Hello everyone,

Last time I posted we were about to leave for mom's surgery to remove the lymph nodes & tumor in tongue.

As we waited, only 1 hr. into the surgery the doc came out & said the tumor was bigger & deeper than he thought & could not remove it without taking all of the tongue our options was to do it & her wake up without a tongue or decide on radiation & chemo daily for 7 weeks, we decided on the the treatments. Gosh! I'm so angry, this was our second opinion we took that extra step & traveled those extra miles to see a highly recommended specialist at one of the top in the nation's cancer center & our first opinion was the right one. He made us think that this surgery was going to end all the pain & problems (after recovering) instantly unlike the treatments that would linger on, he set us back about 6 weeks. 3 1/2 weeks ago he tells us that this is not an emergency & sees no reason to rush the surgery, tells us mom is in stage II & now he says she's in stage IV. I knew the tumor was gonna grow, I just don't understand why he didn't.

Her first round of radiation & chemo will start Monday. She will be her sickest, they tell us, in about 2 to 3 wks. (Christmas)her favorite holiday.

I just wanted to keep all of you updated -I knew we had a long road ahead of us but I didn't realize it was gonna be quite like this with so many other obstacles in our paths.

I am thanking each of you for all your posts, I'm kinda numb right now, I know this may sound petty or vain but the thoughts of her hair loss & blistering skin scares me almost as bad as how sick she's gonna be, I think it may put her into some sort of depression or something, I guess because she's a woman with such high tolerance to pain but she's always been one to take such pride in her appearance even at 72 years of age, I hope that statement didn't offend anyone or sound tacky or just make me sound stupid.

I know all of you will be thinking of us, as I have been all of you. Thanks again -Tina
Oyeah, another thing please pray that I don't act on the thoughts of doing something harmful to that quack (just kidding) but I'd like to let him know how I feel.

Hi Tina,
It's too soon to freak out. Everyone responds differently to treatment. My skin only got a mild sunburn. There was blistering inside my mouth but that didn't happen for 3 or 4 weeks. It was the worst in the weeks post treatment. Most of us do go into depression - it's a normal side effect, but not usually until post Tx.

At least the surgeon came out and gave you the decision to make. I am confused - was he the one at the CCC or was the CCC recommending RT/chemo? I doubt that she jumped 2 stages in 3 weeks. Sometimes they really can't accurately stage it without surgical exploration or lymph node removal and biopsy. Tumors grow at the same rate as normal tissues. They estimated that mine was 2 years old when they finally Dx'd it. It was 2 months from Dx to the beginning of Tx.

Vanity is one issue - staying alive is another. Save your strength for the fight.

tinaelise, sorry to hear of your Mom's situation. Don't be too hard on the medical team, though, as until you get into a problem, it is hard to know what you will find. As Gary mentioned, it is good that they stopped and came out to get a decision from you as to how to proceed. I had a similar experience as my surgery started, they found suspicious tissue and tried to get it biopsied and then complete the surgery but were unable to get the biopsy done in time and had to abort the surgery. I then rescheduled it and had to cancel it the morning of the surgery as my doctor threw his back out and couldn't do the surgery. Rescheduled again and he had to go out of town on an emergency. Rescheduled again and finally got it done. Hope your Mom doesn't have that type of experience as it is hard to get up for the event just to have it pushed off.

I was worst the last week of rad and first 3 weeks after. I think that is generally the experience most of us have. So your Mom should be relatively OK during Christmas. Hopefully, the treatments will reduce the tumor size and the surgery will be a lot easier and less tissue will have to be removed. Are they also giving her cisplatin chemo during rad? This is often done in concert with rad to assist in shrinking tumor size. Stick with her during the rad treatments as they were the hardest part of the treatment for me. She will need your support a lot. Also, when I was diagosed, they didn't know where the primary site was, only the lymph node that was enlarged. It was only after the tonsilectomy that the pathologist found the tumor that they were able to stage it accurately, so changes do occur during the treatment process. one thing about cancer is that we are all different and accurate predictions cannot be made in all ways for all cases. Sometimes you have to roll with the punches. Will continue praying for you and your Mom and the rest of the family.

