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.
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.
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.
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.