A little progress

Well Tami made a little progress today, and a little toot as well. It wasn't much but it was a start. As well, she was able to have her catheter and stomach tube removed today. She was very happy about that, but of course still frustrated about the whole situation in general. She is still on ice chips and getting really hungry. The doctors still act like this is all right on track, so we are still hopeful for a Tuesday/Wednesday release.

Also with some creative pausing between nicotine patches she was able to get down stairs for a smoke, although I wasn't thrilled she needed it for that sense of normalcy.

A big thanks to her sisters who went over and cleaned the house today, and I am sure spoiled the puppies a little, I am sure they are missing their mom. They have done so much for us, I wouldn't know where to begin to repay them.

Where there is smoke....

Just a small addition about yesterday, she got a blood transfusion as well, the resident thought that her levels were too low and that the transfusion would be a good idea, as well as the stomach tube.

Later that night her surgeon did her rounds and was a little disappointed about the days events, that her levels should be low and she should have pain, after all, she just had surgery. I like the surgeon that did her colon, she is very straightforward and confident.

Today was a little better on the medical side, although Tami remembered that she is a smoker, and she hadn't smoked in 5 days. Now the fun begins, I was asked to leave the room and go home a couple times because I refused to roll her down to have a smoke, what a jerk I am :)

Oh well, the joys of life in the hospital, I am the only one left down here to take the frustration she is feeling, but thats my job right?

Tami appreciates the thoughts and prayers, she would really like you to focus on prayers for her to pass some of this gas, yes, thats right, I just asked you to pray for a fart. Remember, by request of Tami. Sooner she can do that, the sooner she can go home.

Rollercoaster ride

Well after an incredible day yesterday, where Tami was up walking around 5 different times, we get to follow it up with a not so fun day. Tami started feeling ill this morning, lots of pain. They took her back off clear liquids, and the Dr started to worry she might have some internal bleeding. If this was the case she would have to go back to the OR, not fun.

They took her down for a CT Scan to determine what was going on, luckily it turns out she is just full of gas that will not pass because her colon hasn't started working again yet, which is normal after surgery.

Now the following is something that should be noted if you are ever given the choice of having a rather large tube shoved thru your nose and into your stomach, if the give you the choice, go for no! I was all set to leave the room for this one, of course the Nurse asked if I could help out, of course being too nice I couldn't say no. For any medical types reading this.... tubes are not supposed to be shoved down your nasal cavity into your stomach. I will never be a Nurse, and for those of you that know me, that is a good thing, as well, I live under a strict code of lubed objects never entering my body anyhow (yes Tami will beat me for that comment).

Anyways, after all that, they said it will help get the gas out, and ease her pain, which is ultimately the most important thing. She is asleep now, which is few and far between these days. The best part about bad days is they usually can only get better.

24+ Hours after surgery

We are just settling down for some sleep tonight, figured I better post an update.

Tami was moved into a very nice private room on the 17th floor of Barnes hospital, a beautiful view of downtown St Louis from her window. She is doing great today, in fact just a couple hours ago she was up and walking. Now I have something new to worry about, I will have to sleep with one eye open to make sure she doesn't head downstairs for a smoke.... I am kidding, not quite ready for that, but she is doing great. I am very proud of her, I know now how she puts up with me, she is very strong.

All in all, we couldn't have asked for better results and better recovery, everything is going super. I been trying to relay the comments back to her, so keep em coming.

Been a long day...

Sorry for the late post, its been a long day at the hospital, I wont keep you in suspense, Tami is doing good.

The day started early, we got to the hospital and got registered. Me and Sarah went back with her to get prep'd for surgery. Everything was going pretty good, till our Liver surgeon's assistant drop a bomb on us, stating that Strausburg had a family emergency and that he would be getting one of his associates to do the surgery. I nearly craped myself, as did Tami, but we met her, she is a liver specialist too, and seemed pretty confident in the procedure.

