they handle calls in order of importance...), they e-prescribed some anti-nausea medicine to my Wegmans and Paul took the girls to pick it up. After taking one at 5pm, I could hold down a little Gatorade and soup and then went to sleep.
Oh, and somewhere during my awfulness, I had Paul call to cancel the port-insertion surgery. In my non-medical opinion, I didn't think a surgery was a prudent plan after a day of puking. Dr. Cooper agreed.
So the non-italicized summary of Thursday is: CT scan complete and clear of cancer. Bone scan complete and awaiting results. Children and husband safe, Shari asleep.
This morning, we all got up and brought the girls to Holly's for yet another playdate. Then Paul and I were off to the chemo-teach. When Maggie walked in, we started our chit-chat because she's so wonderful, but then I interrupted and said, "Wait. The bone scan!" and she laughed and said, "Oh yeah. That! Here you go. All good." and handed me the results. Now we could all laugh and happily go through my lessons about chemotherapy.
That last sentence is yet another reason for the title of this blog. Two months ago, I'd never have known how delightful and fun it could be to learn about your body receiving poison for 20 weeks straight. But there was no sadness or fear in it at all. I got another care package (thanks Positively Pink Packages!), we toured the infusion room (I'll have my own TV during my 4-hour sessions), and I signed up for two clinical trials. What fun!
Just before we left, I was handed another print-out of my next 5 appointments for the coming two weeks (and that doesn't include the port-insertion surgery...calling Dr. Cooper on Monday to reschedule that). My job for this weekend is to line up the childcare for those, but it feels so good to have a plan for the next 5 months of my life that I now feel like I can work with this. I'm about to check out Google to see if there's a way I can make some sort of all-access calendar where people can sign up to take the kids as I post appointments. Anyone know of an easy group calendar online?
First chemo session is going to be April 12 (Elizabeth's birthday...BFF since I was 5 so an easy date to remember). I'm sure I'll blog before then, but you can all circle that date on your calendar for when you'll hear about the Best Chemotherapy Ever.
Kidding. If you've checked on Facebook, you know that the CT scan and bone scan results were all clear of cancer. We can all breathe again and celebrate this Best Breast Cancer Ever as just that: breast cancer. Interesting fact, though. If it HAD been found in my liver or bones or whereever, it would still be breast cancer. The cells originated in the breast and have breast cell characteristics as they travel and start forming tumors elsewhere. So if the news hadn't been good today, I wouldn't have been reporting colon cancer. I'd have been reporting that my breast cancer metastasized to my colon.
But back to me, and my non-metastatic cancer. Woo-hoo! I'm going to go against the policy of this blog and tell you about my awful day yesterday. However, since I'm breaking my own rule of optimism and positivity (I make the rules, so I can break them, right?), I'm going to write the bad stuff in italics. If you want to skip the italics, I'll meet you back at the bottom of this post when I start writing in regular font again. Actually, there's a lot of cool info here like that metastatic stuff above, but my experience was crappy. Anyhow, here we go:
Yesterday (Thursday) I was scheduled to have a CT scan and then bone scan to look for that metastatic cancer and then today (Friday) I was scheduled to have my chemo-teach (a hour+ session with a nurse who can walk me through everything I need to know about having chemotherapy and answer all of my questions) and then go over to the hospital to have a port inserted into my collarbone area (a little tube/hole thingy so that they can give me my IV chemo drugs without having to poke me with needles all the time).
So I lined up my childcare for two straight days (thanks to Jennifer, Julia, Kurri, and Holly), did some carseat shuffling, and was off to the CT scan at 7:45am. Upon arrival, I was given a huge, I mean large McDonalds size huge, drink of this red punch-like solution that would make my body show up correctly on the CT scan. I had to finish it in 45 minutes and then it would be my turn to be scanned. While I was drinking and waiting, the hospital called my cell phone to tell me that my arrival time for the port insertion would be 2 hours before the scheduled time. But that was during my chemo-teach. (Oh, I forgot to mention, if you ever get cancer, you do not get to choose appointment times. They are made FOR YOU with none of your consent. So I didn't schedule this conflict. They did.) So I went to the desk at the oncology center where I was waiting and shuffled myself to an earlier time slot. Then patted myself on the back for handling this crisis seamlessly and went to finish my god-awful punch.
