Last Appt with Twitty Doctor

So on the 30th we had our last appointment with the twitty doctor. He just kept yapping about numbers being the same(platelet count that is) and Dan not really having anything so he'll do a couple more chemo sessions and then let it go for 3 mths or so and then at that point do more scans to see if there is a change,etc.

Im SOOOOOOOOOOOO glad we dont have to deal with him again. Even if the new doctor says the same things if he can at least say it in a kind and non-freak out on ya way that will be helpful and better. Tired of a doctor who treats us like morons and keeps changing his thoughts every other sentance. I want a consistant, caring doctor and I dont think its too much to ask for and neither does Dan.

So Dan did get chemo, first time in nearly 6 wks, and its killing him. He was so tired(typical) yesterday after we got home and then was having chest pains(not cool) and today he's spent all day in our room cuz he's felt flu-like and feverish(can be typical reaction to chemo). Most of this is pretty typical especially since he's not had it in so long. Poor guy, wish I could take some of the pain and ick away even if only for a short while.

So thats where we are at. Next Wednesday is a new doctor and hopefully the start of a new "day" where we can understand the doctor and he understand us and we can work together to get this tended to.

I realize Dan probably wont survive this but that doesnt mean we give up or stay with a doctor who is a twit. Nope we will go down fighting!

*and I want to say a special thank you to those who have read this and commented and those who have supported us in other ways. I appreciate knowing we are thought about and loved and wished well*

Update 3/21/11

Dan had new scans done on the 7th/8th of this month. Here is what the doctor said about them(even tho we had the results ourselves days before we saw him).

Dr says his spleen is enlarged but they'll watch it, no biggie(uhhh ya it is). Dr said the 7mm mention of the tumor size isnt right. He says the tumor is really miniscule and basically Dan is in remission but they'll keep working at it. Dr now says Dan isnt necessarily gonna die but he cant predict the future noone can(well duh!) but at the same time he says Dans got a 9-13 mth life expectancy WITH treatment(even tho at the start of this all he told Dan that number was 22-24 mths). The dr just kept changing his tune at every corner.

The report says his liver tumor is stable...no shrinkage nor growth. Dr says that means its too small and more like remission. Yet when I said "so its not grown nor shrunk that means remission?" he jumped my ass(literally jumped down my throat)and went off about scan guys not reading them right and that he didnt say it was in remission just stable. So I said again "so the non growth/non shrink is a good thing and its stable so we can proceed" he jumped on me again about misunderstanding him.

The guy is an ass and Im so glad we get a new dr next month!! He spent an hour with us arguing but at every turn he changed his tune. Anything to make himself look smart and everyone else look dumb.

Dans got fatty deposits in his liver but, according to the dr, everyone does so its no big deal. We could go without chemo or we could do it if Dan wants.

So more time without chemo(that makes it a month w/o). We go back on the 30th.

Im so drained from that doctors room of gloom and doom(seriously between the two of them going at it thats what the air in the room felt like)...I cant even begin to tell you how exhausted I feel and angry and sad and how ANGRY beyond words Dan is.

Here is what I know for sure....

*Dans tumor, according to scans, is still visible and there. NOT miniscule in size.

*The tumor is stable...no growth and no shrinkage. Thats good and bad.

*Dans spleen has "significantly" enlarged since the scans in December. Nothing but watching can be done but he must be a bit more careful since you cant do anything about it really.

*There are fatty tissues in the liver that werent there in the December scan.

*Im freakin' exhausted in every way possible.



Thats the update...for now.

An Update...Some Review, Some Not

Dans been in and out of the hospital since November(4 or 5 times total and more will happen). His blood count and platelet count just wont cooperate. Everytime he does chemo it kills his numbers. That is to be expected but not to the degree that it makes it impossible for him to do treatment the next week. So he's been having a lot of "off" weeks which isnt good for the destruction of the cancer.




He'll have new scans done next month to see the tumors' progress. We are concerned cuz of new developments with his liver pushing out a bit and a new, sore lump under his jaw in the lymph node area.



