On Tuesday I finished my last round of radiation!
31 rounds.
The goal was 33 but my skin was not doing well,
so my radiation oncologist called it quits.
I can't say I am sad.
My skin is very red, sore and starting to peel off.
I am glad to be done.
What's next?
I will still receive Herceptin chemo treatments until the end of June.
I will still see the physical therapist for my arm.
I will still see the doctors - my oncologist, surgeon, plastic surgeon, and radiation oncologist to "check in".
I will still have surgeries, probably for the next few years - port removal, left mastectomy, reconstruction of both breasts and a hysterectomy.
In a few weeks I will starting taking a pill called Tamoxifen.
Tamoxifen blocks the actions of estrogen, which is what my type of cancer needs to grow.
I am Triple Positive - meaning estrogen, progesterone and HER2 positive.
My doctor is hoping it will prevent any recurrence since I am at high risk due to my age and stage.
I have a prescription for 5 years. But studies are showing 10 years is better.
I could have an allergic reaction to Tamoxifen: hives; difficulty breathing; swelling of face, lips, tongue, or throat.
Or the more common side effects: hot flashes, bone pain, joint pain, or tumor pain, swelling in hands or feet; decreased sex drive, headache, dizziness, depression; or thinning hair.
Some of the serious side effects are:
sudden numbness or weakness, especially on one side of the body;
sudden severe headache, confusion, problems with vision, speech, or balance;
chest pain, sudden cough, wheezing, rapid breathing, fast heart rate;
pain, swelling, warmth, or redness in one or both legs;
nausea, loss of appetite, increased thirst, muscle weakness, confusion, and feeling tired or restless;
unusual vaginal bleeding;
pain or pressure in the pelvic area;
blurred vision, eye pain, or seeing halos around lights;
easy bruising, unusual bleeding (nose, mouth, vagina, or rectum), purple or red pinpoint spots under your skin;
fever, chills, body aches, flu symptoms;
new breast lump; or
upper stomach pain, itching, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes).
And of course increased risk of uterine cancer, stroke, or a blood clot in the lung, which can be fatal.
While these side effects scare me I think it scares me more to be "done".
Sounds silly but these last 8 months have been a constant battle
doing chemotherapy, surgery and radiation to get rid of the cancer.
I felt like I was "battling" it.
The sicker I was the better the treatment was working. Right?
Now it feels like if I am feeling better, I am not fighting to get rid of it.
Sick meant getting better. Now I am not "sick".
Now,
they tell me it is gone, I'm done.
I am in remission.
Or NED - no evidence of disease.
Or maybe even cured!
I am all the words you can use to describe happy: joyful, delighted, pleased, thrilled, elated, ecstatic, blissful, overjoyed, excited, fortunate, lucky, glad, relieved - the list could go on and on.
But...
I am also scared. Anxious. Emotional. Frightened. Fearful. Nervous. Terrified. Panic-stricken. Afraid. Lost. Broken. Suffering from survivor's guilt.
I will find my "new" normal.
My cancer ends here!
But more importantly, I am grateful my story does not.
.
Thursday, February 26, 2015
Thursday, February 12, 2015
Radiation
As I am coming to the end of my radiation treatment I have been asked,
what does radiation feel like?
Honestly, it feels like nothing.
For me it is more embarrassing than anything.
So this is what my typical treatment is like:
Monday through Friday at 11:45am, I am sitting in the Radiation Oncology waiting room.
There is no one there but me, no nurse or secretary at the front desk.
They have a camera so the techs in the back can see me. They come out and get me when they are all set up.
I walk back to a changing room and put on a hospital gown and lock my purse and clothes in a locker.
I walk back to a type of control room and give them my name and date of birth.
Then I follow two techs down a corridor into the radiation room.
I lay down on a hard motorized table and remove my gown.
Sometimes they put a warm blanket on me, sometime they don't.
It is pretty cold in the room without anything on from the waist up.
Then they bind my feet together to help me keep still.
I am lying in what they call a pillow, it is like an upper body cast type mold, made especially for me before treatments started.
It is not really like a pillow, it is not soft.
I lie in it every time to make sure my arms and head are in the right position.
My arms have to be stretched up above my head to be out of the way of the radiation beams.
This is the painful part for me because I still have some issues with my right arm from surgery
where they removed all the lymph nodes.
Also before radiation started I had to have four small tattoos placed on my chest. One on each side and two on my sternum.
The techs use these tattoos to line me up with the laser beams that come out of the walls and ceiling. They push and pull my hips around, and roll the upper part of me to the side a little.
I need to be in the exact same position every time.
There are also other degrees and numbers they use with how high the table has to be and a whole lot of other stuff I don't understand.
Next the techs leave the room and go into the control room where they can see me on multiple cameras.
They double check all the numbers.
The radiation machine also has the capability of taking a type of x-ray image.
I have to have "pictures" taken a few times a week to make sure everything is still in the right place.
