Hello everyone,
Mom had another round of chemo on Friday. They sent us home with the 5fu pump again. The doctor acted like her initial reaction was because of anxiety. I know my mother and it wasn't. That didn't sit well with her. That statement was followed by him telling her she was going to have to do 3 more rounds of treatment. I wish you all could have been there to see how mad she was about it. We were initially told it would only be 3. We are at least getting a scan done in 2 weeks to see if this awful stuff is doing it's job.

After we got home mom was okay until the third morning of having the pump on (just like last time). My 10 year old niece woke her up in the middle of the night saying she was making scary noises in her sleep. She came and woke me up and sure enough she was having the same shortness of breath as she did the first time. We rushed to the ER and after a shot of some steroids to stop the swelling in her throat and oxygen she was feeling a little better. They gave her a dose of potassium because the doc said it was low but it didn't sit well. Just was the nurse left the room she started to throw it up. She has been having problems with very thick mucus phlegm. She was throwing that up as well and some of it lodged in her throat. She couldn't breathe and was panicked. I got the nurse because he was outside of the door and he just looked at her and yelled �what do you want me to do?� I yelled right back that she doesn�t know what she needs but she can�t breathe. He got the doc quick after that. Jerk. He�s almost always there when we go to the ER and he is always an impatient jerk. Mom was really upset and scared after that. Eventually I brought her home and she was feeling better. Am I expecting too much from the medical staff? I don�t think it is unreasonable to doctors and nurses especially to show a little compassion. She is obviously scared and it�s like they forget they are working with humans, always so rough. If mom says something was real and wasn�t anxiety I think the doc should give her the benefit of the doubt. He doesn�t know her he has seen her for maybe 45 mins total since he started treating her.

She got neulasta shot and fluids today so she is having awful bone pain. I�m thankful that there is a shot to keep her white blood cells up I just wish it didn�t make her hurt even more for a few days. You guys know how stubborn she is about taking pain meds. She said the other day �I bet Jerry on the board would be pissed I wasn�t taking any meds right now.� I have convinced her to at least take half doses to stay ahead of the pain.

Nellie�Mom loves your cards. They are on the mantle and on her end table by her chair. I hope you know how much they have lifted her spirits.

Mom misses all of you and always tells me to look on the site to check on everyone.

You are all awesome!
With Love,
Amy

Amy:

My heart goes out to your mom. She is such a strong woman. Its awful that she is treated like its an assembly line at the hospital.

I will say a prayer that she starts to feel better. Chemo is horrible to go thru. Hearing that she needs more must have been so disheartening to her.

Glad you are keeping us posted, we are all pulling for your mom. Thank you.

Christine

Amy
Your feelings are very valid.. this guy is a jerk!
Your Mum is a very strong lady who does not cry wolf.. they should know that by now. Please let her know she is in our thoughts and prayers.
Take Care
Marica

Hi Amy,

Thanks for the update, even though it so tough to read about all that your mom is going through. If anyone can come through this, it is she. Bad enough to have go through all this and to have unfeeling people in charge of your care, it is just so unfair.

Tell your mom that there is no shame in controlling her pain. This is not the time to be a martyr.

Please give her my love.

Jerry

Read your post and just felt furious. Next time tell the guy that he is not working at a vet clinic - he is dealing with HUMANS and that is what he is paid to do.

I will join the chorus and encourage your mom to take whatever medication makes life a bit easier. The last martyr I heard of got burned at the stake so that is not a good course to follow!

Thanks for the updates - think of you all often.

Donna

I have many animals and I have never encountered a vet tech with an attitude like that so I would report him and I bet it won't be the the first bad comment he's received. maybe, just maybe, this one will be the straw that breaks....

Amy, I got really angry reading the story about how your mom was treated too. I can't believe a doctor would dismiss what happened to her as anxiety when it was so serious and then let it happen again. And then she has to go through such treatment in the ER! She is such a trooper, and has been through so much. This is the last thing she needs.

