Wellness

[Gracies Mom]

Hi Ladies!

I am having a needle biopsy of my abdomen this coming Wednesday, Jan 25th. Had pre-surgical blood work and vitals yesterday. Will get the results when I see my oncologist on Feb 1st---and so---more waiting to find out what, if anything, is going on with me. This has been going on since I had my last PET scan on Nov 30th---had to wait until Dec 30th to have a definitative MRI--the PET showed 3 new masses on the right side of my lower abdomen--but the MRI only showed one that is 1.1 cm--no one can say why the other two disappeared! Or what they were!

And so...after the MRI..had to wait anorher two weeks to get an appointment for the needle biopsy--was supposed to be two days ago, but no one told me I need blood work before having the biopsy--no one offered to schedule it--so I could not have the biopsy and it was pushed ahead to this coming Wednesday----the staff seems disorganized--I am disappointed in the way my case is being handled--I thought I fell through the cracks and was forgotten about. If this facility wasn't a world-wide speciality cancer hospital, I wouldn't still be using them. That being said...I am stressed and frustrated to the max..so is my husband. On top of being scared.

Thankfully, our dog Remy is much better and just about over his kennel cough--two more days of antibiotic left. Our neighbor has been watching Remy when we have to go to the cancer facility (it is 1 1/2 hours each way)--she has been a blessing--and Remy loves her. One less worry--she takes care of him as if he's her child. Joe and I didn't know how to show her how much we appreciate her--but then her coffee maker broke (she loves her coffee!) and she could not afford to replace it---so we ordered one for her and it supposed to arrive tomorrow--she will be surprised! That was a good idea, right?

Would appreciate some prayers on Wednesday. I was told they will sedate me for the biopsy--I once had an abdominal needle biopsy 7 years ago (yes, it was positive for cancer) without anesthesia and it was BRUTAL--so am glad times have changed and they take into account the patient's comfort.

Will let everyone know my results when I do. Thanks for the friendship and encouragement through these last years--you ladies are the best!

Big hugs to all,

Gracies/Remys  Mom

[embgm]

Gracie's mom you have every right to feel disappointed in the way you are being handled. Delays are difficult to handle in these situations. I'm sorry this happened to you. The coffee maker is a great idea and will surely be appreciated by your friend. I will keep you in my prayers! Em

[Gracies Mom]

Hi Em!

Thanks for your kind words! And the prayers!!

I'm glad you think the coffee maker is a good gift--insread of a gift card or something like that. It's hard to decide what's best to show appreciation to someone who is doing so much for us, but I think we nailed it. Will know later when the coffee maker arrives at our neighbor's doorstep.

I'm a wreck--can't stop thinking about the needle biopsy (as I had a lousy experience last time) and what the future might bring for me. Maybe I'm making too much of this? I've always been a worry-wart...but this time feels different...maybe it's all of the waiting I've had to do and all of the time I've had for my imaginaiton to run wild. I would not wish this torture on anyone.

Hope all of you are doing well!!

Big Hugs,

Gracies/Remys Mom

[wagirl]

@Gracies Mom --of course you have all the good luck I can throw your way!! The waiting........dang-- it just drives me insane!!! but at least this isn't 2 months out!!! I would certainly tell your dr what a run around you have had trying to get this procedure done--he has NO idea what the front office does--and he should know, in my opinion---went thru horrible screw ups at the hospital after my ankle surgery---they lost me in the computer system!!! Had to spend the night in the post- op ward instead of in a room--never got fed either!! 

I think getting your neighbor a new coffee machine as a thank-you is the is best!! and glad Remy is on the mend too. 

Glad you will be "out" for the biopsie---now you have a list of questions you need to always ask before any test/scan/ procedure----

good luck!!

[JackieHN]

Your going to be just fine with the needle biopsy. Not to worry about that. As far as the waiting. It is what it is and none of this means you have cancer again. How many bloody biopsies have I had. The first one showed I had cancer. The other 3 were negative. One radiologist was convinced I had cancer again. It was fibrocystic breast tissue. 

I'm going to say this and I hope you will listen. Two of my friends pulled out of Sloan because of the poor care. They went to NYU. Sloan doesn't offer anything different from a good cancer center or medical center unless you are going on experimental drugs., All of these Dr's are on the same page and the protocols are all the same. This comes from my oncologists mouth. She said we are doing the same thing as sloan. 

I know you are bouncing off of the walls and I don't know what to say to pull you off of them. I'm going through the same thing with my MRI next week. We'll bounce off the walls together. 

Coffee maker great idea.

