After being diagnosed in 2019, May and I sat down and talked about what our future would look like. We decided that after treatments and a lengthy recovery we would would work toward getting our old life back. We hoped that I would be in good enough health to resume my career as a defense contractor and we would be able to travel again and spend time overseas. It seemed so far away, almost impossible. It felt like we were lying to ourselves and just trying to convince ourselves that I was going to survive this.
Over the past 3 years we’ve held onto this goal. We didn’t know what the extent of my recovery would be. I wondered If my taste buds would ever come back, If I’d be on a feeding tube for the rest of my life or even if the treatments would work at all.
I did everything the Doctors and Nurses told me to do. I got a lot of help from friends, family and strangers on discussion boards and blogs who told me I’d get through it. Gradually, as my recovery progressed, the dream of being normal again began to seem achievable.
I’m happy to write that almost exactly 3 years from the date of my diagnosis I realized a huge step in my recovery. In the middle of the night on Easter Sunday April 17th 2022 I was the only passenger in the back of a C-130 Military Aircraft somewhere over the Persian Gulf. I had just completed 10 days of preparation and passed an extensive medical evaluation by the Military Medical team at Ft Bliss, TX prior to being allowed to deploy.
It was surreal. The old familiar humming of the C-130 propellers and the smell of the aircraft took me back to a time before cancer when I felt invincible. I felt like Did 20 years ago but more experienced and wiser. I take nothing for granted now and see each new day as an opportunity to be a better, more appreciative person than I was before.
I feel like I’m getting control of my life back as I work toward being a better version of my former self. I hope this provides a little bit of inspiration to anyone who is dealing with this awful disease. There can be life on the other side of a cancer diagnosis.
It has been 3 years since I noticed that curious lump on the side of my neck that started all of this. When I first noticed it, I had no Idea what was coming. I honestly thought it was nothing and it would be gone in a few days. Boy was I wrong. The roller coaster ride that came over the next year or so was unbelievable.
I am so grateful to be here and for all of the people who helped me through the treatments and recovery. I can finally honestly say that I am closer to normal than I ever thought I’d be and I have a lot of people to thank for that. Looking forward to great future.
I met a couple named Jim and Crystal who reached out to me when Jim was diagnosed with cancer very similar to mine. We had been emailing back and forth when we accidentally ran into each other at a restaurant the weekend before Jim started his treatments at Mayo Clinic. Coincidence? Maybe.
He has completed his treatments and is recovering now. They have done an amazing job of describing their journey through all of this in a blog at: https://jimb.blogforacure.com/weblog It gives a genuine look at the ups and downs of treatment of and recovery from Oropharyngeal Cancer and shows how excruciatingly slow and discouraging the recovery can be.
I encourage everyone to check it out and wish Jim well on his continued recovery.
I can’t believe it’s been nearly 2 1/2 years. The nodule on my upper lung turned out to just be a little scarring from the radiation treatments. In the last CT scan in June it appeared to be about half the size of previous scans. I still follow up with my ENT every 4 months. I just had a visit with him yesterday and everything looks great. I will hit my 3 year mark in May and our visits will be less frequent.
My taste is mostly normal. Saliva production is less than before treatment and I get dry mouth when I exercise and have to make sure there’s water on hand. Apparently my thyroid did suffer some damage. I take 75 mcg of levothyroxine daily to increase my T4 level and feel great. Aside from this my life is about the same as before. Sometimes I forget that I had cancer and how difficult it was.
Not everyone will need a feeding tube but I did. There was a point in my treatment that I hit a low point. I wasn’t able to take in enough calories, nutrition and water without vomiting. I was weak and wasn’t sure I could make it. My wife convinced me to get the feeding tube and within a few days everything began to change. After a few attempts with the tube I didn’t have the nausea and vomiting. Once I was able to get nutrition and hydration I became more energetic and optimistic about my recovery. I began gaining weight and I believe it significantly sped up my recovery. Most people who go through this think that getting a feeding tube somehow means they are a failure. I was in this group in the beginning but later realized that success and winning was recovering and getting back to normal no matter how I got there.
The G-Tube was the best tool I had in my recovery. I couldn’t heal without nutrition and the tube allowed me to pump in as much nutrition as I wanted. If you can get through this without needing it, that is great! If you can get your nutrition and calories by mouth then that is obviously the route to take. Everyone is different. If you’re like me and can’t get enough nutrition to heal, please don’t torture yourself and delay your healing by refusing it.
The reason I insist on writing about the tube is because everyone who has contacted me as they begin their treatments has been against getting a feeding tube. Ultimately the ones who have finally decided to get it expedited their recovery and were ultimately glad they did. Others refused and had massive weight loss, dehydration, depression and suffered through trying to choke down enough calories to survive.
The hospital shipped cases of Jevity to the house. I managed to take in 6 Jevity’s a day which is:
90.6 grams of protein
306.6 grams of carbs
All of my vitamins and minerals.
