Littlegirl

Oh Carleen, my heart breaks for you and Keith. I'm so sorry those doctors in Chicago disappointed you and that they robbed Keith of his hope. I can't even imagine the range of emotions the two of you are feeling right now. I'm praying for you both and hoping that God and the doctors will give you a break soon and restore your hope! Hang in there, Karen

I just wanted to throw out this topic as it is something my siblings and I are trying to figure out. We've been going with my mother for all of her doctors appointments as well as my dad's (he does not have cancer but several other health issues as he is 80). Between general practioners, oncologists, pulmonary doc, gastro and other misc. procedures this has been alot of appointments, but we've always been able to have at least one of us kids there. (And most of the 7 in the beginning, I bet we were a bit overwhelming.) We want to be there for support in case there is any bad news as well as for memory help as my parents can get a bit confused or forget some things. My question is this....as caregivers do you all make it a point to go to every appointment? And those of you who are the patient...is it helpful to always have someone there or do you feel like you are being babysat or not in control? I know your first reaction is to discuss this with mom but I know she will ALWAYS say she does not want to be a bother so no need to join her. But I think she does appreciate the fact that she has a strong support system and if one of us did not join her I think it may be a bit sad for her. Today mom has a follow up from her EGD. And though I expect this to be a brief visit with no big news or change in meds I am going to go with her. Thanks, Karen

I'm so sorry for your loss. Please find comfort knowing he is in a better place and is not suffering anymore. Prayers for you and your family. Karen

I'm sorry that your mom did not get to live long enough to fulfill all her dreams and I am sorry this is weighing heavily on your mind. But as a mom myself I am sure her biggest dream was raising caring, loving children - which she obviously did! It is so hard to watch a loved one suffer so much and lose control and lose sight of all their dreams. But I think the hardest part is when the patient feels that their illness is having such a negative impact on all their loved ones. I know in my mom's case she just never wants to be a burden. Although I know she appreciates that she always has someone to support her at any of her appointments, or to fix a meal, or help out with housework...she hates that any of us have to juggle our schedules to fit it in. And my parents did not have any big trips scheduled but often went fishing with some friends of theirs, and I'm sure that mom feels guilty that they have not made it to the lake very often this year. (They did get to go once - yea!) I think the hardest part is when they realize that their illness is not only affecting their plans for the future but for the plans of thier spouse as well. And to be suffering in front of their children when their is nothing anyone can do to make it all better. But your mom would not want you to dwell on the negatives of this disease. She would want you to celebrate the life she lived and remember her abd how she was during her healthy years. I know this is part of the grieving process. Come and vent whenever you want to. Prayers that you'll find some peace. Karen

If your mom does not like the Ensure you might try Carnation instant breakfast drinks. My mom got to the point where she could not stand the Boost she was drinking so we started getting her the Carnation and she likes it much better. Karen

Connie, I'm so sorry your mom's hospital stay did not end on a better note and I am sorry you lost your mom. Please try to find comfort knowing she is in a better place and is not suffering anymore. Don is right. You did MORE than enough and the 'what if's' could drive you crazy. (And you know it might NOT have been the Loveinox that caused her decline.) Praying you will find peace soon. Take care of yourself! Karen

Linda, This is DEFINITELY where you need to come to vent these things. Just getting it out should help you feel better. I'm sorry that your mom is taking her frustrations out on you. My mom and dad have been fighting a LOT lately over totally stupid things (they never did that when I was growing up). And you just want to shake them and say "Lets spend the rest of your days here on earth in peace!" I'm sure this is something you want from your mom as well. Just try to be extra-patient with here. I'm sure she is angry that she even needs to make these decisions and would rather be making the decision of where to vacation, should she buy the pink dress or yellow one, or what should we have for dinner. And part of it is also a bit of denial. If we don't make these major decisions maybe its not really all that bad. Hang in there, you are doing a GREAT job. Just remember to take care of yourself as well! Karen

WOO HOO!!! Throw it in reverse baby! I know you and your family will have a great weekend celebrating! Karen

Prayers for your dad and a big warm blanket from the dryer for you. (I've seen you offer it before, decided it was your turn!) Karen

Carleen - praying that this situation is resolved quickly and that the two of you have a period of peace to catch your breath. So sorry he has yet another ailment! Karen

Cindy and anyone else taking Aciphex, check out the website or ask your pharmacist for a rebate. My hubby takes this religiously and his monthly co-pay is $31-32. We have been using rebates that we've gotten from the pharmacy and from being on a mailing list that is for $30. AND THEY DON'T HAVE A LIMIT TO HOW MANY YOU CAN USE. Can't beat that! Karen

Andrea - I bet there is a good chance the itching is from the hormones from the in vitro. Maybe try some Benedryl. Can't hurt, the worst that would happen is you'd get a good nights sleep! But I can relate to the anxiety thing. I've had issues with a strain between my shoulder blades and cringe every time I read that was a symptom from someone's lung cancer diagnosis. Couldn't be from working at a computer all day and spending spare time on the net as well! Hang in there, Karen

