8/12 update Another pea with cancer
Jun 30, 2022 23:32:50 GMT
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mimima, miominmio, and 23 more like this
Post by gsquaredmom on Jun 30, 2022 23:32:50 GMT
Update 8/12: I started radiation on 8/1 and had my tenth treatment today. I have 23 more treatments to go. A total of 33 Monday through Friday. They are giving a high dose at the tumor site and lower doses to the rest of my tongue and the entire neck. I have lymphedema therapy to help with swelling and speech therapy for keeping my swallowing and tongue muscles flexible and strong and for articulation and voice. Part of my face is paralyzed, the lower left corner of my mouth, and we are trying exercises to try to wake up at least some of the nerves.
I see the oncologist weekly and he is very optimistic. I also see a dietician who weighs me and tells me to eat more. It is very hard to think in terms of eating high-calorie foods, but it actually is challenging to keep my weight stable. My tongue is swollen and sore and a lot of foods, especially acidic ones, really bother my mouth. Ketchup, tomatoes, lemons, etc are all too harsh. It’s getting harder to eat solid foods, but I am doing so as long as possible to exercise my jaws and swallow muscles. Pretty soon I will be back to smoothies. Even brushing my teeth is hard. And I have no saliva, so I drink a lot of water and use biotene products. I am taking several weeks FMLA, as just getting to all the treatments would be so disruptive for students.
As I walked in for a radiation treatment last week, I reflected on how lucky I am to have good insurance and the funds to buy biotene, Vanicream, food I can eat, etc. The radiation room is so high-tech! The preparation and expertise involved in my treatments is incredible. Everyone should be able to access this care. There are people dying because they cannot. I am truly thankful for my opportunity to get the care I need.
And I think of all of you and those who are facing their own challenges. The pea pod continues to provide support as I go through this. I am hoping to be back at work Oct 3, but know it may be a little longer.
Thank you to all of you who continue to send positive thoughts and prayers. It makes a difference!
Update: first, thank you all for the support and suggestions. I saw the radiation oncologist this morning 7/1). This sounds very hopeful and do-able. I first need dental clearance, and he said since I see a dentist regularly, that should not be a problem. I asked specifically about degradation of my teeth and jaw and he said because I already have good dental care and am younger, he does not anticipate problems. So take care of your teeth!! And If I had needed extensive work or had infections, it could delay treatment.
He is ordering PT, OT and speech therapy to help me manage the changes in my tongue and mouth. We will likely start radiation in a couple weeks, as there is some prep involved. I will likely feel the most fatigued and drained just as school is starting. I may need to miss a couple weeks of school, but it’s really up to me and how I feel as we get closer.
All in all, I left feeling like I am in good hands.
Original post: When it rains it pours. I have joined the ranks of peas with cancer.
I saw a doctor in January for a weird spot on my tongue and had it biopsied. No cancer. No follow-up instructions nor explanation of what it was. It grew bigger and bothered me more. But it was not cancer.
School year ended, and I decided to see a different doc to try to resolve what it was. Still knew it was not cancer. She took one look and said she would be surprised if it was not. Biopsied. Squamous cell carcinoma. Lesson to share: the first doctor did not tell me about what I should look for—-ASK. I heard no cancer and even contacted her a couple weeks later to say it was not healing, and was told she did not know what it was, but it was not cancer. I should have contacted another doctor then.
Less than two weeks after seeing the second doc , I had the tumor, part of my tongue, and neck lymph nodes removed (last week, so still recovering). X-rays had shown it had not gone to my lungs. A liver ultrasound showed it had not gone there. The removed lymph nodes negative.
I am scared but hopeful. What would have been a simple, Stage 1 cancer turned into Stage 3 and I have a seven-inch scar on my neck. This happened so fast, I have not gotten to univ of Chicago or northwestern for a second opinion. As the swelling goes down, I can speak more.
My surgeon said it was good I came in, just in time. My surgeon has another patient who was told over and over by his dentist that his was just an infection. He lost more of his tongue and the cancer has spread. He is now disabled. I believe I am still a teacher.
