My mom had her stress test done yesterday, she failed. The cardiologist who was working with her asked her if she was in pain when on the treadmill. She answered no each time. It seems that the bottom of her heart and up the one side isn't getting enough blood flow. The cardiologist at our local hospital offered to do a cath test last night, she needed approval from ordering doctor(who is her cardiologist in Philly for the ok for surgery) and he said no. He said that he would call her Monday morning. For all of you who know what I've been dealing with at the onc's office with the staff: they hit another fly ball yesterday. The girl called to ask me if mom had her echo done again, dr wanted to know. That wasn't what was ordered!! I was so stressed and fed up that I told her that I couldn't talk to her. My question to you all is, have any of you gone through this? I know her heart has to be taken care of first, but I'm afraid for her for her cancer....
I hope this is making sense I slept for about 20 minutes last night. I keep telling my mom that this result found is actually a gift if you look at it the right way....you may have to bend down and twist a little to the right and strain your eyes to see it, but it is a gift. We didn't know about her heart, the cancer and god only knows what else may crop up!! She was a walking time bomb, she's going to be ok, this is just another speedbump on her way to recovery. Any advice for this caregiver would be most appreciated. It's difficult to remain positive, but I believe that any negativity will not help. She was soooo disappointed about her surgery being cancelled, and all I keep hearing in my head is when she turned to me and started crying, "Donna, I don't want to die, I'm not ready." I was beside myself and somehow managed to say very calmly, "Then don't. Start fighting!"

In the medical business they need to "tune her up" before they will proceed with surgery. This is pretty common when there is cardiac issues involved. The cardiologists and surgeons will have to work through this.

Is she at a CCC, can they do radiation and chemo only? Has that been offered as an option. Oftentimes radiation and adjunctive chemo is the firstline treatment for BOT cancer.

Hi Gary,
Thanks for responding. She is currently with Univ of Penn. He only offered extensive glossectomy, free flap and bilateral neck dissection, he didn't think at the time that she would need rad after. He offered no options at all. My mom was dx with BOT, stage II. I don't know size. I am exhausted, it's been a very long month...and today i was with her and she just seemed so lost.

Donnarose -I'm so sorry it's been so rough on you. But you still have to hear from the cardiologist in Philly to call on Monday so maybe there's a good reason for that and it just could be a positive one. Also the fact that the stress test cardiologist asked her if she felt pain during the test and that she said "no" is something that I would ask about if it were me. I've had zero experience with cardiac problems but maybe someone else has. And as Gary says, maybe she just needs a "tune up"! Sounds like the girl from the office must have been confused but I think I would have been upset, too, about the mix-up.
Donnarose, you have been so positive with your Mom, you really sound like a wonderful daughter and someone any mother would be so proud to have! But caregivers do get stressed out . I know I did and there were times when I felt I was the only one fighting this thing. You must take care of yourself, too, so that you can have the strength to keep going for your Mom. Maybe another motorcycle ride? Keep posting so we know what's happening, ok?

Hi Donna, I can understand why you're discouraged, it does seem like the hits just keep on coming. On the other hand, this is not something that you would want to be finding out during surgery. The cardiologist and surgeon will confer and figure this out. U of PA is a CCC and cases are presented to the tumor board to get input. You gave your Mom a great answer. Hang in there and Happy Mother's Day. Regards JoAnne

Donna,


Soory to hear things are so rough. When it rains it pours and I know some days it all seems so much more then we can even think of handling , but we can and we do and belive it or not you make perfect sense to me ! I know I have to be reminded often that I can and will get through it. Some days it is so overwheleming and like you said ...lack of sleep..I know that too..I wonder if that plays a part in it for us. Your mom is sooooooo LUCKY to have a wonderful daughter like you ...Just was you are lucky to have a mom who raised such a strong ,compasionate and Good hearted daughter ! As far as the Cardio question ..i dont have a whole lot of experience with it , I know they dont like to do surgeries on people with them ..And I know that the test ( not the ultrsound one ) EKG can give false positives ..My 14 year olds reads wrong aLL THE TIME ...It reads as though she has an enlarged right side and believe me it can be nerve racking ..But when we have the Echo ( ultrasound one ..I hope I have names straight.) It shows everything is OK. SO Wait to hear from the Dr and take a deep breathe ...I hope you and your MOM have a WONDEFUL mothers day !