They make any adjustments they need to. Then the big rotating arm of the radiation machine moves to the first position, right above my chest.
All I hear is a humming type noise when it is on. I cannot see anything coming out of the machine. In the corner is a small red light that comes on and says, IN USE.
A tech comes back in to place something called Bolus (it is a flat piece of rubber-like material) on top of my chest. This increases the radiation dose to my skin and to the tissues right below it.
He tapes it to me. Then leaves again.
The machine rotates to the second position, just over my left side at an angle and turns on.
Finally the third position is far on my right side, it turns on again. Each time is only between 20-30 seconds.
I just lie there, in the dark and quiet with my eyes closed.
Not because I have to but because most of the time I can see my reflection in the glass of the machine.
I don't like that so much.
I know I am done when the lights turn back on and the tech comes back in the room.
It takes longer to get me set up than the actually radiation treatment.
They lower the table so I can get off.
They tell me I did a good job and say, "See ya tomorrow."
I go back to the changing room, get dressed and see myself out.
Once a week on Mondays I meet with my radiation oncology doctor. He checks my breathing and skin.
Today was my 24th treatment. I will have a total of 32.
The last five, my skin permitting, will be what the doctors call a boost. Instead of targeting my whole right side they give an extra high dose right to my scar incision line. Studies have shown if the cancer comes back, it tends to be in that area.
In the beginning my skin felt warm and tight but usually went away by early evening. Now it looks and feels like a sunburn. I am red all over, my skin is very tight and sensitive. I try to put on lotions and creams at least four times a day. It is painful to wear anything but a shirt but I am also to self-conscious not to wear something to support my "natural side" - as the docs call it. I am glad a friend warned me not to be surprised if my back turned red too. That is where the radiation beams come out. I also have a sore throat because it is close to the beams. The effects of radiation will continue a few weeks to a few months after I am done. My skin may be permanently discolored. So far I have been pretty lucky. The skin can blister and peel.
I will have some scarring in my lungs, but the doctor tells me I won't notice and it will not affect my breathing.
Then of course there is the tired side effect. That too lasts a few weeks after treatment is done.
I am almost finished. Another eight more treatments, or tanning sessions as Ryan calls them.
Then I wait.
what does radiation feel like?
Honestly, it feels like nothing.
For me it is more embarrassing than anything.
So this is what my typical treatment is like:
Monday through Friday at 11:45am, I am sitting in the Radiation Oncology waiting room.
There is no one there but me, no nurse or secretary at the front desk.
They have a camera so the techs in the back can see me. They come out and get me when they are all set up.
I walk back to a changing room and put on a hospital gown and lock my purse and clothes in a locker.
I walk back to a type of control room and give them my name and date of birth.
Then I follow two techs down a corridor into the radiation room.
I lay down on a hard motorized table and remove my gown.
Sometimes they put a warm blanket on me, sometime they don't.
It is pretty cold in the room without anything on from the waist up.
Then they bind my feet together to help me keep still.
I am lying in what they call a pillow, it is like an upper body cast type mold, made especially for me before treatments started.
It is not really like a pillow, it is not soft.
I lie in it every time to make sure my arms and head are in the right position.
My arms have to be stretched up above my head to be out of the way of the radiation beams.
This is the painful part for me because I still have some issues with my right arm from surgery
where they removed all the lymph nodes.
Also before radiation started I had to have four small tattoos placed on my chest. One on each side and two on my sternum.
The techs use these tattoos to line me up with the laser beams that come out of the walls and ceiling. They push and pull my hips around, and roll the upper part of me to the side a little.
I need to be in the exact same position every time.
There are also other degrees and numbers they use with how high the table has to be and a whole lot of other stuff I don't understand.
Next the techs leave the room and go into the control room where they can see me on multiple cameras.
They double check all the numbers.
The radiation machine also has the capability of taking a type of x-ray image.
I have to have "pictures" taken a few times a week to make sure everything is still in the right place.
They make any adjustments they need to. Then the big rotating arm of the radiation machine moves to the first position, right above my chest.
All I hear is a humming type noise when it is on. I cannot see anything coming out of the machine. In the corner is a small red light that comes on and says, IN USE.
A tech comes back in to place something called Bolus (it is a flat piece of rubber-like material) on top of my chest. This increases the radiation dose to my skin and to the tissues right below it.
He tapes it to me. Then leaves again.
The machine rotates to the second position, just over my left side at an angle and turns on.
Finally the third position is far on my right side, it turns on again. Each time is only between 20-30 seconds.
I just lie there, in the dark and quiet with my eyes closed.
Not because I have to but because most of the time I can see my reflection in the glass of the machine.
I don't like that so much.
I know I am done when the lights turn back on and the tech comes back in the room.
It takes longer to get me set up than the actually radiation treatment.
They lower the table so I can get off.
They tell me I did a good job and say, "See ya tomorrow."
I go back to the changing room, get dressed and see myself out.
