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.
Sunday, November 28, 2010
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
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