One Year Anniversary - Diagnosis
Today, 25 April, marks the one year anniversary of receiving my cancer diagnosis. It’s been quite the 12 months since then, filled with both challenging times as well as many positive aspects. Of course, getting engaged and looking forward to a wedding are much happier prospects than a year ago when I was getting ready for treatment.
The good news is that treatment went according to plan, and the scans and blood tests show that I am free of cancer. I’m feeling much stronger than before. The recovery is continuing, so while I’m not all the way back to where I was previously, I can function normally and can enjoy food and wine again. In fact, in recent weeks, my ability to eat spicy foods has gotten significantly better and I can enjoy wine, too. I can eat most everything, though foods that require more saliva to bread down, e.g. breads/pastries, chips, drier meats, cakes, etc., require more liquid assist. Besides taste, my hearing is back to normal and my weight is at healthy levels (no longer in the Overweight category, according to BMI).
Once again, thank you to all of you. Your support and encouragement have meant a lot, and I’m sure the treatment and recovery has benefitted from it. Aiday, of course, deserves special recognition. She’s been with me every step of the way, and she’s made everything better.
Aiday and I are looking forward to enjoying the summer this year - being outside, biking, paddle boarding, grilling on the deck, etc. - all of which were hard to do last year. Plus planning a wedding and honeymoon…
I’ll recap some of the key milestones and then provide some pictures of the impact and side effects of the treatments. It’s more of a reminder of what I went through, so feel free to skip. These timeline dates are imprinted into my memory, so I can recall most of these unaided.
5 April 2018: visit to first ENT doctor, who noticed an abnormal growth, which prevented the ear fluid from draining normally. I wasn’t in pain nor did I have any energy loss or balance issues - the main symptom was the hearing issue
23 April: visit to Dr. Tan, who biopsied the growth
25 April: call from Dr. Tan to provide the nasopharyngeal cancer diagnosis
May: tests to determine staging and treatment plan. This included CT, MRI and PET scans. I had stage 2 cancer, so it was caught before the cancer spread beyond my head
24 May: port placed by interventional radiology to provide direct access for drugs to get to my veins and bloodstream
29 May: start concurrent chemotherapy and radiation treatments. Plan is for 35 radiation sessions (7 weeks) and a weekly chemotherapy (Cisplatin) session at Northwestern Medicine
Week 1: feeling normal. Started at around 180 lbs
Week 2: mostly normal, though energy depleted
Week 3: energy depleted and lack of motivation. Hypersensitivity to spice started. Start losing weight, down to 174 lbs
Week 4: Harder to eat solid foods and harder to swallow. Mouth developed sores and thrush. Dry mouth more of an issue. Down to 170 lbs
Week 5: Really starting to feel impact. Had to take 6 Rx medications a day to manage side effects. Lack of appetite. Ringing in ears got worse. Down to 167 lbs
Week 6: Mouth getting drier (both a lack of saliva and thick, frothy saliva) and no appetite. No chemo given due to ringing in ears. Skin on neck burned radiation treatments. Started taking an opioid painkiller (Norco). Weight to to 161 lbs
Week 7: Similar to week 6 - with lack of saliva, low energy, no appetite. No chemo due to depressed blood count below threshold limits. Hard to talk. Woke up throughout the night. Constipation issues. Weight steady at 160 lbs
17 July: complete treatment program. Last radiation session. Rang the gong to signal end of treatment
19 July: hearing test. Confirmed that I had pressure in both ears
31 July: blood test for Epstein-Barr virus (EBV) came back undetected. Early confirmation that the treatment worked
Late July to early-August: nadir of the treatment cycle (see below). I was able to stop taking Norco by the time mid-August
14 August: begin Phase II treatment, which called for three 4-week chemotherapy rounds. The chemo was a Carboplatin in the hospital and then a 96 hour 5-FU infusion with a pump. I had hoped to be randomized into a “monitoring-only” group as part of a study, but that did not happen
24 September: lowest weight
