After nearly 7 years of battling cancer, I'm finally doing more than reading this website. I never thought I'd actually contribute any self-introduction, but here I am.

And why did I think I wouldn't need a "support group" or forum? At 32 with no risk factors, I was diagnosed with a "very rare, very curable" minor salivary gland tumor ("low-grade adenocarcinoma") that was supposed to be easily removed and never rear its ugly head again. That was spring of 1999. Summer of 2003, while my husband was deployed overseas, it metastasized to lymph glands for which I had a neck resection. This cancer is reputedly non-responsive to chemotherapy and radiation so those were seen as last resort means of treatment in my case.

In October, the tumor recurred orally again, this time apparently changing in growth rate and grade. It had spread to sinus cavity, masticular muscle, soft and hard palate, mandible bone, and thankfully came short of breaching the cerebral skull wall. After my November surgery to remove the tumor, (and subsequently bone and all the teeth on the lower right side and front due to lack of re-circulation caused by the eight hours of trauma during the first surgery) I

Good Lord, Ruth! We will have to take a deep breath to think about how to respond to your experience. Since I am a caregiver rather than a patient, I can't address the medical issues. But I can suggest to you that your Mom's issues need to be her own[hard as that is- she is caught in the "parents aren't supposed to outlive their children" mode and is scared to death at what has happened to you] and your husband needs a whole lot of support from whoever else is available-family and maybe us-but you need to conserve your energy to fight for yourself and you can't support him all the time. I hope someone else is there to give your kids a million hugs a day and let them know they are gonna be o.k. while you are waging war against this disease. WoW, you sound like one really tough broad [it takes one to know one]And I think you will get some help here. Amy

Ruth, I echo everything Amy said, and add that radiation will be fighting the beast in a good way. You might ask again about chemo because the prevailing view now is that the combination renders the ratiation more effective. Either or both will be tough, but we have lots of tips and tricks to help you through.

Let us know how you are doing. If we don't have exactly the same situation, we can support you as much as you need. There is a whole host of patients, caregivers, and survivors here to grab the rope and pull you though!

Thank you, Amy and Joanna! I sure appreciate your responses. Joanna, I'm curious about your chemo suggestion. While I want to use all the ammunition at my disposal, I've read some of the studies and there is no existing protocol that I can find in regard to this cancer. Either there was no response or negative response, but truthfully, there hasn't been much to go on with this. It was only first named in the past 20 years or less and instead of hundreds or thousands in case studies, there are only double digits. But I'm glad you mentioned it so I can ask the radiation therapist on Thursday.

As to my children and hugs...we have quite a bit of that going on! My Mom is usually the caregiver though it means she and Dad virtually move in from their home out of state. I'm fairly self-sufficient with my own care now, but when she is here she keeps the house clean, the family fed, and the laundry done. We are part of a terrific church that has been extremely supportive with providing meals, housework (even remodeling work and repairs), and things I wouldn't have even thought of but they have and they've been very loving and generous.

My two sisters each took leaves of absence from their jobs out of state to care for me 24/7 for the three weeks I was in the hospital. They are my angels of mercy!

I really do have great support...and now I have you, who can speak to the mysteries I stumble into on this journey. The one thing I've been missing is somebody who can remotely identify! Thanks, Ruth

Oh, Ruth! What a privilege to 'know' someone like you! Your plate is more than full, but your faith and your family will pull you through all of this.

I have to agree with the chemo suggestion. While it will be radiation that helps the most, our doctors gently 'pushed' the chemo with the idea that it could be effective in killing any cells that may have escaped from the local area.

We'll never know if that happened, but at this point, Tom is doing fine and enjoying clear scans.

I think I'd have to say chemo 'can't hurt' in this situation.
We will add you and your family to our prayer list. Tell your mom about this board - it might help her a lot!
Nicki

Ruth: You are a tough cookie...Very inspirational..
Darrell

Hi Ruth,
It sounds like you had a pretty extensive surgery, as did I. I also had radiation but no chemo. My doctors explanation for no chemo was that my tumor was very contained to my jaw and that the one lymphnode that was affected was at the top of that lymphnode chain, with no evidence that it had gone below that one lymphnode. In other words, they felt confident that no cancer cells had escaped. That will remain to be seen I guess.
My youngest girls were 9,11 and 12 when I was going through radiation and it was tough on them. In particular on the 11 year old. The radiation is going to make you very sick, you will take longer to recover from this treatment then from your surgery. My advice would be to let your kids know this upfront, show them online what you will be doing for treatments. They're used to the PEG tube already so that's good. I even took my kids to the radiation center for my last treatment for my bell ringing ceremony. Seeing it all and knowing what is happening will take away some of their fears.
It sounds like you have an excellent attitude and a wonderful support group, I think you'll get through this just fine.
Minnie

