Update from Kristi

Hey Everyone...it's Kristi, Tami's daughter-in-law. You are hearing from me because this has been a pretty icky round of chemo, and Tami is to wiped out right now to type. I do know, though, that there are a lot of you, like me, that wait to read her blog and stay in the loop...so here's the update:

I got a call from Tami yesterday around 4:30ish, and she was speaking so quietly, she was hard to hear, so I went right over...In my opinion, this has been the worst round ever, and it is so hard to see her like this and be helpless to take any of it away. I am so grateful and glad that she accepts my help and company. Let me tell you about a few of her symptoms this time around. She said that she felt like she had been run over. Last night she was very queezy and drained. She was on the couch covered up. Her hands and feet were very tingly and it was hard for her to eat, she said it felt like she had had a hot pepper. I had to warm up her water and fruit to make it a bit less painful to swallow. I tried to get some food in her, and she accomplished a cracker, a few pieces of diced peaches and a bit of tuna. I'm sure she didn't feel like it, but I was determined!!! It was very hard for Tami to walk, as it was like the muscles in her legs weren't listening to her brain tell them to move.

So, as you can guess, it was an emotional and frustrating evening for her, and I am blogging mainly to rally some prayers...or lots of them :) Any positive prayers and comments would be very encouraging for her, as she is finding it difficult at times to even have the desire for more chemo.

On a different note, I would like to use this chance to share with you what Tami means to me. What began as a happy surprise to find great in-laws, for me, has turned into a life-long friendship. Tami and I have very much in common, and I feel like we "speak the same language." Tami has become one of my best friends, and I love her very much. I love the opportunity to spend time with her, any time I can. I always wish there was more that I could do. I love her take on parenting and the advice that she gives. I love the way she prioritizes her loved ones and the way she can turn negatives into positives. We all have a lot to learn from the "Tamis" in our life, and I am one of the blessed ones to be honored to share her time.

Thanks for visiting, and thanks in advance for the prayers!
In His Care,
Kristi (and Tami)

10th Chemo coming up

I have felt great for the last 4 days. I have actually just did some normal stuff, house cleaning, organizing, etc. We met with the new candle sales reps and got things going and that makes me feel so good. Grubbyland will continue on! The sales reps are going to do a wonderful job selling, I couldn't be happier. The room I call "my candle room" will always be my candle room but I have been sorting through stuff and am going to turn it into my craft room. I really miss making candles and going 90 miles an hour throughout most of the day to keep up with business. I only wish I would have taken more time back in the day to be proud of myself for starting from scratch and making a successful business. I am proud of me, the more time I have to think, the more accomplishments I realize I have made in my life and Grubbyland Candles is definitely on that list, I have met so many wonderful people and am so thankful for all of them for helping me to realize the dream.

On another front, and maybe just to get it off my mind, I called the old oncologists office yesterday to get a copy of my records. They called me this morning and told me they would be happy to fax them to another Dr but it was"their" policy that records not be given to the patient..... this left beyond pissed! I said, do you mean my medical records that I am legally entitled to? She said well I can check into it further if you want, I said well yes please do, I would hate to have to contact my lawyer to get a copy of my own medical records that are legally my right to have. She called back about half hour later and said they would be ready for me to pick up. They are just clueless as usual, Norm told me he is sorry he didn't realize all the mistakes earlier. Of coarse it's not his fault.

Tomorrow is chemo and they are calling for bad weather north of here, so am hoping I get to go have chemo, it's time to kill off some cancer! I may be doing it alone as I told my sister, I would much rather do chemo alone than her end up in a ditch driving in the bad weather. Hopefully it will just miss us like it has been.
Little things I am thankful for: Juice boxes, so awesome after chemo to use instead of cold juice, see they aren't just for kids! The other thing is my little seed corn filled small pillow that I got at the cancer center, it warms up in the microwave and stays warm for hours! Keeps my hands warm when they are cold and tingly from chemo.
One more thing, may not be appropriate but what they hay... my hubby got me a knit cap for Christmas that is embroidered with F&*k cancer on it. I wouldn't dare wear it out, for fear of someones child reading it, but I do wear it around the house on positive days, keeps my head warm and reflects what I am truly thinking about cancer.
As always thanks for your prayers, keep them coming, I need lots of go away cancer prayers, I want to beat this so badly.