About the pain meds, please remind her that she posted to me over three years ago when I was in treatment and resisting taking the pain meds and told me she had felt the same way when she was in treatment but that I really needed to take care of my pain and not be afraid of them. I wish I could find that post because she needs to take her own advice now....

I will keep those cards coming as long as she is fighting this battle and keep her (and all of you) in my prayers.

Nelie

Amy,
Is this at John Hopkins or at your location at VA Beach? It hurts to think you are treated like that but I was telling my dentist about how I was treated in radiation and he could not believe it. He said he thought you would be coddled there because you needed so much attention, but just the reverse, I think they get too hard and cut off from the world. Tell him he could be in the same shoes one day. I said that to anyone mean. HAHA
Please tell her I agree that the meds are what she needs right now. I could not breathe either for a couple of days and it is downright scary.
Makes me mad about the 3 more times stuff. Maybe not after the scans.
God Speed,
Debbie

It was at our local hospital. She has always been treated wonderfully at hopkins. I wish we were able to do her chemo there. It's just better for her to be home.
Amy

This post has me teed off at that Nurse. I would do my best to have his job and when I felt better to have a piece of his A-- too. I have never had a bad nurse yet and have been treated with respect by each of them. Your mom is in my prayers.

When my father was moved from the surgical trauma unit to the surgical step down unit I encountered one nurse that I felt like treated my father and I poorly. I expressed my concerns about my fathers condition to the nurse, only to have him blow me off. Because it was early in the game I felt like I had to let go because dad was in capable hands (after all he was in a hospital) and I felt like because he was my father and I cared so much for him that no one could take care of him the way I felt like he should be cared for.

The next morning, 12 hours after I left him at the hospital in those "capable hands", we received a call letting us know that dad was in congestive heart failure and they were considering life support. They had drugged him with Ambien during the night and tied him to the bed, for their convenience. (The agitation he experienced didn't help the heart condition that previously existed) Dad's version of the story was that he kept asking them to help him to the bathroom because he needed to have a bowel movement and he thought if he could get in there and just have a few moments of privacy that he would be able to go. They were aggrivated because the heart monitor leads kept coming off and rather than spend a few moments trying to find out what was going on drugs and arm bands became the answer to their problem so they would not be bothered. It was the ENT team that came in the next morning and found him in such a grave condition.

Just because someone is a health care professional doesn't mean that they are qualified to deal with patients nor does it mean that they have compassion for the patient or their families.

Take your complaint to the Director of Nursing of the hospital. I did. I went directly to the top without climbing the ladder. You better believe that when I started talking they started listening. They do not take this kind of thing lightly, but if you don't bring it to their attention they have no way of knowing about it. Every complaint will be investigated and maybe before that health care professional treats another patient like they did your loved one they will think twice before they do it again even if they were not formally reprimanded.

Hospitals have a Patients Bill of Rights. When making your complaint cite specifics. Patients families are also covered in these Bill of Rights.

I've ranted enough. Good luck.

Joy

Hi Amy, Sure don't like hearing this about Minnie's battle- makes me sooo mad! Please tell her that she is in my thoughts daily and I know what kind of fighter she is-and your family is-
You have so many friends and so much support and love here. Amy in the Ozarks

Mom had another bad day today. She was throwing up and sick to her stomach all day. She is so weak it breaks my heart to look at her. In the past whenever anyone asks her if she is okay she always says yes even when it is obviously not true. Today she answered no. She said that if her scans come back and it shows that the chemo isn't working enough to make it all go away she isn't going to continue treatment. She said an extra year isn't worth being this sick for 6 months of it. I can't say I blame her. If it's this hard for me to watch her be this sick, I can't imagine how it is for her. I also don't know how or if I should push her in either direction. I just let her vent and made sure she knew it was her decision.


