Hospital Stay

Norm here again..

Some of you already know, and for those that don't we had Tami admitted to Decatur Memorial Hospital on Wed. The pain had just gotten too much and it just wasn't fair to Tami to continue trying to battle it on her own at home. I am glad that we finally took this step although I dont take any credit for it, Tami's sister Deb gave the shove in the right direction.

Anyways, we got here on Wed and they went ahead and drew blood and did a CT scan and hooked Tami up to a pain pump. Her tummy, as always was bloated to a large size, with what we can only assume is gas. Anyways we got the blood results back a short time after they took them. Her Hemoglobins were quite low and they wanted to do a blood transfusion. At first I was ok with it till I really started to think about it. They drew the blood from her port and we have never gotten accurate results from her port. When they came back to draw a sample from her arm to cross match for donors we demanded that they re-test her blood. The nurse at the time said there was no way that the sample from her port was bad, and that even if it was different, it would not be different enough to stop her from having a transfusion. Of course, me and Tami won this bet and her blood came back fine and they canceled the transfusion, after 17 months these medical professionals should give us a little credit for being professionals ourselves. I believe the nurse owes Tami 25 cents, we are still waiting to be paid ;).

The CT scan results came back much later in the day. Dr Perdekamp was the on to delivery these, and they were not good at all. The liver and pelvis tumors had grown at a large rate. To make this news worse, the Dr felt that are options had become limited as well as Tami's time. It was like finding out Tami had cancer all over again, that same initial feeling of helplessness that you feel at the beginning of the journey when you dont know what the future holds, basically the punch to the stomach again. The Dr basically said that she had a couple weeks if we did nothing for her pain, and that if she had an ileostomy she might get a month (I heard a month or two, Tami heard a month). To top this all off, here we are in the hospital, and Tami really doesn't feel much better pain wise, it is so deflating to be where you think Tami will get help only to see they aren't able to offer much more than stronger pain meds.

To add to the issues, with such heavy pain meds going in, Tami's bladder started to act up. They decided to put a catheter in and help her urinate. Of course that added extra issues, Tami started getting pains and bladder spasms. They had to add 2 more meds to her already ridiculous list of meds. It seems like the nurses are coming in all the time to give her meds (least when we dont have to remind them) add in enemas, laxatives, etc, well what a frustrating mess, I am at wits end most times, and cant even imagine where Tami is most of the time.

So here we are, trying to decide the best path once again. These choices just seem to get tougher all the time. I will try and keep the updates flowing faster than I had been, but I wont promise anything right now. Currently we are at Decatur Memorial in room 5172 (217-876-5172). Its possible we might be transfered to St Mary's as DMH doesn't do the pain pump procedure. It just depends on what we decide on. I will update if we move. Tami doesn't mind calls or visits, although she doesn't always feel up to chatting.

I will update everyone as soon as I can, send some good vibes our way.

another short update

Ihave been feeling horrible. The last chemo round, also the first chemo of this new one, anyways has pretty much put me under and I am really strugling to get back up, everything has taken a turn for the worse, the pain is constant, rest is not happening for more than 2 hours at a time. I am now having problems putting anything into my body and getting anything out from anywhere is a struggle. appointments are supposed to be forthcoming from my oncologist for a pain secialist, a urologist and a gi dr. I have lost complete faith in my onc. as most days I cant even get a phone call back from her office. It truly is God and me in this 24/7 I dont know what to do anymore exept to pray for sleep and less pain and to keep strength somehow,

also i appreciate norms last post but right now, i cant see visitors, it is just too tough right now, i am sorry, but i can only do the best i can.

for any of you that have tried to reach me via my cell phone, my cell phone broke over a week ago and thus i haven't gotten anything until yesterday when norm got me patched up with another phone, so i pologize if i have missed your call. if you call and dont get a answet i will try to get bavk to you, sometimes answering the phone is more than i can accomplish, just like the blog. i used to spend hours on the computer, it has been days since i have even sat down in front of it
thank you for all of your prayers,
love always,
tami

HELP WANTED

Norm here. 

Yesterday, and I guess for a while now, I realized that Tami is scared. I don't blame her, who wouldn't be scared. If anyone has talked to her or looked at her blog entries you can see that yourself. Lately though people have been translating that into she needs Hospice or a Nursing Home (yes she has said this as well, but what she is really saying is she hates to be alone so much that she would rather have some stranger around just to break up the alone time). I am gonna go on out on a limb here and state that I totally disagree with this. I am here most of the time, I take the brunt of the good and the bad. What does Tami need? Friends and Family.

Now I am not posting this to single anyone out, or to try and get myself a break. When I am at work and Tami calls me terrified and I have to rush off home I wonder what more I can do. I certainly can't quit my job, but she needs more, she needs distraction.

