Chemo is done. Finally.
If I am lucky, last Thursday is the last chemo I will ever have to endure. On Wednesday, some girlfriends delivered dinner and we shared a toast of red wine to celebrate. On Thursday my chemo buddy was a dear friend from Dillon and my Great Harvest days. It was great to spend some time reconnecting with her. At the end of the chemo session, all of the staff at the cancer center serenaded me with a song and handed me a balloon.
My in-laws know me well and sent along some lovely flowers and chocolate treats. Thanks everybody for your love and support.
When I would think ahead to this day, I imagined myself crying, cheering, shouting, and expressing all sorts of happy emotion. But the opposite seems to be true. All three of us spent most of this weekend shuffling around the house like zombies... with blank stares and low energy.
The best analogy I have is that of a POW. Photos of prisoners recently liberated from camps during the war show people with blank expressions. You would think they would be cheering their liberators, but really all they can do is stare and wonder what is happening.
Let's be clear; my situation is nothing like what those people experienced. But I certainly can relate.
This weekend was a Jammie Weekend. On Saturday it was clear that we were desperately low on toilet paper. Brett and I looked at each other and and decided it wasn't worth going to the store to get it. By a miracle, we made it to the store on Sunday to re-stock the Charmin. We spent Sunday afternoon at Barnes and Noble in a daze, looking at magazines. Grace stayed in her pajamas all day, even at the bookstore.
I think this new reality will start to sink in next Thursday when I don't have to go in for another treatment. Until then, I'm easing back into what I remember "normal" life to be.
Tuesday, December 14, 2010
Monday, December 6, 2010
Mosh Pit of Love
Assembling our gingerbread house
It's Monday morning, the sun has come out, and life continues to move along. In only 3 days I will sit for my last chemo and my excitement is starting to build.
I'm looking forward to looking back. After my last post, I wondered if that was even possible.
But I'm feeling a lot better than last week. My body found some hidden reserve somewhere and perked up. I'm feeling a second wind coming on just as I near the finish line.
Friday night I made it to the gingerbread house decorating event at Grace's school. I spent Saturday shopping and even went to the downtown Christmas stroll in the evening. On Sunday Brett and Grace went sledding while I went to the library, then we all went out to a coffee shop for hot drinks and snacks. Sunday afternoon I helped Grace organize her room, and then we had a lovely visit with friends. All in all, it's just amazing that I was able to do so much over the weekend.
A big thank you to everyone. After I was so down and defeated last week, so many people took the time to write or call and encourage me to keep on going. I really, really believe that this has made the difference for me and has given me that extra bit of strength when I needed it the most.
This whole experience has been like body surfing the mosh pit at a rock concert. It's because so many people are holding me up that I don't crash to the floor. I know that people worry when someone gets sick. They wonder what they can do and they think their little thing isn't that much. But when it all adds together, it's powerful. Calls, cards, dinner, visits, and emails all add up to what I call "The Mosh Pit of Love."
So thank you for letting me ride this wave.
Sunday, November 28, 2010
Darkness
It's that time of year when the sun sets earlier and earlier. Those of us in the northern latitudes are heading towards the darkest night of the year. For me personally, it feels the same.
It's been 11 months since the initial mammogram. Almost a year of wrestling with difficult decisions and painful procedures.
The truth is that I'm tired and coming to the end of my strength. With each treatment, I've been able to bounce back, dust myself off, and prepare for the next round. But last week I hit The Wall. There's not a lot of bouncing going on now, just resignation, and the determination to make it to the end of this awful chemo. Dec. 9th is my last treatment.
The body-spirit connection is so crucial to all of this. The hard part is that when my body fails, my spirit follows. A few months ago, I was certain this was all a bump in the road. Now it feels like I'll never recover, never get back to my real life, never be the person I really am. I know this is the exhaustion talking, but fear is becoming a larger opponent the longer this goes on.
I am noticing more stories of people my age dying from cancer. I cry more easily over silly, minor things. I worry. Exhaustion leads to isolation, as I have little energy for phone calls, email, or visiting friends.
I want a glimpse into the future, to see my life stretching out for 50 more years. To see myself caring for my happy family. To have a story to tell about how the world is better because I was here. To see successful agriculture projects, good friends, a long, happy marriage, and to see my beautiful daughter launching into life as a confident young woman.
Right now that glimpse is cloudy. I have no idea what the future holds. I tell the Universe this isn't fair. My mom died from breast cancer. Isn't that enough? What more is required from me?
The sun set at 5 o'clock today. It's going to be a long night.
It's been 11 months since the initial mammogram. Almost a year of wrestling with difficult decisions and painful procedures.
The truth is that I'm tired and coming to the end of my strength. With each treatment, I've been able to bounce back, dust myself off, and prepare for the next round. But last week I hit The Wall. There's not a lot of bouncing going on now, just resignation, and the determination to make it to the end of this awful chemo. Dec. 9th is my last treatment.
The body-spirit connection is so crucial to all of this. The hard part is that when my body fails, my spirit follows. A few months ago, I was certain this was all a bump in the road. Now it feels like I'll never recover, never get back to my real life, never be the person I really am. I know this is the exhaustion talking, but fear is becoming a larger opponent the longer this goes on.
I am noticing more stories of people my age dying from cancer. I cry more easily over silly, minor things. I worry. Exhaustion leads to isolation, as I have little energy for phone calls, email, or visiting friends.
I want a glimpse into the future, to see my life stretching out for 50 more years. To see myself caring for my happy family. To have a story to tell about how the world is better because I was here. To see successful agriculture projects, good friends, a long, happy marriage, and to see my beautiful daughter launching into life as a confident young woman.
Right now that glimpse is cloudy. I have no idea what the future holds. I tell the Universe this isn't fair. My mom died from breast cancer. Isn't that enough? What more is required from me?
The sun set at 5 o'clock today. It's going to be a long night.
Wednesday, November 24, 2010
Fill 'er Up
Yesterday was the last saline fill for my tissue expanders. An expander is a hollow, plastic insert placed underneath a pectoral muscle that replaces the original breast tissue. The purpose of the expander is to stretch the pec muscle so it can eventually hold a semi-permanent silicone implant. Because the muscle can't stretch far enough all at once, the expander is injected with saline fluid several times over the course of a few months to slowly get the job done.
It's a very bizarre experience. First, the doctor has to find the injection port by circling a magnet over the area. The magnet is on a long chain and it slowly circles around and around until it clicks directly onto my skin. It makes me think I'm consulting with a fortune teller for some mystic look into the future.
Once the port is found, he brings out the largest syringe I have ever seen, the kind you see in cartoons, and injects the saline into the expander. Each time, the expanders grow by about 60 cc's. I have to say it is one of the weirdest things I have ever seen, watching my body instantly grow and blow up like a balloon in a few short seconds.
The first time, it wasn't too bad. The second time, I was in pain for days. This last time, I came prepared, having already taken pain meds before arriving. Today I'm sore, but it could be worse.
Each time, I question whether reconstruction is really worth it. Each fill is painful. The expanders are cumbersome and get in the way of basic things such as sleeping. And they have to remain in place until 6 months after the radiation treatments are finished, which means I need to live with them at least through August. All of this makes me miss my original, God-given set of tatas. Not only did they look better, they were much less maintenance.
Brett, my amazing engineer husband, has decided there is a better way: Air is superior to liquid. "Hey, why not put a valve on them? Then you could pump them up with a small bicycle pump. Let's say we were going out on Friday night, you could give them some extra oomph. Then if you have an important meeting for work on Monday morning, you could let some air out of the valve and be taken more seriously. It's perfect!"
So, we shall see. Perhaps the next great medical invention will be the Tallman Pneumatic Tissue Expander. Coming to a surgeon near you.
It's a very bizarre experience. First, the doctor has to find the injection port by circling a magnet over the area. The magnet is on a long chain and it slowly circles around and around until it clicks directly onto my skin. It makes me think I'm consulting with a fortune teller for some mystic look into the future.
Once the port is found, he brings out the largest syringe I have ever seen, the kind you see in cartoons, and injects the saline into the expander. Each time, the expanders grow by about 60 cc's. I have to say it is one of the weirdest things I have ever seen, watching my body instantly grow and blow up like a balloon in a few short seconds.
The first time, it wasn't too bad. The second time, I was in pain for days. This last time, I came prepared, having already taken pain meds before arriving. Today I'm sore, but it could be worse.
Each time, I question whether reconstruction is really worth it. Each fill is painful. The expanders are cumbersome and get in the way of basic things such as sleeping. And they have to remain in place until 6 months after the radiation treatments are finished, which means I need to live with them at least through August. All of this makes me miss my original, God-given set of tatas. Not only did they look better, they were much less maintenance.
Brett, my amazing engineer husband, has decided there is a better way: Air is superior to liquid. "Hey, why not put a valve on them? Then you could pump them up with a small bicycle pump. Let's say we were going out on Friday night, you could give them some extra oomph. Then if you have an important meeting for work on Monday morning, you could let some air out of the valve and be taken more seriously. It's perfect!"
So, we shall see. Perhaps the next great medical invention will be the Tallman Pneumatic Tissue Expander. Coming to a surgeon near you.
Thursday, November 11, 2010
Seventy Five
Today was my 6th chemo treatment. I'm 75% of the way done. I can't believe I have made it this far.
Here's a typical chemo day for me. Up at 6:30 or 7 for meditation and quiet time. Snuggle with Grace on the couch. Shower, get ready, eat breakfast, and make Grace's lunch. All 3 of us drive to school. Get home around 9. Apply makeup. This is a crucial step. Without eyeliner and mascara, I look like an alien. I finish selecting my outfit (hey, I'm a girl!) and then start packing to go to the Cancer Center.
On my list: healthy lunch of beans, rice, and spinach. Snacks of raw almonds and garden carrots. Dark chocolate to help with the nasty taste of the port flushes. my iTouch. Chapstick. L-Glutamine supplement to minimize neuropathy symptoms of the chemo. Pen and notebook. Green smoothie in a jar (carrrots. kale, apple, banana, cranberry, spinach). Books. Today's selection are "William the Conqueror" and "Tortilla Flat" by Steinbeck. Dang, in all the rush I have forgotten to pack my camera.
