Tuesday, April 29, 2008

Not even sure what to say anymore

I went to my local oncologist yesterday, it just gets worse evrytime I see a Dr. he said they just don't operate on small cell cancer because you cant recover quick enough to get back to chemo. he doesn't believe it is just small cell neuroendocrine because i wouldn't still be here and the chemo did shrink the tumors which shrinkage wouldn't show on a path report. he said basically I have one more option of chemo, they will probably only be able to give me 3 to 6 rounds at most because your body just can't handle it, it works about half the time, could put me into remission, more circles that I call cya. Really sent me into a downward spin.

Ultimately it is up to God how long I am here, I don't feel ready to die, but will I or is anyone ever ready to die?

I have an apt with the only specialist here in Illinois for next friday. That is a miracle in itself as they wanted to give me an appt in July. Thank God norm has been talking with that Dr for a few months. I pray he has more answers and more options for me. I am placing a lot of faith in him and I am praying to God to let this Dr be my answer. I want to continue to live life.

Thank you to my family for taking such good care of me, for being there, for the phone calls and the hugs. I am so sorry to put you all through this but am so glad I have you for this journey. I could have never ever gotten this far without all of you.

Sunday, April 27, 2008

So Everyone thinks I have lost my mind

but I believe with all my heart in the story I am about to tell you. When I was in the hospital I did ALOT of hallucinating, talking about things that were no where near what was going on, etc. BUT, I have a very clear and vivid memory and I know this wasn't me hallucinating and have to share. When they woke me after my surgery and told me surgery was over, they were moving me onto another bed and I was surrounded with nurses, out of no where a man appeared, salt and pepper hair, not clean shaven in a olive green tee shirt. He leaned over to me and said " I think they got it all. I said " they did?" He said yes I believe they got it all. I wasn't even thinking about cancer, the results or anything else. he then disapeared but he came back some time later and said yes they got it all. Now every person I have told about this thinks I lost my mind, was doing some serious drugs or both but I know this man was there and I even thought about it and realized later he wasn't a nurse, he was in a tee shirt. I thought at the time he was a rabbi I don't know who he was, but I know in my heart I will see him again. I know he was there and I know he talked to me. Anyways, I wanted to share.

Friday, April 25, 2008

And the beat goes on

My mind has calmed a little, I am again looking for the pot of gold at the end of the rainbow. I am trying to find the positives in this. At least we found out what it is I have, at least now we can go for the right treatments. I have read of so many tests that would have told us this is the kind of cancer I have had. I haven't had any of those tests but I will now demand those tests. norm has been in contact with the only specialist in Illinois that deals with neuroendocrine cancer. The Dr wants pathology report, surgical slides, lab reports, reports from these tests we should have had, so I will spend Monday trying to pull this stuff out of the Dr's in St Louis. We will schedule an appt with this Dr and then only after we have talked to him and are assured at what we are really looking at will we make a decision on what to do next.

I apologize for being so down in my last post, sometimes it's just where cancer takes me and sometimes I am at the bottom of the barrel and can't see the top. I am sure some of you think, what a whiner, well I am sorry for that but it's just where I am at. I want so badly to fight this disease and I need to have the right tools to do it.

God has provided so many miracles, and me being alive today is one of them. I am thankful for life and intend on living for a long time to come. I have a wonderful family supporting me and I intend on giving back to them even if only in a smile and a hug.

Thursday, April 24, 2008

Is the glass half full or half empty?

The title of my post says it all. Yesterday was a tough day. Follow ups with both surgeons and the new oncologist in St Louis. First off to the colon surgeon, yea I can eat what I want, she removed about a foot of my colon, she got all the cancer in my colon. I don't have to pack my incision anymore just cover it. then I ask for a copy of the pathology report, she says are you sure you want that? Umm yes I do.
Next to the liver surgeon, I have probably had this cancer a long time, yes as the pathology report says they did also take my gall bladder out just as a routine thing, yes they took places off my diapragm. Shes the one that said sirsperes for the couple tumors she couldn't get off my liver, she said talk to the oncologist, perhaps at a later date a surgery to resect my bladder since that is where the other tumor had to be left. I left there filling like I had been, thank god they had taken off so much cancer, so much cancer that wasn't in my body anymore, umpteen down<14> thats the number of specimens they took from my body, 3 to go, wahoo!
Surprised since none of my family had been told about cancer on my diaphram, my gall bladder being removed, and a few other things, then the horrid thought of did my family lie to me to keep me hanging on? This is how crazy I have become all because of cancer!

