Bad Grass Never Dies

I'm a "metal head"

Wed, 28 Jan 2009 17:33:48 -0500

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 “torture chamber. ” I was OUT rather than feeling everything. The worst part was the IV because again, they don’t like to use my port. they stuck my hand several times. It will be blue, but it’s over. So, I don’t have to go back to my oncologist until April and I have a scan in March. Things are looking up. Again, I couldn’t do it without the support and love of my wonderful friends and family. I AM BLESSED!!!!! Love, Metal Mouth and other things…

Hi all! This is Niki posting for Mom. Because of the...

Mon, 26 Jan 2009 21:17:02 -0500

Hi all! This is Niki posting for Mom. Because of the generocity of her friends, mom was the top fundraiser for the Liferaft Group again this year!! They asked her to contribute something personal for their newsletter and here is what she had to say: “Here’s how I feel about a cure. As I lie in my bed each night I thank God for keeping me here for that day and ask him to bless and protect me for the next. In my 18 years of fighting this battle with GIST I say that prayer each night. The coolest thing would be to know that my prayer was answered and that I have been and will continue to be protected from this dreaded disease, with a cure.” Look for her in this month’s newsletter at www.liferaftgroup.org

The luck of the Irish!

Thu, 15 Jan 2009 12:38:26 -0500

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

Mon, 12 Jan 2009 16:38:39 -0500

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 laughs at me. I have been cold all the time and my hair is falling out so he said let’s look at your thyroid. Me and Oprah!!! With my luck, it will be fine and it’s just my metabolism. wouldn’t it be great if a little pill would help me to lose weight? Keep ypur fingers crossed. Pat

YEAH!!!!!!

Wed, 07 Jan 2009 08:29:10 -0500

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 it was going to be awful news that I was in shock when my Doc emailed me the results. Dr. Kauh is the best! Also Cliff Beeks, my friend with lymphoma, started a new kind of chemo yesterday. Maybe he’ll get good news too. Lots of friends of mine are in need of lots of prayers these days. Please keep me and them in yours. Thanks, Love, Pat

Scan Day

Tue, 06 Jan 2009 10:55:35 -0500

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 continuing to shrink. I have an appt. to see my oncologist next Mon but hope that if I email him that he will let me know the results earlier via email. Keep the prayers going up for me. We are heading to the mountains with friends for the weekend. There are 12 of us going. Let’s hope that we’re celebrating not only Bob and Bulger’s B-Day’s but also my good news!! Love, Pat

Happy New Year

Wed, 31 Dec 2008 12:43:01 -0500

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 show appreciation by word and deed to those who are important in my life. We often get caught up in the negative aspects in our lives and forget to recognize the great gifts we have which in my case are many i.e. I have the best husband, son and daughter-in-law and daughter that anyone could have and friends that many people envy. So if I fail to mention how important the people in my life are to me in 2009 remind me. Love and Happy New Year to all of you. Pat

Things are looking up

Tue, 09 Dec 2008 10:44:32 -0500

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 them Can’t wait to get some made into pics for all of you to see and maybe even get for Christmas presents. Hope all is well with you and that your checkbooks are not getting too depleted during this shopping season. Love, PAt

The Results

Tue, 02 Dec 2008 14:56:21 -0500

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!

Mon, 01 Dec 2008 17:35:26 -0500

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 scan. Hope that all of you had a great Thanksgiving. We all have a lot to be thankful for this year. We have a new addition to our family with Toni becoming a Lemeshka and I am the luckiest with such a slew of loyal and wonderful friends. I’ll try to keep you updated. This BLOG thing is pretty cool! Love ya, Pat

Happy Thanksgiving

Mon, 24 Nov 2008 16:01:43 -0500

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 not concerned and that they want me to come in on the 1st for bloodwork. They said that some intermittant bleeding after my procedure was normal. So, I guess if they’re not worried I’ll try not to be either. I certainly didn’t want to spend this Thanksgiving in the hospital after we spent last year there with Bob. I’ll keep you informed if you remember to keep me in your prayers and to have a blessed holiday. We’ll be at Brian and Toni’s. It’s great to pass the torch and the stuffing recipe. Love ya, Pat

I'm free till January

Wed, 19 Nov 2008 10:46:28 -0500

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’m voting for gone!!! Miracles do happen but whatever happens we’ll deal with it just like we have done, with all of you behind me all the way. Have a great holiday next week and try not to gain too many lbs. I should follow my own advice. Love and thanks to all of you, Pat

I graduated

Mon, 10 Nov 2008 19:10:46 -0500

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 my graduation.