12 October: last chemo infusion. Low blood counts meant that I delayed treatment once
16 October: finish the last of the 5-FU treatments
30 October: start acupuncture treatments. This is not part of the Northwestern Medicine plan, but I figured it could only help with recovery. Start to eat foods that aren’t soft & mushy
29 November: follow up CT and MRI scans
4-5 December: follow up appointments with Drs. Mittal and Agulnik. My oncologists confirmed that the treatment plan worked and the growth is completely gone
12 December: start lymphedema massage to reduce the swelling in my neck. I had three sessions with the CLT
19 December: port removed. I have a 2” scar that will remain
20 December: appointment at Shirley Ryan Rehabilitation Lab to manage longer-term side effects, e.g. lymphedema, trismus
Early January: able to start to eat a little bit of spice and drink some low alcohol wine. Still had ringing in ears
February: spice tolerance increasing and can start to drink wines. Both are variable, as some days are better than others. Ringing in ears getting better
There were two low points throughout the treatment - these where when I was in the most pain, lacked energy, and had the least ability to eat. The first period started during the last week of treatment and lasted through the 2 weeks following the end of treatment. The treatments had taken their toll and I was not started to recover. During this period, my mouth was so painful that I couldn’t even drink water and had to get the minimum 2L of liquid delivered through my port and a bag. My only “food” was shakes of Ensure Plus or Boost VHC + Benecalorie + whole milk. I needed painkillers, numbing mouth rinses, and prescription oral gels just to get those shakes down.
The second low point came after the first 5-FU infusion in the second phase. Before I had gotten the treatment, I had 4 weeks to recover from the last radiation and I was feeling better about eating. I could eat tomatoes and even some meat, which was a big improvement from the liquid diet. However, the 5-FU drug had a severe impact on my mouth. My lips cracked, I got mouth, throat and tongue sores, and it became painful to eat and drink water. Even with the reduced drug strength for the second 5-FU infusion, it had a similar, though not as severe impact. It was during this period that my weight dropped to 149lbs, down 18% from before I started treatment.
Now (2019) that the worst is behind me, I figured to share some photos throughout the journey. Most of these are ones I decided not to post while I was going through treatment. Feel free to skip these, particularly as some of these aren’t so pleasant. Even though I feel fortunate in how well I’ve gone through treatment, it wasn’t always easy.
Hair loss: My hair loss was mostly in the back of my head, as a result of radiation (as opposed to chemotherapy). It started from around 3 weeks and continued throughout. Even now, my hair is growing back at a slower rate than normal, i.e. longer intervals between haircuts.
Weight Loss: the weight loss started in week 3 and accelerated in week 6. I went from 180 lbs to a low of 148 lbs. Currently, I’m 157-160 lbs, which is a good level. My waist size went down ~3”.
Mouth Issues: this was the most challenging aspect of the treatment. At various points, I experienced dry mouth (xerostomia), mouth sores (mucositis), thrush on my tongue (candida), cracked/dry/bloody lips, lack of saliva, thick/frothy saliva and general pain. This required a lot of medication to eat and manage the pain and discomfort. I didn’t lose taste, rather I got hypersensitive to acid and spice. The burns also made drinking alcohol and hot foods painful.
Skin Issues & lymphedema: my skin suffered from three distinct issues: a) radiation burns; b) reaction to dressing; and c) longer-term impact. The radiation burns were the first to take effect and were mostly confined to the sides of my neck. The allergy to the dressings (Tegederm and SorbaView) actually caused more pain and took longer than expected to heal. A few months after treatment, the post-radiation impact of lymphedema and reduced jaw mobility became apparent.
Again, congratulations and thank you for making it this far. Hopefully the pictures weren’t too disturbing or upsetting. I’m glad it’s all behind us now and we have much more fun, delicious and joyous events ahead.