[JackieHN]

Had to clean up that reply. I have a trigger finger which screws up my typing. Of course i should have checked it before I posted. The Verizon guy is coming today and I had to do some things. Took a break to type the reply

[Gracies Mom]

Hey Jackie....

Thank you for your insight--much appreciated. 

As for dealing with Sloan---I went there because the hospital and doctors I was seeing in NJ were of no help once my cancer spread. Other doctors assumed I needed chemo, but I did NOT--my oncologist at Sloan suggested I try Femara (letrozole) to stop the cancer from growing and spreading--since my tumors were estrogen positive--at that time this drug was only used in breast cancer after treatment--but she was using it off-label--for her patients with estrogen positive uterine cancer--and it has worked beautifully for me for the last 7 years---which is why I'm shocked that something abnormal showed on my PET scan this time--and now on my MRI. My ex-sister-in-law also ended up at Sloan for her breast cancer when Columbia Presbyterian didn't know what to do with her after a double mastectomy--should she have radiation or not? Their doctors could not make up their minds--so she took my recommendation and saw a Sloan breast cancer specialist. In the end, after much consultation, she has stayed with Sloan--did NOT have radiation per their recommendation--and continues to be cancer-free. If I do need experimental meds now, I'm in the right place--or maybe immunotherapy if need be? They have many clinical trials going on that could help me if my lesion is positive for cancer. This would be my 3rd recurrence--and I have faith in Sloan--their doctors are wonderful even though their office staffs are disorganized. They have a satellite medical facility in Westchester (NY), which is doable for me to get to--I am too far from their NYC hospital. Thankfully, they can do the needle biopsy tomorrow in Westchester--have to be there by 8am--it takes us 1 1/2 hours to get there and the weather is predicted to be crummy--but we'll give it our best shot.

I will keep you ladies in the loop.

Yes, Jackie...you and I can bounce off the walls together!!! It's nice having someone "holding my hand" through this!!

Our neighbor LOVED the coffee maker--it arrived yesterday--just on time for me to tell her that I need her very early tomorrow--have to drop Remy off by 6:15am so I can be at Sloan by 8am--she said it's fine--she loves Remy and wants to help---thank goodness!!

Wish me luck.........

Big Hugs,

Gracies/Remys Mom

[Pink123]

@wagirl  I can find you here.  I hope your ankle is on the mend and that you will soon be ok.  I reread my post and made a mistake.  My fall happened last September 8th and and I said I was in a shoe in September. LOLOL.  Sorry, I got into a shoe 3 months later which was last month, December.

I feel and understand all of us waiting for test results.  I've had issues.  Had colonoscopy/endoscopy last Thursday.  Doc shows me pictures and shows me something in my stomach.  It looked big.  I was upset he didn't take it out and only did biopsy in the area around it.  He said he will call with results.  I've been sick to my stomach ever since and was ready to throw up this morning it got so bad with the waiting.  They can make you sick with worry I tell you.

Well he called this morning and said it was nothing but a big inflammation of my stomach lining.  I was so relieved. But the WAITING IS HE**!!!

God bless all and hope your reports come back negative as well.

[Gracies Mom]

Hi Pink123!

Yes, I totally agree...the waiting is the killer! Only one time did I have an oncologist with empathy--she would call me within an hour or so of my having a PET scan just to tell me it was clear--she was wonderful--but she went to another hospital and then retired. She was the only doctor who understood my anxiety and did not make me wait for results---she was very wise.

So glad your results came back with just inflammation--that's terrific news--you must be so relieved!!

Here's a story for you--about four years ago I had a PET scan--saw my oncologist and was told something showed up on my liver---I was freaking out! Had to have a liver sonogram--it was clear.Was then sent for an MRI---that was clear. Later on I was told that the techs found a SPOT on the  actual FILM----I was fine!! But the hell I was put through was nuts--can you imagine?

This time I had a PET scan two months ago--was told that three "spots" were seen--I needed an MRI--here we go again? Well, two of those spots were gone when I had an MRI three weeks later--but one is still there--hence the needle biopsy I'm having tomorrow. Yep, I'm scared and anxious--been too long before I was able to have the MRI and two more weeks before a biopsy could be scheduled. And so, my story continues.

Anyway, am happy you are doing OK now--be well!!!

Big Hugs,

Gracies/Remys Mom

[JackieHN]

The needle biopsy will go fine. Your in our thoughts and prayers.

As long as you have faith in Sloan that's all that matteers. We have to feel secure in the care that we get. I went to my specific breast center because the head of it was the director in Sloan and was asked to open up a world class breast center in Brooklyn. The only place we could go to was Manhattan. That's all they do there is boobs. 

Pink so happy that your biopsy was negative and it was just an inflammation.