AMK,

I am so sorry to hear about Kim and I know it must be so difficult for you, too. I will be praying for miracles and for God's guidance and wisdom to direct the medical team to the absolute best possible treatment for Kim.

Ed

AMK,

I forgot your original request. I will pray for God to open Kim's heart to Him, for continued faith, hope and love.

God Bless you both.

Ed

AMK,
I have a sister 5 years younger then me that I could not imagine losing. I also have a daughter your sisters age. The thoughts of her dealing with any of this takes my breath away. You must be a very strong individual, I admire you. Please keep us posted on how Kim and yourself are doing.
Minnie

AMK -

I apologize for yet another never-ending message. I'm just trying to come up with anything that may be helpful to you. We care a great deal about Kim and you and want to see the very best outcome.

Many of us (probably most) went through some significant periods of time not being able to talk, eat, or even breath. And during that period, which may extend for many, many months, it was not a quality of life we were happy with. My situation wasn't as "serious" (though that's like saying your a little pregnant and a lot pregnant) as others, but there were quite a few times I spoke to my husband through AOL IM. He's sitting 6 feet from me, and that's the only way I could communicate to him. Or days I just couldn't get down those Ensures/water and lost weight/became dehydrated.

However, those situations did pass. They just take a while. Either we healed back to talking, eating, etc. or we adjusted to our "new normal". She's not able to breath now because the cancer is blocking her throat. That is fixable.

She's not able to eat b/c who CAN after those major surgeries and with the cancer blocking her throat. There are a some on this board that stuck with their PEG tubes for an extremely long time b/c they had to. Do they wish eating "normally" was an option for them? Sure. Do they prefer death over the PEG tube? I highly doubt it. I'm two months out of treatment, and still drinking at least 2 meals a day. That will eventually change, but even if it didn't, it's still worth fighting to live for (in my opinion).

There also people here that can't talk. You can ask the same questions as above and come with the same answers. What about people that are naturally mute? They've adjusted and live a life with QUALITY. It will just take time to get to that point.

As for the doctors - they all make mistakes, this one being outrageous in magnitude, but it does happen. Has Kim lost faith in these particular doctors? What if you went to another major cancer treatment center and met with new doctors? Miss Vicki's probably ready to beat me, b/c I seem to say that for everyone . But it's a possiblity, right?

What about clinical trials at various centers? Jsut a suggestion on pooling family resources together, if it's an option: My co-worker (Brian) who sits in the next cube over is in a similar situation. His mother has pancreatic cancer and very few treatment options are available. She's in CT, his brother is in NY, and he's in Boston. As we speak, he's meeting with Mass Gen'l (and later this week Dana Farber) on their clinical trials. He brings his mother's records with him, but not his mother, and discusses her options with the doctors. The brother is doing the same with Sloan in NY. Another brother is going to the CT hospital appointments with the mother.

You may be able to send records to these major centers and speak via phone to the doctors. See what course of action they would take. Brian and I went onto Mass Gen'l and Dana Farbers website and downloaded the clinical trial decriptions.

Keep us posted. You're in our prayers every chance we get to say them.

Sabrina

Thank you all. Kim has lost faith in her doctors. She has been on the verge of hope, only to be knocked down again because her doctor did not listen to her about the pain she was experiencing and made a mistake - not diagnosing quickly enough and the cancer grew.

She is being treated at UPMC. It is the closest cancer facility to us. Cleveland might end up being an option, but that's still 2 hours away - a great distance when she has appointments every week.

We are not sure of the outcome of her situation. She is at home, but very tired and physically in pain. She is miserable and depressed. I am still angry that she was never given anything for depression. I think she would like to die and rid herself of all the pain and misery, but I don't know if I can handle losing her. I wish I could find some way to instill some hope into her. I don't know how though. It's very hard to see her like this, especially since she is one of the toughest people I know.

As far as her quality of life, she feels as if she has none. She commmunicates by dry erase board. She cannot eat or even breathe. The doctors don't know if she'll be able to talk again. For a 23 year old who is just starting out from college, what kind of life is that for her?

I think that she feels punished - that she is being punished with cancer for doing something wrong. I think she was chosen by God because he felt she was strong enough to beat it.

Tomorrow she has an appointment with a chemo doctor to discuss her options. I don't think she wants to do chemo (not that anyone wants to go through it). I think her decision will be to do nothing, which won't give her much time with us. I am just hoping that tomorrow the doctor can instill some optimism and hope in her. Reassure her that although it won't be easy, she can still beat this and recover - possibly eat, breathe, and talk again.


Thank you again for all of your support. I will update about the appointment. Keep Kim in your prayers as you are all in mine.