Hi Tina: I am so sorry that you & your family are experiencing this during the holidays. I just wanted to mention that wigs are an option. My step-sister had ovarian cancer at a relatively young age (50) and her greatest fear was that her granddaughter would see her w/out hair (the rest of us were more afraid of the cancer). She immediately went out & bought a wig. I came to realize that her concern w/looks is a sign of wanting to live - it indicates a vitality/love of life. She was planning on being around and wanted to look the same. Secondly, not everybody has bad burn scars. And there are lotions/creams mentioned on this message board that help.

This is an awful time for you right now but hang in there! Take care of yourself, too. - Candace

Tina, a great present for your mom would be a selection of pretty head scarves. When doing rad and chemo I wanted to look as good as I could (ah vanity, thy name is woman) and covering my head pirate style with the scarves as my hair departed lifted my spirits. The American Cancer Society has a wonderful catalog of inexpensive but attractive wigs and other head coverings. Try their web site. You should also be aware that not all chemo causes hair loss, so she may not experience that at all. Ask the radiation nurses for creams and lotions to help with the radiation burns. Since I had it, there are more options. Finally, take a deep breath. You and your mom can get through this. Each day is a victory and just that much closer to being finished.

Tina
You are one hell of a daughter, just do what you feel is right, buy your Mom pretty things, keep her feeling good about herself, but most of all, tell her how much YOU LOVE HER, that will get her through so much, we are all here for you both, don't you forget that...
Sunshine...love and hugs
Helen

Tina, don't worry about things that may not happen. Although a side effect of chemo treatment can be hair loss, not many of us who received it suffered from total hair loss. Take myself as an example, I bought a wig before treatment because I couldn't allow myself to look a day different from my old self. Yet I was so happy that apart from losing some after hair wash like eveyone, I didn't lose extra due to treatment. Even if a person loses all her hair after chemo, it will grow again in about 4 months' time, usually even looking more beautiful.

Karen

Hey Tina,
Hang in there sweetie. Dan's hair thinned from the chemo, but not total hair loss. We had some of the same things happen. Dan's oral surgeon at a small local hospital said his neck swollen gland was infection, turned out to be cancer. When he did the radical neck dissection, he couldn't even get it all it had grown so big and was wrapped around carotid and jugular. What horrible news to get on Christmas eve! But after healing for a couple of weeks he went right into very heavy rad and not so heavy chemo and so far, so good. Remember to call or write. Where will your mom do her treatments? We really need to get together. Dan and I would love to help in anyway we can. If you mom wants to talk to Dan (since he has been there thru multiple surgeries, chemo and rad), let me know. Sometimes it helps to talk to someone who has already gone thru the treatment.
Prayers and thoughts are with you and your mom and remember anything we can do...we are here closeby!!
Love,
Deb

Tina,

I am sorry for where everything is right now with your mother. I am sure when you sought out a second opinion, this is not what was expected. But try to remember that you went because you wanted to know, not because you wanted to be told something different. Now you are armed with the correct assessment. It sounds like the first diagnosis did not accurately stage the cancer and going from a Stage II to a Stage IV gives the medical team a much clear picture of what they are dealing with and how to formulate the best possible treatment plan to battle this disease. You wanted another opinion because you were not comfortable with the first. I just wish the outcome could have been different but there will be a more precise plan from the information obtained during the surgery. Does this even make sense?

Your anger right now is what we all, patients and caregivers alike, have gone through. Nobody wants to go through or see someone they love go through this. Get it out and then refocus on you mom's treatment. She is so fortunate to have you by her side, helping her in the battle of all battles. Try hard to keep yourself recharged, take time to make time...for yourself.

Again, I am sorry for what you are going through.

Ed

Hello all!

Thanks for all your posts. Each and every word means so much to me.

I haven't been here lately. Mom acts like she doesn't want to be alone so me & the kids are there when I'm not at work.

I have been reading all the new posts since I've been gone to see how everyone is doing. My thoughts & prayers are with you all.

My once perky, vibrant, beautiful mom is really not herself. She seems to possibly be depressed or maybe it is just her meds. Anyway, she started chemo today her intake is carboplatin & 5FU. The carboplatin is administered at the clinic while the 5FU intake is with a pump she has with her at all times.