I hope that people who stumble across this blog realize that there is hope. There is life after treatment. My advice would be focus day by day on getting through the treatment. Focus on getting enough calories and nutrition to heal all of the damage done by the radiation no matter how you can get it in your body. Do whatever you have to do to recover and then you can hopefully get on with your life and put it behind you.
Last Tuesday I had a followup CT Scan. The results were uploaded to my “Follow My Health” account online yesterday. The results showed “There is a new ground-glass nodule within the left upper lobe measuring up to 14 mm”. Followed by: 1. New spiculated area of ground-glass within the left upper lobe which may be infectious or inflammatory.
I started wondering if this means the cancer has spread from my tonsils and lymph nodes to my lungs? Dr Gillison told me months ago that if it metastasized to my lungs it would be considered Stage IV and there wouldn’t be much they could do for me. May and I were freaked out by the report.
I wasn’t scheduled to see the Dr. to discuss the CT scan results until next week. I called the office first thing this morning and explained that I had seen the report and needed to get in to discuss it as soon as possible. They called back and got me in at 10:30 am today. He explained that we needed to do another scan in 6 weeks and see if it grows, stays the same, shrinks or disappears. This will give us much better idea of what’s going on. If it’s bigger we’ll do a biopsy. If it stays the same or shrinks we’ll keep an eye on it. If it’s gone we won’t worry about it.
He felt that it is more likely that it is from infection rather than cancerous. I told him that I had read that “spiculated” often means it is malignant. He said that the image was not spiculated and didn’t know why that was in the report. He said that it was what they refer to as ground-glass which is cloudy rather than solid. Though not 100%, this is typical of infections.
Now I’m waiting for another scan in 6 weeks and another few days for the results.
Today marks 6 months since my last radiation treatment. A lot has changed since then. I feel great. I eat anything I want. Food tastes like food again. I still have dry mouth but it has improved considerably.
I seem to have more energy now than I did even before I was diagnosed with head and neck cancer. I’m not sure if the cancer was making me feel tired all of the time or if the look into my own mortality has made me appreciate everything more. Either way, I’ve never felt better.
Following up with the Oncologist next Friday about the results from the CT scan I had Tuesday. I’m expecting everything will be normal.
Just when I try to put this behind me, there is another scan or followup visit to remind me. It seems like I’m always waiting. Waiting for results, waiting for another test, waiting for a followup visit, waiting for disaster to strike and hoping that it won’t.
It’s been 5 months since my last radiation treatment. I wouldn’t say I’m one hundred percent but I’m closer to one hundred percent than I thought I’d ever be just a few months ago, so that’s great. I’ve been back to work for 7 weeks and started lifting in the gym for the first time in 3 years. My taste is steadily improving and the throat pain is gone. I still have dry mouth but ACT lozenges and my ever present bottle of water help with that.
About 10 days ago I noticed a hard lump on the left side of my neck. It felt similar to the lymph node that started this whole ordeal 10 months ago. I already had a visit with the ENT Dr. Huang scheduled for today so I figured I’d just wait and ask him about it when I saw him.
Over the past week I’ve constantly been checking the new intruder to see if I could detect any changes. It appeared to be getting smaller. Also when I first noticed it, it was painful. It is no longer painful and got noticeably smaller which was encouraging.
At my checkup today I asked Dr. Huang about it. He checked it out and said it was actually swelling in my carotid artery. He was certain it’s not a return of cancer and said it’s nothing to be concerned about. He felt that it was probably caused by my constantly self checking my neck. I’m always checking my neck for anything unusual since the original diagnosis of cancer in the lymph node. Apparently I’ve developed a habit of feeling my neck which has irritated it and caused the lump. His advice to me was simply “Stop playing with it”, which got a juvenile chuckle out of me.
I guess for a while it will be normal to expect the worst every time there’s a lump, unexplained cough or anything else out of the ordinary. I was never concerned about these things back when I thought “It can’t happen to me”. Now that I realize it can, everything appears to be a threat. Hopefully this will ease up over time but for right now, it’s all still pretty fresh in my mind and hard to ignore.
Everything went well at my visit with Dr. Huang and I’m still cancer free.
Three and a half months post radiation therapy for tonsil cancer.
No more feeding tube! It was removed today. It was a very simple and quick procedure. The Nurse sucked the air and liquid out of the balloon through the little orange valve on the tube with a syringe. Then it just slid right out. There was a little sting but not bad at all. The whole process took less than a minute.
Since the last radiation treatment my taste has improved considerably. I would say it is probably 80%+ from where it was pre radiation treatment. Fruits and juices taste very sour but are improving. Last week I couldn’t drink orange juice but I had a glass this morning. It was a pretty sour but got through it. I ate a plate of shrimp and scallop fettuccine alfredo from a local Italian restaurant two days ago and it was fantastic. It tasted just as I remembered. A couple of months ago I remember thinking this day would never come.
I can eat just about anything I want now. Tonight I had a chili dog which actually tasted better than I remembered.