I Refuse to give up!

yes, it's true, I have found the old me and I refuse to just give up! I am still upset about not being able to have surgery but My new oncologist and Dr Chen from Mayo said they aren't saying never, they are saying the chemo is working, let it do it's magic. The Dr at Chicago said I have peritonium(aka omentum, pelvic area, lymph node) involvement, which they showed at Mayo, everyone calls it something different but they are referring to the same area. So, go figure, I am one too many places of cancer to have surgery. Oh well, Maybe next time, no Definitely next time! I have seen far too many miracles happen within me to just say ok, so it's chemo for life. I plan to sit back for a month or two and take more chemo, perhaps make some diet changes( I need to gain weight) , but then watch out world, I am looking for answers. I couldn't say I was fighting this if I just resigned myself to chemo for the rest of my life, there is a option out there for me, be it at MD anderson in houston, or Sloan Ketterling in New York, or even at Mayo, there are Dr's out there that are doing something to help cases like mine, I just have to find them.

Thank you all for your prayers, I got myself in a pretty bad funk when I was told no surgery, but then I remembered that I prayed and asked for prayers for the right answer. So the right answer was no surgery now.

A friend of mine' Mother prays for me daily and I got to speak to her the other day and she told me, I would be ok, no matter if I was on earth or in heaven. I believe she is right. I continue to ask for prayers. I don't want to do chemo anymore, but I know I have to, so I will be slithering down into the chair next wednesday for more chemo, This time I will take it willingly and remember the whole time it is killing my cancer, and I am thankful I have that option.

update

Thank you all for your prayers. There will be no surgery

Prayer warriors

University of chicago, Dr Posners office just called, he is not sure on the surgery so he is presenting it t the entire board at noon today, Please pray to put the power into their hands to make the right decision on surgery today.

A tough round of chemo

This has been a really tough round of chemo this time. hour to hour I am not sure how I am going to feel. I feel so badly for not understanding when the elderly say they are just worn out, I know what they mean now. I can go from great to no energy, lay down or pass out in an hours tme. I am hoping this goes away soon, like it usually does. I hope it is the chemo working, killing off the cancer cells. I am experiencing a slight pain in my left side, feels like a pain you get when you have been running. I have tried walking, sitting laying down, and rotating sides and it just seems to be hanging in there. Not horrible pain, but uncomfortable.

Eating just isn't fun anymore, I remember when I was my heaviest at 181 pounds and was completely addicted to food, I loved food, that's how I got to be so heavy! I think I am hungry now for something but after a few bites, it just tastes bad. I am also growing oh so tired of not being able to drink anything cold. Water is getting really boring, thank goodness for the invention of juice boxes. They taste pretty good at room temperature. You should hear the conversations I have had with waitresses at restaurants when I ask for room temperature water... so funny, when they look at me like I am from Mars and proclaim, no it comes out cold. I have learned just to smile and ask if they could maybe microwave it for me, and explain that I have cold sensitivity from dental work...

I noticed this morning that my toes are starting to peel, I have read that could happen from the oxalyplatinum. I have been told they take many people off of it early because of the symptoms, but as I told my Dr, I will live with numb, tingly feet and hands if it will kill off the cancer, I happily make that trade off, but I wonder will I go past the point of no return with it?

Still no word from the surgeon, I am starting to get annoyed, I wonder if they are laughing, thinking how could someone be referred for surgery with so much cancer or are they looking at the possibilities. I hope it's the latter.

I have been printing labels and getting everything ready for candle parties, I am so glad I still have a role in the business, it gives me purpose. I need purpose. Things are really starting to take shape for grubbyland and I couldn't be happier. My sister is becoming quite the candle maker, she is so awesome for doing this. I think she must be crazy sometimes, but I also think she is having fun and am so thankful for her taking over my biz.

