My ENT spoke with me over the phone yesterday to give me the results of the pathology from my surgery. It was nice that he didn't make me drive in to get the results since it's an hour drive to get there and our conversation lasted less than 10 minutes.
He said the pathology results came back positive for squamous cell carcinoma in the lingual tonsil tissue. There were two foci of scc; one 4 mm and the other 6 mm. He said they were very small. I wanted some scale so I looked up the average size of a green pea and found it to be 7.4 mm, so these were smaller than the size of a pea. I consider the fact that they found the cancer very good news. Now the somewhat bad news.
They were near the edge of the tissue that was removed. He said if they were at the center of the mass that was removed I would be done because that would mean he had plenty of margins to be confident that no cancer cells were remaining. However, due to the fact that they're near the edge, he's pretty confident that there are some microscopic cancer cells remaining. He said that my body may take care of the remaining cancer cells during the healing process, but he can't be sure that will happen. So he's recommending moving forward with radiation and also chemotherapy albeit a mild form of chemo that has very few side effects.
Actually, I'm kind of glad he's recommending radiation and chemo. I'm not sure I would be so confident with just a surgery. Mostly because I got that stuff going on around my Adam's Apple, even though it may be related to the surgery's I've had. By doing the radiation and chemo it gives me that extra bit of confidence that we're not missing any straggling cancer cells. I want to make sure this thing is wiped out to oblivion!
Also because I recently signed up for Imerman Angels, a support network where cancer patients can speak with a mentor who's survived the same type cancer they have. I spoke with my angel about a week before surgery who's been a survivor for 15 years now. She was a nurse at the time and was very aggressive with her cancer. She told her doctor she wanted the strongest radiation and chemo because she too wanted to be 100% sure it was gone. I don't know if I want to go that far, her cancer was a little different after all and it was 16 years ago so I'm sure things have changed. But I'm happy with my plan and I think it should be thorough enough.
I've already contacted my radiation oncologist and heard back from his medical assistant. I have an appointment first thing Monday morning where we'll have a brief meeting on what they found and where and what the treatment will entail. I also let them know about my ENT's recommendation for chemo. The MA said that they have an oncologist right next door.
(I didn't realize that an oncologist is the doctor that administers chemotherapy drugs until I just looked it up now. I already have an oncologist, but I spoke with him right before my surgery and he himself went in for surgery two days after I did and told me he'll be out for six weeks. That and the fact that this new oncologist will be part of the same Medical Center, for more fluent information exchange, and right next to my radiation oncologist it just makes sense to switch.)
Anyway, the MA of my RO is going to bring my file over to the oncologist next door and have them contact me for an appointment to get everything coordinated. So, I keep moving forward.
I'm not sure how soon I'll be able to start treatment. I believe my ENT originally said two weeks after surgery and two weeks will be next Tuesday. There some setup involved and I think they need to get approval from my insurance. So I'm guessing I'll probably start in a couple weeks. I know how long appointment sometimes take so I wanted to get the ball rolling. So if I start just after Christmas I'll be done by February sometime.
I still have significant discomfort in my throat when swallowing and talking and I'm on a soft food diet until Monday. Can't wait til Monday!! All the six-dollar burger and pizza commercials are killing me. Lol.
Yesterday I stopped my pain meds, mostly because I ran out, but was pleased to discover that I didn't really need them anymore. I don't really like having to take medications if I don't have to. Not sure if there are actually people that do, but maybe so. Wouldn't surprise me.
Oh, I also checked my weight this morning and hit 150. That kinda hit me hard. My caloric intake hasn't been what it should be but I'm not beating myself up over it. I've been doing my best with recovering and all. But 150 is where it stops. With radiation and chemo coming up I'm bound to lose weight with the expected loss of appetite so my goal now is to start regain those lost pounds. I need to be aggressive with increasing my caloric intake. Just need to hold on til Monday!! ;)
Showing posts with label tonsillectomy. Show all posts
Showing posts with label tonsillectomy. Show all posts
Friday, December 9, 2016
Friday, December 2, 2016
Second Surgery - Lingual Tonsil Removal
I went in for my second surgery on Tuesday, Nov. 29th to have my lingual tonsils removed. I was scheduled to go in at 1:30 PM, then got bumped up to 12:00 PM then got pushed back to 4:00 PM. A little annoying but we rolled with it, my wife and I.
At least this time we warned them of the difficulty I had last time of getting my IV inserted. As a result of us mentioning this they prepped my arms by rolling them in warm towels and hot packs and sent in a very skilled nurse to start my IV. She was brilliant and got it the first try. I can't tell you how much of a relief this was.