The only issue I have with eating has been that after several bites there is some scratchiness in my throat. A month ago it would be too painful to swallow more than a bite or two of anything, but that has improved week by week. The recovery is slower than one would expect but recovery is happening. With a typical illness or injury you can see improvement day by day. I have learned to measure my recovery from cancer treatment by the week.
I started out about a month ago with a scrambled egg. I could only eat 2 small bites before it was too painful to continue. The next week I ate the whole egg but couldn’t do a second one. Now, I can eat a 3 egg omelet with cheese. I still can’t handle meat in it but will continue adding stuff until eventually it’ll be loaded. Tomato sauces and anything acidic irritates my throat but it’s getting better.
Saliva production is improving. I still have dry mouth and carry water most of the time but if I forget it it’s tolerable. I still can’t eat anything without a drink at the ready. Foods that are wet or have sauces or gravy are the easiest. Steak is very hard to break down. Chewing a bite of steak, even a good tender cut with a gallon of water, seems to take for ever. It feels like I’m burning more calories chewing than I’m taking in. Eventually my jaws get tired and I move on to something else. It’s just not worth the trouble. Maybe in a few weeks or months it will improve. I hope so because who doesn’t love a good steak.
I have eaten honey barbecue chicken wings this week and managed to get 3 down before the sauce burned my throat. It was definitely worth the pain. Baked fish is probably the easiest meat to eat.
I was scheduled to have my PET scan on November 14th but I was notified a couple of weeks ago that the request had been denied by my insurance company. The request was submitted by my ENT Dr. Huang. I read that a scan, 12 weeks post radiation treatment, is standard operating procedure so I was confused about why it would be denied. I thought that maybe the denial was possibly caused by a procedural error or some confusion in the peer to peer process between Dr. Huang and the Insurance company. I explained the issue to Dr. Ferraro’s office and asked if they would submit the request. They notified me about a week later that it had been approved and would take place on November 19th.
The last few days have really taken their toll. The constant worry about the results… Did we get it all? Had it metastasized? I had read about people finding out at their 12 week scan that it had metastasized to the lungs and they were given 6 to 8 months to live. I guess it is possible to do too much research. If you look hard enough for bad news, you’ll certainly find it. I couldn’t sleep at all last night waiting to learn the results this morning in a follow-up with Dr. Ferraro at 11am.
I sat in the office waiting for him come in and give me the results. I was fearfully optimistic. When he walked in he put an end to my anguish by blurting out “Your PET scan looks awesome!” He went over the report with me. He opened the images on the computer and showed me how everything looks normal. I can’t possibly explain the sense of relief I felt.
I know there is always a chance it will come back but right now, for this moment, for this one battle, it’s over and we’ve won. The pain the suffering the emotional havoc and the cruelty of the treatments were all worth it. I’m still here! I’m getting stronger every day. If it returns someday and there is a new battle to fight I’ll be as prepared as I can be. But for now I’m going to enjoy my cancer free life for as long as lasts.
It has been 10 weeks since my last radiation treatment. I guess it was overly optimistic of me to think that I’d be back to normal by now. I do feel much better and have more energy and fewer episodes of fatigue. I’m also maintaining my weight with the help of a feeding tube, although I’m 20 lbs lighter than when I started treatments. Things are definitely improving but at a much slower pace than I had hoped.
I have much of my taste back but textures of foods feel all wrong. My throat gets very irritated if I try to swallow any food. It’s also very difficult to get anything other than liquids down. It feels like my throat has shrunk and it takes a lot of water to help it down due to lack of saliva production. I’m starting to eat more but the throat pain limits my intake.
I need to be able to eat enough to maintain my weight without supplementing with the feeding tube so I can finally have it removed. It’s strange how some things taste exactly like they did before but now are not enjoyable at all. I don’t have cravings for anything anymore. I can’t wait to start enjoying food again, eat full time and lose the tube.
When this started I was strongly opposed to getting a feeding tube. Now I realize I couldn’t have made it through this without it. It allowed me to pump in all of my calories and nutrition which made healing possible. It really hasn’t negatively impacted my daily activities. As long as I tape it down good, so it doesn’t get snagged on anything, it doesn’t get in the way.
I saw the ENT last week who said that everything looks good and is healing normally. I’m scheduled for a PET scan on November 14th. This will be at 12 weeks post treatment. Hoping all goes well with that! I’m really looking forward to getting back to work. I’m so lucky to work for a great company. The management and my fellow employees at Frye-Williamson have been super supportive. I can’t thank them enough.
I feel like I’ve turned a corner. The burns on my neck are starting to heal but still there, my throat is not as sore as it was but still uncomfortable. I feel much better than last week. I have good days followed by bad ones which is weird. It’s more of a two step forward one step back type of progression. It is slow. The improvement from one day to the next isn’t noticeable but week to week it is.
last week I put salt in my mouth to see if I could taste it. I followed that with sugar. I couldn’t taste either of them. They both tasted like I had sand in my mouth. I did it again today and the taste was very faint but I could definitely tell the difference between them. This is really exciting. The sooner I can start eating, the sooner I can get rid of the feeding tube and start getting back to normal.