Once a week on Mondays I meet with my radiation oncology doctor. He checks my breathing and skin.
Today was my 24th treatment. I will have a total of 32.
The last five, my skin permitting, will be what the doctors call a boost. Instead of targeting my whole right side they give an extra high dose right to my scar incision line. Studies have shown if the cancer comes back, it tends to be in that area.
In the beginning my skin felt warm and tight but usually went away by early evening. Now it looks and feels like a sunburn. I am red all over, my skin is very tight and sensitive. I try to put on lotions and creams at least four times a day. It is painful to wear anything but a shirt but I am also to self-conscious not to wear something to support my "natural side" - as the docs call it. I am glad a friend warned me not to be surprised if my back turned red too. That is where the radiation beams come out. I also have a sore throat because it is close to the beams. The effects of radiation will continue a few weeks to a few months after I am done. My skin may be permanently discolored. So far I have been pretty lucky. The skin can blister and peel.
I will have some scarring in my lungs, but the doctor tells me I won't notice and it will not affect my breathing.
Then of course there is the tired side effect. That too lasts a few weeks after treatment is done.
I am almost finished. Another eight more treatments, or tanning sessions as Ryan calls them.
Then I wait.
Sunday, February 8, 2015
And Yet the Morning Comes
This lady has stage 4 breast cancer and it has spread. This is fear I always have in the back of my mind. For now we have caught it, but what if it comes back with a vengeance? I try not to worry or think about it. Live in the moment.
"Each day is different. Each moment, too.
It still seems surreal, this diagnosis of breast cancer.
It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, IV infusions, medication refills all start to fill my calendar.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
I try to be the one to do things with my children as much as I can. Even if there is family in the house. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.
I try to do the little things: helping with a school project and homework. I go to the grocery store and I work on the holiday card.
I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down.
And yet, the morning comes.
I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends. Each day is one more than I had the day before. But let’s be clear: there is no joy in this disease. My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long will that one last? My body holds the answers, but it’s not showing its hand yet.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
People in front of me in line at the gas station don’t know there’s chemo in my purse.
I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible. I’m still processing. Reeling. But while I’m doing that I’m living."
"Each day is different. Each moment, too.
It still seems surreal, this diagnosis of breast cancer.
It’s strange how quickly the horrific can become regular: the chemo, the side effects, the new routines.
Oncology appointments, IV infusions, medication refills all start to fill my calendar.
I start making lists of things I need to do. I prioritize them.
It’s not always about what’s actually the most important, it’s also about finding things that bring me small moments of joy.
The small moments are the ones that bring tears to my eyes.
I still lose my temper. I still yell sometimes. Often it’s misplaced anger, a manifestation of my frustration with my situation.
I haven’t suddenly turned into the world’s most patient person. Sometimes cancer makes me the most impatient one, in fact. I feel the clock is ticking. I don’t have time for nonsense. But that’s not a way to be. I will still try to be better.
I try to be the one to do things with my children as much as I can. Even if there is family in the house. I still save artwork and photographs and remind them to brush their teeth and clean their rooms.
I try to do the little things: helping with a school project and homework. I go to the grocery store and I work on the holiday card.
I don’t ever have a moment that I forget about my cancer. I think that’s the part about it being new. Even when I was diagnosed — even after I finished chemo and surgery and all of it– it still took at least a year for me to be able to push the daily fear down.
And yet, the morning comes.
I see the light of day and I get out of bed. I see the faces of my children. I kiss my husband goodbye when he leaves for work. Each day I have is a day that matters. Each day is one to make a memory with my family and friends. Each day is one more than I had the day before. But let’s be clear: there is no joy in this disease. My appreciation for my days should not be interpreted as supporting the nonsensical idea that “cancer is a gift.” There is nothing positive about this disease; I would give it back if I could. I did not need cancer to show me the value of things. I always knew these things were true. I never took them for granted. I knew what demons could be lurking.
I did all I could. It was not enough to keep it at bay. But maybe, just maybe, I can keep it at bay for a while.
I still haven’t fully come to terms with what this diagnosis means, but that’s because there’s no real way to know. We don’t know enough yet. It is the uncertainty that is the most difficult part for me. Will this chemo be the one that lasts for a while? Will it fail? When? What next? How long will that one last? My body holds the answers, but it’s not showing its hand yet.
I have to learn to ride this roller coaster. I’m just not there yet. And I don’t really know how long that is going to take.
I walk past people on the street and know they have no idea what is going on inside my body.
People in front of me in line at the gas station don’t know there’s chemo in my purse.
I look like everyone else. I have hair on my head. I ask the checkout person to pack the bags light because I can’t carry anything with my left arm now (the cancer has fractured two ribs on my left side).
Sometimes I want special treatment. I want a Get Out of Jail Free card. Most of the time, however, I want to stay home. Hide out. Be invisible. I’m still processing. Reeling. But while I’m doing that I’m living."
Subscribe to:
Posts (Atom)