I don't recall if I mentioned this previously but it took three different staff members on three different locations on my body to get my IV started last time. I almost ended up passing out. Finally the anesthesiologist got it done. Besides recovery, the worst part of the last surgery.
The staff mentioned on several occasions that I would be meeting with my doctor, which didn't happen last time, before surgery but I was prepared to insist on it if need be. I was relieved when I saw him and I knew I wouldn't have to push for it. It's always nice to be able to talk to your doctor before and after surgery. Last time his physician's assistants gave me wrong information before and after surgery. This time I was determined to get it from the horses mouth, as it were, before and after my procedure.
I wanted to make sure that when he had me on the table and before he removed my lingual tonsil that he scoped my throat and went all the way down past my Adams Apple which is where I'm experiencing the most pain and discomfort. I also wanted him to make sure that there wasn't anything going on down there. He insured me that he would. He also explained that he would be removing both lingual tonsils.
I met with my anesthesiologists one of whom said a prayer for me. They then administered the sedative that would "relax" me and before I even got to the operating room I was out.
I awoke about four hours later in my recovery room with my wife by my side. The surgery only took a couple hours. Post surgery is a lot of checking vitals and making sure everything starts working again.
The only thing I had trouble with was urination. I initially thought there was something wrong with me. I just didn't feel the need to go, but apparently that's a side effect of the anesthesia. I had to be "drained" once with a catheter. I've never had that done before and the discomfort motivated me to get on-board the pee train, sorta speak. I knew that if I tried, I could go a little, whether I felt it or not. Now all I had to do was go more often and I could keep my bladder below the point, approximately 500 ml, where they would have to catheter me.
Apart from that everything else was pretty normal. I was able to drink clear liquids, protein juice and jello, and take my medicine, with the aid of the Aloe Gloe I brought. I stayed overnight and began an advanced liquid diet the next day consisting of creme chicken soup, sherbet and pureed pears. The soup was good and I was able to finish it which was a significant accomplishment because it allowed me to get the calories needed to heal quickly. The sherbet was ok but after I saw all the sugar it had I put it aside. Nutritionally it was just not going to contribute to my healing so why bother. The pureed pears were too acidic and burned going down so I left those unfinished too. I also had one of the vegan protein drinks I had brought; another moral booster due to the calories and nutrition it provided.
In the afternoon they finally gave me the news that I could go home. I think that's always welcome news when in the hospital. Everyone was really nice and attentive there, but, as they say, there's no place like home. I heard my doctor was in the building so I asked if he could come by before I left.
He came in the room with a couple interns, I believe. I'm not sure since he didn't introduce them. He was under the impression that we had specific questions for him ready-to-go but I really just wanted to talk to him about the surgery. He seemed kind of put-off, but my wife got the ball rolling and it turned out to be a very informative conversation.
The obvious question, which he had already informed my wife who in turn informed me, was that initial pathology didn't find any squamous cells in the tonsil tissue. They'll be sending that out for a detailed analysis which should come back in five days. He said they removed an area about the size of two half-dollar coins stacked on top of each other. I was surprised at how large of an area they took out in relation to the relative little pain I felt. He also took out a ridge of suspicious tissue in my throat and that was healthy too.
He did scope my whole throat again going below my Adam's Apple and he said all the tissue looks really healthy. He said this will be my last surgery, at least for awhile unless it shows up somewhere else.
I asked him where else it could be hiding. He said either my immune system got rid of it, my body formed a cyst around it somewhere, or it's somewhere very, very small. I then asked if at such a small size could it still have spread to my lymph node? He nodded and said, "Yes.".
He also acknowledged the contribution I made in discovering the discrepancy in radiology images to his interns. He said I am the person responsible in bringing it to their attention that images were missing when transferred between databases. He let me know that they had a meeting that very morning with radiology where he had some firm words expressing his dissatisfaction with the discrepancies in the system and was determined to get it corrected. That made me feel good to think that I may have had a part in finding a flaw in a system that, once corrected, will insure people can be diagnosed more accurately.
Despite him being a little put off by having to come down without me having pre-scripted questions he ended up being very forthcoming and communicative with the conversation even venturing into the jovial realm at times. I'm sure the pumpkin bread my wife brought him and his staff had a little something to do with that.
At least this time we warned them of the difficulty I had last time of getting my IV inserted. As a result of us mentioning this they prepped my arms by rolling them in warm towels and hot packs and sent in a very skilled nurse to start my IV. She was brilliant and got it the first try. I can't tell you how much of a relief this was.
