Michelle, David's suggestion of the VHC is a great one. I went onto carnation's website and ordered it directly from them. I also got the lactose free chocolate. It has less calories, 375, but my husband loves it. Anything that he will use to supplement his calories is worth it. He has a feeding tube but that doesn't cut all but itself. Sue

Hey guys - thanks for the info on the Carnation. I will print that out for my resource folder. I like the idea of getting more calories in a fewer number of drinks, because from what I'm reading that is going to be very hard. Keep those tips coming and I've started searching the other posts for all that kind of information. The most imminent thing we have on the agenda is getting Dan fitted for his mask. I'm nervous about that.
Marina - I prayed for you last night and again this morning. I am so overwhelmed with David and Emily and I cannot begin to imagine you with 2 little ones and 1 on the way. And your family not nearby. Do you attend a church or take part in a mom's group? Great support is availble from those.
We are very blessed to have a local church, local friends and family (I am from this area originally) and I belong to a mom's group who are very supportive and are starting a meal/help calendar for us.
Regarding the kids, we have told Emily (the oldest) the facts in a matter of fact way and let her ask questions as she wants. She calls me everyday she's not here and usually has new questions. The summation of what we told her is that daddy has a big battle ahead and it's going to be tough and it will take all of us to help him get through it, but we will get through it. She's too old to be lied too and she has a close school friend with leukemia so she's not totally in the dark regarding cancer. And over the years she and I have talked about the fact that my mom died of cancer As far as David (almost 3) - we just tell him that daddy has a boo boo - which fits lately because of the surgery bandages, drains, wound, etc. And when daddy is sleeping we can't go jump on the bed because daddy needs to rest to make his boo boo better... I'll continue to keep his pediatrician apprised of the situation and I have the utmost confidende in her and if she advises me to do anything else I will probably take her suggestion. I also plan to talk to her about Emily and I want to go to the book store and see if I can find a self-help book on the issue. Regarding daycare - David has been attending a 2-year-old-kindergarten program on M/W/F from 8:30 - 12:30. He loves it and is learning alot and that has given me some "me" time and it's the time I have been doing my work for our business. I've explained to them what we are facing and they have beeen very supportive. I asked did they have a spot for me to increase him to 5 days if/as needed and to have him stay through the afternoon nap time (3:00) as needed and they said they would make room for him. Then today when I dropped him off the director pulled me to the side and said that I could bring him whenever I needed - all 5 days and have him stay late and that my tuition would not increase at all. I will continue to pay for only 3 days. I was very touched!! I am a little worried about summer, because Emily's mom works full-time so she stays with me everyday througout the summer. That means she will be here and see the really bad times 1st hand. But we will just get through the best we can and if we need to have her talk to a counselor her mom and I have alredy discusssed that we will do it.
Whew - that was long :-). Well Dan is having a really good day and David is safely at school for a few more hours so I am going to have some me (nap) time. I've not been sleeping and having nightmares and panic attacks at night - I think because I'm so "strong" through the day that it all catches up at night. So I am going to lie down with my sweet boxer dog Teddy and just chill for a little while.

Michelle,

Hope you were able to nap. Your nightmares will get better, I think. You are still in a state of shock and your body and mind are still trying to make sense of it all...kind of like post traumatic except it isn't "post" yet. I do think you will do better once things are in place and treatment starts...you will feel more in control.

I am grateful to God for a very strong psyche...never suffered from depression or anxiety problems...always able to handle the bad times fairly well. For some crazy reason, the day we saw Bill's RO for the first time, I started feeling very weird in the car and by the time we got to the office, I was in, what I think, was a major panic attack. I was sweating, couldn't catch my breath, felt dizzy and out of control....really....panicky! Hasn't happened before or since but that day, I had no control over what was happening to me. I was able to calm down before we saw the doc but, whew, it was out of nowhere. Several weeks after Bill started his treatment, I started thinking about how I felt in the beginning...like, "we aren't supposed to be here".."this happens to other people." By this time, Bill and I had become comfortable with the visits..meeting folks in the same boat...seeing familiar faces. It does get better, your mind somehow accepts the situation as normal and then you just get thru it.

So, you are smart to rest when you can and know that you are normal in your response to this very scary ordeal.

Deb

I'm the "mhupe" that "cookey" referred to. If you want to read about our journey I have a separate blog....it is at:

http://dangreivell.blogspot.com/

My kids are older than yours, although it was one heck of a summer. My husband is doing great now. He was diagnosed with stage 4 BOT cancer on May 17th. (My kids were 12 and 13 at the time) When he was diagnosed, he was feeling fabulous and his only symptom was a painless lymph node.

Treatment was a bear! But, the important thing is he is doing better now and life has slowly returned to normal. Feel free to pm or email any questions you might have.