Soon, it was my turn for the scan. Nurse inserted the IV into my left arm (did I tell you that because I now have no lymph nodes in my right armpit, I'm never to have a needle in my right arm for the rest of my life?), and pressed whatever solution was in there through the needle. I felt a huge amount of pressure on my arm and one nurse yelled to the other nurse, "Stop!" It seems the needle had busted right out the other side of my vein and the solution didn't go where it was supposed to. So the arm started to swell (hematoma) and I started to cry, less from the pain than from the fear of something going wrong. Ice pack, deep breaths, and we moved forward, finding a vein approximately an inch away from this huge lump in my arm because the right one is out of service. I was still weepy walking out of there, but washed my face and headed off to the bone scan.
Since it's a separate department, though in the same building, I had to again show my insurance and co-pay another $10. Normally, I'm eternally thankful for our great insurance plan, but in my emotional state, I nearly cried again. Just the inconvenience of having to get the wallet out while holding an ice-pack to my swelling arm. But soon I was called in for a new solution to make my bones glow. Seriously, before a bone scan, they make your bones radioactive (low level, like what's in a banana), you wait another 90 minutes, then they can take pictures and see inside your bones. So I sat in the chair while the nurse injected this radioactive stuff into me. While I was there, she asked, "Do you have young children at home?" I thought she was reading my red swollen eyes and trying to make pleasant conversation, so I replied, "Yes. A 2-year-old and a 4-year-old." She said seriously, "Can someone else take them for the rest of the day? You'll be radioactive." I just started bawling again. I THOUGHT I was prepared. Childcare - check, 4 appointments in 2 days - check, food in bag for long waits - check, co-pays - check, radioactive Mommy - WTF?!?! Wouldn't this be important to mention BEFORE I arrived that day?
So I left the room for my 90 minute wait and called Paul and Kurri. Kurri would pick the girls up from preschool and Paul would leave work early to take them for the rest of the day. Then I got to sit and wait and try not to cry. The mean nurse who told me to stay away from my kids did tell me that drinking water will help it spread and dissipate, so I chugged about a liter of water right away.
My story's not done, but here's a super part, so I'm exiting italics mode for a little bit. Because of my hematoma, the nurses from Dr. Kirshner's office had been alerted and actually called to see me to check out my arm during my long wait for the bone scan. They had to use my leg for my blood pressure as they checked me in (if you were reading the italics, you'd know why), but once I was in the examination room, both Katy and Maggie, the nurses who I'll be working with through this whole cancer process, came to see me. What wonderful women!
While she checked my arm, I was telling Maggie that I wasn't sure if I wanted a phone call with the CT scan and bone scan results as soon as they were in, or if I just wanted to wait until morning when I was going to see her again anyhow and Paul would be there. She said she'd see if she could get an exact time so she could call when Paul was home, and went to the computer in the exam room. She clicked around and then said, "Um, I have to check the other computer. I'll be right back." Literally about 2 minutes later, she returned with a print-out in her hand and said, "CT scan is clear. Got it already." I started giggling uncontrollably, hugged her, thanked her a thousand times, and promised that I'd be in much better shape when she saw me tomorrow.
Uh-oh. Back to italics. Still waiting for the bone scan, I went back to drinking my water, but was feeling a little nauseous and I was starting to get a headache. Luckily, they called me a few minutes before my 90 minutes was up and I got to lay on a table to be scanned. This machine was really slow and I'd say I was laying there about 20 minutes for a never-ending series of pictures. I passed the time by counting in my head, and each picture took between 180 and 200 "seconds". Ouch, my head was getting quite painful by the end, but at least it was over.
There was no way I could've waited for results, and I probably shouldn't have driven home feeling that awful, but I made it into the house just in time to puke in the closest bathroom. This puke-fest, accompanied by a horrible migraine and some diarrhea, continued for about 6 hours. I did call the oncology office just to make sure this wasn't some dangerous reaction, and though them calling back took over an hour (they handle calls in order of importance...), they e-prescribed some anti-nausea medicine to my Wegmans and Paul took the girls to pick it up. After taking one at 5pm, I could hold down a little Gatorade and soup and then went to sleep.
