We made another trip to Houston on Monday and I saw my Head and Neck surgeon. Dr. G. took a look at the incision on my neck and told me it looked like I was healing well. I still have swelling in my neck and under my chin.
I've been sleeping in an elevated position since the surgery. It makes for a very poor night's sleep. Chris asked Dr. G. if I could sleep without the extra pillows and she agreed. I tried it last night and woke up with extra swelling under my chin. Since the lymph nodes have been removed from the right side of my neck, there's no drainage, hence the swelling. I'll be seeing a specialist in the lymphedema clinic in the next few weeks. The swelling will be a life-long condition, so I need to know how to deal with it so that it doesn't get worse.
Once I've had more time to heal, I'll get scheduled for a radiation simulation. I expect it will take place in 2 weeks or so. As I learn more, I'll post.
Tuesday, June 10, 2014
Friday, June 6, 2014
Another specialist to round out my set
Yesterday, I added another specialist to my alphabet of doctors. Dr. M. will be overseeing chemotherapy for me. After reviewing my medical history, she's determined that I'm an unique case. I should probably have a shirt made stating the obvious.
At this point, the plan is for me to get a round of chemotherapy for each week of radiation. It seems that I will be having 6 weeks of radiation, so 6 rounds of chemotherapy will compliment that. I'll be allowed to come home on the weekends initially. The doctor guessed maybe the first 3 weeks. After this point, the cumulative effects of chemo and radiation will have caught up to me. I'll probably feel too unwell to travel and in case of emergency, they want me nearby.
I'll see my surgeon on Monday, and hopefully there will be pathology results to share.
At this point, the plan is for me to get a round of chemotherapy for each week of radiation. It seems that I will be having 6 weeks of radiation, so 6 rounds of chemotherapy will compliment that. I'll be allowed to come home on the weekends initially. The doctor guessed maybe the first 3 weeks. After this point, the cumulative effects of chemo and radiation will have caught up to me. I'll probably feel too unwell to travel and in case of emergency, they want me nearby.
I'll see my surgeon on Monday, and hopefully there will be pathology results to share.
Tuesday, June 3, 2014
Where do we go now?
It's been almost a week since the surgery to remove a few lymph nodes on one side of my neck. You all know that turned into something wholly unexpected for the surgeon and us. Dr. G. and her team removed my tonsils and found a large, flat tumor encompassing the nodes on the right side of my neck. A routine 2.5 hour surgery stretched beyond 5 hours as Dr. G. attempted to remove as much of the tumor as she could.
There is muscle infiltration, so she could only remove so much. My neck is asymmetrical. Muscle and lymph nodes as well as a tumor were removed from the right side. She had to take part of my jugular vein. In her words, it's because the tumor was slap up against it. Nerves were severed. The right side of my face droops. I have to practice smiling and pursing my lips because one side drags down. Unless I'm looking in a mirror, I can't see that only half of my face is complying.
There are stitches stretching from slightly past the left middle part of my chin to just behind my right ear. It's a very strange sight that greets me each time I look in the mirror.
I'm tired and my throat hurts. The pain pills help keep the pain in check so that I can eat. They also put me to sleep which helps with my healing. I have to sleep sitting up, which means I get very little consistent rest. Each time I drift off, my head nods forward and I startle awake afraid of pulling stitches. The cats take turns using me as their personal breathing armchair.
Chris has been amazing throughout all of this. My friends have been an enormous wealth of love and support. Social media keeps me connected. I'm not always up to replying to emails and texts in a very timely fashion. I tend to fall asleep in the middle of reading them. I know it will get better and that my body needs to rest in order to heal. I'll try to keep everyone updated as I learn more about treatment. I'll meet with the oncologist in charge of chemotherapy on Thursday. All treatment and testing will occur in Houston.
I'll wrap this up by saying thank you. Thank you to all of my friends and family and all of the kind strangers who read this blog for reaching out to us and letting us know we're loved. We draw strength from each of you and want you to know how very much your words mean to us.
There is muscle infiltration, so she could only remove so much. My neck is asymmetrical. Muscle and lymph nodes as well as a tumor were removed from the right side. She had to take part of my jugular vein. In her words, it's because the tumor was slap up against it. Nerves were severed. The right side of my face droops. I have to practice smiling and pursing my lips because one side drags down. Unless I'm looking in a mirror, I can't see that only half of my face is complying.
There are stitches stretching from slightly past the left middle part of my chin to just behind my right ear. It's a very strange sight that greets me each time I look in the mirror.
I'm tired and my throat hurts. The pain pills help keep the pain in check so that I can eat. They also put me to sleep which helps with my healing. I have to sleep sitting up, which means I get very little consistent rest. Each time I drift off, my head nods forward and I startle awake afraid of pulling stitches. The cats take turns using me as their personal breathing armchair.
