Steven Blue: A Newsletter for Rhinectomy Patients, Family & Friends
Last Modified: June 9, 2010
This is the first newsletter designed to fill the a need for outreach of support for those who have had a rhinectomy whether recently or in the past. I envision this newsletter to be a forum for personal stories, advice, hope and caring support for those who have gone through such a surgery and for their family and friends too. While I hope the medical community would support (and take part in) and share this newsletter, this newsletter will be written about and for the patient, family and friends.
The following story is the path I took in my approach to treatment. YOU have to do what you feel is right, for you. My rhinectomy was performed last October. I had been going through basal cell cancer in & on my nose for about 7 years. The first basal cell lesion was on the right bridge of my nose and was frozen. The dermatologist proclaimed me "healed" and I went on my way. But the area never healed properly. The doctor retired and I had to find another dermatologist.
The next doctor took a biopsy but it showed nothing. She said it didn't "look right" and she would look at me in 3 months or so. Well, the area still didn't look right when I went back to her so she referred me to another doctor who specialized in difficult skin cases and he did a series of punch biopsies. They all came back showing signs of basal cell skin cancer. This doctor was a wonderful surgeon. He used the Mohs technique. The cancer had spread deep into my nose-and was aggressive enough where he had to do a skin flap. The end result was good and the margins were "clear."
About 6 months later, another cancer appeared on the outside of my nose, just to the side of the surgery area. That spot was removed with Mohs and everything seemed to go along right nostril. I went to several doctors, including a cancer tumor board where, even though rhinectomy was mentioned, it was decided that radiation was best.
So, I had 30+-treatments of radiation. Again, everything seemed "fine" until November of '97 when another spot appeared inside my left nostril. I had it biopsied in March of '98. I went before another tumor board where the doctors recommended a rhinectomy. I was rather horrified to find out what that was. So, I proceeded to do a "search" to find other treatments to save my nose. I went to several other notable cancer hospitals, including one back east when I ended-up back in California. Again, rhinectomy was said to be my best option considering how aggressive the cancer had been. I figure since four well-respected doctors and surgeons had recommended rhinectomy ("go for the cure" I was advised) I chose this approach.
(I DID also go to a Chinese herbal/acupuncture clinic for a few treatments, too). It was also during this time I had seen a program on PBS's showing a doctor near me(from the Maxillofacial department) who specialized in prostheses using surgically implanted posts for the prosthesis to attach to and looking VERY realistic. Well, in October I had the rhinectomy...the surgeon got the entire tumor, margins were clear, etc. The surgeon and the doctor featured in the TV program as well as the other fine doctors from the maxillofacial department worked together during surgery to give me the best possible "site" for the new prosthesis. A skin graft was incorporated as part of the surgery.
So, a new phase of my life began. I now have several temporary prostheses (my family and friends say they look "great"). I am awaiting word on when my next surgery will be to implant the posts. I have been assured this next surgery is NOTHING compared to what the rhinectomy was like.
Since the surgery in October, my healing has gone very well. I did have a skin graft and the graft site is doing well and has started to show signs of normal skin color returning---having gone through a skin graft a few years ago, I know this can take months-and, man, can it itch! (I use a special lotion on the skin graft site). A few weeks after surgery I got what I call the "cold of the decade." The cold lasted for a long time-longer than any cold has ever lasted and when you don't have a nose; it's rather messy. As I tell friends, the Q-tip and I have become best friends! Then, 2 weeks ago I got a sinus infection thanks to our local Santa Ana winds we get here in the Los Angeles/Orange County area. I am still bothered by that. I have been on an antibiotic, sinus pills, cold pills, cough syrup, and herbal remedies. NOTHING has gotten rid of the constant sinus draining. (It draining has lessened but hasn't gone away entirely). Sometimes I feel it's the moist air from the nasal cavity making me feel like my nose is running.... but this really does seem to be sinus-related. Also, during the cold, my left ear blocked on me. I can partially hear through it-but it feels like I have water or air pressure in it and I can't get the ear to open/unplug.
In spite of all this I still have kept my sense of humor-and have created many jokes about this so I can keep laughing.... it's better than crying, or feeling sorry for myself. I refuse to play the role of the victim. My family and friends know they can laugh with me. Also, I have to admit I have a strong spiritual foundation-my ministers at church have been incredible (one minister was even there with me at the hospital on the day of the surgery-he "prayed me in" and when I was in my room after surgery, he was still there to offer his spiritual support--and for that, I shall always be grateful. I am also grateful for my best friend who was there at the hospital, too, during all this). While I wouldn't wish this condition on anyone, I have to give "thanks" for every day I am alive. I am also thankful for the health I DO have, the team of doctors I have been blessed with and last, but definitely not least, the incredibly strong support of love and caring from my family and friends. I know there is a lesson to gain from everything I have been through.
As I looked at myself in the mirror a couple of weeks after surgery, I looked myself straight in the eyes and said "I still love you, even without your nose." (That's how I feel about me, even after surgery). I had a very "thankful" Thanksgiving this past November! And I also know there is knowledge, insight, and support to give to others and to receive from others.
My best to you!
Note from the Author: I would like to include YOUR stories, thoughts, ideas, questions, etc., in a more structured newsletter format. I hope this can be the start of a support structure that is needed, has useful information and shows caring support for others going through this.
To get on the mailing list or to send in your comments, stories, etc., you can reach me at:
375 Redondo Ave #139
Long Beach, CA 90814