My friend Judy was my chemo buddy today. She's a retired nurse who oversees the Outreach committee at St. James Episcopal. She picked me up around 10.
First order of business is the blood draw. My friend MJ showed up to say hello and we were able to harass our friend, Chris, the phlebotomist. Last time, MJ was my chemo buddy and Chris asked if she was my mother. When he discovered she's not, he was very embarrassed, and MJ hasn't let him live it down since. Anyone walking by the lab today would have wondered what was going on because we were laughing so much.
Next is waiting. Then meet with the doctor. Here I have to pause and say how much I like my oncologist, Dr. H. He's smart, calm, and thoughtful, and I feel as if I'm in good hands. He lets me push back on his opinions without getting defensive or ruffled and takes the time to listen to my concerns. Today I brought him some produce from my garden: Brussel sprouts, kale, and a leek. He said today was the first day he's seen me in there with a big smile. Maybe that's a good thing, or maybe it's just the Atavan. Who knows?
The final step is going to the infusion room and getting hooked up to the IV pump. By this time it's about noon. I am becoming so familiar with this place, I have already put my lunch in the refrigerator and said hello to all the nurses and R, the volunteer. I choose my station and sit down in the mauve vinyl recliner. It's best to get comfortable, because it lasts for hours. I unpack my bag and lay out my things on the nightstand beside me. R brings me two blankets from the warmer and a fluffy pillow.
The nurse comes and hooks me up to the machine. It doesn't hurt. Chris left the line to my port in after the blood draw. So all the nurse does is connect the 2 lines and I am good to go. Saline comes first. Then Pepcid and Benadryl. Decadron (the nasty steroid) goes in third. And finally comes Taxol. By the time I get the Taxol, I am feeling very woozy from the Benadryl and sack out. The taxol itself takes 3 hours to infuse, so I have plenty of time to nap. Somewhere in there, Brett shows up to visit and we watch a little TV.
When I first started chemo I had the delusional idea that I would take my laptop and get some work done. But with all the drugs they give me, my mind is an addled mess of unfocused jello. I'm doing good to string a subject and verb together. People magazine and reality TV are just exactly the level of intellectual engagement I can handle. At least I don't have drool coming out the corner of my mouth. But there's still time.
The infusion ends around 4 pm, and Judy takes me home. On chemo days, Grace goes to a friend's house to play until 5. I crash in bed until supper, which brings me to now, where I'm crashed on my Diva Couch, documenting my day.
I get to scheme my way out of kitchen cleanup on chemo days, since I get dizzy when I stand up. It's a terrible excuse, but I have to play the Cancer Card when I can. Membership has its privileges. My Amazing Husband has cleaned up the kitchen for me. He and Grace managed to slip away after supper to enjoy their first sledding of the season.
That's all for now,
Susan
Here's a typical chemo day for me. Up at 6:30 or 7 for meditation and quiet time. Snuggle with Grace on the couch. Shower, get ready, eat breakfast, and make Grace's lunch. All 3 of us drive to school. Get home around 9. Apply makeup. This is a crucial step. Without eyeliner and mascara, I look like an alien. I finish selecting my outfit (hey, I'm a girl!) and then start packing to go to the Cancer Center.
On my list: healthy lunch of beans, rice, and spinach. Snacks of raw almonds and garden carrots. Dark chocolate to help with the nasty taste of the port flushes. my iTouch. Chapstick. L-Glutamine supplement to minimize neuropathy symptoms of the chemo. Pen and notebook. Green smoothie in a jar (carrrots. kale, apple, banana, cranberry, spinach). Books. Today's selection are "William the Conqueror" and "Tortilla Flat" by Steinbeck. Dang, in all the rush I have forgotten to pack my camera.
My friend Judy was my chemo buddy today. She's a retired nurse who oversees the Outreach committee at St. James Episcopal. She picked me up around 10.
First order of business is the blood draw. My friend MJ showed up to say hello and we were able to harass our friend, Chris, the phlebotomist. Last time, MJ was my chemo buddy and Chris asked if she was my mother. When he discovered she's not, he was very embarrassed, and MJ hasn't let him live it down since. Anyone walking by the lab today would have wondered what was going on because we were laughing so much.
Next is waiting. Then meet with the doctor. Here I have to pause and say how much I like my oncologist, Dr. H. He's smart, calm, and thoughtful, and I feel as if I'm in good hands. He lets me push back on his opinions without getting defensive or ruffled and takes the time to listen to my concerns. Today I brought him some produce from my garden: Brussel sprouts, kale, and a leek. He said today was the first day he's seen me in there with a big smile. Maybe that's a good thing, or maybe it's just the Atavan. Who knows?
The final step is going to the infusion room and getting hooked up to the IV pump. By this time it's about noon. I am becoming so familiar with this place, I have already put my lunch in the refrigerator and said hello to all the nurses and R, the volunteer. I choose my station and sit down in the mauve vinyl recliner. It's best to get comfortable, because it lasts for hours. I unpack my bag and lay out my things on the nightstand beside me. R brings me two blankets from the warmer and a fluffy pillow.
The nurse comes and hooks me up to the machine. It doesn't hurt. Chris left the line to my port in after the blood draw. So all the nurse does is connect the 2 lines and I am good to go. Saline comes first. Then Pepcid and Benadryl. Decadron (the nasty steroid) goes in third. And finally comes Taxol. By the time I get the Taxol, I am feeling very woozy from the Benadryl and sack out. The taxol itself takes 3 hours to infuse, so I have plenty of time to nap. Somewhere in there, Brett shows up to visit and we watch a little TV.
When I first started chemo I had the delusional idea that I would take my laptop and get some work done. But with all the drugs they give me, my mind is an addled mess of unfocused jello. I'm doing good to string a subject and verb together. People magazine and reality TV are just exactly the level of intellectual engagement I can handle. At least I don't have drool coming out the corner of my mouth. But there's still time.
The infusion ends around 4 pm, and Judy takes me home. On chemo days, Grace goes to a friend's house to play until 5. I crash in bed until supper, which brings me to now, where I'm crashed on my Diva Couch, documenting my day.
I get to scheme my way out of kitchen cleanup on chemo days, since I get dizzy when I stand up. It's a terrible excuse, but I have to play the Cancer Card when I can. Membership has its privileges. My Amazing Husband has cleaned up the kitchen for me. He and Grace managed to slip away after supper to enjoy their first sledding of the season.
That's all for now,
Susan
Wednesday, November 10, 2010
Potty Humor
The other day I started to think about other types of cancer. Because if I have breast cancer at the age of 37, maybe I'm at higher risk for other cancers as well.
This type of thinking can lead to Freaking Out. What if I have ovarian cancer? How would I know? Oh my god, maybe I have colon cancer too. I think my lymph nodes are swollen; do I have lymphoma? Maybe I should go in for screening.
And then I stopped and thought, "Oh yes! That's just what I need right now... a scope up my ass! I'm sure that would make me feel so much better!"
I started laughing so hard at the thought of it all; me, at the proctologist's office, waiting for that lovely exam, subjecting myself to anxiety and dread while waiting for the results. No, thank you.
No need to borrow trouble.
But it was such a good laugh, I had to share it.
This type of thinking can lead to Freaking Out. What if I have ovarian cancer? How would I know? Oh my god, maybe I have colon cancer too. I think my lymph nodes are swollen; do I have lymphoma? Maybe I should go in for screening.
And then I stopped and thought, "Oh yes! That's just what I need right now... a scope up my ass! I'm sure that would make me feel so much better!"
I started laughing so hard at the thought of it all; me, at the proctologist's office, waiting for that lovely exam, subjecting myself to anxiety and dread while waiting for the results. No, thank you.
No need to borrow trouble.
But it was such a good laugh, I had to share it.
Monday, November 8, 2010
Catching Up
Our family on Grace's 9th birthday, wig included.
This little blogger needs to get with the program! Has it really been a month since my last post? Yikes!
Overall, it's been a time of ups and downs. When I feel bad, I feel very, very bad. And when I feel good, I feel like a normal person. During the bad times, I don't really feel like writing a blog post. Maybe I don't want to rain on everyone's parade. Who wants to spread bad news? And when I'm feeling good, I just want to live my normal little life, be with my family, and catch up on everything that has piled up while I was feeling yucky.
Oct. 28th was my most recent treatment. It marked the beginning of the end of chemo for me, which was great. I am now over halfway done, with three treatments left of the total 8. By my figures, that's 62.5% done... a much better number than when I started.
The first 4 treatments were AC, which brought on some very nasty nausea. Now AC is done! No more! I can eat! And so far, no more metal taste in my mouth! Woot woot!! I will take every chance to be grateful that I can.
My most recent treatment was Taxol. I had hoped that T would be easier, but have discovered that it's just as challenging in it's own way. T brings with it incredible bone, muscle, and joint pain, just like having a nasty case of the flu. At this point, it's hard to know if it's the T bringing the aches, or the Neulasta shot. I went for my weekly blood draw last week and discovered that my white cell count had skyrocketed up to 51 as a result of the Neulasta. The normal range is 4 to 10. And while I was on AC, my white count was at about 1.
I feel like a guinea pig. The first time they give you a dose of any chemo, they have to follow the standard protocol, see how you react, and then adjust from there. So this time I am sure they will adjust the medicines so my white count doesn't get out of control. But this past week was no fun, as it often hurt to walk and I had the worst headaches imaginable.
Today I am feeling like a fairly normal version of myself, which is an amazing relief. However, Saturday was a difficult day. I can tell that my body is increasingly more tired, and my emotions tend to follow. It's difficult to keep plugging away with this rigorous cancer treatment, and of course there are moments when my courage fails. I wonder if it's ever going to end and if I will come out on the other side with plenty of life to live. Will this be the end of me? There are days when I feel like renaming this blog "Weak and Frazzled," or "Doing Good Just to Show Up" to maore accurately reflect hos I feel.
