So, it has been months since I blogged. In that time I've experienced the highs and very down lows of recovering from the radical hysterectomy, radiation treatment, diagnosis of breast cancer, lumpectomy, lymph node op, radiation treatment, and then a PET scan many months later.
I was feeling pretty good about life for the past months. I've adjusted my diet, lost weight unintentionally, had some fun travels, visited family and friends over the summer, and was hoping for a clean bill of health.
Again I got the yes, but.
Yes, you're clear of cervical cancer and breast cancer but now we see some growths in your lungs and lymph nodes near your heart.
What the heck?
Have I flipped a switch that said to cancer, "Here I am, have at me!"
What have I done wrong?
I had a clean CT scan of my lungs in November, now, not at all.
Have to have a lung biopsy in the am.
Can't find anything funny about a third possible cancer.
Just disgusted with the situation, grateful to the doctors, grateful to the medical professionals, lab technicians, etc.
So frustrating.
Biopsy on wedding anniversary no less, happy anniversary honey! I thought I'd go all out and really make you appreciate life... not so much so...
Been thinking about books to bring. Not like it is a campout or anything but I must preplan... Will not bring laptop this time but bring iPad, Kindle, and other things...
Quite a let down to have clear scans until...
Lung cancer is quite a bit more scary than breast or cervical cancer in my opinion. I have a feeling if the diagnosis comes thru, I'll have to deal with chemotherapy this time... and possibly radiation again... not looking forward to going back for radiation, hated it the last two times... burns on my skin, internal ache, side effects are there...
Nope, not positive but already ready for a fight... love life...
Showing posts with label radical hysterectomy. Show all posts
Showing posts with label radical hysterectomy. Show all posts
Friday, August 15, 2014
Survivor Book Inspiration
My Life.... what do I celebrate with?
reading books...
Diagnosis? 2 cancers within 7 months? = wake up call.
What did I do next? (after family, friends, and medical plans?)
Read. (I was on bedrest for four weeks, didn't want to just watch the screen.)
Radical Remission: Surviving Cancer Against All Odds - Kelly A. Turner, Ph. D. - inspiring, packed with fascinating research.
You Need Humour with a Tumour - Reflections on a journey with cancer - Annmarie James Thomas, Flye/Jeremy. - this book broke my heart.
Kicking Cancer in the Kitchen: The Girlfriends Cookbook and Guide to using Real Food to Fight Cancer by Annette Ramke and Kendall Scott - some delicious recipes, inspired stories as well.
The After Cancer Diet - How to life healthier than ever before by Suzanne Boothby - opened my eyes... activated my food/life changes...
Cancer Vixen: A True Story by Marisa Acocella Marchetto - absolutely loved this graphic novel about dealing with breast cancer/treatment.
Crazy Sexy Cancer Tips by Kris Carr - working my way through this book now. Love the clips I've watched from The Oprah Show from Kris Carr, quite the inspiring survivor.
The Silver Lining: A Supportive and Insightful Guide to Breast Cancer by Hollye Jacobs RN MS MSW, Elizabeth Messina - Inspiring blog, such a positive person...
Reading soothes my soul.
I've quietly read these books when I'm a very public reader. Some weeks of the past year were very low on books read in my kidlit world because I was more focused on cancer recovery books...
I've changed my diet, lost a ridiculous amount of weight which worried me, and tried to deal with all the complications of operations and radiation by reading how others dealt... reassuring to not feel alone. Inspired other times by survival stories...
reading books...
Diagnosis? 2 cancers within 7 months? = wake up call.
What did I do next? (after family, friends, and medical plans?)
Read. (I was on bedrest for four weeks, didn't want to just watch the screen.)
Radical Remission: Surviving Cancer Against All Odds - Kelly A. Turner, Ph. D. - inspiring, packed with fascinating research.
You Need Humour with a Tumour - Reflections on a journey with cancer - Annmarie James Thomas, Flye/Jeremy. - this book broke my heart.
Kicking Cancer in the Kitchen: The Girlfriends Cookbook and Guide to using Real Food to Fight Cancer by Annette Ramke and Kendall Scott - some delicious recipes, inspired stories as well.