I don't recall if I mentioned this previously but it took three different staff members on three different locations on my body to get my IV started last time. I almost ended up passing out. Finally the anesthesiologist got it done. Besides recovery, the worst part of the last surgery.
The staff mentioned on several occasions that I would be meeting with my doctor, which didn't happen last time, before surgery but I was prepared to insist on it if need be. I was relieved when I saw him and I knew I wouldn't have to push for it. It's always nice to be able to talk to your doctor before and after surgery. Last time his physician's assistants gave me wrong information before and after surgery. This time I was determined to get it from the horses mouth, as it were, before and after my procedure.
I wanted to make sure that when he had me on the table and before he removed my lingual tonsil that he scoped my throat and went all the way down past my Adams Apple which is where I'm experiencing the most pain and discomfort. I also wanted him to make sure that there wasn't anything going on down there. He insured me that he would. He also explained that he would be removing both lingual tonsils.
I met with my anesthesiologists one of whom said a prayer for me. They then administered the sedative that would "relax" me and before I even got to the operating room I was out.
I awoke about four hours later in my recovery room with my wife by my side. The surgery only took a couple hours. Post surgery is a lot of checking vitals and making sure everything starts working again.
The only thing I had trouble with was urination. I initially thought there was something wrong with me. I just didn't feel the need to go, but apparently that's a side effect of the anesthesia. I had to be "drained" once with a catheter. I've never had that done before and the discomfort motivated me to get on-board the pee train, sorta speak. I knew that if I tried, I could go a little, whether I felt it or not. Now all I had to do was go more often and I could keep my bladder below the point, approximately 500 ml, where they would have to catheter me.
Apart from that everything else was pretty normal. I was able to drink clear liquids, protein juice and jello, and take my medicine, with the aid of the Aloe Gloe I brought. I stayed overnight and began an advanced liquid diet the next day consisting of creme chicken soup, sherbet and pureed pears. The soup was good and I was able to finish it which was a significant accomplishment because it allowed me to get the calories needed to heal quickly. The sherbet was ok but after I saw all the sugar it had I put it aside. Nutritionally it was just not going to contribute to my healing so why bother. The pureed pears were too acidic and burned going down so I left those unfinished too. I also had one of the vegan protein drinks I had brought; another moral booster due to the calories and nutrition it provided.
In the afternoon they finally gave me the news that I could go home. I think that's always welcome news when in the hospital. Everyone was really nice and attentive there, but, as they say, there's no place like home. I heard my doctor was in the building so I asked if he could come by before I left.
He came in the room with a couple interns, I believe. I'm not sure since he didn't introduce them. He was under the impression that we had specific questions for him ready-to-go but I really just wanted to talk to him about the surgery. He seemed kind of put-off, but my wife got the ball rolling and it turned out to be a very informative conversation.
The obvious question, which he had already informed my wife who in turn informed me, was that initial pathology didn't find any squamous cells in the tonsil tissue. They'll be sending that out for a detailed analysis which should come back in five days. He said they removed an area about the size of two half-dollar coins stacked on top of each other. I was surprised at how large of an area they took out in relation to the relative little pain I felt. He also took out a ridge of suspicious tissue in my throat and that was healthy too.
He did scope my whole throat again going below my Adam's Apple and he said all the tissue looks really healthy. He said this will be my last surgery, at least for awhile unless it shows up somewhere else.
I asked him where else it could be hiding. He said either my immune system got rid of it, my body formed a cyst around it somewhere, or it's somewhere very, very small. I then asked if at such a small size could it still have spread to my lymph node? He nodded and said, "Yes.".
He also acknowledged the contribution I made in discovering the discrepancy in radiology images to his interns. He said I am the person responsible in bringing it to their attention that images were missing when transferred between databases. He let me know that they had a meeting that very morning with radiology where he had some firm words expressing his dissatisfaction with the discrepancies in the system and was determined to get it corrected. That made me feel good to think that I may have had a part in finding a flaw in a system that, once corrected, will insure people can be diagnosed more accurately.
Despite him being a little put off by having to come down without me having pre-scripted questions he ended up being very forthcoming and communicative with the conversation even venturing into the jovial realm at times. I'm sure the pumpkin bread my wife brought him and his staff had a little something to do with that.
Wednesday, November 23, 2016
ENT Follow-up - Post MRI
Yesterday, Nov. 22nd, I had an office visit with my ENT, expedited by my wife. Thank you, wife. The radiologist that evaluated my MRI already reported that nothing was found. What I really wanted to discuss was what I had found and for him and to address a bunch of questions I had from discussing my case with other doctors I had casual conversations with.
