Eric finished his third week of radiation today and this was his worst day yet. Up until today he hasn't needed any pain meds, but today the pain in his lower throat was intense so he drank some oxycontin at 9:00 a.m. before we went to the rad appt.

The drive to the appt is 90 miles, and he wasn't feeling well on the way down. At 11:00 a.m. he received his amifostine injections. 12:00 his rad appt. He took a Zofran at 8 am. By 12:30 when we went to the car he was throwing up before we had even left the hospital. I went back to the infusion dept (they are really great up there) to get a vomit bucket, paper towels and advice.

The only way Eric has found to avoid severe nausea from the amifostine is to have a full stomach before and after the injection. Today that was impossible as the oxycontin preceding the amifostine made him too nauseous.

The nurses encouraged me to track down the doctor and get a narcotic patch prescription. I did that and the doctor also said to fill his compazine prescription and have him take that along with the Zofran.

His nausea and pain are really bad. In the car on the drive home he was retching, crying and hurting. It is now midnight and he hasn't been able to hold down any fluids since about noon today---almost twelve hours ago.

He should be better tomorrow as it is the weekend so there are no treatments. I think he has to get a handle on the nausea or he can't continue taking the amifostine, which we hope will help save his salivary glands. His problem is that all the opiate pain meds give him nausea. I am hoping that the patch/zofran/compazine combination will be sufficent to stop the nausea and manage his pain. On monday we see his oncologist. Does anyone have any thoughts as to what we should ask her? Is there an effective non-narcotic pain killer?

Finally, eating is getting really hard (today he couldn't eat because of BOTH nausea and pain and the nausea prevented using the "magic mouthwash" to numb his throat) Should we push for a PEG tube? It seems to me that if is going to get one that the sooner he has it the better.

For all of you that have been through this... my hat is off to you. This is a very traumatic, intense and life altering treatment. It was really hard to see him in so much pain today. On a bright note the rest of the week was really good, but today was a major wall.

Thanks all,

Jack

Eric finally has kept some liquids down, so hopefully his dehydration won't be a factor this time. He had decided he wants a feeding tube. I did a search but I didn't seem to find much information about what this involves in terms of the surgery. Is this a day procedure? Should the medical staff at the University of Washington be able to do this quickly (i.e. this week)? Can you still sleep on your stomach if this is there? I am glad he has decided to do it as most of you that have had this say it really helped and he can barely swallow today.

Thanks,

Jack

Jack, I think Eric's decision is a good one. My husband put off getting the PEG tube until the last two weeks of radiation and wished he would have done it sooner. Really took the pressure off the battle to get anywhere near enough calories/protein/hydration in each day. He is almost 4 months post treatment and trying to wean himself off it.

The procedure to put it in is quick...think it was only abut 20 or 30 minutes, outpatient surgery. There can be some adjustment period at first. Some people have some pain in the first few days. If that happens, try damp heat - that really worked. As far as formula for the feeding tube, Eric might try a product called "Novasource." I think it is higher in calories than almost anything else (475 per box, I believe). Ensure really upset my husband's stomach, but everybody is different.

One other suggestion for dealing with the amifostine nausea. Eric might want to drink some Galviscon (antacid) before the amifostine. It doesn't always help with the nausea but, as his throat gets more and more sore, it helps to prevent the vomit from burning when it comes up. Sorry for being so graphic, but a nurse in radiation oncology suggested it for my husband and it made a big difference.

Sending good thoughts your way,
Anita

Eric,
It was at about the third week of radiation that I began being unable to swallow and quickly went in and got my PEG. It is a simple procedure where a radiologist sedates you and puts it in. Getting it out is even easier...they just pull it out!

As I have written here many times, my PEG was my saving grace. Not only is it critical now when Eric needs nutrition and hydration, but in addition, there is no guarantee that swallowing will quickly return when radiation ends. My treatment ended at the first of September and I kept the PEG for another 9 months. As I approach one year from radiation, I am still very limited in what I can eat. The hospital should be able to quickly put in a PEG when you are there for radiation.
I hope that Eric feels better, it sounds pretty rough.

Danny G.

When they spoke to me about it they said a gastroenterologist had to do it. It was to be done under sedation and they would insert an endoscope down the throat, into the stomach, to insure correct positioning. 20-30 minute procedure. They needed a week for scheduling.

Jack,

I'm glad Eric has decided to get the PEG. It can literally be a lifesaver. Heather also had hers inserted as an outpatient and it wasn't much more than an hour from start to finish, including the prepping and recovery.