The After Cancer Diet - How to life healthier than ever before by Suzanne Boothby - opened my eyes... activated my food/life changes...
Cancer Vixen: A True Story by Marisa Acocella Marchetto - absolutely loved this graphic novel about dealing with breast cancer/treatment.
Crazy Sexy Cancer Tips by Kris Carr - working my way through this book now. Love the clips I've watched from The Oprah Show from Kris Carr, quite the inspiring survivor.
The Silver Lining: A Supportive and Insightful Guide to Breast Cancer by Hollye Jacobs RN MS MSW, Elizabeth Messina - Inspiring blog, such a positive person...
Reading soothes my soul.
I've quietly read these books when I'm a very public reader. Some weeks of the past year were very low on books read in my kidlit world because I was more focused on cancer recovery books...
I've changed my diet, lost a ridiculous amount of weight which worried me, and tried to deal with all the complications of operations and radiation by reading how others dealt... reassuring to not feel alone. Inspired other times by survival stories...
Bravery versus survival with grit
So, say at 40 your body goes to hell, I say, to hell in a handbasket.
Here's my journey from being a sickly one to struggling to rise above.
Often I've heard, "you're so brave..." my response is a respectful smile or thank you or combo of the two. But honestly, I don't think I'm all that. I just deal, try to stay positive, and hope to have a little fun along the way.
Having a doctor say "uh oh" isn't what you want to hear five months after a radical hysterectomy and more and a round of radiation treatment for cervical cancer, but my response of laughing saying "No, you can't find a lump and then choking up with a 'that's not funny' didn't calm me down or stop my doctor from finding a lump, very small mind you, but still cancerous in my right breast.
I'd say I'm ridiculously lucky.
I have a sweet healthy boy, a fantastic, patient husband, a wonderful supportive family, a job I'm passionate about.... loads that helps me pop up in the morning ready for another day.
Cancer? Pray for only radiation. Pray for it to be small. Please no lymph nodes. No chemo? I know I'm incredibly lucky.
What started this?
Good question.
Stress? Perhaps.
Poor diet or food that isn't healthy? Maybe.
Lack of sleep? Highly possible...
Luck? Not sure...
But I'm surviving with grit.
Here's my journey from being a sickly one to struggling to rise above.
Often I've heard, "you're so brave..." my response is a respectful smile or thank you or combo of the two. But honestly, I don't think I'm all that. I just deal, try to stay positive, and hope to have a little fun along the way.
Having a doctor say "uh oh" isn't what you want to hear five months after a radical hysterectomy and more and a round of radiation treatment for cervical cancer, but my response of laughing saying "No, you can't find a lump and then choking up with a 'that's not funny' didn't calm me down or stop my doctor from finding a lump, very small mind you, but still cancerous in my right breast.
I'd say I'm ridiculously lucky.
I have a sweet healthy boy, a fantastic, patient husband, a wonderful supportive family, a job I'm passionate about.... loads that helps me pop up in the morning ready for another day.
Cancer? Pray for only radiation. Pray for it to be small. Please no lymph nodes. No chemo? I know I'm incredibly lucky.
What started this?
Good question.
Stress? Perhaps.
Poor diet or food that isn't healthy? Maybe.
Lack of sleep? Highly possible...
Luck? Not sure...
But I'm surviving with grit.
Positives about Radiation List
My Positives about Radiation list- round 2 of radiation, breast cancer treatment this round.
(Ok, they aren't all positive...)
I posted about how I had to have radiation after fighting cervical cancer, 8 months later, I was back in for radiation treatment again/Tomotherapy after having a breast cancer diagnosis, lumpectomy, and lymph node surgery...
Here's what I listed for this round of radiation treatment:
1. I now have 3 tattoos, quite tiny (as a pinhead) but they're tattoos.
2. It isn't chemo.
3. If you want 1:1 attention, fabulous, you sometimes receive 4:1 attention.
4. It isn't chemo.
5. You see a doctor weekly, well, that isn't fun.
6. You're provided with meditation time.
7. You receive special messages about staying still.
8. You're exposed to new clothes when the doctor says "no bra, built in support shirts"
9. You get to see what people do when radiation is on- run quick.
10. You can feel like the bionic woman.
11. You wear a lovely uniform each day.
12. It is short.
13. 16 days can feel like 4 months.