Im still giving him the shot to force his bone marrow to produce white cells, almost every day. He is also now getting a shot done every other week at the drs(during his chemo time)to force the marrow to produce red blood cells.



His doctor is a twit. He said on Wednesday that their goal, since Dan is in stage 4, is to prolong his life with a decent quality to living, and keep the tumors down. No talk of actually KILLING/DESTROYING the stuff just basically maintaining and prolonging. Utterly ridiculous!!!!!!!



I cant wait to move cuz hopefully we'll find doctors who give out hope and positiveness.



I also learned Dan was giving life expectancy numbers when this all started, he just never told me. With treatment(since he chose that route)he was given 22-24 months.



That was good to hear but deflated me a bit.

Still gonna go on fighting and keeping the positive and hope alive. Not gonna give up...neither of us are.



But its been very, very hard. And we have an additional person in the house now so its been even more stressful(on me at least, Dan loves it). So thats been an adjustment.

My emotions are all over the place over everything anymore.



But thats really where we are at. Fighting, dealing with Dans body not cooperating and a doctor who could really care less and lifes daily, regular struggles.

BuBye 2010

I cant say Ill miss ya, cuz I wont. I never miss the years...they go too quickly to miss for me anymore.

Let me tell you what 2010 meant to me...

End of my normal and reassurance that kindness does exist, thats what it meant to me.

In the beginning of the year we struggled financially but held our own as Dan tried to find work(as did I)with no results.
Then we lost income and on the verge of losing our home we found out about the cancer. Then we lost the house cuz we couldnt afford rent anymore.

I found out that my online friends are amazing and that I had friends I didnt even know I had and was blessed to have each and every one of them.

Then it was living hither and thither until September when we finally got SSI turned in and approved and into a state and then gov't(HUD) run program that helped us get into a place(2 bdrm apt)to live for the next year. Through this HUD program we have been blessed beyond words by strangers who have given of themselves and their time and money to make my boys happy(and in turn me and Dan). The blessings are too much to repay but they will be paid forward as we begin giving to others as best we can cuz we love doing it and havent been able to this past year but we will in 2011 come hell or high water!

Dan started chemo and his health went into the toilet. He's been in the hospital 3 times since November to have blood and plasma transfusions. His personality has shifted into PMSville(never know what you are gonna get). He's tired ALL the time and sleeps most of every day. He's hurting and you can hear it while he sleeps cuz of the moans and groans and wimpers and crys. He now has fire burning in both legs and numbness on the surface of both legs. This is either due to his already wrecked and needing surgery back or the new med he's on for keeping his red blood cells up.

So, he could end up in a wheelchair before too long if this keeps up. He doesnt remember for more than 5 mins a lot of the time and sometimes he isnt sure of the day or where he is, etc. Sometimes he seems to talk about things I havent a clue about or what he means,etc yet he thinks it pertains to the current conversation.

This is not easy. I miss our old normal but life has slowly shifted to the new normal and although its hard and heart breaking we will survive and we will get through all of this better and stronger.

Now onto 2011....
This year will be the year we beat his cancer! It will be the year we move out of Vegas and up to Utah to be in a calm place near friends and relatives. It is the year of spiritual strengthening.

So there is the update. Same ole, same ole. Tuesday he gets his two chemo meds and will be very tired for several days afterwards.

This year we reunited Dan with his old friend and they are enjoying each others company and I hope that remains cuz they both could use a friend right now. This is the year we say goodbye to Dans brother who lived closest to us because they've decided to cut themselves out of our lives since we cant help them any longer. Good bye, good riddence, and sorry you suck as human beings. I hope you find your way and somehow you find happiness cuz being the selfish twits you are cant give you too much of it....please find it!

The End...

Fear

I dont like you at all.

You make lives harder not only mentally but emotionally and physically. Its irritating and I wont let you win.
You may think you have me beat cuz occasionally you take control but you havent won the battle nor the war.

NO ONE can control me except me. You may think otherwise but that isnt so, so get over yourself.

So there!!!!!


UPDATE on Dan:
He had an MRI this week as well as a head CT. Head CT came back clear(YAY)but we havent gotten the results of the body MRI yet. Next week he'll have a PET scan too.

