[trainier2020]

VENTING

by trainier2020 on Thu Jul 21, 2011 10:45 am

Read this don't read, respond don't respond. I am just venting, venting is healthy so I am told.

I am sick of my disease! I was diagnosed two years ago. After my first auto SCT I on July 22, 2009, I fully believed without a single doubt I would be done with this sh!t! But no, I had to have a second auto, three months later nothing. Meanwhile, my while has taken the toll of two SCTs. Onto all the regular multiple myeloma meds, nothing really worked for more than three months and now I have chromosome and all of the changes that have turned my multiple myeloma into something pretty darn untreatable. Now my third and final SCT, allo, perfect match with my sister's blessed cells. Same thing, three months of some progress and now nothing. On top of it all I developed a bad case of GVHD and ended up in the hospital for 10 days. I AM a lucky one here, the antis-everythings and steroids worked and now I am have steroid induced diabetes. Finally getting the hang on this one, learning the process. It's not as complicated as I first thought.

Now to assembly my team for the new multiple myeloma I have. I will not accept anything but excellence and if don't receive what I want, the answers, respect, etc. I am moving until I find a doctor is working for me NOT THE GODS OF RESEARCH. I need someone that will look at me in my face. After all if we don't get our sh!t together, my life is going to be cut off and I want two more years at least, if not five! I insist. If the staff, nurses, receptionists don't understand this, then they must be educated. Because of a nurse and my doctor who was anxious to go on his vacation, my oncologists in my home town...Corpus Christi, supposedly the top in his field in CC, told the nurse to have me get OTC cold medicine, the next morning the GVHD blew up! If he had just seen me, looked at me in the face, had someone see me, I am sure much of what I had gone through would have been avoided.

Now I am rebuilding again. My body this time around feels like nothing. I have no, zero strength in my lower body and it really pisses me off.

DEMAND THE BEST, THE BEST ANSWERS, THE BEST TREATMENT AND RETURNED PHONE CALLS!

I just had another run in with an RN at the Endocrine clinic, stating he did not have my phone number so he could not call me to reschedule my appointment. hmmmmmm....I've never had this problem in the two years I've been at MD Anderson. My online profile has all my info, my phone number has not changed in seven years. He ended up calling my daughter and she tried to give him my number, he said he could not take it, I had to call him! Kingsley at MD Anderson is the biggest A$$HOLE I have ever talked to in my life and then he hung up on me....this is a RN by the way. Needless to say this is now an escalated problem now. Just want I want to be handling now on top of all the other important things I need to be doing. Seriously!

I swear, can they make it any harder to try and remain calm, cool and collected, at least while I receive the care and treatment I need to find some kind of comfort and ease from constant pain??? I am a normal person who has to deal with getting taxes done, filing for help with co-pays, which I have to have done by July 31, 2011, so I can continue to receive the drugs when the co-pay is $4,000 and $5,000 a month. Do they not know?

I have hate in my heart at the moment.

[majolica]

Re: VENTING

by majolica on Thu Jul 21, 2011 1:13 pm

Hey,
Vent all you want!!! You have every right to get upset. I can relate to all your disappointments and mishaps... all too well. But, I also had a funny lesson. I was throwing a tantrum a couple of weeks ago. I keep forgetting I have bones of a darn 90 year old person. The pain in my leg ! Then a quick reality check. So, I guess you know when to lick your own wounds. We all have to accept that we all are humans and we all make mistakes. Stay strong!

[reppans]

Re: VENTING

by reppans on Thu Jul 21, 2011 8:46 pm

I thought I was the only one who wanted to vent. My husband was very healthy. Checkups every six months. Blood test showed protein spike leading to multiple myeloma diagnosis in Dec. 2010. Velcade didn't help. Missing 13 chromosome. Went through 4 days of 24/7 chemo at hospital, hoping for stem cell transplant. Released from hospital after first 4 days of chemo, collapsed at home two days later. He was gone. Devastating loss to his loving family. No call from doctor to explain what may have happened. Doctors need to be more open. When they tell you the bad news is you have it, but the good news is there is treatment for it. From my experience with this disease, the treatment is devastating with not a good end result.

We miss him terribly, but he would not have wanted to go through life with this debilitating disease. I hope science comes up with new treatment for the people suffering with multiple myeloma.

I had never heard of multiple myeloma until his diagnosis. It is a terrible, terrible disease.

[trainier2020]

Re: VENTING

by trainier2020 on Thu Jul 21, 2011 10:37 pm

[quote="reppans"] Released from hospital after first 4 days of chemo, collapsed at home two days later. He was gone. Devastating loss to his loving family. No call from doctor to explain what may have happened.[/quote]

I am so sorry for your loss. It really burns me to think the doctors did not offer you any after care. I am so sick of doctors, their staff, the patient advocates (who are suppose to be on your side, well ha-ha-ha.) They should be called the CYAers!!! I cannot imagine what it must of been like. So fast. So freaking fast. WHAT IS THE DEAL WITH YOU DOCTORS!!!!!

I have take my SCT team and exclude them from the bad bedside manner doctors group however. Now that I have been with them for two years the ups and downs and the reality of my case is not a good one and they all know it. They manage to make me feel cared for always. Dr. Parmar at MD Anderson, Randi my PA and Stephanie my RN are so very kind to me. I love them. I still hope something changes, I think I will always have hope, even if I am so pissed off.

I am only 54 years old. I used to be a bit of a looker. I used to go out, have fun, work, travel for work. Get flirted with, asked out to dinner. Boat, swim all the things any one would want to do. Now I cannot get out in the sun. I freak out when the sun touches my skin. I can almost feel the GVHD activating. Texas sun is so hot. I have to ride the motorized wheel chair to buy my groceries, which is fine and fun and a leisurely way to shop. But I am sad when I see the reality of my situation. I just had my big blow up of GVHD, very scary. I am so very tired.

I have a daughter who has my first grandson, love him with all my heart. My son and daughter-in-law are expecting my second...a girl in December. My grandson owns my heart. I will post a photo.

[KenDick]

Re: VENTING

by KenDick on Wed Aug 31, 2011 8:57 pm

You should come up here to Dallas and see my doc at Texas Oncology. My doc is Dr Olivares. He is wonderful. He will look you in the eye and tell you the truth.. Just a thought..