January 2009
6 posts
I'm a "metal head"
YEAH!!!! Went in for surgery today and although the Doc was going to try to put a metal stint in my ureter he told me that he doubted that my body would allow it but HE DID IT!!!! Yes, I am the proud owner of a new metal stint which means that I will only have to have it replaced once a year rather than every 3 mos. the procedure itself was done in the operating room rather than the...
The luck of the Irish!
Gee what a surprise, the one disease I want to have, I don’t. My thyroid tests were in the normal range so looks like Weight Watchers and I will become good friends again next week. Don’t you just hate it! Although, I am soooo… happy with my scan results that I shouldn’t be complaining. I am truly blessed!
Got the Doc's stamp of approval
Saw Dr. Kauh (my oncologist) today. He is very happy with the results of my scan and my bloodwork. I don’t have to go back to see him for three months. At that time, I’ll have another scan. He said that we’ll do every 3 mos. for a year and then go to 6mos. He did send me for bloodwork with a suspicion of thyroid problems. I told him that that is every fat girls dream. He just...
YEAH!!!!!!
Looks like 2009 is starting out in a good way. Got my scan results. Looks like what they see in my pelvis is unchanged in fact they don’t even list measurements for it which they did when they first saw it. It is still showing some activity but very little. It is unchanged from my Oct scan. So, maybe that awful RFA, after all the problems it caused, really did work. I was so convinced that...
Scan Day
Hi! Yesterday was a long and tedious day. I left the house at 10:30 and got home at 5. Spending the entire day at Emory getting blood drawn and getting a PET/CT scan done. That’s not the bad part the bad part is waiting for the results. As you know after the RFA which was supposed to get rid of the tumor, the scan said stable to slightly improved so the BIG C is still there but I hope...
December 2008
4 posts
Happy New Year
Are you as glad to see 2008 go as I am? I’m looking forward to 2009. The only good thing that sticks out in my mind in 2008 was my son’s wedding. Other than that it seems to have been a storm of medical messes for me and my close friends. At least with a New Year you also have a renewed optimism. So, although my resolutions always revolve around changing my body, this year I plan to...
Things are looking up
Hi! Got good news from my bloodwork yesterday. My hemoglobin went up from 8.8 to 9.6 in one week. It’s still pretty low but is going in the right direction. Being a carnivore rocks! Speaking of rocks, my lucky daughter is going to Vegas on Fri. I’m so jealous! she and Trent and her other NIN buddies will be rocking out on Sat. night. Got the wedding pics back yesterday. Really like...
The Results
Got an email from my Doc. He says that my bloodwork looks pretty good except for my hemoglobin which is at 8.8 and 12-16 is normal. But I guess that losing all of that blood has to have consequences. I feel pretty good except for fatique and being out of breath which come from my blood being low. So, I do have some blood left there’s just not a lot of it. Time to eat red meat!!! Pat
I'm out of blood!
Thought that y’all might like to know that I must be out of blood because I stopped bleeding on Sat. Ten long days… I felt like a girl again, being visited by a very heavy “FRIEND”. Went for bloodwork today but haven’t heard anything so no news is good news. Let’s hope that I don’t have to go to Emory again till Jan when I’m scheduled for my PET...
November 2008
4 posts
Happy Thanksgiving
Well, spoke to my docs office today. Never a dull moment. I have been bleeding for 5 days now. Of course I practically had my bag packed to go to the hospital. I went on Fri to have my blood drawn and didn’t hear anything. I called today to tell them that I was still bleeding and what should I do. My oncologist called the urologist and said that since my counts were OK on Fri that they were...
I'm free till January
Saw Dr. Kauh on Mon. Things are looking good. He said that my bloodwork looked good and that I’m off till Jan. 5th when I have my scan and then see him the following week. I feel good and am so glad for the break. It will be Jan before we know it and then we’ll have to kick prayers into high gear since we’ll be looking at whether this cancer has spread or is again stable....
I graduated
Hopefully today was my last day in the “torture chamber.” Yes, Things went really well. the external tube has been replaced with a new internal “double J sint”.