As far as getting it done this week, we have found that if we have Heather's surgeon or oncologist intervene, things usually get scheduled faster. i.e., on 7/23, the nurse from the surgeon's office called and got Heather an appt. to see a neurosurgeon on 7/29. I'm sure it would have taken longer to get an appt. if I had called myself.

You and Eric hang in there. Once he has the PEG, things will be a little easier.

Rainbows & hugs,
Rosie

Once he gets the PEG, please post again, there are lots of little issues and tricks to dealing with using it, and we'll all post about them. Week 3-6 of radiation was the tough time for me. What he is going through seems the normal response to what is being done to him. Try other pain meds (all narcotics) and anti-nausea drugs. What works for one person's body doesn

Well Eric isn't getting a PEG tube this week. Today has been a long and difficult day and for the first time I questioned whether I wanted to be here. Until now I haven't questioned that; I have wanted to be Eric's primary advocate, but today we had a conflict.

The day didn't start well as Eric had a headache and ninety miles is a long car ride in silence. When we arrived at the radiation department we checked in early. We already had been advised by the on call weekend resident oncologist to skip the amifostine today and to see the doctors prior to the radiation appt. to discuss Eric's challenges with throat pain, nausea, dehydration, etc.

As we were sitting in the waiting room the radiation nurse came in and started asking questions such as, "how much water did you drink this weekend?" "What brought on the nausea?" Eric minimized his pain, minimized his lack of water and incorrectly identified the cause of his nausea. I interrupted him to correct him and he got irritiated. After she left he said, "just let me handle this." A few minutes later the resident oncololgist came up to ask questions and I didn't say one word as I was still pissed off about the nurse. They took him away for his blood pressure and for the first time I didn't go with him, instead I immaturely waited and sulked in the waiting area.

A few minutes later the nurse came for me as we were having our big meeting with the Radiation Dept. Asst. Chairman, the resident oncologist and the nurse. Eric actually did a good job explaining the challenges he had, and I reiterated the extreme difficulty he has with tolerating any opiates. The meeting went well EXCEPT the Doctor wants to try managing his pain/nausea with two narcotic patches, vicadin, compazine and zofran. I strongly felt she should schedule the PEG tube now, and this is when I behaved the way I believe a good friend and good advocate should when the decision isn't black and white. I shut up. I let Eric make the choice. It isn't my cancer treatment, it is his. No matter how stong my opinion this is his life, his pain and his treatment. He wants to try this first and if it doesn't work they will schedule a PEG tube to help his lack of nutrition and dehydration.

After the meeting he had to get two liters of IV fluids, so we stayed at the hospital another five hours. He was given the IV in the infusion center where he normally receives amifostine. This is the same place where some people get chemo. I have started to recognize some of the chemo patients and they have seen me often enough to nod hello in recognition. I am a regular.

Some days I am detached from cancer. Today it was completely in my face. When Eric got on the IV he tried some oxycodone and immediately got sick. He told me I was right, he was wrong and the the opiates get him sick. I didn't care I was right. I just wish I were wrong. It was inevitable that we would have a verbal clash.... it is amazing we haven't until now, but it was just another tangent to cancer treatment that I hate. This was my first experience with "fighting and disagreeing with the patient." I feel good about my behavior. I dropped it and let him make the choice. That is hard for me to do when I think I am right and ultimately, whether I am right or wrong he needs to make the decisions. It is just damn hard for me to see someone I love weak, in pain, vulnerable, hurting without wanting to take over his decision making under the guise of "making it easier for him." I am glad I backed off today, and I am glad it was clear to the doctors that Eric is making his own decisions, I am just his most trusted advisor.

I am sick of cancer. I am sick of waiting for doctors. I am sick of prescriptions poorly written that pharmacies can't read to fill. I am sick of validated cancer parking and waiting in a long line at the end of treatment to leave the parking garage. I am sick of radiation machines breaking down or running late. I am sick of the oncology dentist routinely being ninety minutes late. I am sick of trying to help Eric have a good attitude when there are alot of reasons to have a real bad attitude. I am sick of my business doing poorly because Eric isn't there and I am preoccupied with his cancer and lack my usual motivation to financially excel. I am sick of ensure style cans, drink mixes, ice, pills, vomit and hospital cafeteria food.

Despite all this I feel truly blessed and truly lucky to have the treatment we have at the hospital and the support and knowlege I have gained here. Eric is getting great care from competent caring staff at the hospital and he is benefiting from all your experience. The last few days I have just felt like I am at my limit in terms of my ability to have my business succeed, support Eric emotionally and intellectually, keep my own relationship going (I have been emotionally and sexually distant from my partner becase I am tired and overwhelmed) and stay on top of anything that can be done to improve his chances for success.