Treatments are over but the burns seem to be getting worse along with the way I feel. I’m told I just need to tough it out for a couple of weeks and I’ll turn the corner and notice some improvement. It can’t come fast enough.
We finally finished the last radiation treatment today and rang the bell to celebrate the completion. Surprisingly climbing off of the radiation table was more emotional than I thought it would be. It’s hard to believe it’s over. After the neck surgery, five weeks of chemo, a feeding tube, daily vomiting, constant fatigue, loss of taste, loss of saliva, countless doctors visits, trips to the ER and thirty three treatments of radiation, I can actually start getting better from here.
The Staff was great through the whole ordeal. They were supportive through every session. Thank you so much Amy, Ashley, Laura and Shiela. You all made this experience as pleasant as possible.
My throat is becoming increasingly uncomfortable. It’s a little more difficult to swallow every day. Speaking is even difficult. I hope it doesn’t get much worse but I’m told it will get worse over the next week or two. Most people I’ve read about who have gone through this become reclusive during this period as the suffering increases. I’m not sure how much I’ll be posting until I come out of the other side.
Weight – 147.2 lbs / Down 26 lbs from pre-treatment peak.
Tuesday will be my last Radiation treatment. I can’t wait to ring that bell and start the healing process. I’ve been trying hard to increase my calorie and protein intake to expedite the healing process. It’s really important to stay hydrated and keep those kidneys flushed. Water! Water! Water!
I can’t wait to get some taste back, get rid of the awful mucous buildup and start producing some regular saliva. I’d also like to heal the burns on my neck and stop my tongue from burning all the time but don’t want to appear too demanding.
Weight – 148 lbs / Down 25 lbs from pre-treatment peak.
I went to Chemo on Monday morning and met with Dr Gillison. Because of my rapid weight loss, nausea and vomiting he felt that stopping the chemo would be for the best. He said that by completing 5 of the 7 chemo infusions we have accomplished the goal. There would not be much benefit if any by completing the last 2 sessions. This was great news to me. Nine more radiation treatments left then we can focus completely on recovery.
I’ve been dreaming about food. I have these cravings that last for days. It’s mostly fruit which is weird because I’ve never been a big fruit eater. I’m more of a steak and taters lover. All I can think about are things like an ice cold glass of orange juice, a mango smoothie, or these awesome fresh fruit cocktail drinks we use to get in Kuwait at a juice stand next to our apartment. At this point I’d settle for some grape Kool-Aid. I only have to wait for the burning in my mouth to go away, my ability to swallow to improve and my taste buds to return which could be months. Can’t wait!
In the meantime, I’ll continue pushing Ensure and Pedialyte directly into my stomach with a big plastic syringe.
I got released from the hospital yesterday afternoon with my new feeding tube and a plan to get through the rest of my treatments. After starving for 4 days it was actually a relief to pump a few hundred calories straight into my stomach with a syringe that looks like it was made for basting turkeys. I made it to radiation today for treatment number 19. I have 14 left. I missed my Chemo yesterday so that will set me back a week. I still have 2 to go.
We met a great nurse at the Hospital who really gave us a lot of great information. Her husband recently went through the same radiation treatments with my Oncologist, Dr Ferraro. His cancer got into his jaw as a result of chewing tobacco for 30 years. They removed his jaw and replaced it with a fabricated jaw made from the bone in his lower leg. He had the feeding tube and went through the 7 weeks of radiation. He is now 3 months post treatment. He looks like he lost an incredible amount of weight but he’s starting to get his taste buds back and is doing pretty well. That gives me hope.
There was another really great nurse from Morocco who showed us all about the feeding tube, how to use it, how much to put in it, how often, etc. She was excited to learn that May is from Egypt it was like she found a long lost friend in a city full of strangers. May and I hope we see her again under better circumstances. She is a really nice person.
Feeding Tube – Check
Pain Killers – Check
Cases of Jevity to put in my Tube – Check
Great support team – Check
Determination to get through this and get my life back – Check
Looks like I have everything I need to get through this. Thanks to everyone for your support.
I haven’t been able to take in nearly enough calories and my water intake has really dropped off the past few days. May talked to the doctor this morning who wanted me to go to the hospital for IV hydration.
After spending about 3 hours getting fluids they decided to admit me. The doc scheduled an operation to have a PEG feeding tube installed in my stomach in the morning. I was hoping it wouldn’t come to this but now I’m just looking forward to getting something in my stomach any way possible.
Unfortunately this little setback may delay my next chemo and radiation.
It’s finally Friday and I’m finished with radiation for the week. I have 15 more treatments left which is 3 more weeks. I’m told that the next 4 to 5 weeks will be the toughest of my life. My throat is incredibly sore and it’s becoming more difficult to swallow. Fatigue sets in several times a day which is probably due to the lack of calories I’m able to take in.