I have to say that this was my least painful procedure. They gave me enough medication so that I didn’t feel it. After all of these torturous procedures they finally got it right at what Kit, my nurse, called...
Lazy Saturday
Well, the weddings over,the company has gone home and I’m back to the torture chamber on Mon. morning at 6:30 AM. the wedding was awesome! The bride and groom looked beautiful and everyone seemed to have a blast. I’m blessed to have a new daughter-in-law who is a lovely caring young woman who above all else, loves my son.
Today, Sat. was a lazy day. I’m still in my PJ’s...
October 2008
31 posts
My old Self
Just got back from seeing Dr. Kauh. My blood work looks good and kidney function is normal. YEAH!! The next step is in 2 weeks I’ll go back to the torture chamber for the doc to put dye in this tube in my kidney to make sure that there are no holes. If it’s fine then they will remove the tube in my back. The female Doc who did the last procedure said that it was very tough to get the...
I'm still a two bagger
It was a crazy day! I got into the torture chamber pretty much on time. They gave me some “happy” medicine which helped HOWEVER they were having a tough time getting the wire through the tube in through the ureter to get a sint in my ureter so that urine could flow in the customary fashion and I could lose the tube and bag. So.. It hurt like hell and they gave me some more “happy...
Torture Chamber Day
Well, It’s 5 AM. I probably slept a total of 20 mins. Nervous, who me? Been saying a lot of prayers that I’ll be coming home later as a one bagger. But I am prepared for that not to happen. There are worst things that could happen and I have friends going through much worse right now. If I thought that keeping this bag would make one of them better. I would do it in a heartbeat. Please...
Monday Oct.13th
“Columbus sailed the ocean blue in fourteen hundred ninety two.” Happy Columbus Day! Saw my oncologist today. He said that my blood counts and kidney function tests looked good. They have scheduled my visit to the torture chamber for this Wed. I have to be there at 6:30 AM. they will attempt to put a wire through the tube that I currently have in and try to pass it through the blockage...
Wed. Oct. 8th
Hi everyone, Thanks for the comments etc. This is kind of a fun way to keep up with each other. Well last night I was doing something in the kitchen and my tube caught on a kitchen drawer pull and I kept walking… OUCH!!! I saw stars and expected to see the tube out and blood. It was at that point that I decided that if the tube was out that I would just lie down on the kitchen floor and ...
Mon. Oct. 6th
Just got back from the doc. He was pleased with my blood count and my creatinine levels (kidney function). The next step is to try to go in on the 15th and to put a wire down through the top of my kidney into the ureter. They will try to get past the blockage. If they can do that then they will put in a stint to keep the ureter open and remove the tube and bag which protrudes from my kidney in my...
Saturday
Hi! I’ve got a BLOG!!! How cool am I?This of course is thanks to Niki and not any knowledge that I’ve acquired. I’m feeling better today. I’m adjusting to my “two baggerness.” Still tired but getting lots of rest. I have an appt. with my oncologist on Mon. afternoon so will let you know how things are going in the blood and cancer depts. when I get back from...
Thursday, October 2, 2008 1:16 PM
I’m home
YEAH!!! I’m home. As of this morning the 2 units of blood that I received yesterday must have worked because my blood counts came up and my creatinine (kidney function) came down. I have a tube and what they call a nephroscamy inserted in my left kidney so that kind of smarts but am feeling better and so glad to be home. So now I’m a” two bagger”. Hopefully...
Tuesday, September 30, 2008 11:07 PM
No Stint
Pat was rolled out of her room at about 8:00 am for the procedure where they would put a stint in her urethra. She came back to the room after 11:00 and they had not done the procedure. There was a blocakge. They had put a wire up the urethra but it was blocked from pressure on the outside —- possilbly scar tissue pushing on it. Plan B was to put in a dranage tube directly into...