Than the oncologist, why is it they can kick you in the teeth so easily and it is a slow burn, you don't really feel it for hours and then it hurts like hell? She said I probably shouldnt have had the surgery, this is a very very rare kind of cancer, so rare they haven't did clinical trials on it because it is so rare, they don't really know, and then the punch in the gut, since everything they took off was cancer, she feels there is much more microscopically in my body, sirspheres wlould only target the liver. Chemo, nasty chemo is my option to target everything, It may work, it may not. blah blah blah..,..
The pathology report says that even though it appears to be primary colon cancer that since it is small cell neuroendocrine that is usually seen in the lungs, that can't be ruled out, hellooooooo my lungs are clear.
So I don't know if my glass is half full or half empty. one, yes just ONE tumor from the pathology report showed treatment with dead cancer cells, thats one out of 14, does that mean this is an aggressive cancer and it all grew in the month I was off chemo before surgery? Does that mean the pet scan just didn't show it? At $7 grand each, wouldn't you expect it to show what is actually there? Shouldn't I be thrilled that they took all that cancer out of me? What do I do? My mind runs wild with options, one of which is run for the hills, just run far far away, The more time I spend thinking about cancer, the crazier I get, who wouldn't? I have been thru all of this and I can't get a solid answer on it still, why is that? Why, someone please tell me why? What happens to all this money that goes for cancer research? I have been to some of the best places in the U.S and they just don't know. Did I go thru 7 months of chemo on the wrong chemo>? Remember Mayo said the chemo wouldn't work if it was neuroendocrine cancer? Am I just a goner and I don't know when to give up? Like I said, is that glass half full or half empty"?? All I know is I am tired of cancer, there is nothing I hate more than cancer, and damn it after all I have been thru shouldn't they have some answers for me?

Friday, April 18, 2008

A update

once again I have went way too long without updating. Everything seems to be so much and I just can't figure out which parts to write about.

My incision has opened up a bout 4 inches out of the 12 inches it is so last night was a trip to the ER to have it looked at. Funny part was even though we went to a different hospital, I thought Norm was going to crap his pants when in walked the Dr i had saw in the other hospital er when this all began 7 months ago! They gave me some antibiotics and sent me on my way.

I continue to have babysitters around the clock. Wonderful babysitters I might add. My daughter Sherri has been here every day this week and my daughter in law Kristi has been coming over in the afternoons and even KJ came over to help take care of me. I feel like my strength is returning and I am going to get there finally! God is good. Sherri amazes me with her strength in taking care of me, I am so proud of her and the lessons she learned, she is a amazing daughter and I love her so very much.

I am not sure if I mentioned but the Dr's have comfirmed this is the very rare small cell neuroendocrine cancer, which was not supposed to shrink with the chemos I was on,well we know that it did shrink so this can only be a miracle from God. I can only imagine when they get me on the right chemo how much ass kicking it will do to this remaining cancer. The incision has to be healed in order to go back to chemo, so I imagine it will be a few weeks yet.

I go back to St louis next week for rechecks with both surgeons and a oncologist there so should be quite enlightening.

I can't forget to tell you about the package of gourmet food that showed up on my doorstep thanks to my wonderful brother and sister in law phyllis. I am so glad I have both of them, they always seem to know my needs without me even saying them. If I have food ready to throw in the microwave I will eat, but it is just to tough to do food prep and once again they have delighted me with meals I can just microwave and eat. My weight has dropped down to 115 so I have to pack on some pounds to get strong before chemo and these meals will surely help me to do that.