What I have seen, and why I am asking for help is that many feel like the are doing more for Tami not bothering her, not calling, not coming over, letting her rest and relax. I ask anyone to reflect on that and ask yourself if you had 10 hours a day in your home with nothing much to do but think about your own fate how much you would enjoy that. So what am I asking? Monday thru Thursday I work from 5 a.m. to 3 p.m.. Come over have lunch with Tami, hang out with her for a couple hours, give her a break from solitary confinement. Don't ask, call her up and come over. If you ask her if she needs some company or some help she will tell you no (I probably would and probably do now when I need it). Obviously this is not realistic for everyone that reads this due to job and location restraints. All I am trying to put out there is this.... Everyone is staying away trying to give her space, she has all the space she can handle, she needs people who care about her to fill that space.

If your close by and would be interested in coming over and hanging out with Tami, email me: loewen@mchsi.com, if you already have her home number call her.

Finding Courage...

This is my biggest dilema now, how to find courage. Let me explain, I read others blogs and in the past few months, I have read about the end of the journey for three wonderful people suffering with this damn disease we call cancer. The first was a few months ago, and after realizing her cancer was outsmarting her chemo, she decided not to go for a second kind of chemo, but to take what time she had left and use it to spend with her son and husband. I was so shocked when I read of this. I couldn't understand in my own mind how she could walk away from a chance to live. This worked on my mind and has since then. The second gal had a rare form of cancer and things went down hill and she was in the hospital for a couple of months,, she had three kids, after some breathing problems, she pushed away the respirator and took her fate instead. Again, I was shocked, I couldnt understand turning away from a chance at life. These have both worked on my mind daily, wondering how could they, why would they, if only and then it hit me. They found the courage to let go, to accept what was. I have been pondering daily how I will find the courage, or if I can find the courage to do what they did. I don't think I have much quality of life left with the pain that has taken over my every moment for the past few months. I always say, I wish I could have back yesterday, because yesterday was better than today. I don't wanna be a quitter, but I don't wanna be a fool, and I think I am already both. If I had stopped chemo long ago, I could have had some quality time, but I didn't, I wasnt couragous enough to say no more. For the past several weeks while I pondered the question of more chemo or no more chemo, I wanted to be done with chemo, but I didn't have the courage to say no, I could only put it off. Everything in life teaches you something, and these two couragous women have helped me to understand what true courage is. At least I finally get it. I don't know if I will ever be couragous enough to say no more. I want to be, I can't even understand how I have fought this cancer for the past 16 months. What made that time different than now? Was it hope? Did I have more hope than I do now? Truly I believe it was pain, physical pain brings this cancer to light, it lets me know that it is real, and it is in control. I hate it more and more every day. I am losing my mind, wonderinf if I can find courage. Or, Am I being couragous opting for more chemo now, or is it about what I think my family wants me to do? The truth is I am dying of cancer, I knew this 16 months ago, yet chose treatment, so why oh why is it so hard to choose treatment now? At what point do I say no more? Am I even there yet?

This has to be the biggest feel sorry for myself day that I have had since being diagnosed with cancer. It's not fair, I don't like it, and how have I kept my mind all of this time knowing I am dying with cancer? This shouldn't be a surprise to me now, yet it is, it's like revisiting 16 months ago, when that Dr looked me in the eye and said, there is no cure, all we can do is prolong your life............God Help me to put all of this at peace in my mind. I don't like the Tami I am since my diagnosis and I don't want to take that Tami to heaven. I want the old me back, I want everything that I had in early August 07 back, I want to kick and scream and demand this cancer go awqy, I want to fix this and I can't. I am ashamed to say, when I said "it is what it is" I was kidding myself, I was lying to myself. I thought I could be the miracle, you know when the chips are down, I can figure out a plan? Well I can't this time, and I don't know how to get thru the next second. I HATE cANCER, I hate what it is doiong to me and to my family, and to my friends and to complete strangers reading my blog, God Help me

Happy New year and round ?? done

I got the pump removed this afternoon so this round of chemo is done, I pray it is killing off the cancer. I have had the feel like I am pooping mode going off and on for the last couple of days. It really is a pain in the butt when you don't know if you have to go or if it's just the body doing it's normal thing. I have been sleeping alot, even to the point, I have laid down in the bathroom floor 3 times now, just to figure out what my body is doing, and fell asleep. I am sure it was great for Norm to get up in the morning and find me in the bathroom floor sleeping. he has been taking great care of me. I am just really tired and wore out so I am taking advantage of it and resting when I can.
I hope everyone has a wonderful 2009. I never thought I would see 2008 and look at me here I am gonna be seeing 2009. Lots happened in the last 365 days but all that really matters is I am here by the grace of God, I have loving caring people around me and hopefully 2009 will be full of good news tht my cancer is going away, I can wish for a miracle and that is the miracle I choose for me for 2009.
Happy New Year! Thank you all for your prayers throughout this whole journey with cancer. You all are very specil to me and I thank you for supporting me as I walk through this journey.
Tami

Chemo round ??