But then Sunday came and I was able to go to church. We went 2 weeks ago as well, which was the first time since July. Yesterday it seemed particularly meaningful. It was so refreshing to be out with people and off the couch. One of the scripture readings was from Haggai. The prophet talks of rebuilding the wasteland of Jerusalem, and that it will be better than before. He says to "Take courage and work." Somehow, it was just what I needed to hear.
Later in the afternoon, we drove up to the mountains and took a short hike up to Palisade Falls. We took Grace and her good friend Aidan, who chatted all the way about Pokemon. Getting outside was such a boost as well. I find myself back on track and able to face the week with more hope than I was feeling earlier.
Today is our first real snowfall in Bozeman. It started this morning and is still going. It's beautiful. This morning, Grace was running around the house shouting, "SNOW! SNOW! SNOW! SNOW!" Her joy was contagious. I've been able to get some work done today, and later this evening have a massage to look forward to. Right now, all is well. One day at a time on this road. Today, I am just happy to be here.
Love,
Susan
Friday, October 8, 2010
Lose Yourself
It's been a long time since my last post and many people are wondering what's going on. I've struggled with how to best communicate these last few weeks, because, quite frankly, it's not pretty.
There's a fine line between gentle honesty and just letting it all hang out. Some things are best for public consumption and some things are best left to private journals. I've made several earlier blog attempts, but I wrote them when I was feeling abosultely awful. It was the blog equivalent of a punk rock concert. There was screaming, thrashing, and chaos all at once. Here's my best attempt at something more civilized, with melody and cadence to temper the minor keys.
I'm officially bald now. My hair started to fall out the day before my second treatment. Rather than wait for it to fall out on its own, I opted to just go ahead and shave it. Special thanks to the Cancer Support Community for arranging a volunteer hairstylist to do the deed. I didn't have the heart to ask my regular hairstylist to do it. She's become a great friend over the years, and I knew it would be too difficult for her. My amazing brother, Jeff, went with me and got the Telly Savalas treatment too. (He looks much cooler, though, since he is also sporting a Fu Manchu mustache.) Brett wanted to shave his head too, but Grace begged him not to. Two parents without hair would be too much for her, so we kept it to one.
A few days after the shaving, we went over my head with duct tape to get the remaining fuzz off. I can't say I've ever done that before.
The day before I shaved my head, I had the amazing fortune of receiving a big box of jaunty hats and scarves from my college girlfriends. Thanks girls. You were right on time and it made my week. Hugs to all of you.
I am now past my third chemo treatment and I'm wondering where I'll find the strength to do five more. Each treatment compounds on the previous ones, and this one was particularly difficult. The nausea and fatigue are now at a deep, cellular level. My mouth has a metallic, disinfectant taste that I can't shake, no matter how much dark chocolate I eat.
The treatments are settling into a predictable cycle. Every other Thursday I sit for an infusion. Friday I go back to the hospital for a Neulasta shot which helps my bone marrow make more white cells. Friday through Monday are spent trying to just hold on and withstand powerful nausea. By Tuesday, my white cells have started to plummet, and an unearthly tiredness sets in. On Thursday I go back to the hospital for a blood draw to check my counts.
Each time, my counts have been below the level that a normal body needs to fight an infection, and I'm warned to be very careful about going out in public, eating raw fruits and vegetables, and not keeping vases of flowers in the house. During this time, my bones ache for several days as my marrow kicks in to overdrive. By Monday the aches are going down. This gives me 2 days before I go back to the chair and start the cycle all over again.
Yesterday I had a hard time making it through my regular blood draw. My mind is beginning to associate the hospital with pain and nausea. I could barely walk in the door without tossing my cookies. When they flush my port, I can taste the saline and Heparin, which have a nasty disinfectant flavor. It's not fun for a girl who loves to savor good food. Give me a delicately cured cheese, or a Pinot Noir wine. Or ask me to differentiate between the various nuances of single-source dark chocolate. But don't make me taste Clorox! Thank God for Chris, the phlebotomist. He saw I was not doing well and kept me talking about my weekend and my job to distract me.
Distraction is now my key to survival. It's all a mental game. How do I keep my mind elsewhere so I can get my body to take the pain? The answer to this is coming in ways I wouldn't have expected.
"Lose Yourself" by Eminem is becoming my theme song. When I just need to escape my body, I play that song as loud as I can on my iPod. Many mornings while I'm still in bed, I listen to it to give me juice to get up and start the day. "You only get one shot, do not miss this chance, this opportunity comes once in a lifetime." Success is my only option... failure's not." "Listen, you can do anything you set your mind to."
The reality show "Say Yes to the Dress" provides blissfully mindless entertainment. For those who haven't seen it, it's a TV show based at a big wedding dress shop in New York City. The whole basis of the show is that brides come in and try on wedding dresses. That's it! Isn't it fantastic? A whole show where you get to wonder if that neckline really looks good, or if she really needs to reconsider the beading on the waistline. Life's problems are boiled down to wondering if the shade of the veil matches the dress. Love it.
Winston Churchill has become my other favorite distraction. Winston wasn't a saint, but to me he represents pure, 100% perseverance in human form. The guy just refused to quit, even when the odds were very bleak. I hang on to his quotes and repeat them over and over, especially, "When you're going through hell keep going." Words to live by, right there.
But by far, the biggest and best distraction has been friends and family and all the love and support they bring. I have this mental picture of myself running a marathon. I've left the starting gate where there were cheering fans, balloons and streamers, and a 20 piece brass band. Now I'm out in the dessert. It's quiet and lonely. It's getting hot, and the road is starting to climb. It's too early to think of the finish line. I just have to put one foot in front of the other, feel the pace, and keep my mind steady. One foot in front of the other. Breathe.
I think about quitting. This is too hard. I didn't even sign up for this race! I was involuntarily pulled from the crowd! Hey, I'm not even a runner! Forget it, I'm just going to sit down and stop. Then something happens. Someone I know comes along and runs beside me for awhile. They help me keep pace, give me words of encouragement and hand me a cold drink. It keeps me going.
All the cards, phone calls, emails, meals, and visits are my race support. Many of these messages have gone unanswered. Many gifts have come without me sending a thank you note in return. Please know that I've gotten them all and am grateful for each one. There are some days that a simple, quick email has kept me going. Right now I'm conserving my energy for the race itself and am unable to respond to all the good will that is sent my way.
Thank you for helping me run. Love, Susan
Friday, September 10, 2010
Low White Count
Yesterday I went in for my first blood draw since the chemo. In the afternoon, one of the nurses called to let me know that my white cell count and platelet count had gone too low. As a result, I am at a high risk for infection right now and have been asked to avoid going out in public, to not eat raw vegetables, and to take a host of other precautions.
We had planned to go to a parent function for Grace's school tonight, as well as church on Sunday. But these will just not be happening for me.
Today and over the weekend I am going to take it easy and give my body the rest it needs to heal. I am "hard at work"... lying on the couch with my fuzzy blanket and trusty laptop. I can still edit my "Nutrient Management for Organic Small Grains" paper, just not at my desk. Thank goodness for wireless routers, cordless phones, and laptops.
Chemo can be a dangerous dance with the immune system. The medicine targets fast-growing cells. Included in this category are cancer cells, white blood cells, and platelets. It can't distinguish one from the other.
The day after chemo, I went in for a Neulasta shot. This is a drug that stimulates the bone marrow to make extra white blood cells when they dip too low. Apparently, it doesn't kick in until it's needed. So the hope is that it will start to do it's job and my white cell count will start to improve over the next few days. If the numbers don't come up enough, the next round of chemo will just have to wait.
So ... Little Miss Over-achiever Pants is learning to take it easy, let things go, and ask for help. Wish me luck.
We had planned to go to a parent function for Grace's school tonight, as well as church on Sunday. But these will just not be happening for me.
Today and over the weekend I am going to take it easy and give my body the rest it needs to heal. I am "hard at work"... lying on the couch with my fuzzy blanket and trusty laptop. I can still edit my "Nutrient Management for Organic Small Grains" paper, just not at my desk. Thank goodness for wireless routers, cordless phones, and laptops.
Chemo can be a dangerous dance with the immune system. The medicine targets fast-growing cells. Included in this category are cancer cells, white blood cells, and platelets. It can't distinguish one from the other.
The day after chemo, I went in for a Neulasta shot. This is a drug that stimulates the bone marrow to make extra white blood cells when they dip too low. Apparently, it doesn't kick in until it's needed. So the hope is that it will start to do it's job and my white cell count will start to improve over the next few days. If the numbers don't come up enough, the next round of chemo will just have to wait.
So ... Little Miss Over-achiever Pants is learning to take it easy, let things go, and ask for help. Wish me luck.
Sunday, September 5, 2010
Round One Done!
The first round of chemo went reasonably well, and I'm very, very grateful for that simple gift.
On Thursday morning, our deacon came to the house to pray with us before we left. Then Brett and I headed up to the hospital. I wore my super-amazing shoes that I bought the last time we were in Seattle. If these shoes had a name they would be my "Take No Prisoners" shoes. My brother Jeff met us at the hospital. It was a lovely, sunny day.
By about noon, I was hooked up on the first of 5 infusions. They start with saline, then move to 2 powerful anti-nausea drugs. Then Adriamycin, which is red and has to be pushed into my port with a big syringe. (I asked the nurse to cover it with a towel so I didn't have to watch.) The last infusion is Cytoxan. They started that one at half dose to see how I would tolerate it. When everything looked good, they cranked it up to the full dosage.
Sometime during the infusion, I was visited by another woman I had been trying to connect with. R is my age, has 2 little kids ages 1 and 3, and also has breast cancer. She is done with chemo and is now taking Herceptin infusions. It was amazing to connect with another person my age. But sobering to see another young mom affected by this disease. When she did this same chemo, she reacted very, very badly and was in and out of the hospital and had to have home nursing care. Her reaction is rare compared to most, but yet another reminder that I am lucky.