Her medical oncologist is almost positive the spot on her lungs is cancer not scar tissue as the people at Hopkins said. He's so sure that even on moms paper work at the chemo center it says she is being treated for lung cancer with metasis on the neck. I don't understand how they know if it has never been biopsied. Even the 3 spots they were convinced were cancer that they actually did biopsy came back negative. There were two others that they were convinced about but they couldn't reach them for the fine needle aspiration. Are the docs being lazy in not doing biopsies? Her oncologist said that the new scans will tell us about the lungs because if they shrink they will have been cancer. Our last visit with moms ent ended with him telling her there was nothing he could do and that she needs to do chemo to try to maintain life for as long as she can. After the visit we went downstairs for the biopsy's and they said they were negative. How can they just not know? Should I be pushing harder? I'm young and I don't think they take me very serious sometimes. Mom just doesn't have the energy to fight.
cancer sucks

Amy, I am so sorry and so sad when I read the latest update. When is Minnie going to have her scans? I really hope they show that all her suffering has been worth it and the cancer has really gone away or at least is showing signs of going away so that she can see it's worth it to continue. I can't blame her at all for not wanting to be sick all the time-especially if it isn't buying her much in terms of extra time. Perhaps when the worst of this latest chemo wears off she will feel differently, though, especially if the scans show the chemo is working.

Based on what you've said, I think at this point it is totally up to Minnie how hard she wants to fight this. What will happen if the scans show the spot on the neck is gone or has shrunk but spots on the lung (which this one doc thinks are cancer) NOT shrinking? That could mean it IS scar tissue--as they said at Johns Hopkins. It seems to me that at that point they should try to do another biopsy to answer the question once and for all.

I don't think some docs take their patient's questions seriously enough no matter what your age, but keep asking and pressing for answers on this. At the very least Minnie needs more firm information about what is going on to make her decisions about future chemo.

Please let us know the dates for the scans so I can send some special prayers then. And give my love to your mom.

Nelie

I have been reading all this for some time now and this is getting on my head !

Amy ,What the hell do the doctors mean by guessing that spot on the lungs are Cancer ? I would suggest you to please take a stand here and ask ur doc to explain things .

I dont know the past but have you taken any other docs opinion ?
Trust me its always better to have a doc who atleast have time to talk to you and understand your questions.
It seems to me that all your hospital visists have been kinda business for the medical team rather than treatment.

You are doing a good job by fighting back but its matter of life and death, so your stand is correct, Never hesitate to take second opinions and never feel your expecting more from medical team may that be your doctors or other staff.

As for your mom she is brave woman, hats off to her courage.
Please do take care of her and yourself and dont give up on anything !
You both are there in my prayers

Dear Amy.....and the rest of you girls...and your Dad....and your grandmother...and our dear Minnie. What a very difficult time for you all. You all play a different role in this fight, and I am very proud of you all, mostly you, Minnie, for giving your all to this fight.

You're right, cancer sucks, big-time.

My prayers will be with you daily for strength and courage and clarity and, hopefully, good health.

I "listen" every day, as many, many do, but I don't post often. Please know that we are here behind you whether you "hear" us or not.

XOXO--COlleen

I was told by a well respected MO before I was Dx'ed with cancer that if my swollen nodes shrank due to the antibiotics he put me on that I definitely did not have cancer. Two weeks later they had shrunk 1/2 in size and he congratulated me, shook my hand and said "you don't have cancer!!" Two months later and 2 more doctors and a FNA I began my Tx for Stage IV SCC. MY point is a biopsy is the only way to tell for sure if somethings cancer so hopefully they will stop guessing and do it.

Hang in there Minnie!!!

Hi Amy- My thoughts and prayers are with your mom and your entire family. Don't let the doctors intimidate you. You might be young but you are certainly not stupid-don't let them treat you like that. I've been blown off by doctors myself and have learned to speak up if something doesn't seem right. If you don't "get" what they are saying make them explain things until you do.I know that medicine is not an exact science. My husband has a rare case where the primary cancer has shrunk but the metastasis to the lungs has increased. Go figure. Anyway, best wishes to you all, Sue

I agree with David. A biopsy is the only way. Your Mom has had
enough of this foolishness. You hang in there for her and do not
let her give up without a fight. This has just made her so weak, that she needs a little help. They have got to stop quessing with her life. I am so sorry for you and Minnie. You are in my
thoughts every day. Ask for a second opinion her.
God Bless,
Debbie

Amy:

Im so sorry that you have to go thru this with your mother. Being young shouldnt be a reason for doctors to dismiss you. If it would make you feel better, try to take another person along to the doctor appointments. That way if your mom or you miss something the doctor says, then the third person can be there writing everything down. It might also help for just plain old moral support for both you and your mom.