So me and Sarah said our see ya laters and went back downstairs to the waiting room. They gave me a little buzzer like at a restaurant waiting on a table. They would ring you with any problems or updates. he first time it buzzed my stomach nearly turned inside out, it was 8:30, they updated us with the fact they were starting the procedure.

An hour and thirty minutes later, just as they said, the buzzed us and told us the colon was done, and buzzed me a little later so we could chat with the surgeon, she seemed real confident and said it was pretty straight forward, and no issues. They removed the main tumor and cleared up a partial blockage on the otherside.

Next the liver, that as well took about exactly the same length of time as they had quoted, and she once again went thru the procedure fine. They removed 10-12 tumor/lesions some from the liver some from her "gut sack" (thats not a medical term). They had to leave 2 on her liver as they were in a touch area, all is not bad tho, because they removed so much, they figure they can target those directly with chemo.

Anyways, will post more tomorrow with a fresh brain, gotta get back to the ICU room, I have a recliner with my name on it for tonight.

Twas the night before surgery...

Norm here, I will be taking over blog duties for the next couple days. Tami seems to think she gets a couple days off cuz of this surgery thing, I guess I will let her have that. We are all settled into our hotel and just relaxing and waiting.

I will try and keep everyone updated here as I can, I hope they update me during the surgery, I honestly would rather just go through all this myself, be a lot less stressful.

Anyways, keep the thoughts and prayers coming, and I will make a new entry soon.

Last blog before surgery

Wow, I can hardly believe I am on this journey. It seems impossible that I have the chance for surgery and most days it just doesn't seem real that I have cancer. Damn I hate to even type the word. I pray that this surgery does a lot of good for me. I have been really depressed the last couple of days. I hate being the center of attention and guess what? Here I am. My kids will all be there with me except Sherri because I forbid her to even think about it after just having the baby. My sisters will be there and of coarse Norm will probably live in the hospital while I am there.

The details, we are all heading to St Louis on Monday for the fun bowel prep and then I am to be at Barnes hospital at 5:30 am on tuesday, Surgery is scheduled to start at 7:30 am. I ask for prayers for a safe and successful surgery. I am told I will be in the hospital for about a week. Norm will update the blog.

I am sure I will come out of this ok, and hope and pray that I will come out of it with no cancer left in my body. I am strong, and I can get thru this. My kids deserve a Mom, my husband deserves a wife, and my siblings deserve a sister. I am so glad I have my family, I am so sorry though to put them through this, nobody deserves to have to go thru this. I pray God is there with the surgical team guiding them during this surgery.

I am scared, I am really scared, but what else are my choices? There aren't any other choices, so forward I must go. I know no matter what I will be ok. I am worried for my family, I so hate putting them through this.. I just wish I could wake up and this could all be just a bad dream, a horrible dream. Perhaps after the surgery I can. I want to live again, really live, not having to worry about what I can and can't eat, not having to wonder about pain and bowel movements, not having to worry about chemo and surgery and these ugly cells in my body called cancer, I pray for the chance to live again. Forward I go..Thank you family for being here with me, as much as I hate it, I am so glad I have all of you to hug and to love. We all will come out of this ok, I promise!

Down to the wire

I am feeling more and more positive that this surgery is going to help me. I was thinking last night after I had another breakdown what I would do if I suddenly didn't have cancer. It's like a whole new world would open up for me. The nurse and nurse practitioner both said how wonderful my surgical team is yesterday. Maybe they say that to everyone, but it sure made me feel good. I can't wait to get this surgery over. I pray they find less cancer than they expect to find and can cut it all out. That would be my perfect dream. Just perfect

I got home last night and there was a note on here from my buddy Jackie about checking my front door. She had came and left me a bunch of daffodils, a darling bear and a note pad. Yesterday was american cancer society daffodil day. Daffodils are my favorite flower in the world and Jackie, thank you so very much, it sure made my day and it came right after I had my mental meltdown. I got up this morning and have been watching these flowers pop open one by one. Thank you so very much.