Oh, and somewhere during my awfulness, I had Paul call to cancel the port-insertion surgery. In my non-medical opinion, I didn't think a surgery was a prudent plan after a day of puking. Dr. Cooper agreed.
So the non-italicized summary of Thursday is: CT scan complete and clear of cancer. Bone scan complete and awaiting results. Children and husband safe, Shari asleep.
This morning, we all got up and brought the girls to Holly's for yet another playdate. Then Paul and I were off to the chemo-teach. When Maggie walked in, we started our chit-chat because she's so wonderful, but then I interrupted and said, "Wait. The bone scan!" and she laughed and said, "Oh yeah. That! Here you go. All good." and handed me the results. Now we could all laugh and happily go through my lessons about chemotherapy.
That last sentence is yet another reason for the title of this blog. Two months ago, I'd never have known how delightful and fun it could be to learn about your body receiving poison for 20 weeks straight. But there was no sadness or fear in it at all. I got another care package (thanks Positively Pink Packages!), we toured the infusion room (I'll have my own TV during my 4-hour sessions), and I signed up for two clinical trials. What fun!
Just before we left, I was handed another print-out of my next 5 appointments for the coming two weeks (and that doesn't include the port-insertion surgery...calling Dr. Cooper on Monday to reschedule that). My job for this weekend is to line up the childcare for those, but it feels so good to have a plan for the next 5 months of my life that I now feel like I can work with this. I'm about to check out Google to see if there's a way I can make some sort of all-access calendar where people can sign up to take the kids as I post appointments. Anyone know of an easy group calendar online?
First chemo session is going to be April 12 (Elizabeth's birthday...BFF since I was 5 so an easy date to remember). I'm sure I'll blog before then, but you can all circle that date on your calendar for when you'll hear about the Best Chemotherapy Ever.
Tuesday, March 27, 2012
And We Wait and We Wait...
They sure know how to wear down even the most optimistic of cancer patients. (By they, I mean the medical community, but nobody in particular.)
After a month of waiting to meet with our oncologist, who was to be the expert on how to treat and hopefully cure cancer, the day finally came. Dr. Kirshner, who we found out used to live a few houses away from our house (crazy coincidence number 3), is competent and friendly, but I had no real feeling either way about whether he's wonderful or not. But we were all ready for business...until...
One of the first questions Paul and I asked was, "How do we know if the cancer is somewhere else besides the boobs and lymph nodes?" The answer is that I'll get a CAT scan and a bone scan to see. More waiting. At least this wait isn't long. On Thursday morning, I go in for the CAT scan and bone scan at 8:30am. Then they should have the results for us within an hour or so. Once that's done, and if it's negative, they can seriously book me for my chemo and radiation. But if it's positive, the whole thing changes and we go into the realm of containing a stage 4 cancer and improving quality/length of life.
Everyone at Hematology/Oncology Associates of CNY (nurse, researcher, doctor) seemed to think that all of the cancer was just what we've already found. But that's just based on their experience. Walking down the street two months ago, based on every experience we've all had, I'd be assumed to be completely cancerless, but lo and behold, our experience was wrong.
So while I thought I could report a chemo plan to everyone today, it's just more waiting. They're wearing me down for sure. And I guess I have to do more of this "hope for the best but prepare for the worst" thinking.
My big positive today continues to be how much support I've gotten, both locally and virtually. So many moms have volunteered to take Maggie and Reese during all of these appointments. Practical strangers are cooking meals for us. Facebook friends near and far are sending their thoughts and well-wishes. And invisible friends who read my nunesmagician.com blog posts are wishing me well. It takes a village to deal with breast cancer.
After a month of waiting to meet with our oncologist, who was to be the expert on how to treat and hopefully cure cancer, the day finally came. Dr. Kirshner, who we found out used to live a few houses away from our house (crazy coincidence number 3), is competent and friendly, but I had no real feeling either way about whether he's wonderful or not. But we were all ready for business...until...