Margaret - I stayed up really late last night and read your whole blog - thank you very much for sharing it with me. It really gives me insight into the days ahead and shows how much you dearly love your family! Now I'm curious how everyone is doing.

Michelle,

We are all doing fine, thanks for asking. It was a summer I will never forget and there are still lingering side effects, however they are minimal...and, day-by-day, week-by-week things get better.

The only advice I can give you is to rest up all you can (get sleeping pills if you can't sleep) and have your husband bulk up and eat the most fattening foods he can prior to radiation.

And, while internet research is good, it can also cause great anxiety. So, be careful not to go overboard. Initially, I got very caught up in the statistics. And, that's not anything I can control, yet I would lay awake at night thinking about them.

Other than seeing their dad get sick, from my kids perspective it was probably odd for them to see the pecking order change. It went from the household revolving around them to making their dad's needs the highest priority 100% of the time. Although, I don't think that they would have wanted it any other way.

We had much help from family and friends and when I needed more strength I prayed and I came here to the forum. There have been so many people who have touched my life from this forum in an amazing way.

My kids lives have settled back into their routine. Seeing their dad as sick as he was was not an issue for them. Early on they met Dan's medical team and they learned from them about the side effects and how sick he would likely get. Dan's team also told the kids they were doing what they had to do to "cure" their dad.

My kids never knew the statistics, and I thought that was a bold claim to make. However, when I would ask my kids if they were scared or concerned about their dad's well being, they said they were fine because of what the doctor's told them.

And, if you can believe this, through the treatments and recovery, both kids had swollen lymph nodes and cancer scares, so that just added on to the pile effect of a very dizzying and mind-boggling, sleepless summer and fall.

I had a business too, and am in the process of selling it and returning to the corporate world for a variety of reasons.

Good luck to you and yours, I'm here if you have any additional questions or concerns.

Michelle,

It is obvious to me after reading your several posts up to now that you have the "intestinal fortitude" to see this journey through to the end of the tunnel. It is refreshing to see how you are ready to face the challenge ahead. It is difficult for me to even throw out any tips or suggestions unless you have specific questions.

Bill D.

Good morning everyone - I want to start by saying continued thanks for all your support, patience, answers, well wishes, prayers, etc. I am much calmer today and we have had a very nice family weekend and Dan has felt wonderful - finally regaining strength and pain reduction from his surgeries. I have several questions for you guys - I have searched and read through numerous posts and haven't found exactly what I'm looking for. I apologize if it's there and you've already answered it :-), I just haven't gotten a chance to read everything yet. I have also put these on my list for the next doctor visit and some of them I realize now I should have asked at the first visit, but as you all know information/shock/stress overload is sometimes in effect at the docs' office and you think much more clear after the fact. Oh and sorry in advance if this is long.

Oh one comment I wanted to make regarding our treatment center, it is called Montgomery Cancer Center and it is a comprehensive care center... or at least I think so. They have everything there regarding treatment, labs, testing, scans, docs, NP's, counselors, dieticians, etc. They don't have private rooms for chemo, but have comofortable areas set up for patients and their families. If anyone is interested the website is: www.aollc.com. We have looked into clinical trials at other facilities and there are currently none that Dan fits the criteria for. We are only an hour away from UAB, one of the top medical schools in the country and we have talked with them and the standard care is the same here in Montgomery and all our docs were trained there and regularly consult with the docs there.

1) I noticed several of you did not have surgery before treatment. That was how our process started and my assumption that in our case with the location of the tumor being the parotid and the damage that would occur to the facial nerve (whether it turned out to be cacner or not) is what precipated our need for surgery. I guess that's not really a question I'm just trying to get it straight in my head and see if that "sounds correct".

2) I noticed several of you did not have ND at all and several had it later and several had it on one side then later on the other side... In our case the pre-op CT showed swelling in the nodes on the same side as the tumor so ENT said he had to get those nodes as well. He took the nodes from zone 2 & 3 and 3 of those nodes were vibily cancer and confirmed pathology. The RO told me they don't test every node they remove, but he would believe they would all be cacnerous. He also told us that he would be radiating Dan down to the collar bone because of node location. What I didn't ask at that time is why??? Does he suspect all the nodes are involved? Could that mean a second ND? And possibly some of this will be answered when we get our PET/CT Combo scan next week?

3) when RO described the radiation with the mask and how he would be targeting the areas, etc. I assumed IMRT. I asked him what type of radiation is this and he said "photon"??? After reading some posts I understand that once nodes are involved the only radiation you can do is traditional - so that wouldn't be IMRT, right? So does that mean it's not targeted? So why the need for the mask? Or maybe I can answer the mask question because he said that of course radiation is quite severe and if it was "off location" it could damage spinal cord, eyes, etc.