I am still scared but am feeling stronger and stronger. I can't wait to get this surgery over. My nephew Ben that donated blood for me found out today it is a perfect match! This was so awesome of him to give his Auntie a pint of his blood. Thanks for the offers to donate blood, They won't accept anymore donations now as they have to get them to St louis in time for the surgery, but thank you for the offers.

Baby Russell came home on Monday. He is doing awesome and so is Sherry. I am going to get to rock him tomorrow when I get to see him. I have rocked each of my grandchildren and sang twinkle twinkle little star to them and no doubt I will be singing to him tomorrow. My little grandson booga was over on sunday and amazingly he can sing twinkle twinkle. I wasn't feeling well and was laying on the couch, I asked him if he wanted Nana to rock him and he said yes anc climbed under the covers with me, I rocked him gently and he said sing twinkle twinkle to me Nana... it's amazing precious moments like that, that keep me strong and help me to battle this bastard beast cancer.

Off to St Louis today

I have my pretests scheduled today. My wonderful sister Sherry is taking me down for them. Just like always, no questions asked, yep she would take me. She continues to do wonderful with my candle business. I am so proud of her. I don't know how I could have ever thought about selling it out to a stranger, well I know I couldn't have. I built the business up one candle at a time and she has done wonderful keeping up with it all. I know it was a great choice and it is also a great honor for her to take it on. It is so awesome to have a great family. I don't know how I could possibly do this without them.

They said I would need two pints of blood, my sister Debbie immediately signed up to give as did Norm. Amazingly they are both perfect matches for me. Norm got his blood drawn on Saturday, yesterday they called and said there was a leak in the bag so the whole pint is contaminated. Debbie went to give yesterday and her blood pressure was thru the roof, so no go. I know she was worried about calling me and telling me, but I can't tell you how awesome it is that they even tried. My nephew Ben who had never given blood before went in yesterday and donated blood for me. Sarah is going in today, she has never given blood before so Norm is going with her to hold her hand.
I can't express the words to describe how loved I feel by my family, never a hesitation.

I am getting anxious to get the surgery over with. I am still scared but becoming more determined that this is the right thing to do and praying and hoping for a chance at a cure.

My daughter Sherri doesn't realize it but she showed me alot about strength when she had little Russell, She was so determined, no whining, no crying, she just did it. My dad used to use three words alot, and I keep hearing them in my head, strength, determination and willpower.

Thank you all for your comments, I hold them close to my heart and they help me alot to continue to battle this beast. I am letting cancer know it's getting evicted next week. Actually a week from today, the eviction order is in for those little bastard cancer cells. Next week, they are gone!

Finally, I think Norm is going to blog for me while I am in the hospital next week. Thanks for the prayers, they have gotten me this far and although the storm is not over, I know it will calm in his time.

Meet my Grandson

This is my Grandson moments after he was born. He was born yesterday at 11:53 am. He weighs 7 lbs 10 oz and is 19 1/2 inches long. I can't explain how wonderful it was to be there when he was born. I got to cut his cord and welcome him into the wide world ahead of him. Needless to say, he is beautiful. What a miracle life is! Sherry hoped having him before I had surgery would give me additional strength and it has certainly given me strength! I can't wait to watch him as he takes his firsts in life. I am working on getting stronger for my surgery ahead. One step at a time, one minute at a time, isn't that the way life is supposed to be anyways? I am so thankful that Sherri let me be such a big part of the birth of my grandson, Russell Uhler. I already told her to remind him daily he is Nana's boy, not Papa's boy. Norm has a wonderful way about him and always manages for each of the grandkids to be Papa's boy or girl. I am so thankful for him! He is the best Papa in the world and obviously the kids know it!