Hopefully…. this will be my last procedure for awhile. I see the oncologist next Mon. So, will give y’all an update then. Next step deal with the cancer with an MRI. Keep praying and thanks for all of your calls. Love ya, Pat

Lazy Saturday

Sat, 08 Nov 2008 16:15:14 -0500

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 writing this. I think that we all need days like this. I’m nervous about Mon. but can’t wait to get this tube out of my back. Hopefully if all is healed that will happen. I’ll let you know in the blog on Mon.

Please say prayers as always, Pat

My old Self

Mon, 27 Oct 2008 14:08:20 -0400

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 stint in and that I have an unbelievable tolerance to narcotics. they had to give me so much that I was in respiratory distress. Let’s hope she forgets that part when she does the next procedure and gives me plenty so I don’t feel anything. Looking forward to seeing a lot of you this weekend at Brian’s wedding and hoping that we do a little liver damage together. Love, Pat

I'm still a two bagger

Wed, 15 Oct 2008 21:58:36 -0400

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 juice’ (thank God).At that point they tell me that I was in respiratory distrss and they wanted to put a tube down my throat to help me breathe but the nurse who was working with me saw that as I was lying on my stomach and told them to wait and positioned my head so as to make me breathe easier. When I came to, they said that the bag was still there. As you can guess I was extremely upset and did shed a few tears. They took me to a room to recover and two docs came in to tell me that the tube and bag was still there but they did get a stint in to keep my ureter open. Bottom line, I have to keep the tube in my kidney and out of my back because they discovered a couple of leaks in my ureter they think due to the ablation. I have to keep the tube to give the ureter a chance to heal. the good part is that in a few days I will be able to take off the major tube and bag and cap off the tube from my back. It will still be uncomfortable but not nearly as cumbersome. In a few weeks they will send me back through the torture chamber and they will inject dye to see if the leaks are healed. As I understand it if the leaks are gone they may be able to remove the tube from my back. SO….. I know that this is a lot to digest but for now I’m still a two bagger with hope. Love, Pat

Torture Chamber Day

Wed, 15 Oct 2008 05:13:18 -0400

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 pray for them and me this morning. I may not get to talk to you today but will have someone or hopefully me either write something here or send out an email. Thanks for your love and support. Pat aka former two bagger

Monday Oct.13th

Mon, 13 Oct 2008 16:34:56 -0400

“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 in my ureter. If they can get past the blockage they will put a stint in to keep the ureter open. Dr. Kauh says that there’s a 50-50 chance that it will work. I asked what if it doesn’t??? He said then I will be stuck with the bag. He said that he and the radiologist and the kidney specialist will meet, if the procedure doesn’t work, to decide if there is anything else that they can do. Please, PRAY, PRAY, PRAY!! I certainly don’t want to keep this thing.I will be one disappointed person. It is such a nuisance. So, hopefully you won’t see a big bulge under my dress for Brian’s wedding. Keep me in your thoughts. I’m trying to think, glass half full. Love ya, Pat the temporary two bagger

Wed. Oct. 8th

Thu, 09 Oct 2008 06:37:59 -0400

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 bleed out rather than going to the hospital again. WHAT??? I was thinking of my family as the kitchen floor is tiled and the clean-up would be easy. Does that give you an idea how much this “Maverick” hates the hospital.Gosh Darn it! Thanks to all of you “Soccer Moms” and to you “Joe Six Packs” for continuing to hang with me. Love ya, Pat

Mon. Oct. 6th

Mon, 06 Oct 2008 15:39:49 -0400

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 back. I asked him what if the doc can’t get through the blockage. He said that I’d have to keep the bag and see what the urologist can do. So, back to the torture chamber on the 15th. I need to see my oncologist again next Mon for more bloodwork. He is keeping a good eye on me. Thanks for your prayers and support and keep it up. Love ya, Pat