First and foremost I asked him about what I saw on my PET scan and how what I saw seemed to differ from what the radiologist reported. First thing my ENT did was thank me for my due-diligence in being proactive in my case then asked how I became so good at reading PET scans. My wife interjected that I'm and I.T. tech and am very meticulous. That seemed to make some sort of sense to him and he commented on how he didn't think he's ever had a patient read a PET scan and send him images from it. Ya, well, I'm highly motivated to get to the bottom of this.
Anyway, he went on to say that first of all these scans tend to be tricky to read and its sometimes hard to determine where "hotspots" actually present themselves in tissue and that it's difficult to determine a location based on a 2D screenshot. I told him I understood that and that the image I sent him was just a reference shot so that he would know where in the images 3D to get a better look at what I was concerned about. He then asked where I got those images and I told him off the CDs I had sent him. He said that was interesting because, for whatever reason, all the images from the CDs hadn't been uploaded to their system, so they didn't have access to everything I did. He did confirm that he did review the images before surgery but didn't realized that he was missing some of the data. Now that he has all the CDs with all the images he's going to go back personally and review all the images to see if they reveal any new information. I also asked him if he can have their radiology department review the images and he agreed that would be a good idea and would have that done.
Another question I had for him was whether, during my surgery, he felt around the other areas of my mouth for lumps or irregularities and if he scoped my throat looking for it further down. He said that he did and nothing else presented itself. He said that if my Palatine Tonsil hadn't been so hard, like it had a tumor inside, he would have taken out my lingual tonsil at the same time, but because it presented itself so strongly it seemed like it was definitely in there. I, or my wife, also asked him if pathology had evaluated my tonsil tissue during surgery. He said they did but what they can do during surgery is very limited. He said to get a detailed report they have to send it out and they take very fine slices which take days to complete. I asked him if he would have pathology re-examine my tonsil tissue that they removed to double-check that it's not there. He said he would have them go through it again.
I then asked him about the Tumor Board. He first explained some common misconceptions that people have about the Tumor Board. He then went on to say that it's standard protocol for all cases at this medical facility to go before the Tumor Board and mine did prior to surgery. I asked if he would present my case again and he said he would.
My final request was to have him scope my throat now to see if he could see anything that would be causing the pain I'm feeling now. He was reluctant to do so. I probably would have just let it go but my wife was insistent. (I'm extremely thankful I have her with me though this.) He eventually capitulated and scoped me.
First of all it was fascinating to see inside my own body, but everything as far as I could tell looked fine. He did point out what looked like a very small ridge below my tongue which he said might be the location, but it's very subtle. To me it looked like nothing and it made me feel good to see my throat tissue look so healthy. As far as the pain is concerned, he said it could be caused by the cancer/tumor could be pushing up against a nerve. I asked if it could be post nasal drip or acid re-flux. He said it could, but he didn't offer up much else.
Finally I asked him if it's safe to assume that because the cancer/tumor is so difficult to find that it's of a certain size. He said that more than likely it's probably smaller than a centimeter. Tumors that small or smaller usually don't show up very well if at all.
So, we decided he would do another surgery and biopsy some tissue in the back of my tongue. It may be a small amount or more if the small sample doesn't prove fruitful. Depending on the tissue sampled I may go home the same day or need to spend the night. That would also determine recovery time. I'm scheduled to go back into surgery Dec. 19th.
He'll also do all the other things discussed to see if any new information turns up. Hopefully something more concrete presents itself.
Overall the office visit was very positive. Everything we discussed gave me a sense of confidence that they are doing their due-diligence. Additionally, I am very pleased with my ENT's attitude. He was very open and forthcoming with information, open to suggestions and willing to do everything I asked for. This has been my best experience with him so far and I feel like he's doing everything possible to treat me as anyone going through this should feel.
First and foremost I asked him about what I saw on my PET scan and how what I saw seemed to differ from what the radiologist reported. First thing my ENT did was thank me for my due-diligence in being proactive in my case then asked how I became so good at reading PET scans. My wife interjected that I'm and I.T. tech and am very meticulous. That seemed to make some sort of sense to him and he commented on how he didn't think he's ever had a patient read a PET scan and send him images from it. Ya, well, I'm highly motivated to get to the bottom of this.