One of the first questions Paul and I asked was, "How do we know if the cancer is somewhere else besides the boobs and lymph nodes?" The answer is that I'll get a CAT scan and a bone scan to see. More waiting. At least this wait isn't long. On Thursday morning, I go in for the CAT scan and bone scan at 8:30am. Then they should have the results for us within an hour or so. Once that's done, and if it's negative, they can seriously book me for my chemo and radiation. But if it's positive, the whole thing changes and we go into the realm of containing a stage 4 cancer and improving quality/length of life.
Everyone at Hematology/Oncology Associates of CNY (nurse, researcher, doctor) seemed to think that all of the cancer was just what we've already found. But that's just based on their experience. Walking down the street two months ago, based on every experience we've all had, I'd be assumed to be completely cancerless, but lo and behold, our experience was wrong.
So while I thought I could report a chemo plan to everyone today, it's just more waiting. They're wearing me down for sure. And I guess I have to do more of this "hope for the best but prepare for the worst" thinking.
My big positive today continues to be how much support I've gotten, both locally and virtually. So many moms have volunteered to take Maggie and Reese during all of these appointments. Practical strangers are cooking meals for us. Facebook friends near and far are sending their thoughts and well-wishes. And invisible friends who read my nunesmagician.com blog posts are wishing me well. It takes a village to deal with breast cancer.
I Can Do This Positive Spin Thing
After a little tossing and turning (or more accurately, gently repositioning my sore body) last night, I came up with an analogy which helps with that psychological game from last night:
If you are told that you are considered "overweight" from 160-200lbs and "obese" above 200lbs, does someone who is 199 really have a significantly better prognosis than someone at 201?
Yesterday afternoon, I went from thinking the scale was reading 199 to finding out that it really read 201. Totally doesn't change my prognosis or treatment, just has a new name. Unfortunately, I can't skip a couple meals to change the results, but Dr. Kirshner will tell me in a few short hours what we CAN do about it. Tick tock, tick tock.
If you are told that you are considered "overweight" from 160-200lbs and "obese" above 200lbs, does someone who is 199 really have a significantly better prognosis than someone at 201?
Yesterday afternoon, I went from thinking the scale was reading 199 to finding out that it really read 201. Totally doesn't change my prognosis or treatment, just has a new name. Unfortunately, I can't skip a couple meals to change the results, but Dr. Kirshner will tell me in a few short hours what we CAN do about it. Tick tock, tick tock.
Monday, March 26, 2012
The Big Psychological Game
I was so prepared for the worst today. I was mentally ready to hear that they had found cancer in all of the lymph nodes and they'd need me in for more testing because there were signs that cancer had spread to other body parts.
So when Dr. Cooper came in and told us that the nodes that he hadn't checked before were all negative, Paul and I just about held a victory party in his office. (Okay, not quite, but it was a relief to hear that we were not living our worst nightmare.) Somewhere in there, when he was verbally telling us about the pathology report, he mentioned 3 out of 3 nodes being positive, but 0 out of 8 others being negative. Quick addition led me to believe that there was the 1 sentinel node, plus the 2 others he mentioned to Paul after surgery. 1+2=3 positive nodes, right? Then he told us that the tumor from my breast was measured at 2.5 centimeters, so my cancer was classified as "T2, N2" (T for tumor, N for nodes).
I texted Lisa, who was babysitting the girls, that it's still the Best Breast Cancer, and Paul and I started preparing for tomorrow's visit to the oncologist to find out about how this chemo will get rid of this once and for all.
After putting the girls to bed, we've finally had a chance to read the paper Dr. Cooper gave us and put it together with the books and pamphlets we've collected about breast cancer. Turns out, Dr. Cooper's a lying liar.
The report we're reading lists 1 out of 1 sentinel nodes positive; 3 out of 3 other nodes positive; 0 out of 8 additional nodes positive. So that makes a total of 4 positive nodes, right? 1+3=4. So we looked up "T2, N2". According to our books, that means the Tumor size was 2-5cm and there are 4-9 positive Nodes (!). Which again confirms that his original mention of 3 nodes wasn't telling the whole story.