4) we meet with the chemo oncologist (I'll assume that's MO for medical oncologist?) on Tuesday and I have been reading lots of your posts regarding drugs and also looking out on the internet. I want to have enough understanding that when he recommends a specific course or treatment and drug I'll know what he means. If I understand correctly there are a few primary drugs used (cisplatin, carboplatin, oxaliplatin) and these in order of my list are strongest to weakest - in terms of fighting the cancer and side effects. I also think I understand that these are cytotoxics, which mean they don't help with metastases. Since we have metastates I'll assume we'll have a combo chemo? And in that case one of the other drugs would be Erbitux, taxol or paclitaxel??? I've also taken notes from your posts regarding other drugs administered the same time as the chemo drug - hydration, nasuea, amifostine... are there others?

5) I understand that chemo and rarely radiation can affect WBC count and that we have to be wary of infection. Can my husband not be around someone with something as minor as a cold - all the way to something like strep and beyond? And is that totally not around? Like will I have to send my toddler off to grandparents if he gets a runny nose? In theory I could try and keep them seperated, but since he is a toddler he of course won't understand why he can't see daddy when daddy is right here at home. And since we now have such a crazy schedule and worse to come with appointments I have to keep my son at his preschool and of course that's where the sick stuff comes from.

6) PEG and ports... Part of me would agree with RO that my husband has enough extra weight that we woould only put in a PEG if down the road we have a problem. But even if you have extra weight to "burn" you could still get severely dehydrated right? The one has nothing to do with the other, right? And the stronger you can be from nutrition will help the side efefcts, treatment effectiveness, etc. right? And I have read that having the PEG inserted mid-treatment is much worse than having it in pre-treatment. So why not just do it from a pro-active standpoint and if you don't need it great? Same thing with the port - since you're going to be getting stuck on a regular basis - why not take that one pain/irritation away from the get-go. I know in the shceme of things that an IV stick will be nothing compared to the other stuff, but it's maybe one of the few things we could control/prevent/help with. Another question is without the port do they leave the IV in your hand and tape it when you go home - then they can use it again the next day? My husband works with his hands alot (of course I realize he may not feel like that once this begins, but what if he hs a good day), and we have a very rambunctios curious son - so I'm wondering if that could be a problem.

7)The mask fitting will be next week - how bad is it? Is there anything I should tell Dan to have him prepared? To my knowledge and his too - he's not claustophobic, but I nkow sometimes you don't even know you are mildly claustrophobic until put in a situation like that.

8) I've been trying to put together a little regime or list of things for Dan to start doing now so we can be pro-active and try as best we can to have him ready to handle radiation. I've picked up post of these tips from you guys. Here's a few of the things I've seen:
*multi-vitamin (which RO also recommended)
*jaw & swallowing exercises (RO's nurse gave us a sheet); what is therabite?
*salagen med (since parotid removed RO said we would have real issue with saliva)- supposed to start it 3 days prior to radiation. RO said severe side effects week one then all fine. I've read in some posts that at humid times those of you that take it have more trouble - we live in an extremely humid environment...
*dental care, but I'll cover that in the next section because I have several questions
*should I buy a humidifier?
*should I ask for a prescription of Diflucan for him to go ahead and start taking?
*what else????? and am I just having wishful thinking or will this stuff make his road ahead easier?

9) Regarding dental issues - we saw our dentist and he said Dan has one tooth to be extracted and that he wanted to do one more cleaning and he gave us: Gel-Kam toothpaste by Colgate and Control RX toothpaste by OMNII. He said to start with the Gel-Kam and then go to the second. Any feedback/input here? Dan has started using this. The dentist also gave us PerioMed - mouthwash?? Is this for now - tooth strengthening or will this help with future mouthsores, etc.? The oral surgeon gave us Colgate PerioGard and I have the same question re: that. And if these are fluoride only - could you guys continue using them as your mouth got bad? And what is magic mouthwash I keep hearing about? Another question on dental is the tooth that Dan had to have extracted last week was abscessed to the bone - the bizarre thing was he had no idea/no symptoms (evidently drainage was to the bone and not building up - pressure/pain). It was found in the panoramic x-ray. When oral surgeon removed it he said pus shot out and it was pretty infected. He administered IV antibiotics that day and sent us home with oral srcip. He told me he doesn't think the extraction site will be healed by the start of radiation, but when he discussed this with our RO - RO said he couldn't wait - he needed to start radiation ASAP. Has anyone had an experience like that? Will it just be one of those "add insult to injury" kind of things in Dan's mouth?

10) Our treatment plan is progressing along, but we have not had our PET/CT Combo scan yet. RO told scheduler ASAP and she reports she is getting required pre-certification from Blue Cross. (the RO order was Wed). On Monday I'll start by calling the insurance company and I guess it's time for the "claws" to come out, because we need this info. Anyway - if the scan is not good and shows the cancer to be somewhere else I wonder if that will dramatically change our treatment plan???