Anyway, he went on to say that first of all these scans tend to be tricky to read and its sometimes hard to determine where "hotspots" actually present themselves in tissue and that it's difficult to determine a location based on a 2D screenshot. I told him I understood that and that the image I sent him was just a reference shot so that he would know where in the images 3D to get a better look at what I was concerned about. He then asked where I got those images and I told him off the CDs I had sent him. He said that was interesting because, for whatever reason, all the images from the CDs hadn't been uploaded to their system, so they didn't have access to everything I did. He did confirm that he did review the images before surgery but didn't realized that he was missing some of the data. Now that he has all the CDs with all the images he's going to go back personally and review all the images to see if they reveal any new information. I also asked him if he can have their radiology department review the images and he agreed that would be a good idea and would have that done.
Another question I had for him was whether, during my surgery, he felt around the other areas of my mouth for lumps or irregularities and if he scoped my throat looking for it further down. He said that he did and nothing else presented itself. He said that if my Palatine Tonsil hadn't been so hard, like it had a tumor inside, he would have taken out my lingual tonsil at the same time, but because it presented itself so strongly it seemed like it was definitely in there. I, or my wife, also asked him if pathology had evaluated my tonsil tissue during surgery. He said they did but what they can do during surgery is very limited. He said to get a detailed report they have to send it out and they take very fine slices which take days to complete. I asked him if he would have pathology re-examine my tonsil tissue that they removed to double-check that it's not there. He said he would have them go through it again.
I then asked him about the Tumor Board. He first explained some common misconceptions that people have about the Tumor Board. He then went on to say that it's standard protocol for all cases at this medical facility to go before the Tumor Board and mine did prior to surgery. I asked if he would present my case again and he said he would.
My final request was to have him scope my throat now to see if he could see anything that would be causing the pain I'm feeling now. He was reluctant to do so. I probably would have just let it go but my wife was insistent. (I'm extremely thankful I have her with me though this.) He eventually capitulated and scoped me.
First of all it was fascinating to see inside my own body, but everything as far as I could tell looked fine. He did point out what looked like a very small ridge below my tongue which he said might be the location, but it's very subtle. To me it looked like nothing and it made me feel good to see my throat tissue look so healthy. As far as the pain is concerned, he said it could be caused by the cancer/tumor could be pushing up against a nerve. I asked if it could be post nasal drip or acid re-flux. He said it could, but he didn't offer up much else.
Finally I asked him if it's safe to assume that because the cancer/tumor is so difficult to find that it's of a certain size. He said that more than likely it's probably smaller than a centimeter. Tumors that small or smaller usually don't show up very well if at all.
So, we decided he would do another surgery and biopsy some tissue in the back of my tongue. It may be a small amount or more if the small sample doesn't prove fruitful. Depending on the tissue sampled I may go home the same day or need to spend the night. That would also determine recovery time. I'm scheduled to go back into surgery Dec. 19th.
He'll also do all the other things discussed to see if any new information turns up. Hopefully something more concrete presents itself.
Overall the office visit was very positive. Everything we discussed gave me a sense of confidence that they are doing their due-diligence. Additionally, I am very pleased with my ENT's attitude. He was very open and forthcoming with information, open to suggestions and willing to do everything I asked for. This has been my best experience with him so far and I feel like he's doing everything possible to treat me as anyone going through this should feel.
Monday, November 21, 2016
Moving Forward Again
Friends to the Rescue
I posted to Facebook asking my network of family and friends for a referral to a radiologist for a second opinion of my scans. It wasn't long before for a few of my friends reached out to me. That alone was enough to raise my spirits and made the world of difference emotionally.
I spoke with my friends brother-in-law over the phone this morning on the way to work. He's a doctor out of San Francisco. Very nice guy who was genuinely concerned for my well-being. He had a few great suggestions.
He recommended I have my case reviewed by the Tumor Board. Being that I'm young, have had surgery already and the primary site was still unknown made me a good candidate. The Tumor Board is a panel of doctors that review cancer cases to discuss the PET/CT/MRI images, tests or pathology results and past treatments. They brainstorm and decide on what best course of action would be. Sounds perfect! I feel like the more people I have looking at this the sooner it'll come to a resolution.
It also seems to me like my Oncologist and ENT aren't communicating much, if at all. I asked if he recommended having an Oncologist at the same medical center as my ENT and radiation oncologist and he did. He said my Oncologist should really be the one spearheading my treatment and if he's at the same medical center as the other doctors he can bang on doors and get answers. I did some research and I think I found one. Just have to make an appointment.