The Surgery

Well here are all the details. I went to St Louis on Monday. A student Dr came in and said, well you know how bad your cancer is, and usually we don't do surgery and I lost it right there. He said well Dr Strasberg is reviewing your scans and he is very aggresive with cancer and he will see you in a bit. I was hysterical, how could I put myself thru that again, I was ready to leave. After what seemed like years, Dr Strasberg came in and examined me. He said ok, I believe that you are young and otherwise healthy, and we should do surgery. To say I was shocked would be an understatement. He said this will not be a curative surgery but we will take the tumors off of your liver and use Radio frequency ablation to get anything that is deeper within the liver. He wanted me to go see the colon surgeon right then. He said he was basing his decision from my pathology reports saying that it was neuroendocrine cancer. I asked him more about that since Mayo had said even though it read neuroendocrine on both biopsies they felt it was adenocarcinoma and thus treated me with the chemo that I was originally on. He said let me relook at this and left the room. I thought, great, drop me from the 10th floor with your student coming in, then lift me up to the roof and tell me surgery, and now drop me down again. He came right back in with my pathology report and said he totally believes that this is neuroendocrine cancer, and the tumor in my colon has to come out. He said if the disease is too much in my liver they will do nothing with my liver. He said this surgery should give me 10 to 15 years and hopefully they will come up with new treatments in that time.

I went over to the colon surgeon and she said you realize this is not a curative surgery, although it could be curative if there isn't any more microscopic disease that hasn't shown up on Ct scans. I was floating again! She is going to do a right hemectomy and a left hemectomy, basically taking the right side of my colon and then my left side of my colon and then reattach my colon, I asked if I would have a bag and she said no.
So, I am off of chemo for now, I didn't think to ask how long before or if I would have to go back on chemo. I am very scared about the chances for potential problems, 1 in 20 for a major complication, 1 in 3 for a minor complication. I hope I can beat the odds, no, I know I can beat the odds, afterall as he said I am young and otherwise healthy. I am scared, but I know this is the only option I have, I have to go for it, you can't imagine how wonderful it would be if they could get all the cancer. I know that is a small chance but I have hope.

I am scheduled for surgery on March 25th. They say it will take about 5 and a half hours to complete. I will be at Barnes hospital for a week. God is good, and he is surely showing there is hope for me. I can feel it. I pray for his guidance during and after surgery.
If you could please pray for me, that would be great, I can do this, I know I can. I have too!
Scared, nervous, excited, hopeful, amazed, that is all the feelings I have been going thru.

There will be surgery

I will update with more details later, but wanted everyone to know Dr Strasburg and Dr Birnbaum will be doing surgery on me on tuesday March 25th. They feel they have to get the tumor out of my colon since it is moving around and they will work on my liver while they are there. I need lots of prayers and positive vibes so if you could share that would be just great. I am scared alot, but know this has to happen. I am off chemo until surgery. Thank you all for your prayers and support during this time, it is very overwhelming to know how many people are praying for me and pulling for me. Thank you again,
Tami

A busy weekend and miracles

I just have to say, isn't it amazing that I wrote about Suzanne and she found my blog the same day? It was just the miracle I needed to keep me going. Sometimes it's hard, actually alot of the time it is hard, but it is miracles like this that keep me hanging on. This new chemo is really alot better on me and there are moments I feel normal and it is so hard to believe I have stage 4 cancer inside me. I guess this is a good thing as it allows me to have normal moments.

I rarely remember dreams but in the last several days I have had 2 about my Mom. Last night I dreamed that my Mom was sitting at my kitchen table with me and she asked me to explain why I thought I had to die of cancer. It was so weird, but yet so real. I think this is another miracle, my Mom is trying to talk to me even if in a dream. She helps me to keep going too. I am so sad I don't have a Mom to hug during this time in my life, but I feel like she is here in some way and my dreams lately have reassured me of that. I hate the thought that I might leave my kids without a mother, the same way I was left without my Mom. I pray to God that my kids aren't left without a mother. Even though my kids are older than I was when I lost my Mom, they still deserve to have a Mom. This breaks my heart alot.