He went into the hospital last week cuz of low red blood counts, had to have a transfusion at the hospital(spent the night). I hated him being gone but such is life right now. It didnt do much good, he didnt get peppier he got weaker and more tired.

Today was to be chemo again but he's at the hospital again for another transfusion cuz his numbers were even worse this week than last.

Frankly, if you get a transfusion it should work plain and simple!! Thats how my logic works in these cases. Im not happy he's at it again and I feel horrible but again...such is life. We will get through this and go on.

Thanksgiving is the next holiday in line and we will go to moms which should be nice. Day after his big chemo session tho so he'll be tired probably but he wants to go so we will and we'll have a nice time!!

ttfn...

PMSville

Its been like living in PMSville lately with Dan and his ups and downs.

I always realized there would be highs and lows but DANG! I never realized men could PMS just as bad as women LOL.

One minute he's happy and giggly then the next he's pissed cuz I didnt remember something just right. Then two minutes later he's being goofy and stuff like that.

I never know which way the wind will blow in my home and its very unsettling. I will be happy when its over but I realize, at the same time, that things wont ever be what they used to be. We are figuring out our new normal and it will take time.

Chemo and cancer change your world forever, its something Im realizing when I think about next year and the year after,etc. They wont ever be quite like I had envisioned a year ago.

I just hope my nerves hang in ther eduring this unsettled time with his emotions and his side effects and all that goes along with trying to kill the cancer within him.
And then we have afternoons like yesterday....

We dont know whats up but he's got this horrid headache that is so bad he squeezed my hand til it ached and he's had periods of dimentia?


Not sure if that is the right term or not but its like he has no clue whats going on or what time or day it is,etc. Like he argued with me for 5 mins over hearing aids he thought he wore but never has. He cant walk without my assistance cuz his balance is off. He's fallen over a couple of times.


He's done the fallen over and been out of it a couple times before but its been a couple of weeks. No idea what triggers these things but he wont let me take him to the hospital cuz all they will do is observe him and send him home the next day and he sees no point in it but dang its freaky to see him this out of it and unsteady and scared and he's so apologetic(like he can help it). These meds SUCK!!!!!


He's losing his hair and is now experiencing major itchiness and tingling in his hands and feet.


Man this stuff is rough. And even though its freaky Im still calm internally. Hope it stays that way as this gets worse before better.


Im glad the boys dont overreact or really notice these things...that helps some but when he's in a ticked off mood it can be difficult for them to grasp what is going on. They have to be kids but at the same time we need a bit more from them somedays...its a hard line to try and manage.


And I think that catches us up for now. Today he still feels crappy but not like last night. As Ive said before and Ill continue to say...a day at a time and sometimes an hour at a time is the best way to deal so you can keep positive and keep sane.

Anger and Adjustments

Its been a bit, per usual, but Im hoping to do this weekly...at least.

Dan had his first chemo session on September 1st. It went alright but not perfect. He is to have 2 medications used. The first medicine gave him a horrid reaction...felt like his back was being shot up so they had to stop that immediately and just do the second medicine. That went fine.

What has us irked is that the dr told him, after the fact of course, that about 50% of patients have that reaction to the first medicine. Well, gee, that was nice you knew Dan had a degenerative back issue and decided it was ok to give the medicine that could harm his back anyway. The dr told Dan it was a shot to take cuz you never know if the reaction would happen or not...well why the bloomin' hell would you give it a shot on a man with known back issues??? Sooooo stupid.

Well, there is an alternative to the first medicine and it will be given to him tomorrow at round 2. Hopefully that goes better. Only wish I could go with him for this round but I wont be able to since there is noone to watch the boys. Ahhh well, I will call him at some point and see how he is and all that.

We are adjusting to living at this hotel but its not easy nor fun for any of us. If the lady had just thought of our situation it would have been better.