I am getting stronger day by day. Life is good and I am thankful for this day.

Monday, April 14, 2008

I'm Home

I got home last tuesday. I apologize for not updating sooner, just haven't felt really good. The surgery was a lot harder than I thought it was going to be. Norm did a good job updating the blog, he is the best husband I could ever ask for. He spent close to two weeks there at the hospital and I know how hard it was. My brother flew in from phoenix and stayed with me for a week at the hospital, he is such a awesome big brother, it makes me cry to think how much he cares about me. He is my hero! It is so weird that there are entire days I have no recollection of, and then many days I recall but was totally out of my mind. Every day I hallucinated that I was in a different room, one day a disco hall, one day someones home back room, one day I even asked norm to get the arms and legs off of my shelves. I still don't know exactly what kept me at the hospital for so long, they said a blockage, then a ileus(bowel not awake) There was one day I felt like I just wanted to die, I was just so sick. I feel so guilty for asking God to take me to heaven that day.
I am regaining my strength just slower than I want, and that is frustrating. I feel like I have just lost my spirit so have been praying hard to regain my spirit. I know alot of it is the pain meds and zantax i am on.

I am forever grateful for all the love and care shown to me and continues to be shown to me. It's gotta be a tough job taking care of me and my family just continues on.

My incision opened up a little today so that is just plain nasty having to pack it with gauze. I used to love medicine, medical shows and even went thru medical assistant school years ago and now it just turns my stomach. I dread thinking about packing this incision.

Thank you all so very much for your positive thoughts and prayers, I know this is what got me thru and continues to get me thru the day.

I was so pleasently surprised with a huge bouqet of flowers from a online candle making group I belong to, how awesome, I don't even really know these people and yet they were praying for me. I have so much going for me, how can I not kick these last few tumors to the curb?

I am amazed to tears with the kindness of everyone and I thank you so very much. One breath at a time, I will overcome this. I have much more to share from my hospital stay but will save it for another time

Tuesday, April 8, 2008

Home Sweet Home

Tami is on her way home, I dont have much else than that right now, hopefully she will return to updating her blog for all of you. I will try and update more with her when I talk to her more.

As for right now, just glad to know she will be back home soon.

Monday, April 7, 2008

Good Signs

Good signs would be that Tami is eating real food, maybe not a ton, but real food none the less. Also she is starting to get real grumpy about being in the hospital, and nothing will get her out of there faster than that.

I got back to work today, but just talked to her a few minutes ago and she sounded great, she still feels cruddy, but you could tell in her voice that she is bouncing back. They are saying now she will be released Tuesday or Wednesday.

Saturday, April 5, 2008

Inching so much closer

Today was yet another good day, she tolerated food well, she hopes to have her diet bumped to regular food tomorrow. Although still having gas pains, at times bad, which in all honesty is to be expected with what she went thru.

Now it looks like Monday will be the release day, kinda sucks as I will be headed back tomorrow (Sunday) so I can return to work on Monday. Her brother is here so she is in good hands, but I still feel guilty leaving her, of course I wouldn't if she wasn't doing so well. Also if her kids come down they can help out as well, After me and Steve (her brother) Sarah will be a welcome relief to us guys looking after her.

Looks like we are gonna win this battle, yet another positive step in this war we are fighting.

Friday, April 4, 2008

Still looking good

Today continued to be a good day, after another round of stomach x-rays, she was able to have her stomach tube clapped off (not removed yet) and once again started on liquids. She continued to have bowel movements, and was up walking (and smoking) a bunch. Most of the obstructions are healing up nicely.

If all goes well tonight, no tossing her cookies (or in this case broth and jello) they will pull the tube and start her on soft foods. She would like to start with a steak and baked potato.

As special note to her forum buddies the FoHo's, Tami said the flowers were gorgeous and she was very thankful for them.

We are hopeful for a Sunday release, especially me as I will have to go back Sunday to return to work on Monday, I would hate to leave her down here, even tho she would be in good hands.