Another thing he said I could do is ask my ENT to have the pathology department take another look at my tonsil tissue that was removed. He said the tissue is usually saved and sometimes the first look doesn't always prove fruitful, but a second look does. It's worth a shot. Hopefully my ENT agrees.
So that conversation was pretty awesome. It gave me some direction and confidence.
Pain in the Throat
However, there's still the fact that I wasn't scheduled to see my ENT until Dec. 1st and I'm still experiencing intense, sharp pain in my throat throughout the day. It was bad enough last night that I was seriously considering going to the Urgent Care or Emergency Room last night. Then I did some research.
I found, on the Internet of all places (lol), that pain around the Adam's Apple, which is where I'm experiencing it at the moment, could be caused by acid reflux (which could be caused by stress) or post-nasal drip. I thought about that and, obviously, I've been stressed lately, especially in the last month or so when I first heard the news that they didn't find the cancer in my tonsils.
I've also been having some post-nasal drip, maybe even during the last couple weeks. Hmmm. So lastnight I took some Benedryl before bed. Will help me sleep at least. This morning, no difference, but it may take a few days. So I'm going to take some antihistamine/decongestant over the next few days to see if it goes away.
Enter the Wife
But my wife, on the other hand, is not going to standby and let me suffer. She could see I was miserable and was in pain. So she asked if I wanted her to call to try to get me into the ENT earlier. I was highly doubtful she could. I had already called and left a voicemail letting them know I was in pain and wanted to be seen sooner. Maybe they were just waiting to see if I was REALLY in pain and would call back?
I figured it couldn't hurt so I told her to go ahead and give it a shot. Well, she blew my mind. In a few minutes she had gotten me an appointment first thing in the morning the very next day!! I asked her how she got me an appointment so soon? She told me that unleashed "bitch mode" on them and they got me in. Wow! Word of warning out there, don't mess with an Irish woman or her man. Word of wisdom, if you have cancer, hope you have a spouse that has a fully functioning "bitch mode" available. ;)
I posted to Facebook asking my network of family and friends for a referral to a radiologist for a second opinion of my scans. It wasn't long before for a few of my friends reached out to me. That alone was enough to raise my spirits and made the world of difference emotionally.
I spoke with my friends brother-in-law over the phone this morning on the way to work. He's a doctor out of San Francisco. Very nice guy who was genuinely concerned for my well-being. He had a few great suggestions.
He recommended I have my case reviewed by the Tumor Board. Being that I'm young, have had surgery already and the primary site was still unknown made me a good candidate. The Tumor Board is a panel of doctors that review cancer cases to discuss the PET/CT/MRI images, tests or pathology results and past treatments. They brainstorm and decide on what best course of action would be. Sounds perfect! I feel like the more people I have looking at this the sooner it'll come to a resolution.
It also seems to me like my Oncologist and ENT aren't communicating much, if at all. I asked if he recommended having an Oncologist at the same medical center as my ENT and radiation oncologist and he did. He said my Oncologist should really be the one spearheading my treatment and if he's at the same medical center as the other doctors he can bang on doors and get answers. I did some research and I think I found one. Just have to make an appointment.
Another thing he said I could do is ask my ENT to have the pathology department take another look at my tonsil tissue that was removed. He said the tissue is usually saved and sometimes the first look doesn't always prove fruitful, but a second look does. It's worth a shot. Hopefully my ENT agrees.
So that conversation was pretty awesome. It gave me some direction and confidence.
Pain in the Throat
However, there's still the fact that I wasn't scheduled to see my ENT until Dec. 1st and I'm still experiencing intense, sharp pain in my throat throughout the day. It was bad enough last night that I was seriously considering going to the Urgent Care or Emergency Room last night. Then I did some research.
I found, on the Internet of all places (lol), that pain around the Adam's Apple, which is where I'm experiencing it at the moment, could be caused by acid reflux (which could be caused by stress) or post-nasal drip. I thought about that and, obviously, I've been stressed lately, especially in the last month or so when I first heard the news that they didn't find the cancer in my tonsils.
I've also been having some post-nasal drip, maybe even during the last couple weeks. Hmmm. So lastnight I took some Benedryl before bed. Will help me sleep at least. This morning, no difference, but it may take a few days. So I'm going to take some antihistamine/decongestant over the next few days to see if it goes away.
Enter the Wife
But my wife, on the other hand, is not going to standby and let me suffer. She could see I was miserable and was in pain. So she asked if I wanted her to call to try to get me into the ENT earlier. I was highly doubtful she could. I had already called and left a voicemail letting them know I was in pain and wanted to be seen sooner. Maybe they were just waiting to see if I was REALLY in pain and would call back?