Officially on a liquid diet consisting of Ensure and water. I haven’t eaten anything since the hotdog on July 4th. Everything tastes awful. Even water tastes like it’s full of rust. The nausea has been intense. Keeping anything down aside from water or Ensure has been impossible.
I read about something called Miracle Fruit or Miracle Berries. They are berries that enhance your tastebuds. There are reports that they have been helpful to cancer patients taking chemo and radiation. People say they temporarily mask the metallic taste and enhance foods natural flavors. This helps patients eat while going through treatments. I was encouraged by this and ordered some. They arrived today and I couldn’t wait to try them.
I noticed a slight change in the taste but all in all it didn’t work for me. The improvement was not nearly enough for me to eat more than half a bite of anything. I’m not saying it doesn’t work but it definitely didn’t work for me.
Chemo went pretty well today until I got finished and threw up in the parking lot for 20 minutes. I only have 2 left which gives me something to look forward to.
The radiation is already doing some damage. I feel like there is a huge lump in my throat. When I swallow it feels like I’m swallowing a Globstopper. It’s getting pretty painful and I’m not yet half way through. I can’t imagine how bad it will get after 18 more treatments.
I never realized how much I took the sense of taste for granted until I lost it. I crave things, remembering what they used to taste like but knowing it would taste horrible if I tried to eat it. I loved settling in on the couch on a Saturday evening with a plate of Mays’ homemade chocolate chip cookies fresh out of the oven and a tall glass of milk. Chocolate now tastes awful. I can only hope that over the coming months and years my taste comes back so I can enjoy these simple pleasures again.
3 more Chemo treatments and 23 Radiation sessions left. Salivary glands are pretty much useless. I have dry mouth all of the time and wake up with my throat stuck together. It’s weird as hell.
I did the radiation first today followed by the chemo. This works so much better because after chemo I’m completely wiped out. I definitely wouldn’t have felt like being trapped under the mask for 20 minutes after my chemo treatment today.
I got a break from radiation on the 4th of July which was nice. My brother grilled burgers, brats and hotdogs and everyone brought a dish. There were about 20 people there. Unfortunately, the nausea from the chemo was at its peak on Thursday but I managed to wrestle down a hotdog. It didn’t really taste like a hotdog but I ate it anyway. Everything tastes bad now.
Last week milk tasted spoiled but now it has no taste at all, so, I’m back to drinking milk. I drank coffee every day for 30 years but suddenly I hate the smell and taste of it now. I figured out today that Monster Mean Bean in a can goes down pretty good so I got jacked up on that this afternoon and mowed the lawn.
Today is the best I’ve felt in a week. I’m on a complete liquid diet now and expect that to last a couple of months. I need to stay in the neighborhood of 2000 calories to maintain my weight. That’s around 6 Ensures per day. Now that I’m back on milk, I can use Carnation Breakfast mix which I like.
Tomorrow is Tuesday which brings another round of back to back chemo and radiation. After tomorrow I’ll only have 3 more of those back to back days left. My last chemo is on Monday July 29th. I’ll be so glad to get that part behind me although I’ll still have several more rounds of radiation left.
Tuesdays are the worst because I get chemo and radiation back to back. The first Tuesday I had chemo and had a reaction later that night that landed me in the ER. The next Tuesday I had Chemo then Radiation. I was swollen from the chemo and the radiation mask was so tight it choked me and they had to unhook me, pull me out of the machine and start over.
This week I did the Radiation first to avoid this and it seemed to work pretty well. I still hate Tuesdays!
I did get some good news today. I am only getting 7 total chemo sessions which means I only have 4 weeks left. There are still 27 radiation treatments which are starting to take their toll. I’ve completely lost my taste buds. My salivary glands are barely producing so I have constant dry mouth and carry water at all times. I wake up at night with a dry sore throat and have to drink water.
I know it’s going to get much worse but I’m anxious to get through the treatments so I can start the recovery. I’m holding my weight so that’s good but it’s getting harder to eat with no taste buds, no appetite and a sore throat. I’ll probably have to start moving toward a liquid diet in the next few days. I’m told the liquid diet could last for months before getting back on solids. Hey, whatever it takes to get through it.
I’m waiting to see if todays round of chemo is going to add to the rash or if it has leveled off. It’s bad but I think I can tolerate it for the next several weeks if it doesn’t get much worse. According to the Doc, I’m estimating I’ll be at my absolute worst around the first or second week of September. I’m looking forward to getting to the bottom so I can start the slow climb back up.
It’s a weird concept to continue to go to treatments that are designed to do damage and make you feel worse. It’s kind of hard to look forward to them.
The nausea medicine helped a lot. Eating much better today but everything tastes different. Unfortunately I’m expecting things will get rough again after my next chemo session on Tuesday.