Minnie is very brave and I know how bad treatments and the side effects can be. There were a few times that I was ready to quit my treatments too. Please tell her we are all praying for her well being. She has gone thru this before and can do it again.

How is her nutrition? Is she getting enough liquids to stay down? Did ashe get a peg tube? If her nutrition and liquid intake is down that could be why she is feeling so poorly too. Chemo makes it pretty difficult to keep things down sometimes, is she taking anti-nasuea meds and pain killers? All these things may help her to feel a little better.

Best of luck with everything, I am saying prayers for Minnie and your whole family.


Christine

Amy:

Hows your mom? Is she doing any better?

Hello Amy,
I hope you will please keep us informed about your Mom.
I think about her all the time. I pray she is holding
her own. She is a strong woman. Please let her know
we are thinking of her.
Debbie

I've been thinking of her everyday too. Hoping the worst of the sickness from the chemo is over and maybe she is gaining back some strength.

Thinking of you and your sisters too, Amy. How diffiult it must be to see your mother go through this at such a young age.

Nelie

Mom is doing good. She is three weeks out from her last treatment.Her energy level is up. She still gets a little dizzy but the vomiting has stopped. The heat here is keeping her inside. It is about 95 everyday with incredibly levels of humidity. Mom has a lot of stuff going on next week so I hope she will be feeling even better. She still coaches the high school's cheer team and she has try-outs, camp and the t-shirt tie dying party.
She is supposed to have another on aug. 8th. She had a ct today to check and see how the chemo is working. We are going to see what it says then make some decisions. I have tried to get mom in with her old ent but he won't see her because she went to hopkins for her surgery. She says she doesn't trust the doc at hopkins now because he obviously didn't treat her as aggressivly as he should have (not doing the neck disection or doing chemo back in october didn't even do the free flap).
I'll let you guys know when we get the results and where we are going to go from there.

Hi Amy, I am so glad your mom is feeling better. That kind of heat would keep me inside too! This is the time of year when I'm happy I no longer live in the South. A hot day here is in the 80s and it always gets cool at night.

I'm disturbed to read she doesn't want to see the doc at Hopkins now, though I can see why she would feel that way given everything that happened since October. I hope she finds a doctor somewhere she can feel comfortable with in terms of getting advice about how to continue treatment.

And I am REALLY hoping the CT scan shows that the area that the chemo was supposed to get rid of is gone gone GONE--or at least well on it's way to being gone so there's some hope if she does more chemo. But whatever the results are, Minnie is in my prayers and I know in the prayers and thoughts of so many people here. Please do let us know what she decides to do when she gets the results.

Nelie

Amy:

Thanks for the update, its great to hear positive news about your mom. She is such a trooper, dont know how she is able to manage the cheering. Its really wonderful to know she has the energy to still be so involved. Minnie is really an amazing person, hope she continues to improve.

Hello Everyone,

First, sorry I haven't been posting but the chemo is really kicking my you know what. I don't want to post when I'm feeling so negative but I see that Amy has kept everyone up to date. I don't know what I'd do without Amy. I have plenty of people to care for me but it's Amy that I trust the most. She's always here for me. My husband has to work so much and the other girls do what they can but it's Amy that has taken on the role of main caregiver. I worry about her doing it but she insists. She just graduated from college, she should be out there making her dreams come true. Plus I hate having her hear bad news from the doctors. She's trying to take care of me and I'm trying to protect her from the reality of this disease.

I'm feeling stronger every day but still get dizzy when I stand up to quick. I also get tired alot easier but I sleep when I'm tired so I am listening to my body. I'm working on my swallowing each day and can swallow water really well now, even though I don't love water. The water helps keep the extra saliva under control, I'm so sick of that part. I always have a tissue with me, afraid I'm going to drool and not know I'm doing it!