After chemo, we went out and took some photos in a barley field next to the hospital. Bozeman is the only place I know where the hospital is next to an open field. For my east coast relatives, this will only cement the idea that we live in the middle of nowhere. But for me, a field of grain is comforting and beautiful.Barley also reminds me of our first dance at our wedding, "Fields of Gold," by Sting. Since our 10th anniversary is Sept. 9th (today) it seemed like a good thing to do.
Next, we went to watch Grace' soccer practice. About then, I started to feel "weird" and we came home. My dad and step-mom met us at home and had come with all sorts of good things. The only thing I wanted was a banana-based smoothie. My dad, in his great kindness, had brought all sorts of wonderful fruit and whipped one right up for me in the Vita-Mix. Then Grace and I snuggled in bed together and I drifted off to sleep.
Physically, it has felt like I've had the flu for 5 or 6 days. I've been able to function. I've gone shopping, out to a restaurant for Brett's birthday, and out for walks. On Tuesday I was back at work. Dragging my tail, but working nonetheless.
I felt like such a conqueror after getting myself into that chemo chair. I was so scared of what would happen. Every time I thought of it I would cry. I didn't know how I was going to find the strength to do it.
But I did it. And I did it on my terms. I was calm. I was ready. And I was in control. This alone was a major victory for me.
However, I have to be very careful that I don't overdo it. The emotional high of making it through came to an end about Tuesday. I think the powerful anti-nausea steroid ran it's course as well. My body and my emotions dipped low and I spent much of the day napping and regrouping.
On Monday evening I was feeling good enough that I went for a long walk to the top of Peet's Hill by myself. It was wonderful to get out for some fresh air. My body was achy and tired. But the evening was beautiful. I got to the top of the hill just as the sun was setting over the Tobacco Root mountains. Then a flock of geese came from the east, flying low, and the point flew right over where I was standing. I could hear the "whoosh" of the wingbeats. They came from the exact direction of the hospital, flew over me, and then west over Bozeman towards the sunset and the mountains. I was surprised by their beauty and I could feel my eyes water. I was a part of that moment. I was a part of LIFE.
Love,
Susan
Wednesday, September 1, 2010
Go Time
This is where the rubber meets the road. Chemo starts tomorrow.
Giving ourselves 2 extra weeks was a good move for us. We hadn't thought through all of our options and weren't ready to take action until we were sure of our direction.
We certainly aren't happy that chemo is the next step, but at least we have made peace with that choice. It boils down to this: At stage 3, there is a 44% chance that surgery alone will cure you. When you add in chemo, radiation, and hormone therapy, that number jumps to 80%. (Let's not think about that other 20% right now, ok?)
The problem is that no one knows which of the three groups you will be in. 1. You may not need chemo at all. 2. Chemo will be the reason you are cured, or 3. Chemo will just buy you time.
I would love to believe that I am in the first group and that if I just drink kale juice smoothies I will be fine. But I could never live with myself if things get worse and I hadn't done chemo. I don't want to ever explain to my family that chemo was just too scary and inconvenient so I couldn't be bothered.
So here I am, staring down the barrel of the most challenging chemo regimen available for breast cancer; dose-dense AC+T. I will go every other Thursday from now until the first part of December. First up are 4 rounds of AC (Adriamycin and Cytoxan), aka "The Red Devil." Yep, it's red. And yep, it burns. The nurses wear thick rubber gloves and something like a hazmat suit to make sure they don't get it on themselves. This is not comforting. At all.
Last week I had an internal port installed. This allows the chemo to inject directly into my chest wall, rather than having to be poked in my arm each time. It really completes the Frankenstein look that I've got going on my chest right now. All I need are 2 bolts for either side of my neck and I'm set.
Today I go for one final check at the cardiologist. Chemo is hard on the heart, and they need to make sure mine is OK before we start.
Next order of business to to pack my chemo bag for tomorrow. The September issue of Vogue will definitely be at my side, as well as my amazing, make-other-girls-jealous-because-he's-so-handsome husband. And some dark chocolate.
Love,
Susan
Giving ourselves 2 extra weeks was a good move for us. We hadn't thought through all of our options and weren't ready to take action until we were sure of our direction.
We certainly aren't happy that chemo is the next step, but at least we have made peace with that choice. It boils down to this: At stage 3, there is a 44% chance that surgery alone will cure you. When you add in chemo, radiation, and hormone therapy, that number jumps to 80%. (Let's not think about that other 20% right now, ok?)
The problem is that no one knows which of the three groups you will be in. 1. You may not need chemo at all. 2. Chemo will be the reason you are cured, or 3. Chemo will just buy you time.
I would love to believe that I am in the first group and that if I just drink kale juice smoothies I will be fine. But I could never live with myself if things get worse and I hadn't done chemo. I don't want to ever explain to my family that chemo was just too scary and inconvenient so I couldn't be bothered.
So here I am, staring down the barrel of the most challenging chemo regimen available for breast cancer; dose-dense AC+T. I will go every other Thursday from now until the first part of December. First up are 4 rounds of AC (Adriamycin and Cytoxan), aka "The Red Devil." Yep, it's red. And yep, it burns. The nurses wear thick rubber gloves and something like a hazmat suit to make sure they don't get it on themselves. This is not comforting. At all.
Last week I had an internal port installed. This allows the chemo to inject directly into my chest wall, rather than having to be poked in my arm each time. It really completes the Frankenstein look that I've got going on my chest right now. All I need are 2 bolts for either side of my neck and I'm set.
Today I go for one final check at the cardiologist. Chemo is hard on the heart, and they need to make sure mine is OK before we start.
Next order of business to to pack my chemo bag for tomorrow. The September issue of Vogue will definitely be at my side, as well as my amazing, make-other-girls-jealous-because-he's-so-handsome husband. And some dark chocolate.
Love,
Susan
Thursday, August 19, 2010
Change in schedule
Just wanted to let people know that I postponed chemo by 2 weeks.
I was really strong heading into the surgery piece of this ordeal, and weathered it very well. But when I went to my strength reserves prior to starting chemo, I found I had very little left.
So, I will be taking the next 2 weeks to enjoy my life, gain some clarity, and build up my inner reserves.
Please forgive me if I seem out of touch during this time. I'm just hunkering down for the next round.
Love,
Susan
I was really strong heading into the surgery piece of this ordeal, and weathered it very well. But when I went to my strength reserves prior to starting chemo, I found I had very little left.
So, I will be taking the next 2 weeks to enjoy my life, gain some clarity, and build up my inner reserves.
Please forgive me if I seem out of touch during this time. I'm just hunkering down for the next round.
Love,
Susan
Friday, August 6, 2010
Scheduling Help
Hello all, this is Brett, commandeering Susan't blog for this post. Thank you all for your emails and calls -- it really is a blessing and comfort. That said, we're gearing up for a fight and we're going to need to some help. I'll be heading the charge on arranging and scheduling the next 6 months of the battle. We need help, so if you can help, now is the time. Susan's chemo schedule will probably run from 8/19 to 11/25, every other week, on Thursdays. This means she will get treatment on Thursday, and "recover" Friday through Sunday if all goes well. Right now we are just scheduling through the end of November to cover the chemo treatments. Stay tuned for the radiation schedule in December.
We need help with the following, ESPECIALLY on chemo weekends:
1. Someone to join Susan at chemo treatments. (Probably for 3-4 hours for the first 4 treatments, and less for the last 4. We will know more as things progress.) Dates are Thursdays: August 19, Sept. 2, 16, 30, Oct. 14, 28, Nov. 11 and 24. I would love to be there at each one, but I can't miss more work than I already have.
2. Someone to stay with us and help out during chemo weekends. Susan will probably be sleeping a lot and having flu-like symptoms. This is your time to visit from out-of-town, if you want to do so. We have a guest room with a queen-sized bed, and you are more than welcome to stay with us. Weekends correspond with the chemo dates listed above. Projects would include grocery shopping, child-shuttling, laundry, straightening up, and random other errands.
3. Meals. Susan and Grace eat gluten-free. Too much gluten gives them indigestion, but it's not an allergy, so they can have a little bit here and there. Bread crumbs on a casserole, soy sauce, or cookie dough in ice cream, are small enough amounts not to be a problem. We are trying to steer clear of meat and dairy, but are also realistic and flexible enough to have a little bit every now and then. If you need ideas, we can email you a list. Or give us a call and see what we are in the mood for. If you are an out-of-town friend who wants to help, gift cards to restaurants would be great. We like the Bozeman Bistro, Naked Noodle, I-Ho's, and La Parilla.
4. House care. Recycling, cleaning, yard work, etc. We could use an in-town volunteer to take out the recycling every 2 weeks. And the garden could use a good weeding every week or two as well. We do hire someone to mow the lawn. For out-of-town friends looking to help; we do have a cleaning service that comes every 2 weeks for an hour to hit the high spots. It was a splurge we made when Susan was commuting 300 miles a week for her job, as our budget allowed. We would love it if they could come every week. Contact Leah Bernacascel of the Cleaning Ladies at 360-929-5792 (cell) if you are interested in sponsoring some cleaning times.
5. Visitors. If you want to come over for dinner or a cup of tea, please do. We like the company. You're not a "burden," as long as you can deal with a happy, informal, slightly chaotic family.
6. Carpentry and building skills. We are coming to the end of a 3 year house building project. We've managed to get it this far with a lot of hard work on our part. That work needs to be put on hold during this time, as we can only handle so many things at once. But if you have carpentry, trim, or paint skills that you would like to bless us with, we would welcome you with open arms.
To keep meals and helpers organized, we have set up an on-line calendar at:
Fill out the right-hand side of the form which is a "Request to Join the Community." This is just registering with email and a name. Once you've done this, I will approve you (by that night), and you will be sent instructions for setting a password and signing in.
Check out the calendar and volunteer!
Feel free to drop me a line at any time with any questions: bretttallman@hotmail.com or (406) 600-2571 (cell).
Thank you so much for all of your help. In the spirit of making lemonade from lemons, I'm looking forward to having so much more of our friends and family in our lives...