I will see a radiation oncologist tomorrow, as they want to be sure the tongue bed and neck are clear. Radiation will further damage my tongue, damage my teeth and jaw bone, and turn my skin to leather. But, I am hoping to beat the 50 percent five year survival rate.
Wish me luck on this path that so many of us have walked.
I see the oncologist weekly and he is very optimistic. I also see a dietician who weighs me and tells me to eat more. It is very hard to think in terms of eating high-calorie foods, but it actually is challenging to keep my weight stable. My tongue is swollen and sore and a lot of foods, especially acidic ones, really bother my mouth. Ketchup, tomatoes, lemons, etc are all too harsh. It’s getting harder to eat solid foods, but I am doing so as long as possible to exercise my jaws and swallow muscles. Pretty soon I will be back to smoothies. Even brushing my teeth is hard. And I have no saliva, so I drink a lot of water and use biotene products. I am taking several weeks FMLA, as just getting to all the treatments would be so disruptive for students.
As I walked in for a radiation treatment last week, I reflected on how lucky I am to have good insurance and the funds to buy biotene, Vanicream, food I can eat, etc. The radiation room is so high-tech! The preparation and expertise involved in my treatments is incredible. Everyone should be able to access this care. There are people dying because they cannot. I am truly thankful for my opportunity to get the care I need.
And I think of all of you and those who are facing their own challenges. The pea pod continues to provide support as I go through this. I am hoping to be back at work Oct 3, but know it may be a little longer.
Thank you to all of you who continue to send positive thoughts and prayers. It makes a difference!
Update: first, thank you all for the support and suggestions. I saw the radiation oncologist this morning 7/1). This sounds very hopeful and do-able. I first need dental clearance, and he said since I see a dentist regularly, that should not be a problem. I asked specifically about degradation of my teeth and jaw and he said because I already have good dental care and am younger, he does not anticipate problems. So take care of your teeth!! And If I had needed extensive work or had infections, it could delay treatment.
He is ordering PT, OT and speech therapy to help me manage the changes in my tongue and mouth. We will likely start radiation in a couple weeks, as there is some prep involved. I will likely feel the most fatigued and drained just as school is starting. I may need to miss a couple weeks of school, but it’s really up to me and how I feel as we get closer.
All in all, I left feeling like I am in good hands.
Original post: When it rains it pours. I have joined the ranks of peas with cancer.
I saw a doctor in January for a weird spot on my tongue and had it biopsied. No cancer. No follow-up instructions nor explanation of what it was. It grew bigger and bothered me more. But it was not cancer.
School year ended, and I decided to see a different doc to try to resolve what it was. Still knew it was not cancer. She took one look and said she would be surprised if it was not. Biopsied. Squamous cell carcinoma. Lesson to share: the first doctor did not tell me about what I should look for—-ASK. I heard no cancer and even contacted her a couple weeks later to say it was not healing, and was told she did not know what it was, but it was not cancer. I should have contacted another doctor then.
Less than two weeks after seeing the second doc , I had the tumor, part of my tongue, and neck lymph nodes removed (last week, so still recovering). X-rays had shown it had not gone to my lungs. A liver ultrasound showed it had not gone there. The removed lymph nodes negative.
I am scared but hopeful. What would have been a simple, Stage 1 cancer turned into Stage 3 and I have a seven-inch scar on my neck. This happened so fast, I have not gotten to univ of Chicago or northwestern for a second opinion. As the swelling goes down, I can speak more.
My surgeon said it was good I came in, just in time. My surgeon has another patient who was told over and over by his dentist that his was just an infection. He lost more of his tongue and the cancer has spread. He is now disabled. I believe I am still a teacher.
I will see a radiation oncologist tomorrow, as they want to be sure the tongue bed and neck are clear. Radiation will further damage my tongue, damage my teeth and jaw bone, and turn my skin to leather. But, I am hoping to beat the 50 percent five year survival rate.
Wish me luck on this path that so many of us have walked.