Ruth, You are not alone. Your treatment experience will be uniquely yours. No two are the same. Prepare yourself for difficult times and symptoms. Have salivary agents at the ready, and pain meds. Have ways of treating radiation burned skin - I had a bunch of burn problems, many do not. Taking your kids to the rad center might be a good idea, but don't risk 'freaking' them with the mask, or the smells or the big machinery.

Get your husband onto this website. Get others in your support group (sisters??) to read things here. Information is POWER. You and they will want it. Ask specific questions. Someone here will try to respond to it - probably many. There are not stupid questions about cancer or treatment. Its complicated, its difficult, it can be very painful, it is extremely dehydrating and generally no fun. BUT, the beast can be beaten.

Get others involved. Get others educated. Prepare yourself for battle. Fight hard. We are with you. Be strong. Tom

I had to chime in here. We took our 14 yr. old grandson, who is devoted to John, to one of the rad txs. last summer. I has asked Alex if he wanted to see what John was dealing with at the treatments-he already knew about the mask- I was not sure if the technicians would let him watch, but they put him in the room with them and explained the whole procedure as John was radiated. Alex felt that he was more a part of what was going on after that. I guess it depends on the personality of your child. Hang in there, Ruth. Amy

Amy, I agree, it depends on the nature and personality of the child concerning taking them to the radiation center. It also depends on the patient. I took my children but did not have them come in during treatment nor see me in the mask. In fact, when the tech brought my mask out, to ask if I wanted to keep it, my always in tune with his wife husband whisked it from the techs hands and dumped it in a trashcan, out of the sight of our kids. I had strong feelings about what I did let my girls witness. I didn't want my girls to see me in what I considered a helpless state, but that doesn't mean it shouldn't be done. I have always been proclaimed the strongest woman alive by my husband and kids.............I had a rep to protect!! I do believe that any way a child can be made to feel a part of it is important.

Knowing just a smidge about child evelopment I have to say the age of the child needs to be considered too. A 14 year old, a reasonably mature one anyway, has the capacity to understand that soemthing can be difficult, even scary, to get through but necessary for survival. They can understand the abstraction of courage when they see the reality of radation. I think giving your grandson a chance to see his grandfather's courage was a wonderful thing to do, Amy.

This is not necessarilly so for younger pre-adolescent children who are more likely to simply be oevrwhelmed by the frighteningness of things like the mask and the machinery.

I admire enyone getting through this with children--especially young children. I can see how they give you great motivation to survive but it has to be hard to keep their needs front and center as you go through treatment.

Nelie

Wow! You all are so great to give this wise input! My husband and I both have been very interested to read and discuss your insights. We homeschool our boys and so we are both very connected to what their emotional make-up has been through this process. Since I have been fighting this "monster" since they were just 3 and 2 (my youngest had his second birthday the day before my first surgery 6 1/2 years ago) they have grown up with a more heightened awareness of this illness. In their younger days we obviously had to protect them from what they couldn't understand. This time we knew they'd be exposed to more but also mature enough to handle more. We were very honest with them about the surgery and how my appearance and abilities might change because we believed that they are more fearful and imaginative of what they don't know. Isn't that what this is about? Knowledge is power...and we extended that to our children as well, on their level and with their unique sensibilities in mind. We also allowed them to guide us into what they'd be able to handle by listening to their questions and not pushing them into anything they weren't ready for. I could go on for a lengthy discussion of how that all played out during my 3 weeks in the hospital and beyond but...

