It's crazy to think about how much we've gone through since 6/10/2025 when we found out about the tumor. It was a short and also very long 7 months. Now that Willie is done with chemo and it's been 2 months since his last treatment, and 4 months now since his esophogectomy surgery, he's on follow up visits and the journey to repair his paralyzed left vocal cord.
This past Thursday he did his labs and met with the oncologist, Dr. Naquin (knock-in). The labs were all normal. Next visit and labs is in 3 months, May. And in July (six-month follow up) is a scan. After that regular follow ups first every three months, then every six months, then once a year for the next 5 years. It's a journey and he still has a long road to recovery with his "new normal".
He meets with the surgeon next week on the 26th. That will probably be the last time he meets with him. There's nothing additional to add there. He still has his port in which Dr. Naquin said can be in for 2 years just in case it needs to be accessed as long as it's healthy and working fine. It will need regular flushing.
Next trip is over to UW Medical Center on 3/18 for a procedure to fix the vocal cord so that he has the potential of talking normally and no longer aspirating on liquids and food. This is bad and causes a huge cough. It also is bad because he tends to eat and drink even less as a result of this side effect. Lastly, it's bad because it could go in his lungs and cause pneumonia. So far the bad cough has kept it from doing that.
Here is information on that procedure in reply to my call last week to UW:
My name is Dr. Giliberto, I am 1 of Dr. Dhingra's partners, and I happened to have more OR time than she does so we are going to collaborate on your case. My nurse took down some of your questions, unfortunately we are very tight on clinic visits so a telemedicine will be difficult before 18 March unless someone cancels. Let me answer these questions and you can see if you feel like you still need a telemedicine to discuss. Otherwise Dr. Dhingra can give you a call when she returns from being out next week.
What happens during the procedure and how long will it take?
-The procedure itself is only about 5 minutes, but there is 20 minutes going to sleep safely and then 20 to 30 minutes waking up. You also need to be there 2 hours ahead of time and often need to recover for about an hour and a half in the recovery unit. Typically arrival to discharge is about 4-1/2 hours
Should they get a hotel room or drive back to Wenatchee the same day?
-Most patients feel comfortable to travel back home to Wenatchee and even further into Eastern Washington like Spokane. Especially if you have someone driving you and you feel comfortable driving with the weather conditions, there should not be any medical reasons for why you should need to stay the night in Seattle
Is the procedure supposed to provide permanent relief or temporary?
- It is a temporary procedure but we can make a permanent. There is a chance of recovery so we will do the temporary and wait for potential recovery and then plan for permanent once it is been longer than a year symptoms
How likely (percentage) is it that the procedure will work?
-I typically quote people 85% better 5-15% not difference, and less than 2 % worse.
What are the possible complications of the procedure?
-As stated above the most common complication is making the voice actually sound worse. There is also a 2% risk to damage to lips teeth and gums. We make mouthguard's that are very protective of the teeth but they still can be injured. There are also the complications of general anesthesia for which the general anesthesia doctors will talk to you. There are some issues with nausea, lightheadedness after the procedure. And there are exceedingly rare complications from anesthesia including respiratory, and cardiac arrest. Overall the procedure is quite safe with less than 5% overall complication rate.
Overall, we are optimistic that he is slowly improving and recovering. He is still very weak, tires easily, gets nauseated when eating, dizzy, shaky, maintaining weight which is about 35 pounds less than his normal but he isn't losing for the past few weeks. He is doing his best to eat and drink but has to take in very very very small portions at a time. He sleeps on an angle of 30 degrees propped up, can't bend over or the liquids leak out as he has no valve to hold them down anymore in the esophagus. The fact that he can't speak except with a very low rasp is hard for him and it also takes great effort to push out the words loud enough. He often has to repeat it making that even more of a challenge. People can't hear him. It has resulted in him not wanting to talk, make calls, or interact. That's not good. But again, overall, we are very optimistic for a positive recovery and good health in about a year from now. So much so, we even booked a vacation!!
We haven't been on vacation for over 2 years. So, this past weekend, we rebooked our vacation that we had to cancel last November. We are heading to Cook Islands! We will stop in Oahu for a couple nights and then fly over to Rarotonga and Aitutaki. We'll stay 3 nights on Aitutaki on the beautiful Ootu beach and then 4 nights in Rarotonga on Muri beach at the Little Polynesian Resort. This just so happens to also be our 45th wedding anniversary as we'll be there on July 3 and celebrate the 4th of July on Waikiki beach before flying home on the 5th. We're so excited and looking forward to a nice relaxing time on the beach enjoying such beautiful islands. It will be a much needed getaway for both of us.
I will keep writing this blog for awhile as a diary of events, photos, happenings, and health. We both are so grateful for doctors, cures, friends, family, love and support. We are glad to be on this side of the health journey and will continue follow ups for the next healthy 5 years +
The hotel pool in Cook Islands
Willie on his birthday 🎂 in January
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