Sincerely and gratefully yours,
Brett
We need help with the following, ESPECIALLY on chemo weekends:
1. Someone to join Susan at chemo treatments. (Probably for 3-4 hours for the first 4 treatments, and less for the last 4. We will know more as things progress.) Dates are Thursdays: August 19, Sept. 2, 16, 30, Oct. 14, 28, Nov. 11 and 24. I would love to be there at each one, but I can't miss more work than I already have.
2. Someone to stay with us and help out during chemo weekends. Susan will probably be sleeping a lot and having flu-like symptoms. This is your time to visit from out-of-town, if you want to do so. We have a guest room with a queen-sized bed, and you are more than welcome to stay with us. Weekends correspond with the chemo dates listed above. Projects would include grocery shopping, child-shuttling, laundry, straightening up, and random other errands.
3. Meals. Susan and Grace eat gluten-free. Too much gluten gives them indigestion, but it's not an allergy, so they can have a little bit here and there. Bread crumbs on a casserole, soy sauce, or cookie dough in ice cream, are small enough amounts not to be a problem. We are trying to steer clear of meat and dairy, but are also realistic and flexible enough to have a little bit every now and then. If you need ideas, we can email you a list. Or give us a call and see what we are in the mood for. If you are an out-of-town friend who wants to help, gift cards to restaurants would be great. We like the Bozeman Bistro, Naked Noodle, I-Ho's, and La Parilla.
4. House care. Recycling, cleaning, yard work, etc. We could use an in-town volunteer to take out the recycling every 2 weeks. And the garden could use a good weeding every week or two as well. We do hire someone to mow the lawn. For out-of-town friends looking to help; we do have a cleaning service that comes every 2 weeks for an hour to hit the high spots. It was a splurge we made when Susan was commuting 300 miles a week for her job, as our budget allowed. We would love it if they could come every week. Contact Leah Bernacascel of the Cleaning Ladies at 360-929-5792 (cell) if you are interested in sponsoring some cleaning times.
5. Visitors. If you want to come over for dinner or a cup of tea, please do. We like the company. You're not a "burden," as long as you can deal with a happy, informal, slightly chaotic family.
6. Carpentry and building skills. We are coming to the end of a 3 year house building project. We've managed to get it this far with a lot of hard work on our part. That work needs to be put on hold during this time, as we can only handle so many things at once. But if you have carpentry, trim, or paint skills that you would like to bless us with, we would welcome you with open arms.
To keep meals and helpers organized, we have set up an on-line calendar at:
www.lotsahelpinghands.com.
You will need to use the following code to sign in:https://lotsahelpinghands.com/c/629411/
Fill out the right-hand side of the form which is a "Request to Join the Community." This is just registering with email and a name. Once you've done this, I will approve you (by that night), and you will be sent instructions for setting a password and signing in.
Check out the calendar and volunteer!
Feel free to drop me a line at any time with any questions: bretttallman@hotmail.com or (406) 600-2571 (cell).
Thank you so much for all of your help. In the spirit of making lemonade from lemons, I'm looking forward to having so much more of our friends and family in our lives...
Sincerely and gratefully yours,
Brett
Saturday, July 31, 2010
Results and a Plan
Hey everybody...
We are back in Bozeman and getting our heads around what to do next. This week we received the final pathology report and have a better idea of what the next few months will look like for us. It's nice to have the surgery in the rearview mirror and heading towards the next step.
I am still laid up but getting stronger all the time. It's frustrating to be so dependent on others for simple tasks such as combing my hair, driving, and opening medicine bottles. I am hoping that in a few weeks I will have all of my movement back. I am planning to be back at work on Monday. We will see how it goes.
This week we learned that those pesky lymph nodes caused more of a problem than we had thought. The surgeon removed 15 lymph nodes from the right side, with 4 testing positive for cancer. This was a surprise for all of us. Almost everyone on the team was assuming I would be at stage 1, since the tumor itself was so small (1 cm) and no positive nodes showed up on the MRI. Personally, I felt that stage 1 would be a nice reward for my diligence and early screening. It was a nice fantasy while it lasted.
No positive nodes would leave me at stage 1. If I had 1 to 3 positive nodes, I would be at stage 2. But that 4th node bumps me right over into stage 3. It's an arbitrary line that surgeons have drawn in the sand. And our surgeon was very reassuring that it is still very manageable. But still, I really do not care to be at stage 3 when there are only 4 total stages for this ludicrous disease.
This changes the game plan for us for the next few months. My oncologist had thought I might be able to get away with no chemo, or at most do a "gentle" regimen of CMF, which would make me tired, but wouldn't make my hair fall out or cause nausea. Instead, I am now scheduled for 4 months of dose dense treatment of TAC. TAC is the "big gun" with the side effects of complete hair loss, nausea, and fatigue. I will probably start about the third week of August and go every other week until the end of November. After that, it's daily radiation for 6 weeks. Hopefully. this ordeal will be over sometime in January of 2011.
Everyone has been so kind to us and have asked how they can help. Today we sat down and did some planning and decided that visits and meals would be 2 practical things that people could do.
We love having people over to our house. It really lifts our spirits to hear what's going on in the "non-cancer" world and to just connect with people. Please drop by and visit if you can. It doesn't take much to put on the teakettle and chat for a bit. Dinners are most welcome too. You could double our pleasure by bringing dinner and staying to enjoy it with us. We would be happy to have you.
Our diet has become a bit funky lately. We have become gluten-free vegans. (No meat, no dairy, no wheat.) This will serve to make us terribly unpopular as dinner guests, I fear. If you want to make a meal, but are stumped on what to make, feel free to call or email and we can give you some ideas.
Peace,
Susan
We are back in Bozeman and getting our heads around what to do next. This week we received the final pathology report and have a better idea of what the next few months will look like for us. It's nice to have the surgery in the rearview mirror and heading towards the next step.
I am still laid up but getting stronger all the time. It's frustrating to be so dependent on others for simple tasks such as combing my hair, driving, and opening medicine bottles. I am hoping that in a few weeks I will have all of my movement back. I am planning to be back at work on Monday. We will see how it goes.
This week we learned that those pesky lymph nodes caused more of a problem than we had thought. The surgeon removed 15 lymph nodes from the right side, with 4 testing positive for cancer. This was a surprise for all of us. Almost everyone on the team was assuming I would be at stage 1, since the tumor itself was so small (1 cm) and no positive nodes showed up on the MRI. Personally, I felt that stage 1 would be a nice reward for my diligence and early screening. It was a nice fantasy while it lasted.
No positive nodes would leave me at stage 1. If I had 1 to 3 positive nodes, I would be at stage 2. But that 4th node bumps me right over into stage 3. It's an arbitrary line that surgeons have drawn in the sand. And our surgeon was very reassuring that it is still very manageable. But still, I really do not care to be at stage 3 when there are only 4 total stages for this ludicrous disease.
This changes the game plan for us for the next few months. My oncologist had thought I might be able to get away with no chemo, or at most do a "gentle" regimen of CMF, which would make me tired, but wouldn't make my hair fall out or cause nausea. Instead, I am now scheduled for 4 months of dose dense treatment of TAC. TAC is the "big gun" with the side effects of complete hair loss, nausea, and fatigue. I will probably start about the third week of August and go every other week until the end of November. After that, it's daily radiation for 6 weeks. Hopefully. this ordeal will be over sometime in January of 2011.
Everyone has been so kind to us and have asked how they can help. Today we sat down and did some planning and decided that visits and meals would be 2 practical things that people could do.
We love having people over to our house. It really lifts our spirits to hear what's going on in the "non-cancer" world and to just connect with people. Please drop by and visit if you can. It doesn't take much to put on the teakettle and chat for a bit. Dinners are most welcome too. You could double our pleasure by bringing dinner and staying to enjoy it with us. We would be happy to have you.
Our diet has become a bit funky lately. We have become gluten-free vegans. (No meat, no dairy, no wheat.) This will serve to make us terribly unpopular as dinner guests, I fear. If you want to make a meal, but are stumped on what to make, feel free to call or email and we can give you some ideas.
Peace,
Susan
Wednesday, July 28, 2010
How We Found It - Part 1
I thought I should write a post to give the backstory of how we got here. I thought it would be helpful for my "sistas" out there to know. I'm especially thinking my younger cousin A could use this information.
Where to begin...
Because of my mom's history of breast cancer, I have been getting mammograms since I was 22. From 22 to 35, I had a mammo about every 4 to 5 years. Then at 35 I started going every year.
The problem with mammos is that they don't see everything. In fact, they miss about 20% of tumors. My breast tissue was very dense, which mimics the look of tumor tissue. In addition, because my tissue was very lumpy, self-exams were never effective. I would joke that you could park a Mac truck in there and I would never know. Prior to being diagnosed, the radiologists couldn't see the tumor on the mammogram, nor could anyone feel it. It really was a fluke that we caught it at all.
I went for my annual mammogram in December of 2009. During the exam, the radiologist saw something on the left that looked suspicious and recommended we take a look with ultrasound . "While we're at it, let's look at the right side too" he said. The ultrasound (us) showed nothing on the left, but it did pick up the 1 cm tumor on the right. Had he not thought to look on both sides, I would still be walking around with cancer in my body, completely oblivious to any danger. So I'm grateful to Dr. R for catching it.
The tumor was biopsied in January 2010. But the radiologist who did the biopsy missed the spot. The lab results showed that the spot was benign. This wasn't a surprise to us, since we were very optimistic that everything was just fine.
In December, Dr. R had strongly recommended that I get an MRI. Family history plus dense tissue were his main reasons. My insurance refused to cover it, however. At this point, I could have dropped it and decided to not press it any further. But I couldn't shake the feeling that I needed to get this done. I met with an oncologist on February, Dr. H. He wrote a letter to my insurance which persuaded them to cover the half of the cost.
Even with the insurance, the cost to us would be $1500. Brett and I went back and forth on if I should do it or not. Everything we read told us that false positives were common MRI results for young women with dense tissue. We were worried that we would be throwing money away just to put myself through more biopsies with benign results.
Finally, we decided that we should do it just to get a baseline image. Then we could repeat it in 5 years if needed. It was a tough choice. At the time, I had no idea what it would lead to.
