Pain pump and such

Tami is still in the hospital, she got hooked up to the drug she will use in her pain pump yesterday. So far it seems to be relieving her pain quite well, and the pain Doc is pretty decent to. Tomorrow she will have the permanent one installed, as well the Urologist will scope her bladder to see what is going on there. If there is something wrong there are some options he can do while he is in there, from removing something to repairing any bleeding.

Tami was sleeping when I got there last night, and for a good hour and a half while I was there. It was good to see her sleeping so soundly although with me not staying with her it makes it kinda rough not to get all the time I can with her. Debbie seems to be doing good with her. She has been eating well and when she is awake she is very, well.... Tami :) We are hopeful that she will be out of the hospital on Friday, least that is what the pain Doc said it would take at a minimum to dial the pain pump dosage in. I hope so, the house is very lonely, besides the 2 dogs and a cat of course.

Back in the Hospital

Norm again...

We had to take Tami back to the Hospital last night. Let me catch you up to date. Last Thursday she started retaining urine somewhat from the pain meds. We took her to Outpatient care and had a catheter put in. It did not go well, it did not drain right and it caused her alot of discomfort. We took her back a couple hours later to have it removed.  The next morning at about 2:30 am Tami started passing blood clots when she peed. Needless to say this was a little concerning. We took her to the ER on Friday and they said it should be ok as long as she was still able to urinate, they could do a scan that could look and see what was going on in there but it being Friday they didn't have a urologist that could come in and do this, I suppose you should only get sick 9-5 Monday thru Friday.

Tami did ok the rest of Friday and into Saturday, then the pain flared up real bad, she started having trouble passing these clots and she wasn't eating or sleeping much. I, unfortunately, am a bad person for trying to stay up and get her relaxed to go to sleep, rubbing her puts me to sleep, or if she goes to the bathroom for a couple minutes I am out cold, she might have gotten a couple hours over night, but not much. Sunday morning we decided that she needed to go to the ER, that she couldn't wait for her appointment on Monday. We took her to St Mary's in Decatur as that is where she was to be admitted today for her pain pump anyways. The hooked her up to a catheter that would flush out her bladder. Right now they are leaning towards it just being a infection, perhaps caused by the insertion of the catheter from the Outpatient center. Worse case scenario though is that the tumor close to her bladder has invaded her bladder, at that point I am not sure what they will do. They hooked her back up to a PCA pump and she was able to settle down and get some sleep before I left the hospital. Her sister Debbie came down to spend the week with her so I could go back to work, I appreciate it greatly, but I am having horrible guilt about leaving Tami there in the hospital. 

Today they should have her scheduled to have a pump put in that she will be able to wear home. We are hoping that this will help her control pain enough to be able to get back to a more normal schedule, perhaps even Chemo. Right now we have her set up to have Home Healthcare come in and visit 2 times a week. I am not sure this will be enough, Tami shouldn't really be alone right now so I will have to see what I can do to get more help on Monday - Thursday when I am working, or even look into taking a leave from work. With everything going on they haven't given Tami much time, in fact the Oncologist told us just a couple weeks, but she back pedaled on that statement later on, regardless it's getting not looking the best, Tami is still swinging, but she is getting tired.

Currently Tami is at St Mary's, room 242. I dont for-see her being there much past Wed as they will want to observe her to make sure the dosage on the pain pump is suitable before discharging her. I get a lot of calls and miss a lot as well, just keep trying, dont think we are ignoring anyone, just sometimes its not easy to get to the phone or deal with anything but what is going on in the moment. I hope at least that this pump will give her some comfort, she has been fighting so hard, the pain she has been getting has just been insult to injury. I appreciate all the support we have been given so far, this is the toughest thing we have ever been thru, and it doesn't look like i will get much easier anytime soon.

Back home for a bit...

Sorry for not updating sooner, the internet was down when we got home yesterday. Anyways, after a rough night in the hospital, Tami decided that she wanted to go home and see the puppies and sleep in her on bed. We opted out on the surgery for the ileostomy, the risks of a surgery and the recovery time just doesn't sound appealing to Tami, not to mention the bad on her side. The surgery is there when ever we might change our minds, but for right now, it feels better not to do it. It didn't really seem to add alot of benefits compared to what it could cost her.

We are working on getting the pain pump procedure done though, we were going to transfer from DMH to St. Mary's where they do that procedure, but as I said above, Tami had enough. The last night we had stayed there we had yet another code blue on our floor, only a couple doors down. I think this was the first one Tami actually heard though and it struck to close to the heart for her. As I said here and in my blog, it does make it too real at times.

We took Tami to get a catheter put in today to help her pee, she had been doing ok with it but it slowed down later today. We thought maybe that having one at home would be a good idea. It didn't go so well, it never fails with Tami, if something can go wrong it will. She had it put in, and did not get any fluid return till we got home, then just a small amount. That wasn't too concerning to me, but then the pain and pressure started and we finally decieded to take her back to have it checked out. On the way back the pain just got worse, I finally said that it probably just needs to come out. I worry that the tumor by her bladder is causing issues, with the ballon inflated in there it might be making things worse. Once it was removed the pain subsided somewhat, but it just ended up being another frsustrating night.

Tami is very scared, heck I am too. I am here with her now, and next week her sister Debby will be, from there out I will need to look into havin someone come stay with her while I am at work. I hate having a stranger come in, but I know there are people that do this and would be very good for her. I am not sure when we will get into St Mary's for this pain pump, it will be a coupel day visit for that procedure, I just hope it will help some.

Frustration

Frustration, its all I can really describe how things are going right now. I am sitting here typing this update for Tami as she lay here on the bathroom floor not much different than at home trying to get things moving and trying to not have so much pain. Sure she is getting some better pain meds and more attention than I can give at home, but I would have thought she would be more comfortable and it just seems as bad, or worse considering where we are.

Tami's stomach is bloated like she is smuggling a football, at times its not so bad, but mostly bloated, they haven't done much for that, I dont understand why. I think perhaps this ilesotomy will be a solution, but then will it? I sit here watching her suffer and moan in agony, and all I can tell her to do is push the pain pump, push the pain pump, maybe if she gets enough meds she can sleep for a couple hours.

DMH has been wonderful for the most part, the LPN today is great, she is what a nurse should be, her name is Kristin, and she is just wonderful, I wont go to detailed, but she treats Tami like her best friend, like someone she cares about. The RN, well, she needs some work, and trust me, its rare we get a nurse here that we dont like but I just get tired of justifying everything Tami wants that isn't "ordered" or stuff that was ordered but has dropped off the schedule due to their system. Tami doesn't want an enema because she loves having strange people help her pass stool, she wants comfort and these help at times. No Tami shouldn't be going downstairs to go outside, but you know what, anything she does that is a crutch really isn't going to hurt where she is now, so you know what, dont worry about it.

Anyways, as far as an update goes this doesn't help alot, she is still trying to get her head around a bag on her side. I cant blame her, its a tough call, maybe this procedure will help, maybe it wont, maybe she will have less pain, maybe she will have more, maybe she will live 3 months, maybe more, maybe not.... It's hard for me to look her in the eyes and give her an opinion, an opinion I dont even know I could come up with if it were me. Sometimes I think the best answer would be to pick her up, take her home, cuddle up in bed with the puppies and just forget any of this happened, and let what happens happen.

Tami is one tough girl, just now, even at her weakest, and even in pain she makes me smile. She said to tell everyone to send brownies, and I doubt she was kidding.

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