AMK -

I'm crying b/c I'm SOO happy Kim's going to try chemo. And that's WONDERFUL that you're all cutting/shaving your hair. Remember - you can get a wig too !!! The girls in my support group had AWESOME ones! I was so jealous b/c they looked SOO perfect!! AND they didn't have to do their hair in the morning, no "bad hair" days, no shaving - there are some definite pluses to chemo!! OH! And they also swore by EMEND )(drug) for nausea!

Those girls said little presents really helped them. They'd come home from the chemo treatment and a little something would be on their bed - a bracelet, bath salts, cds, whatever. One girl was in the hospital for a week, and she was given a present for each day to open. It's sounds so trivial - you don't have to spend a lot of money - but it really does make a difference.

You could see, too, if she's be willing to sign up for for chemoangels.com (note to others, you don't have to be going through chemo to utilize this). An "angel" would "adopt" her and send her little gifts and cards through treatment. Those same girls did that, and it helped raise their spirits each package.

Thank you so much for keeping us posted. Good news or otherwise, we definitely want to know how she's doing.

Sending Love,
Sabrina

Again, all your prayers and thoughts are greatly appreciated. Kim didn't have a good day today. Her face is starting to swell from the tumors and she is in a lot of pain. She is getting migraines often and she can only take Tylenol (which doesn't do much) to help relieve the pain.

We are happy that she is trying chemo. I just wish that we could find some way to raise her hopes and give her some optimism. She has just started taking an anti-depressant so hopefully that will help.

Her chemo specialist would like her start treatment next week, but she has to have her pain controlled before she begins. Right now her pain is a 9 out of 10. The pain doctor is really worthless as far as I'm concerned.

I am signing her up at chemoangel.com. Sabrina, thank you for the info. My mom asked her and Kim nodded yes that she would like try it.

Brett I'm not sure what you mean about clinic trial possibilities. Could you elaborate for me as this is all very new to me.

Today, I also had more than 10 inches of my hair cut to donate to the Cancer Society for wigs. I figure that any little bit that I can contribute is a good thing.

Well, I will keep you all posted as she has several appointments next week and then chemo begins.

Dear AMK,
I am praying for you, Kim, and your entire family. I agree with your mom that God has a purpose for each of us. Not to say that I understand at all that my husband is battling cancer, but I am daily asking God for healing and also strength, courage and wisdom to be what I need to be in all of this...I can say that God has been with me thru the crying and fear. I have felt lonely, but never really alone. I feel that He is hearing me, feeling my pain and walking beside Dan and I in this journey. I read somewhere to try and not worry about tomorrow because it does not belong to us, but to God. Makes great sense to me.
Take care and God bless,
Debbie

amk -- what kind of chemo is your sis having? I'm currently going through chemo and radiation treatments, using Cisplatin as the chemo drug. I had all these fears of side effects going in as well, but I've yet to get sick or anything so far (i've had two infusions -- the second one was Tuesday)... Basically, it takes my stomach for a queasy ride for 2-3 days (whereby food doesn't look or smell at all appealing to me), then I slowly return to normal...

Glad to hear she is giving chemo a go... you both are in my thoughts and prayers... I'm 33, a little older than your sis, but can identify with fighting this "young."

I don't know all the theology behind cancer and God, but I do know that God promises to never leave us nor forsake us, and that He loves us much more than we can ever ask or imagine (even though our circumstances sometimes don't reflect that)... I've taken great comfort in that over these past months and such...

Eric

Hello, amk. God bless you for working so hard on your sister's behalf. I, too, cannot imagine dealing with something like this at such an early age.
Although I know much better, I had bouts of concern that things that I had done in MY life were the cause of my husband's illness. Silly, and stupid, I know, but rationality goes right out the window in the face of fear, does it not?
How far are you from Johns Hopkins in Baltimore?
They have the #1 Head and Neck Oncology dept in the US as I understand it. Had we not been so comfortable with the oncologists at UVA, we'd have been happy to drive the extra distance to use Johns Hopkins' team. I believe they have residential places to stay so you could avoid traveling. I know it is hard to away from home during an illness, but finding/utilizing the best medical care available is worth the disruption. We live about 2 hours away from UVA and once Tom begins daily radiation/chemo, we've elected to stay near the hospital. I may commute to work a few days a week, and let the cancer center volunteers take Tom to treatments, if I feel he'd be comfortable doing that.

With all the other prayers, believe that ours will be included. If I may, I'll send you a private post with a prayer we say daily.
God bless you and your family.
Nicki

Nicki (and others who travel long distance for radiation) -- not sure if this is available where you are, but the American Cancer Society in Arizona has been putting my wife and I up in hotels during radiation weeks.

My radiation is in Phoenix, about 100 miles from home. Especially on chemo weeks, I just can't make the trips back and forth every day.

My radiation oncologist nurse set it up for us, through the ACS. They've put us in some pretty nice places, even a resort in Tempe one week. Might be worth looking into where you are. I know there is NO WAY we could have afforded paying for hotels over 7 straight weeks...

AMK,
Dan had his treatments and is having follow ups with University of MD Medical Center. We have been very happy with them also. Don't have to wait near as long for appts. as John Hopkins. They have a tumor board and we have felt like Dan has received the best treatment possible for his cancer.
Take care and God bless,
Debbie

AMK,
I am so sorry to hear about your sister & everything you are going through.

I too would strongly encourage getting a 2nd opinion from a comprehensive cancer center - your Dr's can fax them everything or you can get copies of everything and fax them yourself.

You & your family our in our prayers & God does have a plan for each of us.

May God hold you tighter than ever during this time,
Pam

Dear AMK..this thread is heartbreaking..I am sure everyone here feels as I do , I wish we could physically be there to help, to motivate, to advise.
These folks have been thru it all , they can help!
May Your God go with you.
Marica
Caregiver to husband Pete. Stage IV base of tongue.
One year PET clear this week

AMK

I've heard the same about John Hopkins from numerous sources.

The local hospitals here list their clinical trials on their website (again, Dana and Mass Gen'l). You may have something available at John Hopkins or Kim's hospital.

Kim will have her good days and her bad days. If you run a search on pain meds, people always list them off in their posts. The Ana-Trampoline sounding med (correct spelling under head pains) was given to me during treatment to help with some of the psycho sematic issues related to treatment. It helped to give me a good night's sleep, which no one can say is hurtful. It's also a muscle relaxer apparently, which may help her headaches (and what I'm currently using it for post-treatment). It's an old anti-depressant, so maybe they can presribe it at anti-depressant levels for her depression, too. Take out a bunch of birds with one stone.

Our prayers are with you, as they are with everyone going through a difficult time here. Please continue to keep us posted.

Sabrina