I had the MRI done on March 6th. The tumor on the right side showed up again, along with a smaller one on the right and a smaller one on the left. We went on our spring break to Seattle and met with the radiologist when we came back.
This fellow was different than the other radiologists we had worked with. He didn't want to answer our questions and was very defensive when we questioned his recommendation to repeat the biopsy. We were operating from the perspective that everything was fine... we had a negative biopsy result from January, right? So why should we go through it again?
The staff at the Bozeman cancer center didn't have a protocol for dealing with this specific situation. In April, I met with a surgeon, an oncologist, and another radiologist and heard 3 different opinions on what we should do next. It was very, very frustrating and confusing.
After talking with my dad about what was happening, he recommended we go to Mayo Clinic, or a similar facility for follow-up care. So in May, we went to the Seattle Cancer Care Alliance.
Where to begin...
Because of my mom's history of breast cancer, I have been getting mammograms since I was 22. From 22 to 35, I had a mammo about every 4 to 5 years. Then at 35 I started going every year.
The problem with mammos is that they don't see everything. In fact, they miss about 20% of tumors. My breast tissue was very dense, which mimics the look of tumor tissue. In addition, because my tissue was very lumpy, self-exams were never effective. I would joke that you could park a Mac truck in there and I would never know. Prior to being diagnosed, the radiologists couldn't see the tumor on the mammogram, nor could anyone feel it. It really was a fluke that we caught it at all.
I went for my annual mammogram in December of 2009. During the exam, the radiologist saw something on the left that looked suspicious and recommended we take a look with ultrasound . "While we're at it, let's look at the right side too" he said. The ultrasound (us) showed nothing on the left, but it did pick up the 1 cm tumor on the right. Had he not thought to look on both sides, I would still be walking around with cancer in my body, completely oblivious to any danger. So I'm grateful to Dr. R for catching it.
The tumor was biopsied in January 2010. But the radiologist who did the biopsy missed the spot. The lab results showed that the spot was benign. This wasn't a surprise to us, since we were very optimistic that everything was just fine.
In December, Dr. R had strongly recommended that I get an MRI. Family history plus dense tissue were his main reasons. My insurance refused to cover it, however. At this point, I could have dropped it and decided to not press it any further. But I couldn't shake the feeling that I needed to get this done. I met with an oncologist on February, Dr. H. He wrote a letter to my insurance which persuaded them to cover the half of the cost.
Even with the insurance, the cost to us would be $1500. Brett and I went back and forth on if I should do it or not. Everything we read told us that false positives were common MRI results for young women with dense tissue. We were worried that we would be throwing money away just to put myself through more biopsies with benign results.
Finally, we decided that we should do it just to get a baseline image. Then we could repeat it in 5 years if needed. It was a tough choice. At the time, I had no idea what it would lead to.
I had the MRI done on March 6th. The tumor on the right side showed up again, along with a smaller one on the right and a smaller one on the left. We went on our spring break to Seattle and met with the radiologist when we came back.
This fellow was different than the other radiologists we had worked with. He didn't want to answer our questions and was very defensive when we questioned his recommendation to repeat the biopsy. We were operating from the perspective that everything was fine... we had a negative biopsy result from January, right? So why should we go through it again?
The staff at the Bozeman cancer center didn't have a protocol for dealing with this specific situation. In April, I met with a surgeon, an oncologist, and another radiologist and heard 3 different opinions on what we should do next. It was very, very frustrating and confusing.
After talking with my dad about what was happening, he recommended we go to Mayo Clinic, or a similar facility for follow-up care. So in May, we went to the Seattle Cancer Care Alliance.
Friday, July 23, 2010
Out of the hospital
I just came "home" from UW hospital. I'm so glad we rented a vacation house, as it's comforting to be in a house setting.
I am physically sore. I feel like I've been hit by a Mac truck. My chest looks deformed and mutilated. I'm emotionally exhausted and feeling weak. It's taking every ounce of strength I have to not curl up into a fetal position and just cry and cry. The enormity of the loss is overwhelming. Great. As I'm typing this I'm starting to cry. So much for that idea.
Why did there have to be cancer in the lymph nodes? I kept holding on to the hope that this wouldn't be the case. But I seem to keep falling into the wrong side of the odds at almost every turn in this journey. I'm really scared about what might happen next. When I think of my life, I see myself living a long, productive life. Cancer isn't part of that plan.
Tomorrow we will start driving back to Montana. We will stay in Spokane tomorrow night and break the trip into 2 days.
My support team has been amazing. Brett is so kind. Gracie is so sweet and put up decorations in my room. And Aunt Carol is our "Ace in the Hole." She knows just what to do and is writing down everything that happens because I can't remember anything the doctors and nurses tell me.
This is all I can write for today. We will be home in Bozeman on Sunday night. So perhaps I will have more news on Monday.
Love,
Susan
I am physically sore. I feel like I've been hit by a Mac truck. My chest looks deformed and mutilated. I'm emotionally exhausted and feeling weak. It's taking every ounce of strength I have to not curl up into a fetal position and just cry and cry. The enormity of the loss is overwhelming. Great. As I'm typing this I'm starting to cry. So much for that idea.
Why did there have to be cancer in the lymph nodes? I kept holding on to the hope that this wouldn't be the case. But I seem to keep falling into the wrong side of the odds at almost every turn in this journey. I'm really scared about what might happen next. When I think of my life, I see myself living a long, productive life. Cancer isn't part of that plan.
Tomorrow we will start driving back to Montana. We will stay in Spokane tomorrow night and break the trip into 2 days.
My support team has been amazing. Brett is so kind. Gracie is so sweet and put up decorations in my room. And Aunt Carol is our "Ace in the Hole." She knows just what to do and is writing down everything that happens because I can't remember anything the doctors and nurses tell me.
This is all I can write for today. We will be home in Bozeman on Sunday night. So perhaps I will have more news on Monday.
Love,
Susan
Thursday, July 22, 2010
Out of surgery
Today is Thursday the 22nd. I had the double mastectomy yesterday, and am still at the hospital healing up and trying to find the right combination of pain meds. I don't need to worry about becoming a morphine addict any time soon, as it makes me break out in a rash. Not fun.
The full pathology report won't be available for about 4 days. At that point we will have a better idea of the stage of the cancer. Unfortunately, the sentinel nodes on the right side were cancerous, so they had to take a group axillary nodes from the right side. In practical terms, this means that I can no longer be at Stage 1. It's a huge disappointment. It probably means I will need an aggressive chemotherapy cocktail with radiation to follow.
I haven't really processed all of this yet. As of right now, I am calm and in good spirits. If I start thinking too far ahead into the future, I will be overwhelmed. All I know is the "now." Now I am writing to friends and family. After this, I will watch some fluffy TV show and then get some sleep.
There is so much more I could say, but I'm starting to feel groggy from the meds. I will sign off now and write more as I can.
Love,
Susan
The full pathology report won't be available for about 4 days. At that point we will have a better idea of the stage of the cancer. Unfortunately, the sentinel nodes on the right side were cancerous, so they had to take a group axillary nodes from the right side. In practical terms, this means that I can no longer be at Stage 1. It's a huge disappointment. It probably means I will need an aggressive chemotherapy cocktail with radiation to follow.
I haven't really processed all of this yet. As of right now, I am calm and in good spirits. If I start thinking too far ahead into the future, I will be overwhelmed. All I know is the "now." Now I am writing to friends and family. After this, I will watch some fluffy TV show and then get some sleep.
There is so much more I could say, but I'm starting to feel groggy from the meds. I will sign off now and write more as I can.
Love,
Susan
Sunday, July 18, 2010
Wagons Ho!
Sunday morning, July 18th. We are all packed and ready to go. I realize I have been an absent blogger, so I'll give the latest update in a nutshell.
The past few weeks have been a flurry of activity as we have been preparing for this. Thanks to the help of some amazing friends, our master bedroom is now painted! We moved back into it this Wednesday and are happy to be back in our own space.
I can't say that I'm "ready" to go and do this. It's very difficult to describe all of the emotions surrounding this. Yesterday I was joking with Grace that we could just pretend this isn't happening and not go for this surgery. She said,"Mom, that's ridiculous! Then you would still have cancer in your body! Your getting it out, and that's final!" So there you have it. Out of the mouths of babes.
We are driving to Idaho today and stopping to take in a waterslide. No sense missing an opportunity for fun when you have it!
Everyone is out in the car waiting for me. I am the last to leave. Not kicking and screaming exactly, but not really looking forward to the week that lies ahead, either.
I will write more as I have time.
Love,
Susan
The past few weeks have been a flurry of activity as we have been preparing for this. Thanks to the help of some amazing friends, our master bedroom is now painted! We moved back into it this Wednesday and are happy to be back in our own space.
I can't say that I'm "ready" to go and do this. It's very difficult to describe all of the emotions surrounding this. Yesterday I was joking with Grace that we could just pretend this isn't happening and not go for this surgery. She said,"Mom, that's ridiculous! Then you would still have cancer in your body! Your getting it out, and that's final!" So there you have it. Out of the mouths of babes.
We are driving to Idaho today and stopping to take in a waterslide. No sense missing an opportunity for fun when you have it!
Everyone is out in the car waiting for me. I am the last to leave. Not kicking and screaming exactly, but not really looking forward to the week that lies ahead, either.
I will write more as I have time.
Love,
Susan
Sunday, June 27, 2010
Sunday afternoon update
It's Sunday afternoon. We have just returned from a great hike and a stop at Baskin Robbins. I am taking it easy on the couch while writing this update.
This past week has been an intense time of planning and gathering information. A few logistical items to note: My dear Aunt C. has agreed to drive with us out to Seattle and my powerhouse mother-in-law is coming to be with us for a week when we return to Bozeman. I have asked my dad to do all the internet searching to find us a rental house to stay in while we are there. It truly takes a team to make this all work out. So thanks, team.