11) I'm trying to get a "feel" for how much / if any work Dan will be able to do during this process and the first few months after treatment. I've read that some of you were able to continue working. Was that working from home, driving to work, was it office work??? We own a business of apartments and homes that we rent out (73 units), in a lower income section of town. Dan's typical day is hardware store for supplies, deliver to employees at whichever property they are working on that day, sometimes help with the particular project, knock on doors for collections, show apaprtments, sign leases. In his spare time he is welding, woodworking, building, etc. Throughout this he is constantly on the phone - hours per day because his cell phone is the business line. The only desk-work is lease signing and the only sit-down time is in his truck as he runs from one place to another. I don't believe he'll be able to continue and since this is our business we obviously depend on it for our livelihood and want to have some plans in place for when he's down. My hope is that worst case I could drive him to the property and he could spend an hour or so "checking on things" and knocking on doors for collections... Am I fooling myself? He thinks he'll be able to do MUCH more than I am thinking - is he fooling himself?

12) I am still searching for someone who has this particular type of cancer... Is anybody out there?

Again I'm sorry if this is so long and if there is "posting protocol or etiquette" related to this, please share becaue I'm really new to this type of thing. Or if this wasn't the right section, etc.

For those of you with answeres/opinions/feedback/comments/etc. if you'll just put the item/question # that you are responding to in your post I think it will make things easier to understand and follow.

THANKS!!!!!!!!!!

Hi, Michelle,

I can imagine how overwhelmed you must feel and some of your treatment is undefined at this point (until the scans) so it is even difficult to get a good sense of what you and Dan will be going through. My husband's treatment/diagnosis was different but I can respond to one or two things based on our experience and the experience of many on this board. 6) peg tube- we got it prior to treatment and were very glad we did so. Not only does it provide basic nutrition but hydration. We put lots of extra water and liquids in the tube and my husband never had to be treated for dehydration. One way I look at it is that the tube allows you to get the liquid and nutrition you need and if you are able to eat throughout treatment- you can eat things that sound good and that you can get down (and not worry about calories) as what you can eat by mouth is unlikely to provide all of the nutrition you need. 8) we got the therabyte but my husband had trismus when he began treatment (could not fully open mouth). It is very quick and easy to use. We waited to get scripts such as diflucan until he needed it (right away in his case due to the types of chemo he was given during induction chemo). I know that there were times that the last thing I wanted to do was to wait for a script and I had difficulty getting some scripts filled right away at regular pharmacies (no problems at all at the cancer center pharmacy) so you may want to do some in advance. I think that the most important and helpful thing I can suggest to you given that you have young children and a business, is that you need to ask everyone who offers to help to actually do something. People really want to help and they need to help you in ways that you may not be used to getting help. My daughter is older than your children but I was working full-time and needed to take over many of the things that my husband had done. He had lots of side effects from treatment and for many weeks could do very little for himself. Lots of friends brought meals (focusing on things my husband could eat) and some friends drove him to radiation and chemo. Other friends picked up prescriptions and drug store items. I needed all of the help I could get and yet I could barely get through the day for two months in terms of energy. Another thing that helped was to literally keep a calendar of what we had to do on what days but then to just put one foot in front of the other and take one day at a time and expect the unexpected.

Once you learn more about the chemo drugs you will be getting- I will offer our experience if it fits.

My thoughts are with you- Sophie

Michelle,
I don't recall seeing anything in this post about pain medication and constipation. When I was on my pain meds full time I became constipated, before I found out about taking a stool softner. I bought the Walmart brand and took them daily. When I couldn't swallow I took them through my PEG tube. Talk to your doctor about this.

I had a PEG tube put in before treatment started, also thinking I wasn't going to use it. By the end of the 4th week of radiation, which was also the end of my 2nd round of chemo, it was to painful to swallow, even water. I believe I didn't swallow anything for about 2 months, which was a big mistake. I had to retrain myself on how to swallow. Something I didn't think about and plan for.

The PEG tube was great in enabling me to get my nutrition (6 cans a day of carnation VHC) and hydration. I believe this made my healing and recovery go very well. The nutritionist set a goal of a minimum of 2,700 calories a day and I made sure I met it. I wrote everything down I ate everyday. I order my Carnation instant breakfast VHC from a web site called www.imed.com. That is the best price I found to have it delivered to my door. When I was going through treatment my nutritionist ordered for me and had my insurance pay for it. Now being 6 months post treatment, I can eat just about anyting I want, but I still order the carnation VHC for its nutritional value to supplement my regular diet.

Ask your RO about the type of radiation again. Ask him if it is IMRT. It sounds like he misunderstood your question.

Take care,