I haven't posted in awhile because I was trying to give my mind a break while things were relatively stable.My husband had a good recovery from tx, a dental extraction was necessary, and 1 1/2 yrs. later, early-stage ORN.

I am not dealing with this well. I wish I had never read all the horror stories. He has been on antibiotic therapy several times and looks like debridement is in the future. How likely this will stall progression, I'm not optimistic. Has anyone had an extraction followed by ORN & not needed a resection? This has been more difficult for me than dealing with the cancer. The new normal did not take long to accept; this is devastating. I keep going over if only the wisdom tooth was removed pre tx. Our cancer center referred us to our general dentist for pre tx exam. If I had know the danger, I would have sought out someone experienced with oral cancer. I know, there is a debate about pulling healthy teeth, but I would feel better now if he had been checked by an expert.

In addition, we live 2 1/2 hours from NYC, Head, Neck & Thyroid Cancer Center, Mt. Sinai/Beth Israel. We have consulted with Dr. Buchbinder, oral surgeon. I am glad that we are established there, but trying to make plans
and get call-backs has been slow. It's not as if we can be fit in last minute for an appt. I'm worried about an emergency - fracture of the mandible. etc. Dr. Buchbinder is very calming. He does not go into dire predictions and says this could stabilize for "awhile". We have a wonderful local oral surgeon who is willing to help us in any way, except he wants any surgery referred to NYC and, I agree.

I am going to a dark place - will it be worth surviving cancer for my husband to now face this?

Lottie

Lottie, you are asking the question all survivors and caregivers ask, over and over, is all this worth it? I go through these thoughts periodically and today, my answer is hell no. I am so tired and worn out from being MacGuyver and a one legged man in a poop kicking contest. No matter how much effort I put into all this, I just get back to the same reality that I am only buying some time. I have no treatment options left and I don't have cancer. I now believe I will die cancer free, because of the treatment. It is tough to accept.

Yet, somehow, when I try to grasp the reality of how fragile life is right now for me, I can't. I think of those around me, my wife, my children, all those that have seen the crap this has done to me. Few of my friends even visit and I haven't had family visit for several years. I'm actually relieved, because I was really getting tired of them looking at my withering body with such sadness and tears.

So, we pull ourselves up, dust off and recharge in some way, to prepare for some unknown in the future. It's a crazy way to approach life, I know. No one can answer that question. I am now at a point I can stop what I'm doing and last maybe a month. Lately, I have been thinking that would be the best decision. Just the food cost alone while I have been trying to break this hypermetabolism blows my mind. I could almost buy a car with that amount.

Then, I find a way to recharge and the mind gets back in a place I'm used to. I hope you can find a way to recharge, to get respite from all you've been through. Try not to worry about so many possibilities and focus on the issue that is presented right now. That's all I can offer.

I hate what you guys are going through. I hate all this stuff.

I appreciate your honesty Uptown. You have done a remarkable job to keep going and at the same time helping all of us on this forum.

I was strong through dx, tx, & post-tx. issues. Now I am falling apart. It's the first time I wish I didn't know how this could end up. Usually, I want to prepare for worst case possibility and hope for better.

I'm sorry for your troubles, Lotte. I had major teeth issues since 2012 from radiation damage, but was unable to have them extracted due to inability to do HBOT with the persistent cancer I had, and was on long term antibiotics due to the abscesses, which are dangerous in themselves. I finally had all 29 teeth surgically extracted last November, at the same hospital as your husbands, but I have a different oral surgeon, and went in weekly for cleaning for months. By March, the 3rd molar socket still did not heal, and had early ORN with exposed bone, which required debridement, bone filed down, and a gum flap. After the surgery it still didn't heal, after weekly cleaning, but as of last week it looks like it is, otherwise another surgery may be necessary. I still have no teeth due to this, and getting any with Medicare is another issue, and not likely.

This is not my only issue, as I see about 8 specialists, and have at least one doctor visit, test or treatment every week, if not more, for the past 5.6 years. Everyone has their own way of coping, so what works for one may not another. I basically take one day at a time, go meal to meal, coffee cup to coffee cup, and have some type of calm for being cancer free for a year now after 7 recurrences, and don't look too often at all the possibilities, but do for some. I do educate myself to my own diseases/ailments, and what's available, what's new, and the next case scenario, but tend not to dwell on it. Somehow I feel more powerful knowing I'm still in charge, what I have done, and my doctors commend that, but I have my ups and downs like everyone, but like Uptown says, somehow I find a way to recharge, and start again.

They do have SPOHNC meeting at Beth Israel on the 3rd Thursday of every month from 2-4pm, on the 5th floor. The next one is on the 28th, if you're interested.

Paul: I know you have been through multiple recurrences and so many horrible side effects. Thank you for responding.

I don't think it's harder as a caregiver, but it is different. My husband is very optimistic by nature. I don't want him to get my contagion, but I can't deny my current feelings. I have successfully guided his recovery up to now - maybe it's time for him to take the lead....My mind is thinking too far out.

I'm also a caregiver for my disabled mother, if that's possible, who lives with me now in a small apartment, and somewhat was too when my brothers were living, who suffered strokes, and went to help every day off, holiday and vacation for almost 10 years when I worked, so I know what you mean, but I was able to go home, had my own life, and just started again the next week. That's one of the reasons I think contributed to cancer after wearing myself down. Maybe you need a break, a vacation, a hobby, go to exercise or some other class. I would live to get a puppy, but can't. Like you, with my mom, I can't escape, but going to the doctors by myself does, and with better weather opens up more possibilities. Also having an aide now helps her. Everyone has to make changes for themselves, it's difficult to change anyone, if at all, and can be frustrating.

Lottie,
you're not alone in this. I had pretty severe RA flare after my husband completed treatement, and am still dealing with mobility issues from it. I have ongoing stress, fear and anxiety issues that impact my daily life and my horseback riding. I'm kind of a mess. But, on the the other hand, my husband and I are both muddling along, and are still pretty active for our age. Exercise helps, meditation would help too if I would do it.
Best wishes - and try to take a walk in the spring sunshine if you can!
Maria

Quoting Paul for emphasis:
[quote]
Everyone has to make changes for themselves, it's difficult to change anyone, if at all, and can be frustrating. [/quote]
This is really important to realize. I do as much to help my husband as I can, but I can't make him be immortal. I can do my exercises, and other things to turn my mind away from dark thoughts. My excessive worry does not help my husband. Obvious to say, much harder to follow up on. However, realizing the problem is the first step to the solution.
Maria

I think as caregivers we sometimes do too much. Maybe it is to protect our loved ones from more pain and suffering. The patient, though, needs to be involved in whatever way they can. I only have two hands and can only be in one place at a time. I also need to remind myself that when things go wrong, it is not my fault. It is really hard to be a caregiver and know where to draw the line.

Maria & Gloria,
You both wrote about something that I relate to:

- I can't make him immortal (but I thought I could make it easier than this). I think I was more prepared for death from cancer than suffering through ORN. I know that sounds crazy.

- When things go wrong, it is not my fault (I do tend to blame myself). It has been my mission to keep him out of the hospital.

Finally heard back from NYC oral surgeon. Have appt this Monday. I will try to wait for his evaluation before worrying more.

Thank you all. It has helped me to write this and see that others understand and care.