My cheer team starts back up for the new school year on the 1st of August, then they have camp on the 4th and 5th. I'm excited that the timing is right when I'll be strong enough to be a part of it. Those girls are so important to me and have been with me through this illness so no worries about how I look or talk with them. This year all three of my youngest girls will be on the squad and we'll compete in Florida the beginning of January so I'm very excited about that. God willing my scans will be good news and I'll be here in January.

Hope all of you are doing great and having a nice summer. Love to all.

Minnie

Yea Minnie,
Welcome back. Slow healing is frustrating, but then you realize how much better you are than a few days or weeks before. It is good to hear that you are getting back to normal routine.
You are indeed fortunate to have Amy to help. We have appreciated her updates.

Minnie:

Its nice to see you feeling well enough to post. You are very fortunate to have such a wonderful daughter by your side thru this. Hope your scan comes back showing improvement. Keeping you in my prayers.

Hi Minnie - You always have the unending support of OCF folks AND that wonderful family of yours! That's a lot of good thoughts and prayers for your knock-this-cancer-out-for-good team! Where will you be in Florida in January? We would love to come and cheer your girls on! We are on the west coast of FL.
CLEAR SCANS! Warmly, JaneP.

Minnie,

Lets hope you get over this crap real soon but don't rush to do to much. Also have you checked your BP lately as it may cause the dizziness.

Minnie,
It is oh so good to hear from you!!! So glad you are doing better.
I check the site all the time just to keep track of your progress.
Positive thoughts going to you on the scans!!
Take care and it is so good to talk with you,
Debbie

Welcome back to the boards Minnie - and I agree, your daughter is an exceptional young woman. Glad to hear you are feeling better and know you will be the one kicking butt in no time at all.

Donna

Ahhhhh...I feel so much better just knowing that you are up to writing to us again. I know that those girls will welcome you back with a thousand hugs. How wonderful to have that to look forward to. You go, girl! You are my hero! XO

Minnie, It's great to see you posting yourself here, although we are all very grateful that Amy has kept us updated when you could not.

When do you hear about the scan results? I want to send some specially strong prayers that day.

I just got relesed from the hosptial after the cornoidectomy--they only kept me one night--but I am totally out of it on the pain meds so I will post an update about that another time. Let's just say that right this moment, I am back to spitting out icky post-surgical phlegm myself, and owrried about drooling without being aware I am, so I hope it helps to know you have a sister in drool. Yuck.

Nelie

Minnie

I too HOPE you get those ALL CLEAR scan results !! So glad your cheering starts up soon and you have that Postitive to look forward too !!! Actually by the time I write this ..camp is over !1 LOL Kay goes to camp in the pocono's on the 16th.

My fingers are crossed for you !! And KUDOS to Amy to being such a remarkable young woman ..yet how could she Not ..LOOK AT HER MOM!!!

Any updates on Minnie? Hoping she is well.

I've been thinking of Minnie too. She must have had her scans by now and I'm hoping they showed the chemo was working. Anyway, if you are reading here Minnie (or Amy), you're still in my thoughts and prayers. Nelie

Minnie, I hope you got to go back to your beloved cheerleading squad and share your inimitable brand of power with them! I hope that by now you are just too busy getting well to write.

Cheers!!

XOXO--Colleen

Hello Friends,

It's been a rough few weeks but I'm finally getting around and even went to cheering practice yesterday and I'm going again on Thursday. I'm totally bald now but I've gotten used to it, so have the girls. I still wear something on my head when I go out, still got a little vanity left.

