R.I.P. Tami Loewen 1961 - 2009

Tami passed today, I will update more another time.

I love you Tami, always and forever.

Just a small update

Sorry again for the length of time between updates, I am some what of a fair weather updater in that I would rather update everyone when things are going good or at least have a good outlook. Tami isn't doing well right now, its hard for me to type that let alone say it, but she isn't. We are working hard to get her comfortable but even that is proving tough. They hooked an external pain pump up to her to try and give her some added relief, but I am not sure we are there quite yet.

My parents got her a few days ago, and thats been a big help, and I am glad Tami was alert and awake when they got here. I am still hopeful that Tami can pull back out of this, I have a lot of faith in her strength, not sure what I would do with out it.

I appreciate everyones support through all this.

just so tired

it has begun to be hard even off the lap top. I am pretty much bed bound. night time is so hard i just moan in pain, walk from the family room and try to get gas or the other out all night long. i long for actual sleep, though it is easier now that i have with the flo and most times the flo is day time. i still dont know how norm does it. woek is really been making it easy on letting letting him work partly at home, this helps alot. I am officially in hospice now, that means a nurse drops by 3 times a week, a bath girl comes by a couple times aweek, no more dr,blood work or additional medicine. They put in a pain pump in mystomach and can tune it higher with a magic wand, which can and does make me constipated and bloated, bad bloating, i also have bad swelling in mylegs and feet. not fun, they also installed a fluid pump so i can suction out fluids.ya its as gross as it sounds. been draining approox a 2 liter bottles wworth. my plan is to get stromger for more treatment bit i know in my heart, its not gonna happen, God has given me so many miracles, he keeps me here now. i am so proud of myfamily and friends formaking sure i am not by myself. thank u blog posters your words help me evry day....too tired have to stop now, happy valentines day

I am home

I came home yesterday. This will be a short post as my energy just isnt there. The mere thought of walking to the bathroom exhausts me. For now at least I am on hospice, my dr sugar coated it to make it sound better but basidally, they will come out a few times a week try to make me confortable with pain meds, but there will be no intervention of ny kind, if I get dehydrated, whatever, they will not do anything to stop the process of dying. I have so much pressure in my rectum and vagina. Pain free is not a term I wilkl probably ever be able to use. They installed a magic wand pain pump that neeeds to be adjusted by a Dr, also installed a drain to drain off fluid from my abdomen, all measures of comfort. I have enjyed 17 months of ife I wouldnt have had, but I give that credit to God and to my family. It is funny how fast cancer can take over with these very aggressive tumors. Time is short now and again all I can say is I miss yesterday. Please live life while you still hve it. Thank you to everyone for helping me along my road of life.
Happy Anniversary norm, who would have known that 14 years after we met, we would be going thru this? I am just glad I got to be here with you today. I love you Norm, that willl never change.

We are on a please volunteer if you can basis now, I am terrified of being alone so we are looking for volunteers to come and sit eith me while Norm works, Monday thru thursday 5 am til 3 pm. Norm takes such good cre of me. I am so sorry to everyone Ihave put thru this horrible disease. but appreciate so much the help you have been to me.

Hospice means no more hospital or Dr visits, just let the disease run it's final coarse, so opposite of who I am, but know I hve no choice except to accept it and be grateful for what I have been given, oh so many blessings even in my situation. Time to think of my journey that lies ahead. How will I ever do this without Norm? I know God has the answers, but how can I do this without my best friend in the world? How could I do this to him? I love him so very much. His parents are coming down in two weeks, I can't wait to see them, but at the same time, know it will be the last time here on earth. If timing comes out, they will be here for Norm, but once again even the timing of this is up to God. Please pray I can hold on until they get here, Norm is going to need them so bad. I realized today that my Mom got to have her Mom with her when she passed, Norms mom is just like My Mom, so hopefully I will get to have a Mom to be with me, but more importantly to be here for Norm.

May your road of life be filled with love, laughter and full of family and friends.

“I don’t want to chase living and not live.”

Ok, I know, its too soon for another post, 2 in one day, you all are going to fall out of your chairs. I have to say though the last one left a bad taste in my mouth, and I dont want it to put out there a wrong message to anyone, specially Tami when she reads it. The "throw in the towel" comment is bothering me real bad, because I haven't given up in my heart yet, and I dont think I will be capable of ever doing that even though some say eventually you have to.

I still think that we will be able to do something, that Tami will get this fluid drained, get home, feel better, get strong enough for the next task. It's Tami's fault I think that, because she is tougher than I could ever be, and I feel like she gets down, and comes back twice as hard. But now we are dealing with things that make me feel like we are giving up, and things like not planning the next treatment, or looking at Home Healthcare/Hospice, or even telling my parents that they should come down. All those things feel like I am giving up.

In the same sense, having seen everything Tami has done, and I dont think anyone can truly say they know everything she has been thru fighting this crappy shit. All those things, and I cant begin to imagine putting her thru anymore, but I cant just say its time to accept things as they are.

The title of this post is from Patrick Swayze, he made that statement on his Barbara Walters special a few weeks ago. Now I thought before watching that we would see this pampered star, with all his "people" running around taking care of him and living the good life even with the worst disease. But as he explained the things he has endured, and the chemos he has been on, and it all mirrored what Tami has done, I felt bad for thinking anyone is immune to what the beast can do to someone.