We are headed to St Louis to see the liver surgeon on Monday. Suzanne has also given me some contacts with Dr's and Norm is working away looking for surgeons, so hopefully somewhere out there is the Dr that will help me have surgery. I finally got my records from when I had my colonoscopy originally that was perfectly normal, It was Dec 20 2002. Thats only 4 and a half years from when I was diagnosed. how can this be right? I have the thought in my head now that perhaps a dirty instrument was used in my colonoscopy back in 2002, maybe the instrument gave me cancer. I just don't get it. All I can do is move forward and find my hope out there. I feel like I have to get my armor on to do battle. Thank you all for your prayers, I am not sure what I am supposed to learn from my experience but I am sure that this has been a week of mind bending miracles and I will take it. Please let the miracles continue. I am so not ready to be told no surgery again, I am going with a positive attitude for a new look into my case and hope, for that is really all I have. Please pray for a miracle for me. Pray that this surgeon is my pearl in the sandstorm.

CT Results

Well we have no change, so for now that is good news. Just as when I started the first chemo, and just had stability, the Dr said this is good news since I have barely just had 2 cycles so this means I am responding to the new chemo.
I was a little more aware when I saw him this morning and we talked to him alot about surgery and what these Dr's we are contacting are saying. Basically when the surgeons see the word neuroendocrine and Mayo, they bow out. We are not taking Mayo records with us on Monday and we are hoping for a new unbiased opinion. My oncologist thinks I should have just let the local surgeon cut out my colon tumor when my journey began and it was nice to hear that Mayo is not the be all, see all that they claim to be all the time. He suggests if we don't get a yes for surgery from the surgeons we are going to see that we go back locally and see if they will take out the colon tumor, I could then start back on the avastin that worked so well before. I am praying that the Dr I see on Monday will give me a chance and take my case on and do surgery. Obviously, it would be much nicer to have a liver surgeon that could take a look and see what he could do while he removes my colon tumor.

The ct also commented on some of the tumors in my liver being cystic and hypodense. My Dr explained that cystic means no cancer and hypodense is basically where cancer was but died from the inside out, and he said this is good news towards having surgery. He was pretty blunt when he said chemo won't cure me,which mayo had said it could, but I have read enough to know it won't cure me. He also said studies show better prognosis when the primary tumor is removed. So, we have a lot to think about, and we have to find someone who sees things the same way he does. Scary, that we may get the chance to roll the dice, perhaps but who knows maybe this is just more false hope. God knows I am so tired of being told no to surgery so I am lending alot of hope on this surgeon in St louis. I am scared, what if I can't make it to chemo after surgery as Mayo suggested back in August? I have to take a chance though I know, but first I have to find someone to help me take that chance. I need prayers for answers next week. I am so thankful I am still here, I am thankful for today. I feel like decisions are going to be part of our near future, not sure why, but I just feel it.

I wanted to ask for a chemo break today for next week, you see I have a grandbaby due anytime now and I am going to be there for his birth! I can't wait! I have always wanted to be in the room when my grandkids were born and this will be a first for me. I decided after the news that I couldn't ask for a chemo break and will just get thru it the best I can. I might be in a wheelchair with my chemo pump on rooting Sherri on, but I will be there.

Ct Scan today

I have another ct scan this morning. I ask for prayers that this new chemo is working away shrinking those tumors. I hope for a miracle and they will tell me WOW all your tumors are just gone. I will miss you Barb this morning, how can I get a Ct scan without you there at the desk:)
We will find out the results on Wednesday. Norm is going to call a oncologist that specializes in colon cancer today and another surgeon today. If your looking for some pretty good reads, do a search for Suzanne Lindley. She was diagnosed 9 years ago and told go home and die. She chose to find a Dr that would help her and she is still around today. I pray I can find a Dr that will help me. Please send me positive vibes and prayers that I can find a Dr that will help me. I am off to drink some more yummy banana flavored barium before my scan. Thank you for your prayers, I believe they are working.