14. You are very aware of your skin.
15. You have a daily appointment each day that has a good strong excuse for leaving work.
16. It isn't chemo.
17. You can focus on keeping positive.
18. You can make new jokes and have a medical audience (in my case Chinese though...)
19. You know there is an end in sight.
20. It is only one way to help yourself.
21. Since v-necks suck with burns, you experience a change in wardrobe, again.
22. Many people pay attention to you, are concerned.
23. Excuse to buy new shirts.
24. Twinges make me more aware of my body as the radiation treatments progress...
25. Food changes = certainly in the right mind set.
26. Discover new restaurants.
27. Discover new grocery stores.
28. Watching healing process- nerves working better, skin not freaking out as much.
(Ok, they aren't all positive...)
I posted about how I had to have radiation after fighting cervical cancer, 8 months later, I was back in for radiation treatment again/Tomotherapy after having a breast cancer diagnosis, lumpectomy, and lymph node surgery...
Here's what I listed for this round of radiation treatment:
1. I now have 3 tattoos, quite tiny (as a pinhead) but they're tattoos.
2. It isn't chemo.
3. If you want 1:1 attention, fabulous, you sometimes receive 4:1 attention.
4. It isn't chemo.
5. You see a doctor weekly, well, that isn't fun.
6. You're provided with meditation time.
7. You receive special messages about staying still.
8. You're exposed to new clothes when the doctor says "no bra, built in support shirts"
9. You get to see what people do when radiation is on- run quick.
10. You can feel like the bionic woman.
11. You wear a lovely uniform each day.
12. It is short.
13. 16 days can feel like 4 months.
14. You are very aware of your skin.
15. You have a daily appointment each day that has a good strong excuse for leaving work.
16. It isn't chemo.
17. You can focus on keeping positive.
18. You can make new jokes and have a medical audience (in my case Chinese though...)
19. You know there is an end in sight.
20. It is only one way to help yourself.
21. Since v-necks suck with burns, you experience a change in wardrobe, again.
22. Many people pay attention to you, are concerned.
23. Excuse to buy new shirts.
24. Twinges make me more aware of my body as the radiation treatments progress...
25. Food changes = certainly in the right mind set.
26. Discover new restaurants.
27. Discover new grocery stores.
28. Watching healing process- nerves working better, skin not freaking out as much.
Tunnel Time: Tomotherapy
Tunnel Vision:
So, after recovering for almost four weeks from the radical hysterectomy, the doctors referred me to a specialist who said I need to have six weeks of Tomotherapy (radiology).
I'm around 9 days into Tomotherapy now and can't stand the experience but appreciate that I'm fighting off any other evil cancer cells that might be hiding out...
One of the nurses said to me "looks like you're used to the routine now" and I quickly said to her "it will be a habit I'll be happy to quickly break when the time comes.
They actually chuckled. It is a relief when people "get" my humor. I had a conversation recently with my mom about this. She is dealing with a medical professional who is someone who never gets her jokes... somewhat makes her uncomfortable.
So. In the tunnel. What is Tomotherapy and what happens to me while I'm in treatment?
I have to have Tomotherapy for 30 days. *Before I started treatment I had to have a CT scan, make a "cast" of my body so that I lay down precisely the same way for every treatment, and an MRI. I HATED the MRI, such loud noises, my ears were ringing afterwards!
I have to go all weekdays, mostly at the same time every day.
The time it takes to have a tomotherapy session is right around 20 minutes once I'm in the tube.
First I wait.
Then I change into a beautiful *not* set of pajamas and flip flops.
Then three to four people lead me into a room, get me to hop up onto the platform that holds my cast, and then begin by scooting out of the room.
They get the CT scan for around five minutes.
Then the bed/platform pulls slightly out when the computer calibrates.
I hear a click clack buzz from the top of the machine and then it clicks as the platform pulls back in.
I hear clicking and buzzing and know that the machine is in action for the next fifteen minutes.
After the treatment completes, then many people, once even eight people, come into the room and quickly scoot me off so that they can get ready for the next patient.
I change and try to catch a little green bus back to my area, catch the MTR and get home just in time for dinner...