I don't even know what round this was, pretty bad huh? anyways i had chemo, just got home a bit ago, very long sitting in the chair getting chemo. Just feel yucky. started having what i call pop rocks under my skin, felt like nerve tingles or gas moving in a million places at once, have felt the chest do this before but this was weird, it was chest, stomach, hips, a million times in just a few minutes, still having it somewhat in my chest, dr came and checked me out, she was clueless never saw this before, gave me benedryl via iv, knocked me out pretty much for the rest of chemo, which was good since it was so long.

Dr finally listening about not being able to pee, now she wants me to cut off dilodid too, i dont think i can do that, but am trying. also now having sensation of needing to pee and poop but nothing there... anyways i have my purse again with 5fu chemo in it and will have it for next two days, i hope this weird feelings go away and this gotta go feeling goes away too, had that all night last night slept maybe 2 hours. Thanks for prayers everyone.

Christmas was wonderful!

Christmas was everything it should be, family, a wonderful time, and good food to be shared. It meant alot to have everyone here. I made the girls journals complete with hand made covers with pictures on them. It was alot of fun making them and I think they all liked them. I have been journalling for many months now and it gives me peace, helps to clear my mind and also lets those closest to me have something to hang on to when I am gone. I hope the kids and my sisters use their journals.afterall, one day their words will be a memory for those they leave behind. Still so hard to believe but we are all going to die, could be fast or could be slow but everyone doesn't get the blessing of time that I have had and journalling is a great way to leave behind a piece of yourself, your inner most self, thoughts, feelings, wants, fears, happiness and sadness. I know I will be leaving behind this special gift for those that love me thru my journal. Many days I believe it is because of this blog, my journal and my digital tape recorder that keep me sane, or as sane as one can be under these circumstances.

I didn't end up having chemo on Friday. Christmas evening I got the worst cramps in my stomach, and they didn't go away until 5:30 in the morning. There was no way I could hve tolerated chemo. I thought for sure I was on my way out, I don't know how much more pain my body can tolerate. We went ahead and saw the Dr friday afternoon, she still believes that the pain is coming from the tumors in my pelvis. I still say they are from my colon., BUT I can't order tests and she can and she won't she doesn't feel they are needed. So we chnged my pain meds a little bit, and the plan is to have chemo on Monday nnd if I am still in pain, then we don't do chemo but instead I will be admitted to the hospital so they can try to get my pain under control. It is horrible when I am so tired, I can barely keep my eyes open, but the pain prevents me from sleeping. I will be honest, I am scared, but know whatever will be, will be, so just kinda waiting it out.

Last night, I kept filling up with gas and each time it would take a couple of hours to get it out of me, so not much sleep again. Today was reasonable with pain, but I could tolerate it, but then here we are tonite, with that same gas pain, bloaty, sore, crampy. I bought a new massage cushion for my chair clearanced today and I am using it right now and it is really helping. I am not sure if the constant vibration is a distraction from the pain or it is taking the pain away, but I will take it. Between this and my debbie heat pillows and hot bths, I am surviving. The Dr told me again she wouldnot consider a pain pump for liquid dilodid, so I am not sure what else they can give me. I counted pills from two days ago, since I am loggin everything so I don't forget what I have and havent taken, and I took 15 pills in one day! Hard to believe that two years ago, I took nothing, nothing at all for anything and now I have quite the wardrobe of pain meds, laxztives, muscle relaxers, and the list goes on. NO wonder I get constipaated takin so much medicine.

To answer questionf from the comments.... yes I am still smoking. I know not good for me, but what else do I have? It's not like they have ever told me I would live longer if I quit, and it's my one bad habit and I refuse to give it up. I had just turned 14 when my Mom passed away, so it has been 33 years since I have seen her. I know she is waiting for me and will be there with her hand reached out for me when I get to heaven.

I was also turned down from the insurance company for coverage for sir spheres, which I figured would happen, so I am going to call the Dr in colorado and update him on my latest scan and growth and see if he still feels we should appeal. I hear it is pretty common to get turned down, but is usually easy to get it reversed. I just need time, and I am not sure I have that luxury of time anymore. I am still pissed at myself for not pursuing sir spheres many months ago. It is clear again that most Dr's are in it for the money. Now, the Dr we saw in chicago will not return emails or phone calls, I am sure because the chemo dollars aren't falling his way. We told him we still wanted him to call the shots, I guess he decided on his own path by bowing out.
So folks, I am not sure where my road in life is going. There area many other specialists out there, I just dont know if I can do the trip and I know I have to get chemo, and a chemo that works and fast if I am going to be here for more than a few months. Pray for the right decisions, and the right dr's to cross our path. It is God's will and it is unclear right now what I am supposed to do, the christian part of me says to fight is to have faith, but yet I know the toll that this constant pain and no sleep is putting on my body, so again I give it to God and ask him to show me the way.
Thank you all. I hope you all had wonderful Christmas's and are preparing for the new year. I am amazed I am here, I wasn't supposed to see 2008, much less see the whole 2008 and it appears I just might see the new year come in.
Blessings,
Tami