The rash is crazy. I’m taking the antibiotics and using the cream they gave me but the chemo rash is relentless. It has covered my chest, part of my back, my face and even in my ears. The Doctor said that the presence of the rash means the chemo is working. It’s itchy, painful, ugly and just plain sucks but a small price to pay if it helps get rid of the cancer.
I’ve been nauseous and fatigued since chemo on Tuesday. The chemo has made everything taste bad and all milk tastes spoiled. I have no appetite but am trying to force myself to eat. It’s been difficult to keep anything down. It was really hard to lie on the table with the radiation mask on while feeling nauseous. I managed to get through 4 treatments this week. The rash from the chemo is out of control.
May called Dr Gillisons office and got them to prescribe anti nausea medication. I took one earlier today and one this evening and it is definitely making a difference. I managed to eat some noodle soup and it stayed down. 6 more chemo treatments and 29 more radiation treatments left. It seems so far away right now knowing things will continue to get worse and recovery is a long process.
I’ll have Saturday and Sunday without any treatments. I’m hoping to start feeling better before the next chemo wipes me out. one day at a time.
I had my second round of chemo this morning. Everything went fine but I hate the Benadryl feeling. It makes me foggy and tired all day. I finished chemo at 2pm and went to radiation at 3pm. I was feeling a feeling a little nauseous after chemo which made it difficult to lay still with my head strapped to the table for radiation.
The rash from the chemo showed up on Monday. I was told from the beginning that I would probably develop a pimple type rash like a teenager. I’m thinking maybe if the teenager had leprosy! It’s mostly on my chest with some on my face and scalp. Today Dr. Gillison gave me a prescription for a mild antibiotic and a cream to help with the itching. So far it’s not itching too bad but it feels like burning in a few spots on my face.
Radiation treatments will be daily now with the exception of weekends.
Business as usual today. Went to work and felt great all day. It was nice to be back in my old routine at work. Had lunch with my brother like I’ve done on most days for the last several months. While at lunch I got the call from Dr, Ferrero’s office to schedule my first Radiation appointment. The appointment is set for Tuesday. I’ll get my chemo treatment Tuesday morning then go to Radiation in the afternoon. Radiation will be every weekday after that for 33 sessions.
It’s crunch time! Not looking forward to this at all, but looking forward to getting through it.
Yesterday evening I started experiencing some shortness of breath and coughing. I had a massive headache all afternoon and evening since my chemo treatment. I was drinking plenty of water to make sure it wasn’t dehydration. Took a couple of Tylenol but that didn’t help. When I went to bed I was struggling to inhale. Exhaling didn’t seem to be a problem but I had to make an effort to get air in my lungs. At one point I experienced some fluttering in my chest like heart palpitations. At that time I figured the smart thing to do would be to go to the hospital in case I was having a delayed reaction to the Cetuximab treatment.
May drove and we arrived at the hospital at around 11:30pm. They gave me a saline IV, blood test, EKG, chest x-ray, CT scan looking for blood clots. My blood pressure was elevated 149/90. It usually runs 115/65 so it was a little abnormal for me but not dangerous. Everything else was normal. The RN gave me a steroid shot to help with any inflammation. Within 10 minutes after the shot the headache began to subside and my blood pressure normalized. I don’t know if it was the steroid shot or just the fact that the IV fluids had been going for a couple of hours at this point.
They did another EKG and blood test to see if there had been any change since my arrival but everything was normal. I was released and made it home around 4:30am. We still have no idea what happened. A nurse suggested it could be anything from a reaction to the chemo or Benadryl, to simply anxiety. I was really hoping it wasn’t a reaction to the Cetuximab (Erbitux) because that would mean I’d have to stop treatments and start Cisplatin treatments which I’m told has much harsher side effects.
When I called the Oncologist today to tell them about the trip I explained that I may have overreacted by going to the ER. They said “Absolutely not!” and that these symptoms should be checked out immediately. It could have been very bad, but luckily It’s all good! Feeling great today.
My Mom and May took me to my appointment this morning. I was a little nervous going to my first Chemo treatment. Last weekend I read an article that said 3% of patients have an allergic reaction to Cetuximab and go into cardiac arrest during their initial treatment.
When we arrived at the hospital they sent me to have blood taken so they could do the bloodwork. We were then led to an exam room where my vitals were taken. After a short wait Dr. Gillison came in to talk with us. He discussed the process along with the side effects and possible risks.
He explained that I would be monitored very closely by the staff who would be prepared to act quickly if I experienced any reaction to the drug. We were then ushered to the treatment room where the nurse told me since this was my first treatment I would be sitting in the “Special” chair. This meant I would be sitting next to the nurses station where they could monitor me.
Once the IV was installed I received a bag of Benadryl which made me little groggy. This took 15 minutes or so. Next was a saline flush. I can’t tell you exactly how long this took because I was dozing off a little from the Benadryl. Next came the first bag of Cetuximab. I waited for any kind of reaction so I could quickly alert them. May was at the ready with the alert button. Occasionally I would get a weird chemical taste in my mouth but other than that there was no reaction. It was all pretty uneventful, which is great.