I know some of this sounds like I am whining, and maybe I am. But I am doing it because I want to quit whining. I want to let it go. I want to stay positive, focused, successful and supportive. Steven Covey in 'Seven Habits of Highly Successful People' talks about the importance of have emotional/physical/intellectual/spiritual balance. However, he also talks about there being times in life when the healty mature choice is to consciously choose to be out of balance. Helping your best friend through cancer is one of those times. I can't imagine being successful in going with Eric to find out if he has cancer, picking a cancer center, deciding to have surgery, being there during the neck dissection, helping him heal from the tonsillectomy and neck dissection, meeting with the radiation oncologist, driving him at least one day a week 200 miles for his appt., learning everything I can about squamous cell carcinoma, otolaryngology and head and neck cancer without sacrificing some of my emotional/physical/intellectual/spiritual balance. The most important thing for me is to go though this with no regrets, knowing I did everything I could to help him survive cancer...and in that I am successful. One day at a time this to shall pass. I am trying to be patient but it will sure be nice when this phase of treament is over.

Thanks for letting me ramble and thank you so much for all your advice, prayer, support and experience. We are almost half way done with radiation.

Jack

Hi Jack,
There are a few tricks we learned. First I hope you got a disabled placard from the DMV. Secondly ALWAYS tell the pharmarcy, lab, etc. that Eric has a compromised immune system and needs to get the hell out of there ASAP. They will almost always move you to the head of the line. My loving wife watched me go through many of the same things you are and she ended up in therapy for a while. Venting and righteous anger are a healthy thing and this site is a perfect place to do it. Caregiving is tougher than being the patient sometimes. About the patch. I used a Duragesic patch. They always start at 25 mg and can go as high as 300 mg. If he is taking a lot of supplemental meds for pain control than he needs to have the patch strength increased. It also takes about a day for the patch to come to full strength. It worked very well for me and the withdrawal after being on it for months was manageable. I am sure that I too "sugarcoated" my food intake habits and my wife would chime in with the truth which caused some tension but the truth always rises to the surface. I beleive it was Walt Whitman that said "You have to judge a man by his intentions, not by his actions".
Things are going to get worse so you need to mentally prepare for that. Having lived through it -and at times I actually had my doubts, I realized just how tough and resilient the human body is. Radiation kicked my ass! I basically lived on Carnation Instant Breakfast and milkshakes for months. I am surprised how slow the infusion unit is at rehydrating Eric - that's about as slow as if you just went to the local emergency room. At Kaiser infusion they would pump in a liter in a little over 30-40 minutes. I would immediately feel better. We only had to drive 60 miles RT but it brought back memories of times when I was just too tired and sick to talk (and as treatment went on -too burned and blistered to talk) and couldn't get comfortable no matter what I did. Fortunately, I had several other drivers to take some pressure off of my wife. (also complicating things was she thought that the time in the car would be a great time to "talk about things"). I had an advice nurse that coordinated all of my requests with the doctor. My primary doctor was the oncologist who prescribed all of my meds. They always took care of any problems within the same day and it worked really well. The opiates can sometimes cause nausea in the beginning but that is usually only for a day or two while his body adjusts. I remember throwing up so much that my teeth were polished like glass from the stomach acid. Practically anything could cause me to vomit. Antacids help and he might try Pepcid. I did have some fair days however and look forward to those. Constipation was another huge problem. I lost more weight, had more dehydration problems and vomiting from that than anything else. It's like you have to manage all of your body functions manually and try to find the right balance of medications to do it. I don't believe there is any such thing as an efficacious non narcotic pain killer. Oh, and I would routinely vomit after using the pink magic (don't swallow it, by the way, unless instructed to) then I would have about 10-15 minutes to chug something down. If you swallow it it messes up your gag reflex.
I am 130 days post treatment today and lived through it. No PEG tube, lost 60 lbs (about 1/3 of me!) but I am going to restauants with friends (can eat almost anything), church, AA, went to the county fair with my wife. Am gaining a couple of pounds a week. Playing the bass again and starting to really feel like I am rejoining the human race. Hang in there -you'll get there.

Jack,
Right on brother! You are a great, unselfish guy, and you are doing a fabulous job dealing with so many problems and so much stress. Noone here minds anyone venting, and we certainly don't consider it whining. Of all the caregivers that have written in here, you are one of the most self-sacrificing, caring folks that I have ever heard of. Most of us are cared for by family members or partners, and , I want to add, most of us have not had the trials and tribulations of that Eric has had to deal with ( and you along with him ).
You are to be commended. Keep up the wonderful work. I know that you will feel better in time.

Danny G.