Chris has been amazing throughout all of this. My friends have been an enormous wealth of love and support. Social media keeps me connected. I'm not always up to replying to emails and texts in a very timely fashion. I tend to fall asleep in the middle of reading them. I know it will get better and that my body needs to rest in order to heal. I'll try to keep everyone updated as I learn more about treatment. I'll meet with the oncologist in charge of chemotherapy on Thursday. All treatment and testing will occur in Houston.
I'll wrap this up by saying thank you. Thank you to all of my friends and family and all of the kind strangers who read this blog for reaching out to us and letting us know we're loved. We draw strength from each of you and want you to know how very much your words mean to us.
Friday, May 30, 2014
Day 3
Chris here - I need to apologize to everyone.
My head has not been in a good space and I'm sorry. I will try to be better.
We are getting ready to go to clinic and get Ann's drain removed. From there, absent complications we are headed back to home and cats.
- Posted using BlogPress from my iPhone
My head has not been in a good space and I'm sorry. I will try to be better.
We are getting ready to go to clinic and get Ann's drain removed. From there, absent complications we are headed back to home and cats.
- Posted using BlogPress from my iPhone
Location:MD Anderson Cancer Center
Wednesday, May 28, 2014
Day 1
I am resetting the clock back from what ever it was post the last BMT, back to zero.
Here is what I know:
1) The cancer in Ann's neck did not come from her tonsil.
2) The cancer in Ann's neck blew holes in several of her lymph nodes.
3) The cancer in Ann's neck had grown to a large matted clump that encased several of her nodes on the right side of her neck.
4) The cancer in Ann's neck covered and area from the midline of her chin to behind her right ear.
5) The surgery team nearly aborted the procedure when they were confronted with this.
6) The cancer in Ann's neck did not show up on her PET scan.
7) The cancer in Ann's neck is the same group of tumor cells that was cut off of her tongue over a year ago.
8) The procedure was supposed to be 2.5 hours long, but the surgical team needed twice that long to debride the tumor.
9) Ann lost some muscle in her neck and part of her jugular vein.
10) ...
11) This situation is a whole lot more serious and we ever imagined.
Prognosis is about 20% or less. Treatment plan is radiation and chemo with scans very 2 months.
I promised I would never leave her and I won't. Not ever. But I don't know what to do.
Here is what I know:
1) The cancer in Ann's neck did not come from her tonsil.
2) The cancer in Ann's neck blew holes in several of her lymph nodes.
3) The cancer in Ann's neck had grown to a large matted clump that encased several of her nodes on the right side of her neck.
4) The cancer in Ann's neck covered and area from the midline of her chin to behind her right ear.
5) The surgery team nearly aborted the procedure when they were confronted with this.
6) The cancer in Ann's neck did not show up on her PET scan.
7) The cancer in Ann's neck is the same group of tumor cells that was cut off of her tongue over a year ago.
8) The procedure was supposed to be 2.5 hours long, but the surgical team needed twice that long to debride the tumor.
9) Ann lost some muscle in her neck and part of her jugular vein.
10) ...
11) This situation is a whole lot more serious and we ever imagined.
Prognosis is about 20% or less. Treatment plan is radiation and chemo with scans very 2 months.
I promised I would never leave her and I won't. Not ever. But I don't know what to do.
Sunday, May 25, 2014
Hot Tonsil
Chris here -
I haven't blogged in a long time - and frankly I've enjoyed it. The activity on this blog is in direct inverse proportion to Ann's health. So less blogging means no cancer. Well until last week that is.
Dr. G, Ann's Otolaryngologist at MDA (who also performed the surgery on her tongue) called her the other day and gave her the run down on the PET scan results. Basically there are 3 hot spot nodes that look enlarged (1.2cm, 1.5cm and 1.1cm) in the right side of her throat. They all vary between levels 2 to 5, but I will spare you the amateur anatomy lesson on the exact placement of the nodes, just that they are all near the jaw line or jugular.
The surprise came when she noted that Ann's right tonsil is also "hot" on the PET scan. So it looks like we may (may) not be dealing with a recurrence of the tongue lesion from more than a year and a half ago. This could be something "new" that originated in the tonsil.
Considering the timeline of this thing is about 6 weeks and it's exploded into the lymphatic system this makes sense. 6 weeks ago Ann was at MDA and believe me when Dr. K does an exam she palpates Ann's nodes throughly, not forgetting that Ann's original leukemia presented as a reactive node. During that visit there were no enlarged nodes, jump forward a few weeks and Ann notices one at breakfast and calls Dr. B at Mary Bird Perkins. And then last week we have a reading of squamous cells detected in the needle biopsy done two weeks ago.
My working theory is that this is a realtively young disease that originated in her right tonsil. The tonsil is the gateway to the lymphatic system so it has been able to roam freely from the origin source to several of the nodes.
What we don't know at this point is if the cancer is HPV positive. Since Ann is immune suppressed I would guess that there is a decent chance that it is. What little information I have been able to absorb from journals is that HPV positive tumors of this type tend to be smaller tumors with more lymphatic activity. Which sounds bad, but actually has a more favorable outcome attached to it.