What scared me? The side effects. I'm only at the beginning stages. Unknowns are no fun. Shall see.
Video examples of Tomotherapy:
So, after recovering for almost four weeks from the radical hysterectomy, the doctors referred me to a specialist who said I need to have six weeks of Tomotherapy (radiology).
I'm around 9 days into Tomotherapy now and can't stand the experience but appreciate that I'm fighting off any other evil cancer cells that might be hiding out...
One of the nurses said to me "looks like you're used to the routine now" and I quickly said to her "it will be a habit I'll be happy to quickly break when the time comes.
They actually chuckled. It is a relief when people "get" my humor. I had a conversation recently with my mom about this. She is dealing with a medical professional who is someone who never gets her jokes... somewhat makes her uncomfortable.
So. In the tunnel. What is Tomotherapy and what happens to me while I'm in treatment?
I have to have Tomotherapy for 30 days. *Before I started treatment I had to have a CT scan, make a "cast" of my body so that I lay down precisely the same way for every treatment, and an MRI. I HATED the MRI, such loud noises, my ears were ringing afterwards!
I have to go all weekdays, mostly at the same time every day.
The time it takes to have a tomotherapy session is right around 20 minutes once I'm in the tube.
First I wait.
Then I change into a beautiful *not* set of pajamas and flip flops.
Then three to four people lead me into a room, get me to hop up onto the platform that holds my cast, and then begin by scooting out of the room.
They get the CT scan for around five minutes.
Then the bed/platform pulls slightly out when the computer calibrates.
I hear a click clack buzz from the top of the machine and then it clicks as the platform pulls back in.
I hear clicking and buzzing and know that the machine is in action for the next fifteen minutes.
After the treatment completes, then many people, once even eight people, come into the room and quickly scoot me off so that they can get ready for the next patient.
I change and try to catch a little green bus back to my area, catch the MTR and get home just in time for dinner...
What scared me? The side effects. I'm only at the beginning stages. Unknowns are no fun. Shall see.
Video examples of Tomotherapy:
The first video I watched about Tomotherapy:
Then I watched this live video:
Talk show introduction: with a decent explanation:
Listen, seriously, listen to what your body is telling you
I'm grateful that I've had arthritis, juvenile rheumatoid arthritis, since I was thirteen. It has made me quite a neurotic person, tuned in to my body. I've been off medication for the arthritis since I was 18. That's when I almost had an ulcer from the NSAIDS that the dr. prescribed. I had orthoscopic knee surgery at 15 and found the recovery process quite frustrating and limiting.
So, neurotic. Yes.
This isn't a pretty sight following for gentlemen to read, sorry. Close and move on to a different blog.
Thanks. Now on to listening to your body.
I've been taking chances, risks and going on adventures for the past year and a half since my family decided we'd be risk takers and move to another country. This was due to a job opportunity that I had and a huge leap of faith that our family had moving overseas.
I've worked hard to enjoy and adapt to a new country and had a steep learning curve adapting to a new culture.
So. Listening to the body.
Here were my body's stages of saying, something is really wrong:
1. I was really fatigued, a lot in June. Couldn't figure out why.
2. I started spotting a little bit in June and worried.
3. I had an extra period at the end of June and was frustrated.
4. Went to the dr. after that and she said it might be fibroids. She did a pap smear- it was clear.
5. I went on a family week long adventure that included fun hiking, scootering and more... and continued spotting.
6. Quickly we turned around and went on another family adventure to learn kung fu. Part way through the week I started my period 2 weeks early.
7. I went back to my doctor and she sent me to get a transvaginal ultrasound that revealed that I did have fibroids. Discussed with doctor about options, she suggested an IUD which I considered.
8. I went back to work. Within a week, I started having the heaviest, scariest period I ever experienced. My body was screaming that something was wrong.
9. I went back to the doctor who put me on hormones to try to stop the bleeding..
10. The bleeding lessened quickly. Two days after taking the medicine a finger on my right hand started hurting terribly. The next day, the other hand had a finger that hurt. Then my wrists and shoulders started hurting. I decided it was the medicine. I went back to the doctor and scheduled the procedure to get the IUD put in. I also got permission to quit taking the main hormone medicine but continue the other so that the bleeding didn't pick back up. I was listening to my body, it was still trying to tell me something was terribly wrong. I went to three sessions of Chinese Traditional medicine treatment including acupuncture and mustard seed packs on my wrists and shoulders, no alleviation of pain until I got off the medicine.