My scans showed that everything but one spot in my neck is gone. That spot has shrunk alot but it's not gone, so he told me I am in partial remission. He also told me that my lungs were clear and that I had quite a case of pneumonia that scarred my lungs. So, I'm going to do four more chemos (yuck) changing the taxotore to taxol, hoping that will eliminate the respiratory problems I was having with each treatment. He said once that one spot is gone, he'll call it remission and then we just wait to see when it comes back. He said that is usually does and we do chemo again, trying to keep it under control and keep it from reaching any major organs. I am well aware that I'm living on borrowed time but we just take it one day at a time and live in the moment. It hit my mom pretty hard to hear the doctor talk the way he did, she has this idea in her head that they can "fix" me and I'll good as new. She finally understands that it isn't going to be like that. I hated seeing the sadness in her face. Me, my husband and girls are used to all of this, she's not as used to it.

So, for now all is well. I go for my fourth treatment this Friday so I'll be down and out for a bit then I'll be back to say hello.

Hope all of you are enjoying these last few days of summer! My girls started back to school on the 25th and the house is way to quiet. My husband and our 17 year old (Mercedes) are rebuilding a 1965 Falcon, you all should see it. Looks like a hunk of junk to my eyes but to him and her it's a treasure.

Love to all,
Minnie

Minnie, its nice to hear from you. Best of luck with Friday's treatment, hope it doesnt hit you too hard. Its so hard going thru chemo.

Im really sorry to hear that there is still one spot left. At least the chemo has been working and has shrunk the tumor and your lungs are now clear.

You have always had such a positive outlook, glad to see you still do. Enjoy the cheering, thats always lots of fun. Sending positive thoughts and prayers your way.

Minnie-It always seems to hit the parents of patients so hard. Even my mom keeps talking about "miracle cures" for my husband. My father in law even went so far as to tell his sister that Neil didn't have cancer in his lungs anymore when that's not the case-he just had an infection there as well. I try to put myself in their shoes. it must be so hard to see your child battling this disease.

If its any consolation, Neil's hair is growing back quickly after he stopped the Taxotere. He was as bald as a billiard and now I think it's growing back thicker and darker. See-there is an upside to chemo!

Keep on cheering, Sue

Parents can be like that about all sorts of things. When I was visiting my mom a couple of weeks ago, even though she has had three years to get used to my swallowing problems, she kept forgetting and offering me food I couldn't eat! I just put it down to her wishing I could eat, and being a mom.

Minnie, it's great to see you writing here. I'm glad the first round of chemo got rid of most of the cancer and hoping and praying this next round gets rid of the rest and keeps it away for a good long time. Glad that you are getting out and doing the cheering in spite of everything and able to enjoy some of the summer.

The classes I teach don't start until next week but I have lots of extra prep going on for a variety of reasons and I am also assisting with student orientation which is over this weekend so it won't be a very restful weekend for me. So summer is over as far as I'm concerned and there is already a chill in the air in the mornings here.

I know a couple of people who said their hair grew back thicker and curlier after chemo and with no gray hairs. So hang in there. I'm keeping you in my prayers and sending wishes for complete remission and beautiful hair your way.

Nelie

Way to go Minnie. Man I hope this stuff kicks your cancer back to the beginning of time. I hope your squad realizes what a great leader you are.

Minnie,

It's great to see you posting and I am so sorry to read how things look for the future.

If there is anyone that can prove the doctors wrong, it's you. I know that you won't give up and we will all be praying for you to have good results from your latest chemo.

Jerry

Minnie,
So glad to hear from you! I am glad you decided to have the
extra treatments even though it took a lot of courage on your
part. It will go away and no one can read the future, not even
the doctors. You will make it through as you usually do!
I bet it is quiet at home now, but you have your dog, as I remember, to keep you mucho company.
We just joined a doggie park that is totally fenced six acres and it is the first time I could set my husky free!! I had so much fun with that! Dogs are such good friends to people.
Please take care and enjoy your girls. This time of year is an
exciting one for football and cheerleaders. Oh, those were
the days!
I will be thinking of you and hope to see you post again soon!
You are so brave!

Debbie

Minnie,
You have been a pillar of strength and reason for many who have visited this site. I know for certain you inspired one Irish dentist cancer survivor to believe in the strength of the human spirit.
It's great to see you posting and I am praying that your treatment is successful.
Keep that everpresent positive inner fire burning.
Hugs!
Mike