Tuesday we are in appointments with Dr. G and the rest of the MDA team and I expect we will know more.
In the meantime the Light of my Life is doing her best to age me prematurely by another 20 years. This morning started with phlegm in her throat which brought on vomiting. Later in the day we stopped by a friend's birthday party for her kids and dropped off presents. After about 40 minutes there in baking conditions (very hot today) Ann fainted and just about split her skull on a door frame. Friends jumped in and made sure Ann was taken care of. We're very fortunate to have such amazing people in our lives.
If you have read our blog for the last couple of years I want to say first " thank you". We have drawn immeasurable support from the comments and contacts we have made through our efforts. Second, I feel I owe everyone an apology that we have to ask you to go through one more round with us.
I haven't blogged in a long time - and frankly I've enjoyed it. The activity on this blog is in direct inverse proportion to Ann's health. So less blogging means no cancer. Well until last week that is.
Dr. G, Ann's Otolaryngologist at MDA (who also performed the surgery on her tongue) called her the other day and gave her the run down on the PET scan results. Basically there are 3 hot spot nodes that look enlarged (1.2cm, 1.5cm and 1.1cm) in the right side of her throat. They all vary between levels 2 to 5, but I will spare you the amateur anatomy lesson on the exact placement of the nodes, just that they are all near the jaw line or jugular.
The surprise came when she noted that Ann's right tonsil is also "hot" on the PET scan. So it looks like we may (may) not be dealing with a recurrence of the tongue lesion from more than a year and a half ago. This could be something "new" that originated in the tonsil.
Considering the timeline of this thing is about 6 weeks and it's exploded into the lymphatic system this makes sense. 6 weeks ago Ann was at MDA and believe me when Dr. K does an exam she palpates Ann's nodes throughly, not forgetting that Ann's original leukemia presented as a reactive node. During that visit there were no enlarged nodes, jump forward a few weeks and Ann notices one at breakfast and calls Dr. B at Mary Bird Perkins. And then last week we have a reading of squamous cells detected in the needle biopsy done two weeks ago.
My working theory is that this is a realtively young disease that originated in her right tonsil. The tonsil is the gateway to the lymphatic system so it has been able to roam freely from the origin source to several of the nodes.
What we don't know at this point is if the cancer is HPV positive. Since Ann is immune suppressed I would guess that there is a decent chance that it is. What little information I have been able to absorb from journals is that HPV positive tumors of this type tend to be smaller tumors with more lymphatic activity. Which sounds bad, but actually has a more favorable outcome attached to it.
Tuesday we are in appointments with Dr. G and the rest of the MDA team and I expect we will know more.
In the meantime the Light of my Life is doing her best to age me prematurely by another 20 years. This morning started with phlegm in her throat which brought on vomiting. Later in the day we stopped by a friend's birthday party for her kids and dropped off presents. After about 40 minutes there in baking conditions (very hot today) Ann fainted and just about split her skull on a door frame. Friends jumped in and made sure Ann was taken care of. We're very fortunate to have such amazing people in our lives.
If you have read our blog for the last couple of years I want to say first " thank you". We have drawn immeasurable support from the comments and contacts we have made through our efforts. Second, I feel I owe everyone an apology that we have to ask you to go through one more round with us.
Thursday, May 15, 2014
It's Cancer
My doctor called me with the biopsy results yesterday. It came back positive for squamous cell carcinoma.
As a side note, I saw my transplant team at MD Anderson on Monday and had a CT scan out of an abundance of caution and in order to give my transplant doctor the opportunity to examine the nodes in question.
My local oncologist has been amazing throughout this process and I can't say enough about him. He's been in contact with my doctors at MDA--who are also fabulous in their own right. My head and neck surgeon's team has organized my pre-op appointments. I need to have a PET scan to see if the cancer is any where other than my neck. Then I need to have my heart checked out to see if I'm healthy enough for surgery and treatment. There will be X-rays and I'll need to be cleared by internal medicine. For good measure, I get to see my dermatologist for my annual check-up the same day. (It's been on the books for a year.)
This all kicks off on 5/22. If I'm cleared, I'll meet with my surgeon on 5/27 and surgery will take place the following day.
Chris or I will update as we get news.
As a side note, I saw my transplant team at MD Anderson on Monday and had a CT scan out of an abundance of caution and in order to give my transplant doctor the opportunity to examine the nodes in question.
My local oncologist has been amazing throughout this process and I can't say enough about him. He's been in contact with my doctors at MDA--who are also fabulous in their own right. My head and neck surgeon's team has organized my pre-op appointments. I need to have a PET scan to see if the cancer is any where other than my neck. Then I need to have my heart checked out to see if I'm healthy enough for surgery and treatment. There will be X-rays and I'll need to be cleared by internal medicine. For good measure, I get to see my dermatologist for my annual check-up the same day. (It's been on the books for a year.)
This all kicks off on 5/22. If I'm cleared, I'll meet with my surgeon on 5/27 and surgery will take place the following day.
Chris or I will update as we get news.
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