11. I went to a specialist who quickly scheduled the IUD procedure for that Saturday. I went to the procedure a little nervous but hopeful that this would address the problem.
12. The procedure went fine until the doctor who was using a video scope noticed a large growth on my cervix. He took a biopsy and told me immediately following the procedure that he didn't put in the IUD because he needed to find out more about the growth.
13. I waited over a week to get results, that was terrible. I called, the doctor was out and then wanted to schedule an appointment to talk in person, emphasized that it wasn't a worry. We went to a family weekend fun trip which I'm still grateful we did... last time I had energy for excitement.
14. My doctor met with my husband and I to explain that I had cervical cancer, in what he suspected was early stage 1. He was concerned with how large the growth was and suggested I see a specialist. He explained that pap smears and a transvaginal ultrasound wouldn't reveal anything about cervical cancer and shared that this was a really lucky find.
15. After juggling doctors to sort out what would be covered by insurance, I went to a specialist... who sent me to another specialist within a days time. That specialist scheduled a radical hysterectomy with some lymph node removal as well.
16. The specialist warned me that I might need to get radiotherapy after the surgery since I had such a large growth.
17. The surgery went well. My employers were generous, kind, and supportive and I was approved for paid emergency leave.
18. I've been off work for four weeks, recovering from the surgery. Quickly after the procedure, my doctor came and confirmed that he wanted me to see a specialist and have radiotherapy...
19. I went to a cancer radiologist who decided to treat me with six weeks of Tomotherapy sending radiation to my entire pelvic region.
20. This radiologist gave my husband and I heart attacks when he pointed out that I have a rare form of cervical cancer with no known confirmed treatment but with a 40-50% survival rate without having radiotherapy. No choice in our opinion, getting radiation treatment. There was slight discussion of getting chemotherapy as well but my other doctor said "no" quickly since I had a biopsy of all my lymph nodes and had no signs of migration of cancer cells.
So now... still listening carefully to my body and dealing with Tomotherapy. (Radiation treatment, 30 days, Monday-Friday for 6 weeks.) Not fun but important.
So, neurotic. Yes.
This isn't a pretty sight following for gentlemen to read, sorry. Close and move on to a different blog.
Thanks. Now on to listening to your body.
I've been taking chances, risks and going on adventures for the past year and a half since my family decided we'd be risk takers and move to another country. This was due to a job opportunity that I had and a huge leap of faith that our family had moving overseas.
I've worked hard to enjoy and adapt to a new country and had a steep learning curve adapting to a new culture.
So. Listening to the body.
Here were my body's stages of saying, something is really wrong:
1. I was really fatigued, a lot in June. Couldn't figure out why.
2. I started spotting a little bit in June and worried.
3. I had an extra period at the end of June and was frustrated.
4. Went to the dr. after that and she said it might be fibroids. She did a pap smear- it was clear.
5. I went on a family week long adventure that included fun hiking, scootering and more... and continued spotting.
6. Quickly we turned around and went on another family adventure to learn kung fu. Part way through the week I started my period 2 weeks early.
7. I went back to my doctor and she sent me to get a transvaginal ultrasound that revealed that I did have fibroids. Discussed with doctor about options, she suggested an IUD which I considered.
8. I went back to work. Within a week, I started having the heaviest, scariest period I ever experienced. My body was screaming that something was wrong.
9. I went back to the doctor who put me on hormones to try to stop the bleeding..
10. The bleeding lessened quickly. Two days after taking the medicine a finger on my right hand started hurting terribly. The next day, the other hand had a finger that hurt. Then my wrists and shoulders started hurting. I decided it was the medicine. I went back to the doctor and scheduled the procedure to get the IUD put in. I also got permission to quit taking the main hormone medicine but continue the other so that the bleeding didn't pick back up. I was listening to my body, it was still trying to tell me something was terribly wrong. I went to three sessions of Chinese Traditional medicine treatment including acupuncture and mustard seed packs on my wrists and shoulders, no alleviation of pain until I got off the medicine.