Monday, September 29, 2008 6:41 PM
Emory Hospital: In and Out and……Back In Again
Hi:
Pat got out of the hospital on Saturday and attended Toni’s shower. Sunday she rested at home. She had previously scheduled a visit with her oncologist for Monday morning. She went in this morning and had her blood tested first and her creatinine level (kidney function) was still not good. The reading had not changed since...
Saturday, September 27, 2008 5:19 PM
hospital stay
hi! Wanted to let all of you know (though some already do) that I have spent the better part of this week in Emory hospital. I have not felt good since the ablation. On Mon. I started to bleed. Called my oncologist he said to come into get my blood drawn. Went into lab and my count was down to 9 from 11.5 6 weeks ago and my creatinine (kidney function) was not good. They sent...
Monday, September 22, 2008 5:36 PM
Pet scan
hi everyone, Got an email today from my oncologist which said that the tumor is, “Stable to slightly improved hypermetabolic in the left adnexal soft tissue area.” Was hoping to hear that it was gone but guess I’ll take what I can at this point. I see the oncologist on the 29th so I guess that I’ll get more details then and will let y’all know. Love, Pat
Tuesday, August 19, 2008 2:27 PM
hi
I just got a call from Dr. Small, who is the radiologist who performed the RFA. Dr. Staley forwarded my email to him and told him to respond to me. Basically he said that he was happy with the placement of the probe in the area that had active tumor but has looked at the CT scan that I had taken after the procedure and can see that there was probably trauma to the nerves in the area. Bottom...
Sunday, August 10, 2008 9:08 AM
I’m back!!!
Hi Everyone, Thanks to all of your prayers and good wishes I’m home and doing fine. I’m still a little sore but according to the doc things went well. The ablation itself was quite uncomfortable but…. it’s over. I will have a CT scan in a month to take a look at the area to make sure that the tumor is gone. Hopefully this pesky GIST will stay gone this...
Friday, August 8, 2008 8:19 PM
Re: RFA
Pat had her ablation done this morning. It was a hurry up and wait day…..got to the Emory Hospital at 7:30 for the 8:00 am reporting time….drew blood, inserted an iv, spoke with the radiologist…and waited til 10:45 am to be taken to have the procedure done. The procedure itself was to take about 10 minutes but with pre time it would be about 2 hours total. Then an...
Monday, August 4, 2008 10:12 AM
RFA
Well folks, the procedure has finally been scheduled. It will be Fri. at 8AM. I will be in the hospital overnight and then about a weeks recovery. Thanks for your support and prayers. Keep them comeing. Love to all, Pat
Monday, July 28, 2008 11:53 AM
I’m back!
Hi everyone, I’m finally home. Yes, I know, I’ve been gone for the better part of a month. The Lance Armstrong Live Strong Summit at Ohio State was very inspiring. We were priviledged to hear many unbelievable stories of courage from celebrities as well as people just like you and me. To me the important thing that I came away with both from the Summit and from my...
Monday, June 23, 2008 12:02 AM
Prayers
Please take a moment in your busy day and say a prayer for my good friend Cliff Beeks who has lymphoma and is facing a very serious surgery to remove his spleen and lymph nodes today. Bea and Cliff have been like family to us for almost 30 years. I would greatly appreciate that when you’re saying your prayers for me that you include Cliff too. Many thanks, Pat
Wednesday, June 11, 2008 5:52 PM
No Surgery
Just spoke to my doc via email and the surgeon via phone they both agree that the surgery would be too risky. The surgeon said picture all your other surgeries and multiply them by 7 and that would give you an idea of the severity. He suggests a process called radiofrequency ablation or RFA. They will go into the tumor with a probe and “Cook ” the tumor to destroy it. I...
Wednesday, June 11, 2008 11:49 AM
Boston, Here I come
Just wanted to let y’all know that still no word from my Emory doc but I have an appt. to see a GIST specialist at the Dana Farber cancer center in Boston on June 30th. Peggy is going to go with me to Boston to try to keep me sane and to take notes. Wish me luck and as always keep me in your prayers. Love, Pat
Monday, June 2, 2008 3:51 PM
The Frustration continues! Saw Dr. Staley this afternoon. He asked several questions and then said that he wanted to speak to an orthopedist that he works with because he feels that the tumor is somehow attached to or inbedded in (maybe) my sacrum. There are many nerves in and around the sacrum so he wants to speak to the ortho guy about the nerve involvement if he had to remove part of the sacrum...