I had 2 bags of Cetuximab followed by a 10 minute saline flush. From the time I arrived at the hospital to the time I left was exactly 5 hours.
They had a TV at each station, snacks, soda, coffee, etc. as well as a concierge who would bring you anything you want if you didn’t want to get up to get it yourself. I had to get up and walk around a few times to stretch my legs. The Benadryl is weird as it kind of came in waves. One minute I’d be wide awake and walking around and the next minute I couldn’t keep my eyes open. Then I’d be wide awake again.
By the time I got home I really couldn’t tell I’d been to treatment. I was a little sluggish like I hadn’t slept well the night before, but other than that, no immediate side effect. I’m sure those will come later. I’ll keep you posted.
May and I had a great time having drinks with friends on Friday night. That’s something we haven’t done in awhile. It was so nice to kick back and have some laughs and a few beers (actually a few too many but oh well). Thanks Troy and Heather, it was fun. On Saturday enjoyed a drive with May and my Mom then had a nice Harley ride in the afternoon. On Sunday we met up with Troy and Heather again and played a round of golf.
It was so good to just forget about the cancer for a bit and feel like my old self before all of the scans, biopsies, diagnosis, treatment plans and uncertainty started. Tuesday brings the start of the chemo treatments, and radiation soon after. I’m so thankful to have such a great support system. May and my Mom go with me to all of my appointments and make sure I’m doing what the Doctors say. My friends and family are always encouraging and keeping me upbeat. I have a strong will and am determined to do a lot of cool things with my life before it’s over. This is just a setback before the next chapter begins.
I went to the dentist today to get a good cleaning and discuss the need for a crown prior to getting my radiation mask made and starting treatments.. The dentist explained that it would be perfectly fine to proceed with getting my mask and moving forward with radiation treatments. He said after I get the mask made I should call his office and schedule an appointment next week to have the tooth ground down and a temporary cap put in place. I could continue with my treatments and then go back approximately 3 weeks later to have the cap removed and the crown put in place. This sounded reasonable to me but my Doctor said NO WAY!
After my appointment I went to have my radiation mask made. Dr. Ferraro came in asked me how my dental appointment went. When I explained what the dentist told me, he said, “I’m going to call him. I’ll be right back.” When he returned he explained that this plan will not work. He said the dentist was planning to insert a metal temporary cap which would likely cause serious painful ulcers in my mouth or even more severe issues. My options are to either have the tooth extracted prior to treatment or complete the treatment and then have the crown done. Since the tooth has a crack but is otherwise healthy and doesn’t bother me, I opted to have my treatments and try to save the tooth with a crown later. We’ll see if this was a decision I’ll regret later.
I’m so glad that Dr. Ferraro is so diligent and discovered this before we got started. I read as much as I can about my brand of cancer and treatments. I’ve tried to ask as many questions as I can but there are still a lot of things I’m not aware of. Luckily I have good people looking out for me.
The purpose of the mask is to keep your head in the same position so they can mark and radiate the exact area they want to target by fastening it, along with your head to the table. To make it, you lie on the table with your head in a cradle and a neck pillow supporting your neck and head. The warm wet mesh is placed over your face and shoulders and fastened to the table. It took about 15 minutes for it to dry before it is removed.
I went for my checkup today to find out if I needed any dental work performed prior to starting my treatments. I was really nervous about this one because I had read so many stories of people needing as many as 8 extractions before starting radiation. I was so relieved to find out I only needed one crown. The oral surgeon who did the examination said everything looked healthy with the exception of a molar that was cracked. I made an appointment for Thursday June 13th to get a good cleaning and the crown.
The Oral Surgeon explained in detail how radiation effects teeth, gums, bones etc. It was very enlightening and a little scary. He explained that once I had radiation I would never be able to have teeth implants if I needed them because of the irreversible damage does to the bones and blood supply to the bones. He also explained that dental hygiene would be of critical importance going forward. Because of the lack of saliva caused by radiations damage to the saliva glands I would no longer have that “auto rinsing system” to flush out bacteria. He also recommended using fluoride trays throughout my treatments to keep the teeth strong.
Afterwards my wife May and I went to my Radiation Oncologists office to give them the update on the dental work. They asked to update them so they could schedule my appointment for creating my mask and get together with the Chemo Oncologist to develop my treatment plan schedule. While we were there Dr. Ferraro asked us if we’d like to see my PET Scan on the computer and had a great discussion about the process of the treatments. He stayed with us until he was certain every question had been answered for us.
Having Doctors like Dr. Ferrero, Dr. Gillison and Dr. Huang who are willing to spend this kind of time helping us understand exactly what is happening and what to expect is priceless. I feel lucky to have them.
Thanks for joining me on this journey to survive and beat Head and Neck Cancer. Here’s an overview of my experience up to the point I started this blog.