Thanks AnneMarie, JoAnne and Sharlee.
I understand what each of you said, andI think maybe I didn't post correctly...I wanted formt he beginning for them to check mom's heart before she went to have surgery-my beef is that they never called to tell us something was abnormal, I called them because of ins and mri issues and asked what her results were, that's the only time that they said soemthing about her seeing a cardio because of the abnormal t-wave. I think it was unfair and to see my mom build up her strength-emotionally-day by day and then to hear her voice and see her expression when they said it was called off because something is not quite right with her heart. Her doctor never called to talk to her after they decided to cancel it....no one from the onc office called to see that she understood. I think I am just miserable about everything these days and probably spoiled from having very good doctors and specialists for my care. This waiting is difficult, to say the least.
I wish you all a very happy mothers day!

Yes ,


waiting sometimes seems to be the worst part. Atleast when you are doing surgery or Rad you feel like you are doing something !! BUt do me a favor ..better yet ..do yourself a favor...ready ?

Take a deep breathe and just Enjoy Mothers day today with your mom !!! (((HUGS))) to you .

Thanks.
I know you've read this before, probably said it yourself...I don't know how I would have made it thorough all this without this site. You all are my angels.
Enjoy tomorrow. I will once I get everything set up and the food is out.

Happy mothers day everyone...

Donna,

I feel for your situation...

Prior to the cancer diagnosis, my mom had a protruding hernia and wanted to get this fixed. Before surgery could be performed, she went through the litany of tests to prove she was safe for the surgery.

They found a major blockage of her left carotid artery. This had to be fixed first before the doc was willing to do the hernia. She went through with the carotid artery operation. Despite her frail body, my mom handled the operation very well. The surgeon came back a few days later to tell my mom that the surgery went well and that she could look forward to getting the hernia fixed in a few months and that clearing the blockage may have bought her another 10 years. Two months later (bam!!!) her T4 cancer was diagnosed. That was a huge blow to my mom.

This emotional rollercoaster is tough on the patient as well as the care giver. To this day (14 months later) my mom still asks why did this happen... Why did those tests to prove she was a safe candidate for a fairly minor outpatient surgery miss finding the cancer?

We had to twist the hernia doctor's arm to do the outpatient hernia repair after the cancer diagnosis... This done to give my mom a better quality of life.

My advice is to keep your mom focused on the next hurdle... Looking at all the hurdles in front of her she has yet to jump is too much and will only get her more depressed... Also, keep reminding her of the hurdles she has already completed... Remind her that she is progressing forward and celebrate her successes.

Paul

Hi Donna, Hope the food got out okay and that you've enjoyed Mother's Day with your Mom and daughters.

There's no question that they have been completely insensitive to your Mom's feelings on having the surgery cancelled. That's probably because they don't experience the emotional roller coaster. They don't know what that feels like so to them it's just following procedures.

I know it's frustrating but try to let it go and focus on the next hurdle as Paul said. This week it will be about the cardiac issues, then you'll get to the cancer ones. The waiting is miserable and I feel for you. Hope you get some clarity on Monday when the cardiologist calls you.

Regards JoAnne

Hi Donna,
I can't believe all the screw ups you are experiencing at HUP. Is she now going to see the cardiologist at Penn? I would assume there had to be a script for this so why did she get a stress test when they wanted an echo? They should be able to get you in for the echo and see cardiologist right away since she needs other surgery. PUSH FOR IT.

Meanwhile you need to take care of yourself. Get some meds to calm you down and allow you to get some sleep.

I feel so sorry for your Mom. Just when she gets herself all set for the oral surgery something else rears its ugly head. Hopefully, they can get the heart issue resolved quickly so she can get rescheduled.