The books are telling me that my tumor with 1-3 positive nodes would be classified as Stage IIb. But with 4-9 positive nodes, it's Stage IIIa. Here I am, harping on a label over one little lymph node. I let my guard down for a few hours, and it backfired. It's all a big psychological game.
So did Dr. Cooper really lie? Probably not. Just gave a different impression that, to our untrained ears, sounded nicer. I don't really hold it against him. He was just putting some spin on the results because in his mind, what's the difference between 3 and 4 nodes?
The difference is the label. Just like I don't know whether I should count myself as being diagnosed with breast cancer in my 30's or 40's (remember, my 40th birthday was between my mammogram and my biopsy), I was prepared for the label of Stage III, then Dr. Cooper made me think it might be II, and now it's III.
But back to the stuff I can control: I want the chemo regardless of IIb or IIIa, because there are cancer cells in my body and they need to go away. (By the way, there's also an M score which I don't have yet which determines if there's cancer anywhere else in my body. The oncologist will tell us how to figure that one out.) Let's just find out what the plan is there and get it started.
Okay, sorry this has been a babbly post. It's just where my brain is tonight: I have very little new information (one new node), but feel like I've been handed so much more. I think I'll be better after the meeting with Dr. Kirshner tomorrow because we'll have that wonderful, comforting path to follow again.
So when Dr. Cooper came in and told us that the nodes that he hadn't checked before were all negative, Paul and I just about held a victory party in his office. (Okay, not quite, but it was a relief to hear that we were not living our worst nightmare.) Somewhere in there, when he was verbally telling us about the pathology report, he mentioned 3 out of 3 nodes being positive, but 0 out of 8 others being negative. Quick addition led me to believe that there was the 1 sentinel node, plus the 2 others he mentioned to Paul after surgery. 1+2=3 positive nodes, right? Then he told us that the tumor from my breast was measured at 2.5 centimeters, so my cancer was classified as "T2, N2" (T for tumor, N for nodes).
I texted Lisa, who was babysitting the girls, that it's still the Best Breast Cancer, and Paul and I started preparing for tomorrow's visit to the oncologist to find out about how this chemo will get rid of this once and for all.
After putting the girls to bed, we've finally had a chance to read the paper Dr. Cooper gave us and put it together with the books and pamphlets we've collected about breast cancer. Turns out, Dr. Cooper's a lying liar.
The report we're reading lists 1 out of 1 sentinel nodes positive; 3 out of 3 other nodes positive; 0 out of 8 additional nodes positive. So that makes a total of 4 positive nodes, right? 1+3=4. So we looked up "T2, N2". According to our books, that means the Tumor size was 2-5cm and there are 4-9 positive Nodes (!). Which again confirms that his original mention of 3 nodes wasn't telling the whole story.
The books are telling me that my tumor with 1-3 positive nodes would be classified as Stage IIb. But with 4-9 positive nodes, it's Stage IIIa. Here I am, harping on a label over one little lymph node. I let my guard down for a few hours, and it backfired. It's all a big psychological game.
So did Dr. Cooper really lie? Probably not. Just gave a different impression that, to our untrained ears, sounded nicer. I don't really hold it against him. He was just putting some spin on the results because in his mind, what's the difference between 3 and 4 nodes?
The difference is the label. Just like I don't know whether I should count myself as being diagnosed with breast cancer in my 30's or 40's (remember, my 40th birthday was between my mammogram and my biopsy), I was prepared for the label of Stage III, then Dr. Cooper made me think it might be II, and now it's III.
But back to the stuff I can control: I want the chemo regardless of IIb or IIIa, because there are cancer cells in my body and they need to go away. (By the way, there's also an M score which I don't have yet which determines if there's cancer anywhere else in my body. The oncologist will tell us how to figure that one out.) Let's just find out what the plan is there and get it started.
Okay, sorry this has been a babbly post. It's just where my brain is tonight: I have very little new information (one new node), but feel like I've been handed so much more. I think I'll be better after the meeting with Dr. Kirshner tomorrow because we'll have that wonderful, comforting path to follow again.
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