Just been a roller coaster ride. The HopeLink lady got us into this extended stay hotel and it wasnt til we were checking in that we were told it was a week only. Apparently, unbeknownst to us, they only do a week at a time and extend as needed or if they so choose to. Then we were informed the HopeLink lady only would allow us to be in a one bedroom room. Apparently, she forgot(or didnt care)that Dan needed a bed to himself for chemo and so it couldnt be he and I in one bed and the 3 boys in the other. Who does that to people they are supposedly helping?? If you are gonna be in a business where compassion is key...have it. If you cant muster compassion anymore then get a new job.

So we got through the chemo and our first week but it ended the day after his first chemo session. So we call and she begrudgingly gave us another week and that was it..she said. See, she was pissed I hadnt found a job cuz apparently in a city with over 14% unemployment and thousands looking I was supposed to have found one in a weeks time. Not only a job but one that could pay rent and utilities and such on a new apt or home. Ya...ok, her brain left the building long ago. She KNEW I couldnt work as I was Dans caregiver and a homeschooling mom. She KNEW I wouldnt and couldnt look for work yet still expected me too even knowing Dans condition because, according to her, he wasnt disabled and I couldnt be a caregiver unless the SSA(social security admin)said he was and it hadnt when we first visited with her. Thankfully, it has since but still...she clumped us with all the other hard luck cases she sees and we arent exactly the same. NONE of those she sees is quite the same and its unfair to lump us that way. Dan has specific needs now that he's doing all this and she knew that but chose to ignore it.

So, we got everything straightened out that we could and turned in our application and such for more perm. housing now that Dans getting some SSI. Still havent heard if we've been approved nor have an actual interview set. The lady at that place(Family Promise is the name of the organization)hasnt called us back after we busted our butt to do all she requested. Now Dans gonna have chemo again tomorrow and we wont be able to do anything for close to a week while he gains some strength back. He may be able to do a phone interview and she could come here but thats about it.

Its so frustrating. We just need a place to lay our heads and have some peace and space. We need a spot where the kids and I can do their schooling and have some space to play decently. We need a space where Dan can have a room of his own to hunker down in while he recoops from his chemo sessions for the next 3 or so months. Why is this so hard??

Im angry a lot too. I understand its normal so Im not totally surprised by the feelings and I also am not letting them take me over because I logically know why Im feeling them. However, they still pop up from time to time.

Im angry at the people that say they will help them pussyfoot around or treat us poorly. Im angry at the lies dealt us. Im angry at having to ask for help, monetarily or otherwise.

Im angry at Dan. I just wanna yell at him that its all his fault. His fault he got sick, his fault he isnt stronger, his fault he lost his job and we lost the house, his fault he's on all these meds, his fault he's doing chemo and acting like a sissy and sleeping so much instead of being a part of the family. Im angry he's not gonna be able to work again. Im angry he's not a better help with the boys and wont take into consideration that they are kids in a tough spot and even tho he seems to know it he still cant pull his head out and overreacts. Im angry at myself for feeling like someone its my fault and I failed him somehow. Im angry at myself for failing my kids and not having a desire to get a fulltime job and be all happy homemaker, caretaker, and bread winner. Im angry at myself for not being able to be as strong as I feel I should be.

Im angry at the world in general for the stupidity and double standards that exist for stupid, stupid reasons. Im angry that the people around me cant see the bigger picture from the little, NOTHINGS that dont need to be fretted about but that seems to be the ONLY thing they see. There are more important things in this world then whats for dinner or whether that board over there is red or blue or whatever the case is. SEE the big from the little people....

Ahhhhh, it feels good to write it down and logically, I know anger is a part of the trials we are going through. Its a grieving process and I am grieving even if I havent 100% lost anything yet.

I love my husband dearly and Id go to the ends of the earth for him. I love my kids a ton and would do anything I could for them to keep them safe and happy and enjoying life. I love my family and friends for keeping us in their hearts and prayers and all that. I realize I seem like a broken record of whoas and it irritates me that I cant seem to share positive things happening in my life. I dont like feeling like a whiner but thats all I feel like Im doing lately...its unnerving.

I do love my life even with the downs we are experiencing and we will get through them to see that lovely pearl shining...just will take some time.

And thats all for now.