At 23 years old, I did not know for sure what I could endure, and I spent part of the period right before that age in a place where people were dying all around me, where fear, pain, and suffering were happening on a daily basis to hundreds. I do not think that any of them who survived that experience look back at that period now, and wish that they had followed their gut instinct to give up. Though may of us were scared enough to want to quit, injured enough to believe that life with out limbs, or horrific physical and emotional scaring would not be a life not worth living. Years of productive lives later, even if living with physical compromises, have proven to them that staying the course, fighting on in spite of the pain, disfigurements, issues related to quality of life, were all worth it, and they are stronger individuals now for having faced that enormous emotional challenge and over coming it. She is reacting to and experiencing fear. Fear of the disease, fear of death, fear of the treatment, fear of the compromised life that may be ahead of her, fear of the unknown. The best support she could get right now would be someone listening to that fear, letting her express it, and being supportive of a position that would help her see a way through it. I do not know that these doctors have made serious mistakes, and what she is dealing with may be the results of the best decisions that could be made at the time given the information and testing that was available to them. The treatment of cancer is part art and part science. It is certainly not an exact science at that, and even the best of doctors are only working within the confines of our very limited knowledge of cancer. She needs to talk this through with a professional psycho-oncologist. For as supportive of her as you are, she may need more from someone that can talk her through the issues and keep it in the realm of that which she can comprehend and deal with. Hope comes from within, but sometimes that hope has to be teased out of the jungle of other issues and fears by someone who knows how to help someone find it. There are people who only do this one type of therapy every day with those suffering from cancer. You need to find such a person for her.

It is clear that you are a religious person, and I respect that, but I categorically disagree with any thought that GOD

Update on Kim:

We went to see the Chemo specialist today. He is a very nice and compassionate doctor. Kim seemed to like him. My mom made sure to stress to him that Kim wants him to listen to her when she feels that something is wrong and act on it, which none of her other doctors did. He agreed and seemed really shocked by what my mother said about the other doctors.

Kim gained 6 pounds since last week - yeah! AND she was finally given a prescription for an anti-depressant! I personally feel that she should have been given this at the very beginning. The petscan confirmed that she does have cancer in her throat, neck, and flap on her tongue. Apparently, when she had her lymph nodes removed, they didn't remove all of them. We were all very stunned by this since her doctor did not say he was only taking out the infected ones. It's very disappointing. Anyways, they also said that they saw something around her lungs, but they weren't sure that it was cancer. It was shocking and he didn't go into it too much. Kim's oncologist will discuss the petscan with her in more detail at her appointment next week. However, the chemo will treat the whole body unlike radiation which focuses on a specific part.

The doctor wants to start her on a first round of single dosage chemo that will last 6-8 weeks. He would like to begin next week since her cancer is so aggressive and he doesn't want to wait for it to get worse. According to the doctor, the first round of chemo will have some side effects, but they can be controlled such as nausea, vomitting, fatigue, and mouth sores. She will not lose her hair in this first round. he also said that she will have new scans every 2 weeks to see what progress the chemo is making. Hopefully it will make tremendous progress. He said that he can't guarantee anything, and the chemo will not get rid of the cancer, but it might give her more time. How much was not said, but more time is good. I'm praying for a miracle. Third time's a charm right?

Kim agreed to try the first round of chemo, but if she doesn't like it, she will quit. I told her that if she does lose her hair, I will cut mine short (I can't shave it because of my profession), and my brother and husband said they would shave theirs too. Kim has so much support from everyone. I only wish that God would answer our prayers and rid her of this as well as everyone else out there.

Although we should not think that God planned for her to have this terrible burden because of her strength, it is better for her to think that than think she is being punished by God. She was feeling that way for a very long time. My mom believes that God has a plan for everyone and that this is all part of his plan, but we can't figur out why. I hope that doesn't offend anyone's beliefs. We are just trying to instill some positive perspective into Kim.

Please keep her in your prayers as she continues to battle and ventures into chemo. I'm praying that the road ahead of her isn't too tough.

God Bless

Dear AMK,

Thanks for the update -- I hope and pray that she will see some improvement from her next round of treatment, and that you and your family will have the strength you need right now.

Cathy

AMK,

I am encouraged to hear Kim is feeling a little bit better about her current doctor. I am so sorry all of you have to go through such a difficult time. I am praying for God to direct the medical team to the absolute best possible treatment plan and comfort and peace to Kim and all of you.

Ed

AMK,

The fact that Kim has gained weight is a very good thing. I take this as very good news given the nature of the challanges she's enduring. The anti-depressants should be helpful as well.

I had chemo as part of my treatment and I can categorically state that it was a much, much easier ride for me than the radiation.

While Kim is getting her chemo therapy, I would encourage you to research clinic trial possibilities for her.

My very best wishes...

-Brett