I figured it couldn't hurt so I told her to go ahead and give it a shot. Well, she blew my mind. In a few minutes she had gotten me an appointment first thing in the morning the very next day!! I asked her how she got me an appointment so soon? She told me that unleashed "bitch mode" on them and they got me in. Wow! Word of warning out there, don't mess with an Irish woman or her man. Word of wisdom, if you have cancer, hope you have a spouse that has a fully functioning "bitch mode" available. ;)
Wednesday, November 2, 2016
Post Tonsillectomy and Neck Di-section Surgery - One Month Later
Well, it's been four weeks after my surgery, the time my ENT said it would take for me to heal from the surgery. However, I think his definition of healed is different than what I had in mind. I now believe his definition was that would be the time it took for my wounds to be healed to the point that they are fully closed and I would be no longer be at risk of them reopening. In that sense, mission accomplished. However I am far from "healed" in the sense that I am back to normal.
I still have numbness running from my ear down to my collar bone, but I feel this has improve incrementally over the last week or so. It started around the 22nd of October when, for a couple days, I felt lightening bolts travel through my neck a few times. Lightening bolts is probably too powerful a word. They were more like small electrical jolts. None-the-less that seemed to be the beginning of increased feeling through this area. The mixed areas of numbness and feeling have made shaving and moving my neck feel very strange. This is just a mere annoyance I believe will go away with time.
The more disconcerting thing is going on in my mouth. Although my voice has returned for the most part I can tell my voice has changed. If I talk loud enough it sounds, at least to me, like I have a speech impediment. It sounds slurred or like when a deaf person speaks though not as pronounced.
Drinking is also another problem. I can no longer take a continuous drink. I have to take small sips and carefully swallow and always in a fully upright position otherwise it goes straight up my sinuses. Food is not as much of a problem but occasionally there's an area that seems to capture food and I can feel it in the back of my mouth just sitting there stuck. Typically a drink is sufficient to free it.
Another thing that I've noticed that's changed is my smile. It looks mechanical and forced, which I guess it kinda is since part of my jaw is still numb so at least I have hope that it will return back to normal when the numbness subsides.
Finally, whenever I sneeze, cough or yawn it feels like the back of my throat is tearing open again. I try to suppress these actions to reduce the pain, but as much as I try they always hurt.
These all may seem like little things; maybe they are. I think these annoyances would have been easier to accept if they had found the cancer in my tonsil and successfully removed it. Then at least I would have had a net gain. However, since they didn't find the cancer there I now have to face the fact that I may lose more of who I am, suffer more discomfort and lose more functionality in order to find the cancer that may or may not be there anymore. How much more of my body will have to be carved up to be cured?
I saw my radiation oncologist a couple weeks back. He said he was reluctant to proceed with any radiation therapy unless ordered by my ENT. This struck me as kind of odd since he seemed more concerned about stepping on my ENT's toes rather than doing what was in my best interest.
Then I saw my oncologist this week and this concerned him as well. He thought each doctor should form their own opinion as to which is the best course of treatment with the best interest of the patient at the forefront without regards as to whether will offend the other doctors. Up until this point they were all in agreement, but now that the primary site wasn't where it was suspected there's some disagreement as to how to proceed.
They all still agree to do the MRI. If the MRI shows something, fine, then we'll have a definite direction. However both my ENT and oncologist are skeptical the MRI will find anything.
If it doesn't, my ENT wants to play the wait and monitor game where I'll go in for scans at regular intervals to see if it turns up anywhere. My oncologist thinks that if the MRI is negative that I should go ahead with radiation to the whole region. The only problem with that is that my radiation oncologist said that I could lose all function of my saliva glands. As a result my mouth will be constantly dry and I'll have to carry water on me at all times to hydrate my mouth. That does not sound fun.
It's amazing the little things we take for granted like being able to salivate but realize how important they are when they're on the table to be taken away. Kind of like Sophie's Choice but with your body.
So, as far as this is concerned, I'm waiting on my MRI. That is scheduled for November 13th. I had it scheduled for tomorrow, but that's a whole other story I'll save for another post tentatively titled, "My life as a cash cow."
I still have numbness running from my ear down to my collar bone, but I feel this has improve incrementally over the last week or so. It started around the 22nd of October when, for a couple days, I felt lightening bolts travel through my neck a few times. Lightening bolts is probably too powerful a word. They were more like small electrical jolts. None-the-less that seemed to be the beginning of increased feeling through this area. The mixed areas of numbness and feeling have made shaving and moving my neck feel very strange. This is just a mere annoyance I believe will go away with time.
