Dempsey had surgery yesterday. The procedure was much more extensive than planned, but the outlook is good.
We are very glad we decided to let Dr. Chetan Gujrathi, the ENT surgeon, remove the tumor on Dempsey’s neck at the same time he performed the laryngoscopy and tonsillectomy. Once he was in, Gujrathi realized the tumor had grown a lot since the CAT scan a only week ago. He told me he doubts he’d have been able to get it all in just another week or two.
The tumor had broken through the capsule of the lymph node and was encroaching on all the structures of the neck. Dr. Gujrathi was able to peel it off (his description) the nerves, the jugular vein and the carotid artery, but it had grown into the muscle.
With no way to extricate the tumor from the muscle, the surgeon was forced to remove some muscle tissue. As a result, Dempsey has a big dent in the right side of his neck, to accompany what will probably be an impressive scar. But he’s alive. The tumor was on the verge of wrapping around bone.
Yesterday the surgeon expressed some concern that Dempsey might have lost some function of his right arm, and that his smile might be crooked. Today, however, Dempsey seems to have near full range-of-motion in that arm. His smile is as beautiful as ever.
Dr. Gujrathi was not able to identify the site of what Dempsey and I have taken to calling “the mystery tumor.” His immune system may have flushed it away. We may get more information when the pathology reports arrive in five days with the results of the biopsies taken during the procedure.
Dr. Gujrathi also said he believes with the addition of the radiation and chemo, the head and neck cancer will be gone permanently. He is very optimistic.
Some medical professionals prefer not to deal with patients and caregivers like me. I research extensively and take nothing at face value. I ask a million questions. I did my therapy training at the Medical Center in Houston with lots of doctors, and I have little tolerance for the medical arrogance one sometimes encounters.
That said, I am so grateful we came to this facility. Beyond the points I mentioned in an earlier post, Dr. Gujrathi rearranged his surgical schedule and drove across town, having already completed several other operations in the morning at another hospital, just so that we could save a few thousand dollars by staying within our insurance network. He was tired when he arrived, and he hadn’t eaten lunch, but he was gracious and focused on Dempsey.
Last night I stayed in the hospital room. Normally I would never have slept, because I would feel the need to advocate for him and walk to the nurses’ station cajoling and threatening them (politely) to give him his pain meds in a timely fashion. Here there were two nurses absolutely on top of it. He was able to rest, and so was I.
We also appreciate the diversity of the staff, all of them experts in their field.
We’re hoping to head home at the end of the week. We’ll come back in a couple of weeks for a post-surgical checkup and some more dental work. Then around the end of March or the beginning of April, we’ll move back here for the rest of his treatment.
Some aspects of being here have been challenging. It was hard for me to sit by myself yesterday during the surgery (although I was supported virtually by many loving family members and friends). I’m apprehensive bringing Dempsey back here to the hotel to care for him alone, dealing with drains and pain medication. I don’t have anyone to send out for things I may need. I know we’ll be fine, and I’ll figure it all out – but it’s not like being at home.
We came to Phoenix with two changes of clothes, expecting to stay three days. Today we’ve been here three weeks. We’re in the right place.
I don’t know you but your post showed up on my wall because some of my relatives in Texas clicked on your post. Please contact the medical social worker at the hospital for help. That is what they are there for. They offer a large network of support services. Someone should be able to come to the hotel to work with you and assist you with your long range needs. Good luck.
Thanks, Linda. We are getting a lot of support from the Patient Advocate department at the hospital. I think most of all, I miss having the people I love around me. It’s a trade-off, but a worthwhile one.
Dear Jillian,
I have just been reading through all your related blog posts. I had not read them all, so I appreciate you sharing your full story. In number one, you were quite right – plans can be lost, and life can change in the blink of an eye.
This most recent post-surgery post is filled with hope, and you will also soon be going home to be with your loved ones, which can’t help but have a positive effect on Dempsey’s healing, and on your own outlook.
I hope that these post-surgery days are providing peace that the tumour has gone, and that the doctor was so skilled in his job. And that you are learning to provide what Dempsey needs post-surgery.
You have been the strong advocate over the past couple of months – is that all it is? I hope that when you get home, you don’t crash, yourself, after being all on your own being Dempsey’s strength for these weeks . I know that your family and friends will hold you up and provide the love and support that you need.
I’m thinking of you both constantly – even though we have never physically met, but have been fast FB friends for a long time.
Sending love to you both and adding healing thoughts for Dempsey.
Ann
Thank you so much, Ann. I feel the same about you, and I hope one of these days we meet IRL. Yes, so much has happened since we got the diagnosis on January 10th. It’s been a whirlwind. I am realizing I must indeed concentrate on taking care of me. We have been focusing on having fun and enjoying ourselves as much as possible. The one thing we haven’t had is solitude, and we both require quite a lot of that. Now that we’re home, we’ll have the space and comfort to each get a little retreat. And I hope to sleep more!