My last post sounded so petty, I am kinda embarrassed, but anyway, the oncologist told her today that she would only have minimum hair loss, which, I think, brightened her spirits a little. Mother is so ill tempered right now (so unusual), I understand she's going through a lot but this is just not my mom, actually she's not so bad with me or my brothers just with a couple of her sisters & my other 3 sisters. They seem to get on her nerves so bad, and they are just trying to help. It seems worse about an hour before it's time to take her pain med. We are a family that is not familiar with this pain mediciene maybe we're doing something wrong. We've got her on a schedule but it may not be quite right. Every 4 hrs. we give her 2tsp liquid hydrocodone, her last dose being at 6p.m. then at 10p we give her oxycodone, (or something oxyco excuse my spelling) the doc said the oxcyco was like a suped up tylenol with a sleeping aid.
If anyone is familiar with these meds let me know and also wondering if this is a normal reaction to it. Mom has never taken pain meds before, this might be too much for her.
If you're familiar with this chemo let me know what to expect. Radiation starts next week, this is all so scary.

Well I just wanted to update you and again hear from all you wonderful people. My prayers & love to you all. Tina

Oh yeah, one other thing, I was told mom should'nt be around kids, I was just wondering what that was all about, I have a 13 year old & a 9 year old. They are not sick & they are out of school for the holidays

Tina, You didn't say who told you about not being around kids. They may be thinking the radiation is dangerous. This is NOT true if she is having external radiation treatments. If she is getting internal radiation treatments (radioactive seeds) then she will probably be isolated during the time the seeds are in place. Ask her radiation doctor to be sure. Her immune system will be affected by the treatments, so it would be wise to protect her from other common illnesses. She needs human contact however, so don't go overboard on this.

As to her being cranky, some of the pain meds. can cause wild behavior and mood changes. If you suspect this, then see what else they can prescribe.

I know this is all scary and my heart goes out to you and your family (mom too) but she can do this and your helping, is helping!

I think what was meant by the kids thing was only if they are sick. Cancer patients have compromised immune systems and children are prone to aggresive viruses. When I worked for a school district, many years back, I was sick constantly. When I left the district there was a rather dramatic change in amount of colds and flu I had.

I was a pretty cranky patient too for a variety of reasons during different phases (pain. frustration, no taste, meds, fatigue, nausea, constipation, etc.). Depression is also quite normal for cancer patients. It usually is the worst post treatment.

Tina,

Hardly petty Tina, more like a daughter that loves her Mother and is very concerned and caring. You can vent here anytime.

It is more than understandable that your mother is not her usual self. This disease and its treatments don't make you feel very good. People and/or things that were just a small irritation before can become BIG items. Like Gary, I was not a very pleasant patient. It takes a while to even begin adjusting, but she WILL adjust.

Everyone reacts differently to the different pain meds. Sometimes they need to be changed because of adverse reactions. As others here have said many times, observe and write down any little or big question to ask the Dr.s (you cannot possibly remember them all.)

I don't know if you have already talked to your Mom about coming on board here, but I think it would be a big benefit to her.

I agree with Mark and Gary about the children issue. Ask the Dr. and use your common sense.

Prayers and positive vibes to Your Mom and You and your family.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Call me anal but I had my wife open doors for me so I wouldn't have to touch the handles. I wore driving gloves a lot, especially when grocery shopping. Just think about all of the potential disease vectors - gas pump handles, ATM pushbuttons, grocery carts, handshaking greeters at your church - the list is endless - any things commonly touched by people at large or in public places. I still carry waterless hand disinfectant in my car. We very very diligent about disinfecting the kitchen and bathroom as well. I avoided colds and flu very successfully in the first 2 years - which could have easily caused pneumonia in a compromised immune system.
Kids aren't very discriminant about who or what they touch - that's why colds and flu are so prevalent in schools. Make sure that they wash their hands frequently, especially before seeing grandma.

Think about it, back in the old days, people having this type of treatment would probably be placed in an isolation ward.

On the other end of the spectrum from Gary, I was doing RAD/Chemo in Hong Kong during SARS, when people were wearing masks while riding in their own cars. Only time I wore the "SARS mask" was when riding in the MTR, bus or other public transportation, every once in a while at the mall. During that time everyone was wearing a mask and if you didn't you looked out of place.

Key is to use good interpersonal hygiene practice and use common sense. If you're really worried about airborne infection, the disposable surgical masks are realatively inexpensive and easy to use.