Now for my other HUGE thank you to you all and this website. Brian Hill, I'm convinced I owe you big time for having the courage in the beginning to share your life and your expertise and to open this door for us to all walk through together. My husband and I met with the radiation oncologist yesterday and because of the reading we had done here, we were able to understand and ask appropriate questions and, I believe, make some knowlegable decisions. I LOVE the doctor. I (we) felt very confident about his abilities and his manner in explaining things, his interest in my case, and his concern for honoring our input and decisions as well. I could go to a hospital much closer to my home to receive therapy but when he sensed that was not my concern he informed us that his first option was for me to drive the distance so he could allow me to benefit from IMRT. Now, if it weren't for you all, I wouldn't have even known what IMRT was so we wanted to whoop and holler when he encouraged us to pursue that. He's also being very meticulous in examining the scans and taking his own post-op ones and discussing me with my surgeon (again) so he is certain not to "kill butterflies with a rifle" but also so we can end this thing and extend my days inasmuch as God allows. I go back for the newest scan and fitting next Wednesday.

I also visited my old "stomping grounds" a couple levels up at the hospital and saw some of my favorite nurses. My surgeon has the BEST nurse practioner alive. I've been close to her since my second resection and she has walked through fire with me. She was there yesterday as well and immediately offered to meet me next week and personally give my boys a tour and education if they came with me. Things seem to be working themselves out!

Minnie, the chemo explanation your doc gave you is identical to ours. Mine has no hx of distant mets and there are no studies on the salivary gland adenocarcinoma to support its use. He was not opposed to it and in fact encouraged us to pursue inquiries of Sloan-Kettering and M.D. Anderson (or even Duke since it's closer). He had already done his homework and was unable to find anyone who know more than he did. I'm very blessed that I don't have any distant mets and that this thing seems intent on staying in the same place. We'd be at a different ball-park altogether if that were the case. It's still considered "low-grade" so even though my scars don't concur, we left the hospital feeling more hopeful about the prospects.

I don't know why I can't keep these short! But I know I couldn't wait to tell you all what we found out. Thanks for the prayers, advice, and encouragement. Please don't stop!

Ruth

Ruth, no need to "keep these short". We all learn so much from each other when we share. I am really interested in this discussion of children, cancer and how to handle the difficult questions. When John was 1st diagnosed, our grandson[who has pretty much lived with us since he was 6] looked me in the eye and asked "Is this a life threatening disease?" It really threw me for a loop because I had not adjusted to the diagnosis yet. I mumbled the usual responses, "it's serious, good Doctors, we think everything will be O.K., etc." But Alex was here when John came home with the staples in his neck, the peg, the swollen face, etc. and has watched his granddad fight this since April. We can tell that he is very agitated over this new occurence and I am feeling so bad for him. It isn't helping that Alex's Dad[John's son] is also freaking out. I'm just crossing my fingers and hoping I say the right thing at the right time to Alex during this next round. Amy

Amy, our boys responded as differently from one another as their personalities are anyway--and each child will be different. My youngest (8) was very apprehensive of the hospital and was fearful to come near me but continuously (from a distance) told me he loved me and wanted me home--and he is my most affectionate one. My oldest (10 now but still 9 last fall) made a strong effort to "be brave" and climbed in my hospital bed with me (after he was assured he wouldn't hurt that side of me) and held my hand while we watched T.V.

Two years ago, my surgery wasn't as disfiguring but they did not come to the hospital because I wanted to protect them at their still-young ages. My youngest had a cyst on his neck removed when he was only 3 (which may explain the "hospital trauma") and his stitches didn't heal smoothly so we joked that "Mommy has a zipper-neck just like Josiah" and he was okay with that.

We laugh a lot with them and we hug and show/tell our love and affection often. I don't think the reassurance from that stops with children--we all need it--but it's a definite part of their acceptance of tragedy.

Alex sounds like a very aware child to ask a question like that. I think eye to eye focus and an honest and simple discussion of the situation (with descriptions of what things will look like at different stages) might alleviate his fears.

I've come to believe, after observing my own and others' children's reactions to my condition, that we don't give enough credit to children's ability to comprehend. But I want to emphasize that this should be approached with much caution due to a child's vivid imagination and the need for appropriate age/maturity adaptation. We let our boys know that any question they had was fine, they wouldn't hurt our feelings, and we let them know that we were the best source for their answers--not their friend or some other adult. We didn't want well-meaning but/or ignorant people misinforming them.

Just like with us, they fear what they don't know and understand. If we help them understand they're less likely to fear and often more likely to want to be part of the solution. I hope that's on the right track to helping!

Ruth

Am thinking about the "what things will look like" part of your post. John is apt to come home with a trach [Alex is familiar with the peg] and I may try to find a picture of one for him before we leave. Thanks, Ruth for the discussion. Amy