The more disconcerting thing is going on in my mouth. Although my voice has returned for the most part I can tell my voice has changed. If I talk loud enough it sounds, at least to me, like I have a speech impediment. It sounds slurred or like when a deaf person speaks though not as pronounced.
Drinking is also another problem. I can no longer take a continuous drink. I have to take small sips and carefully swallow and always in a fully upright position otherwise it goes straight up my sinuses. Food is not as much of a problem but occasionally there's an area that seems to capture food and I can feel it in the back of my mouth just sitting there stuck. Typically a drink is sufficient to free it.
Another thing that I've noticed that's changed is my smile. It looks mechanical and forced, which I guess it kinda is since part of my jaw is still numb so at least I have hope that it will return back to normal when the numbness subsides.
Finally, whenever I sneeze, cough or yawn it feels like the back of my throat is tearing open again. I try to suppress these actions to reduce the pain, but as much as I try they always hurt.
These all may seem like little things; maybe they are. I think these annoyances would have been easier to accept if they had found the cancer in my tonsil and successfully removed it. Then at least I would have had a net gain. However, since they didn't find the cancer there I now have to face the fact that I may lose more of who I am, suffer more discomfort and lose more functionality in order to find the cancer that may or may not be there anymore. How much more of my body will have to be carved up to be cured?
I saw my radiation oncologist a couple weeks back. He said he was reluctant to proceed with any radiation therapy unless ordered by my ENT. This struck me as kind of odd since he seemed more concerned about stepping on my ENT's toes rather than doing what was in my best interest.
Then I saw my oncologist this week and this concerned him as well. He thought each doctor should form their own opinion as to which is the best course of treatment with the best interest of the patient at the forefront without regards as to whether will offend the other doctors. Up until this point they were all in agreement, but now that the primary site wasn't where it was suspected there's some disagreement as to how to proceed.
They all still agree to do the MRI. If the MRI shows something, fine, then we'll have a definite direction. However both my ENT and oncologist are skeptical the MRI will find anything.
If it doesn't, my ENT wants to play the wait and monitor game where I'll go in for scans at regular intervals to see if it turns up anywhere. My oncologist thinks that if the MRI is negative that I should go ahead with radiation to the whole region. The only problem with that is that my radiation oncologist said that I could lose all function of my saliva glands. As a result my mouth will be constantly dry and I'll have to carry water on me at all times to hydrate my mouth. That does not sound fun.
It's amazing the little things we take for granted like being able to salivate but realize how important they are when they're on the table to be taken away. Kind of like Sophie's Choice but with your body.
So, as far as this is concerned, I'm waiting on my MRI. That is scheduled for November 13th. I had it scheduled for tomorrow, but that's a whole other story I'll save for another post tentatively titled, "My life as a cash cow."
Sunday, October 23, 2016
Shout Out to Aloe Gloe
I wanted to give a brief shout out to Aloe Gloe for being a huge aid during this period of recovery from my tonsillectomy. It has saved me much pain and discomfort on a daily basis.
I've used it since day one to chase down food even the soft ones like soup, mashed potatoes and spaghetti. I've used it as a follow-up to other drinks like milky protein drinks that left my throat feeling mucilaginous. Most importantly I used it to make taking liquid Hydrocodone (my pain medication) tolerable.
It's kinda ironic that in order to be relieved of my pain I have to endure the added pain of taking my pain medication. At first I used it to chase the medicine. That provided follow-up relief but it still required me suffering through a moment of painful, burning sensation in my throat. But I soon realized that if I poured my dosage of Hydrocodone into a small glass and mixed in an ounce of Aloe Gloe it tremendously decreased the burn of drinking the medicine straight up.
Luckily I thought of using aloe water immediately after surgery. I didn't have any previous experience with this product, it was just one of the aloe drinks my wife happened to come upon while trying to fill my request for an aloe drink.
There are quit a few out there but I didn't want one with a lot of sugar or any other added ingredients or pulp to make swallowing any more complicated than it already was. I also tried aloe products with coconut water, but the coconut made my mouth and throat feel dry. I just wanted something that was soothing enough, that I could drink everyday and that wasn't as harsh as water. You wouldn't think water is harsh but when your throat is raw you can definitely feel how harsh it is. Kind of like dry winter air on chapped lips or dry sinuses.
Anyway, I just wanted to share my experience with this product so that others could hopefully benefit from it and be saved of any unnecessary discomfort. Live well, heal fast.
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