My mom has had issues with this as well. And its been nearly 4 weeks since her last radiation treatment and she feels it is getting worse, not better. Her doctor feels that she needs to have her esophagus stretched (I posted below asking who has experience with this). This eating problem has baffled us as she is unable to eat the things you would expect. Bread, mashed potatoes and noodles just won't go down. But she was able to eat nachos, french fries and other 'rough' foods. She was also eating alot of milkshakes and ice cream but now the cold food seems to hurt more. She's been eating alot of soups but it even hurts to swallow that. I made her a batch of broccoli cheese soup this weekend and will make her some chicken and rice to see if that goes down. Boost and Ensure are good too but mom got sick of those. (Actually vomitted a couple times and she swears it was not the chemo it was the Boost.) Talk to your doctor about meds that can help with this too. Mom is taking protonics and carafate to help with the acid backing up, and tried to use the magic mouthwash but she must be allergic to something in the mix as it actually GAVE her mouth sores instead of improving them. Good luck, Karen

Dear Carleen ~ Jumping in a little late here. Your words "I just can't do this" are especially poignant to me as I am hearing those from my mom right now as well. My wishes for her are the same for you. That God will take away all that hurt and bring you peace. I think you have NO idea how many hearts you have touched here on this board and I think you would be surprised at how many people probably pray for you and Keith on a daily basis. You will get through this. I am so sorry for your pain and, of course, praying for the best for you and Keith. Karen

My mother had her follow up visit with her oncologist this week. He did not review her results from the scan before her visit and the tech who did the scan did not have the original to compare it to. He sat and read the results and began to frown and shake his head 'no', and did not say anything for several minutes. (DO THESE DOCS NOT REALIZE THE IMORTANCE OF THEIR BODY LANGUAGE WHEN SOMEONE'S LIFE IS IN THEIR HANDS???) He said there was mention of the pleural effusion but no mention of the mass. He said they did not have the original scan so they did not know where to look for it. Call me crazy but the mass WAS 10 cm and I would think it would not have to be pointed out to the tech. We do feel good that at least we think the tumor has shrunk and nothing new popped up. However, we feel the tumor was too large to completely go away so quickly and wonder how competent the radiologist was. Anyway, mom is still having issues swallowing and feels it is getting worse instead of better so her oncologist wanted her to see a gastro doc. He said she probably has a constriction and just needs to have it stretched. The first 2 docs they tried to send us to did not have an opening until July so they got us an appt with someone that mom saw on Friday. This doc said that mom's throat probably just needed to heal and wanted to put a feeding tube in. We mentioned the onc suggested maybe she just needed her throat stretched and he said that does not work, and besides he would need to order a part to do that, blah blah blah. He said she should have had a feeding tube before radiation and he was VEY RUDE. He also mentioned twice that she would be asleep when he did this procedure so would not feel any pain. My sister pointed out that her pulmonologist said she should NEVER be put under general anesthesia due to her breathing issues and this doc yelled at my sis "I know what I'm doing." Needless to say we are looking for a new gasto ASAP. Mom is losing faith in all her doctors and is beginning to get discouraged. Does anyone out there have experience getting their esophagus stretched? We would GREATLY appreciate any input.

Hi Laurel, I feel we have alot in common. My mom is 78 and also is not a candidate for sugery due to her emphysema. My dad is still here but he has had many health problems lately and sometimes we think he is in worse shape than my mom. Mom's doctors have not given her a timeframe, but I know how aggressive this disease can be and given her other health issues I know her time here on earth is limited. Battling this disease does seem to make you appreciate the simpler things in life and appreciate the time you have left. I often think that a heart attack or stroke could have taken mom immediately and she would be gone now, so God has given us a second chance to make some memories and enjoy what time we have left. And after seeing how some cancer patients have suffered, if something takes my mom suddenly I will try to be relieved that she did not suffer. Don't be afraid to let yourself cry. You can't keep all those emotions pent up inside. Hang in there, Karen

My mom completed her last chemo 5/4 and last radiation on 5/9. She was having problems eating toward the end of her treatment and complaining of a 'knot in her stomach' (upper stomach, lower esophagus aread). I know this is a common problem that people have with radiation. And I know it will take awhile for her to recouperate. She is not quite as fatigued as she had been and has been keeping herself very busy (I'd say to the point of overdoing it), but the knot in her stomach is not getting any better, in fact she thinks it is worse. Has anyone else experienced this lingering effect after radiation and experienced it getting worse? Of course my fear is that it is the tumor causing her discomfort. She did have a scan done yesterday and has a follow-up visit with her doc on Wednesday. I know she has a prsecription for Protonix but don't know if she is taking it regularly. Thanks, Karen

Carleen - I am SOOO sorry this beast will not leave your family alone! Prayers for you and your entire family that you soon see brighter, happier days. Karen

So sorry Andrea. Praying that your next attempt is more successful! Karen

We have not had to call in hospice yet, but while at the hospital waiting for one of mom's procedures my sister (who is a RN) was chatting with the chaplan there about several things. The chaplan stated that most people wait too long before calling in hospice and that these services should be used much earlier. I know that hospice is a bit different for every location so I would say look into it long before you expect you'll need it, just so you know your options for when that time comes. Karen

Way to go Frank! You are such an inspiration! I bet that Bud Light tasted pretty dang good! Karen

Sandy, I have no advice on the Taxotere, just wanted to say I'm so sorry your daughter is going through this difficult time and I'm sorry that this beast will not leave your family alone.

HOORAY! So glad to hear the great news! Karen

Linda - I also suspected it might be from the diabetes. I know your profile states that your mom has diabetes, and I'm not sure if your dad was diagnosed as a diabetic, but medical issues can cause sugar levels to spike as well. (My dad is not a diabetic but when he was in the hospital with congestive heart failure it caused his levels to be in the diabetic range.) Hoping you are experiencing more pleasant fragrance now! Karen

Malou - I am so, so sorry for your loss. You and your family are in my prayers. Karen