So we aren't giving up so much as we are choosing to live and not chase life, we have done so much chasing that I regret every moment of time that it has taken from us as much as any decision made that in hindsight should have been different or re-thought.

So we aren't giving up, but choosing to live a little more instead of chasing life so hard. I hope this makes sense to everyone. Ultimately Tami tells me what she can and cant do, and I stand behind her and hold her up as much as I can.

Tami had another 2000cc drained from her as they put in a semi-permanent drain (for those keeping score that is almost 2 two liter bottles of pop since yesterday). She was getting sick to her stomach some this morning which has me worried, she should get to come home tonight or tomorrow though. I am so selfish, but I am very much looking forward to her coming back home, cuz the house sucks without her in it.

Well...

I am not even sure what to title this entry, Tami had a CT Scan on Monday Night, she had been having horrible pain, and had been terribly bloated. The results were not surprising, but not good either. The tumors had grown in just a short 2 week period up to 20% more. We assumed that we would see growth, but of course it is still a punch in the stomach when you see it. The doctor sat me down and showed me where the tumors are, and how bad it is. Her bladder is surrounded and invaded by the cancer, the tumor in her liver measures some 15 cm. The cause of the pain and bloating is due to not only her gas problems but now fluid building up in her abdomen.

They drained some of this fluid from her yesterday, up to 1500cc of fluid, and she still has twice as much of that in her. They are going to go back and put in a catheter in her to drain this fluid at home. Hopefully she will be going home today or tomorrow. We both agree that she doesn't need to leave till her pain is at a controllable level.

Anyways, with this news, her Oncologist recommended that we move to Hospice option with Tami. This means someone will be in daily at home to take care of her, but also means that treatment would all but stop. They dont think she is strong enough to do anything surgically for her cancer, such as a de-bulking. Radiation would only target a small portion of the cancer and would only allow everything else to grow. Chemo with all its side effects would be hard on Tami, and possible wouldn't effect the cancer well enough to do much good.

It's not really fair, it isn't supposed to happen like this. I feel like I could have/should have done more for her, and its a tough pill to swallow now that we have to basically throw in the towel.

Special thanks to Liz, Sherri, and Sherry for covering for me at the hospital so I could go back to work some.

Overdue Update

Sorry for the delay in getting the update, with Tami still in the hospital and me back at work it makes for limited time for much of anything.

As I said, Tami is still in the hospital, She has had bouts of different pain, starting from an epidermal headache, which I hear is quite common, basically the hole they drill in your spine can leak spinal fluid and cause headaches, once it seals itself the headaches stop. Luckily Tami's seem to be easing up now.

Of course she can just be lucky enough to only have that, her tummy is horrible bloated up, she is having sever gas pain, they have her getting morphine from the internal pump in her, from an external pump she can hit when she needs, and they are giving her 2mgs of Deladid every 2 hours as needed. Basically the amount of pain meds she is taking would kill me or you if taken (this is a proven fact, I took a couple of her oxicodones for a bit of a tooth ache I had at the hospital the other day, and they pretty much floored me). She has built up such a tolerance of pain meds they have to load it on, carefully, for it to effect her.

It is frustrating coming to work, I feel like all the work I do with her kinda slips backwards, this isn't a knock against anyone helping me out and staying with Tami during the day, but I know I can push her  a little harder, or tell what she needs easier than anyone else. As an example, yesterday when all this gas started up she had a nurse she hadn't had before. Well this nurse had it all figured out. Tami asked for a GasX earlier in the day, and got it. Then she hate lunch a couple hours later and asked for another one, well the nurse would have nothing of it, Tami was required to eat more food before she would even consider giving her another GasX, she also claimed that Tami was not bloated at all, an apparently told her daughter Sherri that she wasn't hurting as bad as she was acting.

When I got there at about 4:30, I started asking for this GasX that Tami had been wanting since 1pm. At 5:30ish she finally came in with it, I asked why she thought she needed to withhold GasX from my wife, and how she could say that she wasn't bloated when Tami looked 6 months pregnant and her tummy was hard as a rock. The nurse went on to say that she had tried everything to get Tami to "go" (have a bowel movement) When I said the issue was the gas she was having, and that GasX offered some relief at times she just shrugged, started to walk out of the room and stated that she didn't have any answers, I replied with "obviously".

Tami doesn't need any extra drama on top of everything else, when she gets upset the gas and pain only get worse, I blame the fact that she probably wont be considered for release today all on that one nurses inability to show some care and understand, we know Tami's body better than any nursing school or any number of years experience. I was looking forward to getting there last night and getting her up walking around the halls, she did walk around the room, but in obvious pain. Tonight I am just hopeful I get there and she has some pain control back.

I have been staying with Tami till 3am, then driving home to get ready for work and check on the dogs and cat, it was hard to leave her this morning because she was in so much pain. Hopefully she will be able to get the gas a little more under control and we can get her relaxing again, days like yesterday just want me to get her home faster as we can look after her as well if not better than these hospitals seem to be able to pull off on a consistent basis.