Husband diagnosed with tonsil cancer: looking for tips and support

Part 6 of 6

Left hospital and went to the grocery store to load up on Brawney paper towels for my SDs, some yogurt and boosts and soup. Just sat in the parking lot waiting for the hotel room to be available. Did not want to go anywhere looking like an alien with my drain tube, not having shaved and was just beat. Finally checked into room, had a shower and went from feeling real crappy to feeling to less crappy. Still almost constant SDs. Doc had said 3rd and 4th days would be the worst. I'd agree. Tylenol still every 6 hours and I did have an oxycodine. Slept fairly well in the DP.

Friday was another SD tough day with yorgut and a Boost in the morning. At hospital @ 8:45 to remove drain line. SDs filled 3 napkins on way to office and 3 more in office with nurse. She cut a suture and some of the drain line and told me she would pull on three. She lied (thank you). On two she yanked upward and on three I saw Sirius, Antares, and a couple other shooting stars. There was now a pencil eraser size hole behind my ear and the nurse showed my wife it and how to change the bandage over it. The bar was not open so we headed home. She drove and I croaked out directions to get to I-10 back to Pensacola, Trip took over a half a roll of Brawny and multiple spitstops. About 2 hours in I started coughing quite a bit and stopped for some cough drops. They did not work. Dogs were happy to see us home. Me too. I crashed in the DP.

That night was pretty much periods of getting up for SDs every 45 to 60 mins minutes, Tylenol at 6 hour periods. Yorgut, leftover cream of cauliflower soup, a Boost, and some ice cream during the day. Believe there were at least two 2 hour breaks from the SDs. And the end of the day, feeling slightly better, down about 10 pounds from before the surgery, and have a big bar bill.

Sunday, relatively good previous night. Assumed DP about 9pm, woke up around 11pm for SD, and the again at midnight and took Tylenol. SD's at 1:30AM, 3:30 & 5ish. Tylenol @ 5:30 (cheated). Slept for hour. Ate yorgut with blackberries. Had coffee with some Boost added. Sipped half the coffee and all the rest of the Boost bottle. Tylenol @ 2pm, peach yogurt with blueberries @ 2:40. One annoyance is that small pieces of food would get stuck in the back of my throat no matter how much I chewed. Eventually it would work out and has since gone away.

In general, lots of SDs again but more respites. AND was able to swallow water, not just sip it. Unfortunately followed shortly by a lot of coughing and SDs.

By Tuesday (after 1 week), SDs had quit, still taking Tylenol, but not needing as much. Could easily do full liquid swallows. Down a total of 15 pounds. And Wednesday, the constipation hit. Once again I had failed to take good advice from one of the nurses to take stool softeners. Did and better after a couple days. Not fun. Generally better ever day and less than 2 weeks after surgery was able to play golf. Most pain came from eating solids. Would get this shooting pain in my left jaw that would go to just under left eye, but it would only hurt for a bit then diminish. By fourth week, jaw pain mostly gone, very slight numbness at tip of tongue, left ear and neck still numb but not as much, and can feel something at the back of my throat that may be scar tissue? Did have a follow up exam 5 Jul and no problems. So would say 2 to 3 weeks ftime frame for general recovery is about right, At 5 weeks I feel like I am 90%. Still hard to swallow some foods and my left neck is a still bit weak and wonky. On to radiation & chemo.

This is a recap of prep for and the first day of Chemo & Radiation.

12 days prior to Day 1 met with the radiologist, the oncologist, speech pathologist about swallowing exercises, pharmacist nurse about the drugs and prescriptions, and did the radiation simulation. The simulation process went as described on the internet. Couple details include that there is a fitting for a mouth piece that your teeth go around and that sticks out through the mask to help align it. And the mask is draped wet over your head and the techs press it down while it forms.

Day 1 (Monday) started with a pre-IV blood test @ 6:10AM. 8:00AM checked into hematology. We were taken to a room to do the IV. Had the IV placed on the top of my hand. The IV started with two liters of hydration (an hour plus), 45 minutes of anti-nausea steroid fluid, and then the cisplatin (about ½ hour). Hydration was discussed at length to help prevent damage to kidneys. Nausea was a big subject with the nurse. We went over taking the anti-nausea steroid pills on days 2, 3, & 4. Two other anti-nausea pills were prescribed for use as needed. If one didn't work, try the other. The nurse also talked about some people having success with Enterade. We were done by 12:15.