Ok, I am rambling now, but whatelse do I have to do??? Thanks for the comments on my last post Barb and Jackie, you gals are so awesome!

9th round complete

I went to the new Dr for chemo this time, the experience there was like a new day. The nurses are so cheery and helpful. It was quite noisy there, and as usual they sat me next to a talker. Really nice older man that has been battling cancer since 1994.. wow! The nurses are wonderful, sitting down to explain my bloodwork to me, nd throughout the treatment. Treatment took forever, well 6 hours, but it seemed as if they were administerating everything like they should have all along. The nurses were shocked when I told them I was getting chemo in sometimes 2 hours at the other place. The new nurse told me, just one of the drugs they are giving me is to be dosed for 2 hours alone, not counting the others.. things that make ya go hmmmmm. See why I am liking this other Dr????

The tingliness in my hands and feet have gotten worse, even touching a door handle felt like i had been shocked, even typing today the fingers are tingling badly.
They did withhold the avastin, while waiting to hear from the surgeon, which I still have no word from, I am hopeful that is good news rather than bad, perhaps he is figuring out what he can do for me instead of what he can't do. I am worried about not getting the avastin, but perhaps they know better than I do. I still haven't gotten the results from last weeks ct and pet scan either. I imagine it is lost in my Dr cahnging this week. I really like the new Dr, there seems to be a huge wait, but I can deal with it for the better attitude there. They toldme yesterday that they hope to have my ct results on tuesday when I have a Dr appt. It's so unreal that difference in Dr's offices, they are going to recheck my blood on tuesday as they want to see what the chemo is doing to me, novel idea I hadn't heard of before.

My sister Sherry took me to chemo, Thank God for her. I don't think, no I know I couldn't do this without my sisters. Getting rides to appt's has been nearly impossible. Norm has been using up his vacation time already and I hate that as I hope we will need that for surgery.. nice thought huh? what are you gonna do on vacation this year.. well we are hoping my wife can have a major surgery that can lengthen her life.. ah hell, who needs to go on a cruise anyways?

The side effects seem less this time overall, so I am going to try to enjoy my weekend. Thanks for all your prayers, please keep praying for me, I just know it is working!

Also I want to say how much I appreciate your comments on my blog. People have asked if I can see them, YES, thank you so much. You don't have to sign up for a account to post a comment just choose anonymous. Every call, card, comment and visit I get helps me to have strength to get through this. Thank you all so very much for commenting. Some people have asked me how can they comment on my blog, just click on comments at the bottom of each post and there will be a box to type in your comments.

Getting ready for Round 9

Tomorrow I go in for round 9 of chemo. I am depressed today, Last night Norm had to burn copys of my pet and ct scans to send up to Chicago and of coarse he opened up the pet scan... dang it! I had to look and even though I have no clue what I was looking at, I saw spots, lots of spots so I have myself talked into bad news as usual. I have myself questioning why I had to get cancer so bad before I knew it was even there. How could I have not known it was there?

I read yesterday that being very tired is a sign of colon cancer, I remember when my 2 1/2 year old grandson was born and how very tired I was, I was sure I had diabetes and even went to the Dr and asked for a blood test. Why didn't he question me more then? I am so very jealous of people that have stage 3 colon cancer, I know that sounds pretty sick, but dang it, they still get to plan life... I have to pull myself out of this slump I am in. I have been crying for days, and it's not even chemo cry, so how bad will that be once I have chemo? Truth is I am scared, I am just plain SCARED. I have been really hitting the zantacs just to cope, to sleep, to just get away. My sleep has been horrible lately again, so I justify it by taking a zanex to sleep during the day.
I suppose I will hear from the surgeon this week and I am so scared after looking at that pet scan, what if it has grown, I am still holding onto the idea in my head that I have no idea what I was looking at, but it scares me alot.

I had a wonderful week last week, almost like old times, I felt great, I pray for more good days like last week, I pray for continued shrinkage of this cancer... I HATE cancer. I have to pick myself up somehow before tomorrow to get ready to have chemo. Sometimes I just want to runaway. I always said I wouldn't put my family thru the suffering I went thru when my Mom had cancer, I would just run away... I dont think I have enough courage to run away. What am I putting my family thru??????