11. I went to a specialist who quickly scheduled the IUD procedure for that Saturday. I went to the procedure a little nervous but hopeful that this would address the problem.
12. The procedure went fine until the doctor who was using a video scope noticed a large growth on my cervix. He took a biopsy and told me immediately following the procedure that he didn't put in the IUD because he needed to find out more about the growth.
13. I waited over a week to get results, that was terrible. I called, the doctor was out and then wanted to schedule an appointment to talk in person, emphasized that it wasn't a worry. We went to a family weekend fun trip which I'm still grateful we did... last time I had energy for excitement.
14. My doctor met with my husband and I to explain that I had cervical cancer, in what he suspected was early stage 1. He was concerned with how large the growth was and suggested I see a specialist. He explained that pap smears and a transvaginal ultrasound wouldn't reveal anything about cervical cancer and shared that this was a really lucky find.
15. After juggling doctors to sort out what would be covered by insurance, I went to a specialist... who sent me to another specialist within a days time. That specialist scheduled a radical hysterectomy with some lymph node removal as well.
16. The specialist warned me that I might need to get radiotherapy after the surgery since I had such a large growth.
17. The surgery went well. My employers were generous, kind, and supportive and I was approved for paid emergency leave.
18. I've been off work for four weeks, recovering from the surgery. Quickly after the procedure, my doctor came and confirmed that he wanted me to see a specialist and have radiotherapy...
19. I went to a cancer radiologist who decided to treat me with six weeks of Tomotherapy sending radiation to my entire pelvic region.
20. This radiologist gave my husband and I heart attacks when he pointed out that I have a rare form of cervical cancer with no known confirmed treatment but with a 40-50% survival rate without having radiotherapy. No choice in our opinion, getting radiation treatment. There was slight discussion of getting chemotherapy as well but my other doctor said "no" quickly since I had a biopsy of all my lymph nodes and had no signs of migration of cancer cells.
So now... still listening carefully to my body and dealing with Tomotherapy. (Radiation treatment, 30 days, Monday-Friday for 6 weeks.) Not fun but important.
Humor: the best things about getting a radical hysterectomy are...
So, I usually try to address stressful situations with a little humor. For example, I almost started crying when I was going into surgery. Everyone was so serious. Too many people were telling me to relax. It was upsetting. So when I was wheeled into the surgery area, I noticed the lighting looked like a dance hall. I told my surgeon, so I'm at a disco! He smiled and patted me on the shoulder. My anesthesiologist gave me the oddest look.
A day after surgery, a pastor came to check on me. She was quite concerned about how I was feeling. She was thrown when I explained how relieved and grateful I was. She didn't understand why I was happy. I explained about how my cancer was caught at an early stage, how I had a healthy child, how I had a healthy happy marriage and a good work environment to look forward to returning to... and she said to me "I could learn about happiness from you." I didn't see her again.
I've been trying to create lists in my head as I go through Tomotherapy, radiation, every day. As I mentioned, I try to distract myself a little in stressful situations. Tomotherapy is stressful to me. Go into a tube and get scanned and then have a bunch of rays shooting into me probably giving me many side effects and without knowledge of the success of the procedure, it is stressful. So, the other day, I started making lists for myself.
Here's one:
The best things about getting a radical hysterectomy are:
1. You appreciate the ability to pee. Brings you back to basics.
2. You're bedridden for weeks, reading is a beautiful distraction, so are tv shows!
3. No worries about getting pregnant.
4. No more pads to purchase.
5. No more birth control pills, saves money all the way around.
6. You get to meet new people and talk about your bowel movements and have your weight and blood pressure taken up to 5 times in a day.
7. You have a lovely bikini line scar.
8. You can be alone during recovery for long periods of time. How often are you alone with your thoughts?
9. You can let go a little and have experts tell you to eat well and check on you...
10. No exercise for quite a while. (Ok, this sucks, I miss yoga and Zumba and swing dancing and was really hoping to return to it this fall since my hip was feeling better...)
So... there's one way I deal with negative, turn to positive...
So... there's one way I deal with negative, turn to positive...
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