Wednesday, May 28, 2008 12:17 PM
GREAT NEWS!!!!! I just heard from my oncologist. The tumor is the same size, no progression and more importantly there are no new tumors. I am soooooooooooooooooooo…. happy. So, Mon. we go to the surgeon and see about getting this thing out and hopefully the Gleevec will keep working everywhere else and I will be OK. Keep praying because obviously it’s working. Thanks. I’ll let...
Thursday, May 8, 2008 10:47 AM
Looks like the ball is rolling! Just got a call from Emory and they have scheduled a PET scan for May 27th and a visit with Dr. Staley (the surgeon) forJune 2nd. June 2nd is an ironic date since it is my 7 year anniversary of being on Gleevec. Keep your fingers crossed and your voices raised in prayer. I’ll be leaving Sat. for RI for a wedding shower for Brian and Toni and my nephew’s...
Wednesday, May 7, 2008 10:35 AM
Got an email from my oncologist this morning. He met with the surgeons at tumor board yesterday and Dr. Staley has agreed to meet with me about the risks and advantages of surgically removing my GIST tumor. YEAH!!! I feel like I’ve had a reprieve from the governor.Dr. Staley is the head of surgical oncology at Emory. He has been involved with surgery with me before so I know him and he is a...
Monday, May 5, 2008 4:27 PM
Hi! It hasn’t been a very good day ! Went to the oncologist and the tumor is GIST which is my original cancer. The doctor wants to raise my dosage of Gleevec to 800 from 600. He is doubtful that there will be surgery as it could prove to be risky because of the amount of scar tissue. I asked him to speak to the surgeons at the tumor board tomorrow and to tell them that this is what I...
Monday, April 28, 2008 8:59 PM
Hi guys! Well, it’s over, Thank God! the biopsy wasn’t horrible but certainly not something that I want to go through every day or even once more in a lifetime. It started when the nurse at the hospital couldn’t access my port in my chest so had to use a vein, which by the way is usually a source of great anxiety for me since I have such horrible veins however she did get a vein...
Monday, April 21, 2008 9:11 PM
Here I am again. Not much news just wanted y’all to know that my biopsy is planned for 8:15 next Mon. and I see the doc for the results the following Mon. the 5th. So, Hurry up and wait again. Thanks for your emails and prayers. They mean the world to me. Keep them coming. I love you all, Pat
Thursday, April 17, 2008 5:10 PM
Saw my oncologist today and he had the results of the MRI from Tues. Unfortunately there were a couple of additional spots that presented on my spine. He said that they were very small but were possible metastaces. Prior to going on Gleevec I had lesions on my spine so what we need to hope for are that this is disease that has been there all along and has just not shown up on the PET/ CT before....
Monday, April 14, 2008 7:01 PM
I went to the gynocological oncologist today. He was nice and seemed to be knowledgeable but still no answers. He says that the mass is small and he would hate to have to do surgery on me because after all of my 9 surgeries and radiation, “It is like a war zone in there.” He has ordered an MRI at 6:30 AM at Crawford Long tomorrow. He will then confer with my other oncologist to come up...
Wednesday, March 26, 2008 6:41 PM
Hi! It’s been one hell of a week. Some of you don’t know that I had my 6 mo. PET scan last Wed. and got a call on Fri. that they saw a mass on my scan. Saw my oncologist today. I told him that he jinxed me by saying that my cancer might be gone, 6 mos. ago. His answer was that he’s not comvinced that it is GIST (the same cancer). The tumor board met about my scan yesterday. That...
Hello world!
It’s Niki. I’m in the process of setting up a blog for my mom. These first entries are taken from the email blasts that she has sent out in the last few months. Some may be missing - so there may be some holes, but hopefully you can get the picture of where she has been.