I’m 50 years old and in reasonably good health so I guess I always thought that this won’t happen to me but was wrong. It’s mind boggling how life can change so quickly. We can go from not having a care in the world to fighting for our lives in the blink of an eye. My plan is to document my fight here and emerge as a better, stronger person for having gone through it.
I’m an Army Veteran and was a Military Defense Contractor for 15 years. I had spent 12 of those years living and working in Middle Eastern countries. I had been at home in the Midwest working for a local company for about 6 months when I noticed a painless lump on the left side of my neck in mid March 2019. I showed it to my wife who kept insisting I go to the doctor. I felt great and was in excellent health so I nervously waited about 3 weeks expecting it would go away, but it didn’t.
When I saw the doctor on April 10th he set up an appointment with Dr Huang, an excellent Ear, Nose and Throat Specialist and respected surgeon in my area. I actually saw his Nurse Practitioner who took a biopsy of my tonsil which she felt looked suspicious. She then scheduled an ultrasound on the lymph node. I waited 3 days for the results, consumed by “what if” scenarios. The tonsil biopsy finally came back negative and I was so relieved. After the ultrasound showed that the lymph node was enlarged to 2.5 cm they scheduled a fine needle aspiration biopsy on the lymph node.
This entire period seemed to take forever. In reality it was around two and a half weeks but the waiting and worrying made it feel like months.
The lymph node biopsy was positive for Squamous Cell Carcinoma. Dr Huang called me at work to give me the news. I was in shock and went home early to break the news to my wife and ponder what comes next.
Since that day everything has been a blur. A CT scan and subsequent PET did not reveal cancer elsewhere in my body which was encouraging. The Doctor still felt the tonsil was suspicious and believed it was the source of the cancer. He scheduled surgery on May 21st which included a neck dissection in which he removed 19 lymph nodes as well as both tonsils. The result was 2 cancerous lymph nodes and tumors in both tonsil. The tumor in the right tonsil was actually larger than the left, which was surprising since there were no symptoms in the right side.
This photo was taken a few hours after surgery. There is a drain tube that was removed 48 hours after surgery when I was discharged. The XH is Dr. Huangs initials ensuring they prepped the correct side for surgery.
They also biopsied the back of my throat, areas of my tongue and I think a few other places. I was a little foggy when he was explaining it all. Everything was negative except the tonsils and lymph nodes. Dr Huang said the silver lining is that the tests were P16 Positive. He explained that this type of cancer generally responds well to radiation and chemo treatments.
This photo was taken 3 weeks after surgery. Dr. Huang did a great job. The scar is looking better every day. The nurse said jokingly, that as I get older and fatter the scar will disappear into the folds of my neck. At least I think she was joking.
The Neck Dissection really hasn’t caused any major problems. The left side of my face and neck were numb but it feels like i’m getting the feeling back in small areas every few days. The Doc says it should all return but may take months or even years. Currently my neck constantly tingles like when your foot or hand goes to sleep and it feels like needles.
The tonsillectomy however was another matter. This is something that I wish I’d had as a child. Swallowing was really rough. I ate a lot of apple sauce, pudding, mashed potatoes, ice cream etc. I tried to switch to solid food a little too soon which slowed the healing process and delayed my recovery. Altogether it was just under 3 weeks before I was comfortable eating solid foods. I started with scrambled eggs and oatmeal and moved on from there.
I got through it mostly on Tylenol but I was prescribed Hycet Liquid which is Hydracodone and Acetaminophen in a liquid form like a cough syrup. I used it a couple of nights before bed when it was really bad. It helped a lot but I would still wake up in the middle of the night with a dry painful throat and take a Tylenol.
The Cancer Treatment Plan
I was then referred to Oncology for radiation with Dr. Ferraro and chemo with Dr Gillison. I met with both Doctors who are terrific and very informative. Working together, they have a plan to treat me with 33 rounds of radiation and 8 treatments with Cetuximab. I will be seeing my dentist on June 10th to take care of the necessary dental work and extractions to start my treatments.
From reading so many others stories I am realizing that this is just the beginning of long and grueling struggle.
I am expecting that as a result of chemotherapy and radiation I will:
lose my sense of taste
lose my saliva production
lose extreme amounts of weight
lose my ability to eat and have to live on liquid supplements for a time
suffer extremely painful burns on my throat and neck
develop painful sores in my mouth
develop a painful and irritating rash
People have described many more horrible radiation side effects for which i’m trying to mentally prepare. I’m sure that my expectations are mild compared to to the reality of all of these effects simultaneously attacking me.
I am understanding that there may be long term or even permanent side effects. I’m concerned about some of the long term side effects like fibrosis and inability to swallow and requiring a permanent feeding tube. I’ve read posts from people who have experienced these effects and hope I can escape them. My new normal after cancer will likely be different from my old normal. I’m optimistic and find encouragement in the success of so many others who have gone through this and shared their experiences through blogs and discussion board posts. I’ve listed some in the Resources link at the top of the page.