Thursday, April 3, 2008

Tami's Pooped

Sorry for the late post, and a special sorry to Sarah who made sure I realized I hadn't posted an update, sorry daughter.

The reason I didn't post last night was because it was gonna be a downer post, my clever title was to be "1 step forward 2 steps back". What happened was Tami was getting very sick to her stomach, repeatedly, She was given contrast for a CT scan, and if you ever had one of those done they give you a nasty drink to take before the scan, well when you cant keep a sip of water down, the last thing you want to be told is you have to drink that crap. She is a trooper tho, and held it down for the scan, not much longer.

Back to the tube, now the first time was for surgery, she was asleep for that, the next time was as I described earlier, and it sucked. Third time, well, she knew what was coming, and was even less unpleasant than before, but it had to be done. She was throwing up stomach acid and other nasty things from her GI track. As much as the tube sucked, the throwing up was worse for her.

Wait, not done there, the CT scan. Turns out she had some sort of an obstruction. What does this mean? Worst case scenario back to surgery if it didn't clear itself up. Now the last thing you want to do after a major surgery is go back in a week or two later.

Debbie, Tami's sister had come down to give me a break, I went and got a room at the hotel and got caught up on sleep, caught up on laundry, and felt very guilty because I could get a break so easy and she couldn't. Needless to say, I didn't want to re-live the days events in this blog.

Today, after sleeping way to long, getting my clothes washed and getting back here to her, things were about the same, they had done some x-rays to check out and confirm the obstruction, confirmed. Deb was able to talk to someone here about a bad experience with an Intern resident, she has the worst bedside manners, rolling her eyes, shaking her head. A plus for today was Tami's brother showing up.

Tami was staying strong tho, she was up walking, goin down for smokes (now Kuri, no "I told you so") We went down for a 1st smoke, and she thought she had passed gas, but wasn't sure. I was hopeful, but thought maybe it was a fluke. We went down for a second smoke, and before we got to the outside door it happened. She had a bowel movement, nothing huge, but a huge event none the less. Then the flood gates opened, she was a pooping machine, larger movements, gas, unbelievable. Even her surgeon, who by the way is the greatest doctor I had ever met, couldn't believe it, and what better timing for Tami to do this when the Surgeon was on the floor.

A special side note, I got to see the inside of a woman's bathroom today, sacred and hollowed ground, although the woman that came in after Tami didn't seem all that impressed.

Bottom line is that this is a huge turn for us, we are not out of the woods yet, but we can see the light. They will eave the tube in over night and make sure she stays decompressed, they will do new scans in the morning to see how the obstruction is progressing. She could be back on fluids tomorrow.

Tuesday, April 1, 2008

Still on that coaster

Tami is still have good times and bad times as we go along here. She was doin pretty good, passin gas and even upgraded to a soft food diet (if I repeat myself I apologize now). Late last night she started feeling sick to her stomach, and this scared poor Tami to death. They said if she was to throw up she would have to have the stomach tube again.

She was up and down out of the bed last night, and her first and second bowel movements, the second one contained dark red blood which freaked her out, the nurse assured her that it was from the surgery and that she would pass some old blood the first few times.

The night was restless for her, upset stomach and pain. early this morning, it finally got the best of her and she got sick to her stomach, not much came up, and the doctors were not real worried, but it scared her real bad, and to be honest, me as well.

They decided to give her a different kind of anti-nausea medicine called Reglan because she was worried they other stuff would constipate her. That didn't go so good, she had a real weird reaction to this Reglan and felt wigged out and started slurring her words real bad, needless to say, they pulled that medicine from her.

Once she came out of those effects she was back up walking, and at a crisp pace, its not for the lack of trying that keeps her in this place right now. She is trying to rest now and have a nap. We hope for a Thursday release date still, possible tomorrow, but that would take a small miracle right now. I dont want to rush it either, she needs to make sure everything is good to go, its a long drive back here if she has problems.