Someone did a very kind thing for me this week. A friend of a friend whom I have never met just had a double mastectomy at the beginning of May. She is my age, with 2 little kids. She took the initiative to call me up and came to my house to visit. She showed me her chest and what the surgery looked like 6 weeks afterwards. And I have to say, it's not nearly as bad as I had imagined. Granted, she had her reconstruction at the same time as the mastectomy. But it relieved an enormous amount of anxiety on my part to see what this actually looked like. I was very touched by her bravery to reach out to a complete stranger.
On a more difficult note, this week I also met with a fertility specialist. We haven't really shared this with many people, but we have been trying to have another child for awhile. A doctor finally identified the source of the problem as a physical blockage. In January it was removed, and all systems were go. We were moving forward with "The Beta Project" when this cancer diagnosis hit. As we have learned more about chemotherapy, we are both reeling with the news that it will probably leave me sterile. This news is probably more devastating than dealing with the loss of my breasts. There is one option available to us, which is to use IVF techniques to freeze embryos and use them in several years when I am cancer-free. So along with all the other decisions that we are making, we are trying to navigate this one as well. It's complicated and difficult and requires us to do a lot of soul-searching in a very short amount of time. If we decide to move forward with this, we will need to return to Seattle after the surgery and prior to chemotherapy for the procedure. There is a window of time in August when this could happen. We would appreciate prayers for wisdom and honesty as we deal with this. We need clear heads to make the best decision that we can.
Thankfully, the Livestrong Foundation runs a program that helps cancer survivors with the financial costs of preserving fertility called Fertile Hope. If we decide to go this route, the Foundation will help to offset the costs. Over the past week or two, I have received amazing information and personal advice from their staff on this topic and more. I can't say enough good things about this organization and am looking forward to supporting them in the future.
Our workday this Saturday was a bit of a bust, but we did get some good work done and had a good time in the process. We had one dear friend plus my brother show up. Our timing seems to have coincided with the first nice summer weekend in Montana. And our PR wasn't that great either. So we will try again on July 10th. In a perfect world, Brett and I would spend 2 weeks in Hawaii while a complete team of carpenters finished the house. But since we don't live in that world, we will keep working away.
Grace has just invitated me to play Pokemon Cards. So I will sign off for now.
Love,
Susan
This past week has been an intense time of planning and gathering information. A few logistical items to note: My dear Aunt C. has agreed to drive with us out to Seattle and my powerhouse mother-in-law is coming to be with us for a week when we return to Bozeman. I have asked my dad to do all the internet searching to find us a rental house to stay in while we are there. It truly takes a team to make this all work out. So thanks, team.
Someone did a very kind thing for me this week. A friend of a friend whom I have never met just had a double mastectomy at the beginning of May. She is my age, with 2 little kids. She took the initiative to call me up and came to my house to visit. She showed me her chest and what the surgery looked like 6 weeks afterwards. And I have to say, it's not nearly as bad as I had imagined. Granted, she had her reconstruction at the same time as the mastectomy. But it relieved an enormous amount of anxiety on my part to see what this actually looked like. I was very touched by her bravery to reach out to a complete stranger.
On a more difficult note, this week I also met with a fertility specialist. We haven't really shared this with many people, but we have been trying to have another child for awhile. A doctor finally identified the source of the problem as a physical blockage. In January it was removed, and all systems were go. We were moving forward with "The Beta Project" when this cancer diagnosis hit. As we have learned more about chemotherapy, we are both reeling with the news that it will probably leave me sterile. This news is probably more devastating than dealing with the loss of my breasts. There is one option available to us, which is to use IVF techniques to freeze embryos and use them in several years when I am cancer-free. So along with all the other decisions that we are making, we are trying to navigate this one as well. It's complicated and difficult and requires us to do a lot of soul-searching in a very short amount of time. If we decide to move forward with this, we will need to return to Seattle after the surgery and prior to chemotherapy for the procedure. There is a window of time in August when this could happen. We would appreciate prayers for wisdom and honesty as we deal with this. We need clear heads to make the best decision that we can.
Thankfully, the Livestrong Foundation runs a program that helps cancer survivors with the financial costs of preserving fertility called Fertile Hope. If we decide to go this route, the Foundation will help to offset the costs. Over the past week or two, I have received amazing information and personal advice from their staff on this topic and more. I can't say enough good things about this organization and am looking forward to supporting them in the future.
Our workday this Saturday was a bit of a bust, but we did get some good work done and had a good time in the process. We had one dear friend plus my brother show up. Our timing seems to have coincided with the first nice summer weekend in Montana. And our PR wasn't that great either. So we will try again on July 10th. In a perfect world, Brett and I would spend 2 weeks in Hawaii while a complete team of carpenters finished the house. But since we don't live in that world, we will keep working away.
Grace has just invitated me to play Pokemon Cards. So I will sign off for now.
Love,
Susan
Sunday, June 20, 2010
Upcoming Dates
We have a date set for surgery: Wednesday, July 21st. We will drive out to Seattle on the weekend prior (18th) and drive back the weekend afterwards (24th.) The surgery itself takes only 3 hours and requires only 1 night in the hospital.
I am taking some comfort in the fact that it is 4 weeks away. It gives us time to prepare, and it means I must not be in really bad shape if it can wait that long.
I have been really touched and uplifted by everyone's emails, phone calls, and cards. Thank you. I wanted to let everyone know that I have read and listened to them all and wish I could respond to each one personally. I had a dear friend ask me today if I had offended her because I hadn't responded to a recent email. Goodness, no! If you are thinking the same thing, the answer is the same! No one has offended me! I am just in over my head right now.
Cancer is like taking on another full time job. I am researching treatment options, changing my eating and cooking habits, making appointments, navigating bills and insurance, continuing to be a wife and mom, get sleep, meditate, and exercise. And work my real, full time job at the same time. Whew! It's a lot to handle. So please keep sending messages. Your encouragement keeps me going.
Many people have been so kind to reach out to us and ask how they can help. One of the things we are trying to do right now is prepare as much as we can for the long, upcoming months of treatment. We would like to get our house in better shape to lift some of the mental weight that we feel. Before the cancer hit, Brett and I were steadily working on finishing our house together; working on projects every weekend and many evenings. But now those projects have been put on hold.
We would like to host 2 workdays and invite anyone who is interested to come and help; Saturday, June 26th and Saturday, July 10th. Please come if you can! We will provide food and drink and will get started at 9 am each day. If you are thinking of coming, please let us know so that we can estimate food and building supplies. We will have all the tools and supplies ready to go. If you would like to help, but can't come on these days, we surely would welcome the help whenever you can make it.
Thank you. Thank you. Thank you. This week, our assistant priest and deacon came to pray with us. I mentioned to her that we can't do this on our own. She very wisely said, "You know, I don't think we are meant to." Brett and I are used to handling so much of life on our own. Asking for help is not something we are familiar with. But already, we see that making it through this difficult time takes a group effort. And we are extremely grateful for your love, support, and help.
Love,
Susan
I am taking some comfort in the fact that it is 4 weeks away. It gives us time to prepare, and it means I must not be in really bad shape if it can wait that long.
I have been really touched and uplifted by everyone's emails, phone calls, and cards. Thank you. I wanted to let everyone know that I have read and listened to them all and wish I could respond to each one personally. I had a dear friend ask me today if I had offended her because I hadn't responded to a recent email. Goodness, no! If you are thinking the same thing, the answer is the same! No one has offended me! I am just in over my head right now.
Cancer is like taking on another full time job. I am researching treatment options, changing my eating and cooking habits, making appointments, navigating bills and insurance, continuing to be a wife and mom, get sleep, meditate, and exercise. And work my real, full time job at the same time. Whew! It's a lot to handle. So please keep sending messages. Your encouragement keeps me going.
Many people have been so kind to reach out to us and ask how they can help. One of the things we are trying to do right now is prepare as much as we can for the long, upcoming months of treatment. We would like to get our house in better shape to lift some of the mental weight that we feel. Before the cancer hit, Brett and I were steadily working on finishing our house together; working on projects every weekend and many evenings. But now those projects have been put on hold.
We would like to host 2 workdays and invite anyone who is interested to come and help; Saturday, June 26th and Saturday, July 10th. Please come if you can! We will provide food and drink and will get started at 9 am each day. If you are thinking of coming, please let us know so that we can estimate food and building supplies. We will have all the tools and supplies ready to go. If you would like to help, but can't come on these days, we surely would welcome the help whenever you can make it.
Thank you. Thank you. Thank you. This week, our assistant priest and deacon came to pray with us. I mentioned to her that we can't do this on our own. She very wisely said, "You know, I don't think we are meant to." Brett and I are used to handling so much of life on our own. Asking for help is not something we are familiar with. But already, we see that making it through this difficult time takes a group effort. And we are extremely grateful for your love, support, and help.
Love,
Susan
Thursday, June 17, 2010
Introduction to Beautiful and Strong
I thought I would write a proper introduction to my blog; something like a Grand Opening or a manifesto.
When I first shared my diagnosis, several friends recommended the CaringBridge website as a way to post how I was doing. The first thought that ran through my mind was "CaringBridge is for sick people! And that's not me!" I decided a blog was better. Because I believe that this will be a bump in the road for me. In 30 or 40 years I will look back on 2010 and think, "Boy, that was a very difficult time." I wanted to create a place to update friends and family on my adventures and expeditions for the years to come. I wanted a place that will still be here once cancer is a long-gone memory in my life. I don't want an illness to be the defining feature of my communication.
The name "Beautiful and Strong" comes from my husband, Brett. Every morning before Grace goes off to school he asks her, "What are you going to be today, Grace?" And she says, "Beautiful and strong, Daddy!" just like he taught her. And when he picks her up from school he always asks her to name the specific things she did that were beautiful and strong. So I'm borrowing the phrase from a good source.
Writing a blog is new for me. I'm not used to publicly broadcasting my thoughts and feelings to the world at large. I tend to be a more private person, and the internet-age trend of divulging every emotional up and down seems a bit tacky to me.
But I have realized a few things lately. First, our little family can't do this alone. We need help. And people won't know what we need unless we say something. Secondly, I have gained a lot of strength and courage from the love and encouragement everyone has sent my way over the past couple of weeks. Being able to admit weakness and celebrate triumph with everyone as a group means I am not isolated and don't have to do this alone. So thank you for letting me do this.