Take care,
Eileen

Hello and thanks...again!! I am trying to remember what has transpired today...and it's only 2:07pm! We spoke with the cardiologist, he is with Presb hosp, he is doing a cath tomorrow...while I am acared I also have a sense of calm...hopefully not that 'calm before the storm'. I am getting a little more used to this wicked ride, though, still feel like I am going to be sick at any time. I haven't shown that to anyone else except you guys and Eddie. It's tough being strong, at least pretending to be.
I also set up an appt with a rad-onc in case tomorrow's surg dictates that what is currently planned for surg can't be done. Mother's Day was nice, it was nice to watch my mom with the kids, especially with Livy, my sister's baby. I think everyone who is down should have a little person reminding them how wonderful life is. I am overwhelemed at times but also so very thankful that we found out that she has both these diseases, I keep telliong her this, left untreated we could have lost her. I'm going to go outside with her now...JoAnne, we went out and spent about $200+ on flowers...working on them today. I just realized I have to get a neighbor in to water them, it would be awful to come home and find them dead

Absolutely get the neighbor to water those plants, you want Mom to come home to see how pretty they look and think about the 2 of you doing that together. Worth every penny.

Good luck with the cath tomorrow I hope it goes well and that the wicked ride slows down for you both. Glad to hear that you are also seeing the radiation oncologist. That may be an alternative option to consider. Not everyone gets surgery.
We all have sides of ourselves that we pick and choose who we show to. It's self protection.

Regards JoAnne

I don't know where to start....
she had the cath done yesterday, we found out that sometime in the past she has had a heart attack. She has some blockages, but the cardiologist said that they could be taken care of later, that the surgery for cancer is more important. He gave her a script for lipitor. He mentioned that there is a 15% chance of something happenening to her heart on the table, heart attack or fatal...15% seems like a lot to me. The more I think about it the happier I am that we have an appt with a rad onc tomorrow. I think I am coming undone...
for a laugh for anyone reading this... normally, whatever that means, I am a semi intelligent person. Yesterday when the nurse came in with mom's instructions he started reading them off, he came to the one about stairs....I have no idea where my brain was, I asked does that mean she can't watch a lot of tv? as in stares.!!! My sister and I laughed so hard she could barely breathe, even the nurse got to laughing, he couldn't look at me. I'm sure that they all got a good laugh out of me, and I'm pretty certain that the next time he gives someone instructions in regards to stairs,he'll think of me!

Dear Donnarose- finding ways to laugh is a good thing! What you all are dealing with is not so good and the stress is normal. Altho I don't know "percentages", I do remember John signing forms before wvery surgical procedure that stated there was a percentage of danger involved- it's just something we have to live with. Hee's a story you might relate to- a dear friend of mine, who is a very smart nurse with 30 yrs.experience is now caregiver to her husband with liver cancer. During a recent Dr. appt., the surgeon told them that he was going to remove 1\4th of Ray's liver- my friend, dazed, asked "and what percent is that?". She has shared that with all of us, laughing about it while pointing out that dealing with cancer will put your brain and emotions into a tailspin. STay strong. Amy in the Ozarks

Dear Donna, when you stop laughing at it is the time to worry. See what the radiation oncologist says tomorrow because doing that with chemo may be the best option under these circumstances. Always something - and when you get used to it then it changes again. Hang in there. Regards JoAnne

Hey,
Thanks. The rad onc said he thinks mom's best move would be to continue with procedure dr.w set forth. I ran into dr. w. today, he actually remmebered me and asked how mom made out? he was smiling and very congenial...shocked me to no end. i told him what she has been through--alll of it! and he asked me to contact the office for a follow up so that they could make sure that it was the best way to go. i was overwhlemed that he knew who i was. very tired...these appts exhaust me. by the way, loved the rad onc...he's dynamite!

Looks like things are finally falling into place. Although you don't have to like the doctors, it sure helps if you do. Mine doesn't have a great "bedside" manner, but he is a great surgeon. That's what counts.

You know where I am and you can call whenever.

Jerry

Hi Donna, he actually has an amazing memory for his patients. Of course you're exhausted, this is a draining experience when it's going as expected let alone when you are revising plans. Glad you liked the radiation oncologist, people really seem to like him. Sounds like they are looking at this from every angle. It's a CCC and they do consult with each other on the best approach. Get some rest.
Regards JoAnne

thanks