Updates, lots of them

Well I had been feeling since last thursday that Mayo was going to call, and they did on Friday. They said no to surgery at this time, They say even though they believe lots on my liver is just scar tissue, there is just too much cancer, they also talked about an area in my pelvis, this is the first I had heard of this, but they acted like it was nothing new. They didn't talk to the surgeon there, so who knows.

So on Tuesday, we went to the Univ. of Chicago to see the surgeon there, unfortunately we knew even before we arrived that we didn't have all of my records that I had been working hard to get and was promised everything was there from my oncologists office, too bad on Monday night when I opened the packet, it wasn't all there. There were 4 ct discs in the packet so I thought at least we had the ct scans. Well even more disapointment as the surgeon said, I had every scan except for the one view he needed from the last scan.. ARGH! So, he couldn't give me a yes or no to surgery, so there is still hope from him. I have to get that one, along with the pet scan I will have tomorrow and the ct scan I will have on Monday and send them all up to him and then he will give me a call. I am starting to have a love hate relationship with my cell phone, never know what kind of news I am going to get. So I imagine it will be late next week when I hear back from them.

I made the decision to change oncologists after a few more mess ups with my Dr. My new Dr says I have lots of options and seems more hopeful than I do, so that is aBIG change from my old oncologist that uttered his first words to me as .. do you wanna know how long you have.

More patience for me I suppose, not easy but again what choice do I have? Thanks for the prayers all, keep them coming, I'm not done fighting this beast yet!

8th Chemo complete

This round of chemo is different than the last, I almost immediately felt nauseated and it continued into the second day. My throat and mouth started bothering me on day 3. I have this pressure pain that started on sunday and continues on and off. It is on my left side. My Dr says as long as something doesn't stay, not to be concerned about it. He was vague again this time, which he seems to be every other time. Maybe it's just me. I asked him again about the difference in opinion on the ct scans and even though he was supposed to be checking from the first one, he said well it's just different perceptions. huh???? The numbness in my hands and feet are staying with me now, rather than going away. My Dr hasn't had time to contact the surgeon in St. Louis, says probably next week. Lord give me patience. I am glad he has all the time in the world, but I don't. I guess my impatience shows up sometimes, but then I think, why shouldn't it?

I am nervous about the next week. Next week, I hope we get some doors opened for us, some options with going to Chicago, I am also waiting to hear back from Mayo's surgeon. I am also looking at MD anderson in houston. They are the leader in cancer. I just feel like maybe I am the one missing the point. I am lucky to be alive, and it seems those around me don't question the Dr's so maybe they already know the inevitable.. but all I have is hope and I have to keep striving for life

My Dr also ordered a pet scan after I told him how surprised Chicago was that I hadn't had one. Funny how I have been asking since day one for a pet scan and they wouldn't give me one, Sometimes he plays follow the leader, scares me sometimes. So now I am scared bout the pet scan, what if it shows more cancer, but then again, what if it shows less? I read now that even pet scans can show false readings, Wouldn't ya think by now, they would have a way to know what is and isn't cancer? What if I only have cancer in my colon? I can dream, and I do. I told my husband, wouldn't it be neat if I went and found out I just have cancer in my colon and they could just do surgery and I would be healed?

Some days I just have to put my cancer in a drawer, it has become a obsession and sometimes I just have to put it away for the day.
Thank you for your continued prayers, I pray that I am with the right Dr's and they can do something to rid me of this nasty thing we call cancer. This week, I have felt guilty about putting my loved ones thru this. It's not fair to them. It's just not fair, but I guess that's the way life works. Norm seems to just gel with the situation, he is my rock and I am thankful for him. My baby daughter even knows to just say it's ok Mom, when I have the chemo crys. I want to be there for her so much more than my body will allow me to. I never ever once stopped to think what happens when your mind is strong but your body is weak, I know that feeling now. I laugh at the times in the past that I said I just didn't have the energy, HA! I would love to have that energy that I didn't feel I had in the past. Sometimes my body just stops