I plan to use this blog not only as a source of communication, but as an emotional outlet. Most of the time, things will probably be on a very normal, even keel. But I am sure there will be times of raw revelation. Have faith that these times are a normal part of life. You don't need to fix them. And probably within a few days I will have regained my equilibrium. I can't spend too much of my time worrying about who I might offend with random swear words or momentary lapses in faith. So feel free not to read this blog if something I write makes you feel uncomfortable.
Also, this is fairly personal stuff. I envision my audience to be close friends and family who want to know what's going on. I would prefer it not be forwarded to a large audience of people who don't know me. If you have put me on a prayer list, please, please do not send this blog link to them. I do not want to hear from your Great Aunt Mildred in Ft. Lauderdale, whom I have never met. Only people who know me as a flesh and blood person should be reading this. Thanks for understanding.
Of course, the obvious "personal stuff" that I'm talking about here are my breasts. It will be impossible to write about breast cancer without talking about them. Great. Could it be any more intimate and vulnerable? I remember when I was 16 and my grandma checked out my chest and commented how much I had grown since last year. I was mortified. So posting this in an online forum has that same feeling. I don't mean to embarrass anyone, but there's no way around it. I have put some thought into this and have decided that if my openness leads to early detection and positive outcomes for my younger cousins, my friends, and my daughter, then I will choose to talk about it rather than be quiet.
One request: I welcome your prayers and am very thankful for them. But please do not post typed prayers here or on Facebook as it makes me feel very uncomfortable. Everyone is different, but for me, faith is a very quiet and personal thing and not something I care to make public. Thanks.
This will probably be the last time I link the blog to my Facebook page, as FB feels like too public of a forum for this stuff. Instead, I will create posts here without sending out a notice. It may take me some time to figure out the best way to do this, so bear with me.
If you've read this all the way to the end, thanks for staying with me. It's going to be quite a ride.
Be beautiful and strong.
Love,
Susan
When I first shared my diagnosis, several friends recommended the CaringBridge website as a way to post how I was doing. The first thought that ran through my mind was "CaringBridge is for sick people! And that's not me!" I decided a blog was better. Because I believe that this will be a bump in the road for me. In 30 or 40 years I will look back on 2010 and think, "Boy, that was a very difficult time." I wanted to create a place to update friends and family on my adventures and expeditions for the years to come. I wanted a place that will still be here once cancer is a long-gone memory in my life. I don't want an illness to be the defining feature of my communication.
The name "Beautiful and Strong" comes from my husband, Brett. Every morning before Grace goes off to school he asks her, "What are you going to be today, Grace?" And she says, "Beautiful and strong, Daddy!" just like he taught her. And when he picks her up from school he always asks her to name the specific things she did that were beautiful and strong. So I'm borrowing the phrase from a good source.
Writing a blog is new for me. I'm not used to publicly broadcasting my thoughts and feelings to the world at large. I tend to be a more private person, and the internet-age trend of divulging every emotional up and down seems a bit tacky to me.
But I have realized a few things lately. First, our little family can't do this alone. We need help. And people won't know what we need unless we say something. Secondly, I have gained a lot of strength and courage from the love and encouragement everyone has sent my way over the past couple of weeks. Being able to admit weakness and celebrate triumph with everyone as a group means I am not isolated and don't have to do this alone. So thank you for letting me do this.
I plan to use this blog not only as a source of communication, but as an emotional outlet. Most of the time, things will probably be on a very normal, even keel. But I am sure there will be times of raw revelation. Have faith that these times are a normal part of life. You don't need to fix them. And probably within a few days I will have regained my equilibrium. I can't spend too much of my time worrying about who I might offend with random swear words or momentary lapses in faith. So feel free not to read this blog if something I write makes you feel uncomfortable.
Also, this is fairly personal stuff. I envision my audience to be close friends and family who want to know what's going on. I would prefer it not be forwarded to a large audience of people who don't know me. If you have put me on a prayer list, please, please do not send this blog link to them. I do not want to hear from your Great Aunt Mildred in Ft. Lauderdale, whom I have never met. Only people who know me as a flesh and blood person should be reading this. Thanks for understanding.
Of course, the obvious "personal stuff" that I'm talking about here are my breasts. It will be impossible to write about breast cancer without talking about them. Great. Could it be any more intimate and vulnerable? I remember when I was 16 and my grandma checked out my chest and commented how much I had grown since last year. I was mortified. So posting this in an online forum has that same feeling. I don't mean to embarrass anyone, but there's no way around it. I have put some thought into this and have decided that if my openness leads to early detection and positive outcomes for my younger cousins, my friends, and my daughter, then I will choose to talk about it rather than be quiet.
One request: I welcome your prayers and am very thankful for them. But please do not post typed prayers here or on Facebook as it makes me feel very uncomfortable. Everyone is different, but for me, faith is a very quiet and personal thing and not something I care to make public. Thanks.
This will probably be the last time I link the blog to my Facebook page, as FB feels like too public of a forum for this stuff. Instead, I will create posts here without sending out a notice. It may take me some time to figure out the best way to do this, so bear with me.
If you've read this all the way to the end, thanks for staying with me. It's going to be quite a ride.
Be beautiful and strong.
Love,
Susan
Saturday, June 12, 2010
Some good news
A small bit of good news we received this week...
I am not a carrier for either breast cancer gene (BRCA1 of BRCA2). This was of some comfort, especially for Grace's sake.
At this point, I'll take any good news I can get.
I am not a carrier for either breast cancer gene (BRCA1 of BRCA2). This was of some comfort, especially for Grace's sake.
At this point, I'll take any good news I can get.
Thursday, June 10, 2010
Test Results
The surgeon called last night with the test results. Unfortunately, it's bad news. The 2 other spots on my right are also cancer. One is only 6 mm, the other are calcifications that classify as DCIS.
This means that 3 of the 4 quadrants have cancer and they will need to do a mastectomy. At this point, I am seriously considering having both breasts removed and reconstructed. Because of the density of my tissue, they cannot catch any tumors with mammography. For my own peace of mind, it may be best to take both now and minimize future worry.
The surgeon did say that even with these 3 small spots, I could still be classified as Stage 1. They won't know for sure until they do surgery and can check the lymph nodes. Every moment I pray, 'Dear God, let those lymph nodes be clean."
We are planning to have the surgery done in Seattle. We have yet to schedule anything, but the surgeons' tentative guess was about the first week of July.
Today and tomorrow I am off work with Grace. We are enjoying some sewing projects and finishing planting the garden.
Love,
Susan
This means that 3 of the 4 quadrants have cancer and they will need to do a mastectomy. At this point, I am seriously considering having both breasts removed and reconstructed. Because of the density of my tissue, they cannot catch any tumors with mammography. For my own peace of mind, it may be best to take both now and minimize future worry.
The surgeon did say that even with these 3 small spots, I could still be classified as Stage 1. They won't know for sure until they do surgery and can check the lymph nodes. Every moment I pray, 'Dear God, let those lymph nodes be clean."
We are planning to have the surgery done in Seattle. We have yet to schedule anything, but the surgeons' tentative guess was about the first week of July.
Today and tomorrow I am off work with Grace. We are enjoying some sewing projects and finishing planting the garden.
Love,
Susan
Saturday, June 5, 2010
News from Seattle
Hi all...
Welcome to my first blog. It's been a crazy time for the Tallmans, and almost impossible to let everyone know what's going on. So here we are.
A quick update:
We are in Seattle. We drove out on Thursday and met with the multi-disciplinary cancer care team at the Seattle Cancer Care Alliance on Friday afternoon. This team includes a surgeon, oncologist, and radiologist. I am really happy to be here. My surgeon is a woman who specializes in breast cancer in young women and the team is very compassionate and knowledgeable. The oncologist is also a woman and a professor at UW medical school. They presented us with the facts that we have so far:
When we first arrived, we stayed at the SCCA house, which is a "hotel" for patients. It was nice and convenient, but depressing. The walls were sterile and it felt more like a hospital than a home away from home. Thanks to Priceline and my smooth-operator husband, we are now at the Westin, in a suite on the top floor with a view of the sound, for the same price. Yep, we're living the dream.
I will write more as we have more information.
Love,
Susan
Welcome to my first blog. It's been a crazy time for the Tallmans, and almost impossible to let everyone know what's going on. So here we are.
A quick update:
We are in Seattle. We drove out on Thursday and met with the multi-disciplinary cancer care team at the Seattle Cancer Care Alliance on Friday afternoon. This team includes a surgeon, oncologist, and radiologist. I am really happy to be here. My surgeon is a woman who specializes in breast cancer in young women and the team is very compassionate and knowledgeable. The oncologist is also a woman and a professor at UW medical school. They presented us with the facts that we have so far:
- An identified tumor of 1 cm on the right. Estrogen and progesterone receptor positive. HER2 negative. The assumption is that this is Stage 1, but this can't be confirmed until after surgery.
- An unidentified 5mm lump on the right. This will be biopsied on Monday.
- Calcifications on the right. These will also be biopsied on Monday.
- After the additional biopsy results, the surgeon will be able to determine if we can do a lumpectomy or if mastectomy is the only option.
- The oncologist recommended all sorts of various chemotherapies and hormonal therapies that were very difficult to hear about. It made me cry. Their goal (as well as mine) is to prevent any recurrence. None of us care too much about the great 5 year survival rates for early stage breast cancer. (100%) What we care about is the 30 to 40 year survival rate. Because I am young, they want to be more aggressive and even admitted that their recommendations might qualify as "over treatment." We have some tough decisions to make. Right now we are gathering information to make the best decision we can.
When we first arrived, we stayed at the SCCA house, which is a "hotel" for patients. It was nice and convenient, but depressing. The walls were sterile and it felt more like a hospital than a home away from home. Thanks to Priceline and my smooth-operator husband, we are now at the Westin, in a suite on the top floor with a view of the sound, for the same price. Yep, we're living the dream.
I will write more as we have more information.
Love,
Susan
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