Radiation was at 2:15. Went into a room with multiple dressing rooms. Traded my shirt for a gown top and locked up my wallet and keys. While waiting, a gentleman came and starting doing his prep. Turned out it was his last treatment day. (He had to finish on Monday because of Jul 4th holiday). He was being treated for the base of tongue and lymph nodes cancer. He said pain kicked in about 4th week but was manageable. Worse was loss of taste. And definately fatique. For him, NavDx started at 800, went to 900 at week two and went to 0. My pre-surgery NavDx was 32. This is apparently a worse prognosis. Not exactly sure why but since NavDx detects dead cancer cell, this may be due to cancer cells becoming more resistant and the immune system not destroying as many cancer cells as is normal.

So it was my turn and went in and asked to see the radiation map. Guy brought up a computer image, showed me a head image with green and white lines showing the main and lower level radiation areas. Said the computer figures out how optimize effect and minimize damage. I had to ask if I could wrap aluminum foil around my taste buds. I was denied. Onto the table, head strapped to the table with the mask. Some alignment adjustments and done in 10 minutes. One down, 29 to go.

4:15 was a hearing test to establish a baseline. The main takeaway was if you start getting tinnitus or noticeable hearing loss, let them know and they can adjust the chemo. (Normally this test is done before first chemo but had scheduling issue)

As of posting, only some very minor uneasy feeling, had some chocolate milk and was fine.

Second day of rad/chemo included a swallow test to check for possibility of aspiration and to establish a baseline. You basically sit in a xray machine while drinking barium laced chalky fluids of varying density including one round with a cookie. About 45 minutes later they go over the results. Good to go.

Again, radiation went quickly. Couple hours later, my neck skin felt a little stiff. Rubbed some miaderm on it and it was fine. And again some minor annoying nausea. 2 down.

Third day of Rad/Chem Therapy (RCP). Stomach kind of queasy with sour taste in mouth all day. Around noon, took a prescribed ondansetron tablet to help. It helped for a while. Had ginger ale as well. Rad treatment around 2pm. And ringing in the ears started around 4pm, still continuing. Worked on the prescibed swallow exercises. Overall 80 repetitions per day of 1) high pitched "eee", 2) tongue press against roof of mouth, 3) hard swallow, 4) jaw resistance. Did get a negative NavDx report today for a blood draw taken 15 days after surgery. Learned a NavDx blood draw is done as part of the every Monday blood work. Takes about 10 days after to get a result.

@paulrees
Thanks so much for taking the time to share your journey in detail. We thank you for your hard work. We read everything (Parts 1 - Part 6) and RCP (1st-3rd Day). We were humbled by your generosity in providing your experiences. My husband is reading, and we know all this information is helpful. Husband TORS surgery/Neck Dissection will be on 8/2. Then Radiation and Chemo depending on the pathology results. Thank you everyone on this wonderful, caring connect group. God bless us all.

Bless you dearly in your treatments. We (my husband) recently finished our 6.5 year week chemotherapy and daily radiation and NAV testing too.. no results yet definitely been over 10 days, but sure they will arrive soon. I'm so sorry about the ringing in your ears. We empathize deeply and wanted to share with you .. after painful ringing, we met with his oncologist physician who made the decision to reduce Cisplatin chemotherapy regime by 10%, which is apparently a negligible amount, but did reduce then stopped the ringing. I would assume it depends on malignancy and location of the tumor, but just wanted to provide that as an option to ask of your oncologist. God bless you in this journey.

Thank you for your thoughts. And Yay! treatments done! Thanks for info about reducing cisplatin. Can you let me know how the NavDx test went?

Of course, of course we love to share good news and positive news. Yes, we are anxiously awaiting the results. I will share them with you🤍 surely we will know this week. Sending well wishes and encouragement to you this week!

Radiation day 4 and 5 had a little more skin soreness. Mederma helped. Ringing was worse Friday but just about gone by Sunday. Queasy feeling mostly gone by Sun too.

Monday AM blood tests came back fine. Sitting in the IV chair now after talking with the PA. Plan is to keep cisplatin at same level and monitor ringing. Also to alternate taking the ondansetron and prochlorperazine together (the o one, 4 hours later the p one, 4 hours later the o one,) to stay ahead of the nausea.

Be careful of the ringing in the ear. If it gets worse and continues it can lead to some permanent hearing loss. Reducing the Cisplatin helped me with a reduction in ringing. Your Medical Oncologist should be able to advise accordingly.