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.

Updates From The Front...

I really stink at updates and I havent a clue why because so much is going on within my being that I should get it out otherwise it becomes a mixed up mess.

However, here is a quick update on where we stand and later I will update my emotions and the other bits and pieces that have overwhelmed my soul lately.

Dans cancer is considered liver even tho its not really liver cancer it just "set up shop" there. He had a lung biopsy last week but havent gotten word on those results yet.

He begins chemo on the 30th so next Monday. 

We have been at moms off and on since we lost our place in July but have been able to get some temp. housing starting Thursday(its a extended stay hotel place). We can be there for 28 days thats all the program allows so after that we are hoping to have a more permanent place for the duration of his chemo time(once a week, 4-5 hr sessions each time, 3 mths long).

We finally got some finances in order with the retro unemployment he was due and SSDI and hopefully SSI as well. That will be tended to this week.

I will start some homeschooling in a couple of weeks, I need to see how chemo goes for Dan and how he reacts before I set up a school schedule for the boys.

Life is being taken one day at a time right now and I think it will be like that for many years to come and thats alright. I think it makes me appreciate all that I am and have doing it that way instead of worrying so much about future effects.

I think thats the main update. Finally an upswing in our lives but now the big stress and worry begins with his chemo. If anyone has ideas about food let me know cuz Ill be stocking up this weekend on Essures and stuff like that and stuff for soft casseroles, etc.

Be Blessed...I Am!!

Nowhere to Go but Up...Right?

Not Defined By A Negative

There is so much to say and so many thoughts rambling in my soul and my brain that I figured I needed to write it down. Hopefully it will calm not only myself but perhaps others in similar situations.
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Dans health has been on the decline for a long while now. Started with his back and then a couple weeks ago they found a shadow on his chest xray. So the drs ordered a CT scan and found numerous small tumors throughout both lungs and big ones in his lymph nodes(in lung area). They also found a lesion in his liver. They didnt think the two were related. They ordered an MRI to be sure of what the tumors were.

Once the MRI was done they still had no idea on the small tumors in his lungs because they were too small for the MRI to get a good pic of. However, the lesion they thought was nothing serious turned out to be cancerous. When he had the CT it was about 8mm(think thats what it said)but a week later at the MRI it was 3 inches by 3 inches so it had grown quite a bit.

Next week he will have a biopsy to confirm the cancer and see how bad off it is,etc. They are also gonna send him a letter with an appt for a pulminologist to see what the tumors are in his lungs. This Saturday(6/12)he will have a bone scan to see how bad off his back is. See during the MRI they found he had nerve closure and two of his vertebrae were basically bone on bone, the disc sac was gone. So his back is even worse then before and they are gonna do a bone scan to see how his bone density is and all that jazz. He's also getting another spine xray done today.

So this is where we are at. Both Dans parents died relatively young(mom-53, dad-mid 60's)from various cancers so it runs heavily in his family. He already feels like its serious enough he wont be here much longer.

I hope to high heaven he's wrong but he hasnt been so far and that scares me. I have this calm deep within me and I dont know why or where its coming from but its there.

Dont get me wrong, doesnt mean Im not terrified because I am, but for some reason there is a calmness or stillness within my soul that all will be well no matter what actually goes down.

Our adventure together is not over and even if his spirit leaves this world our adventure will continue. We have 3 sons together, that doesnt just stop cuz one parent is gone. He will always be a part of our lives and thoughts and actions.

Fears are a natural part of life, just like breathing is. Fears are important because without them we wouldnt understand or recognize strength.

I know this and find solice in that because I know there is always going to be a positive coming from a negative.

I have these fears that seem silly and worthless in the face of unknowns but are there nonetheless so I face them.

*I worry that I will end up living with my mother and I absolutely cant do that!
*I worry that Ill never have sex again. Now isnt it silly that I worry about that when it should be the last on my list of worries? I worry I wont find that intimacy again and I worry that I wont have it much longer as this illness finds its way through my husbands system.
*I worry that Ill be a widow before age 40 and be raising 3 small boys all alone.
*I worry because I count on Dan for answers about boys and how they act and perhaps why they act as they do cuz I grew up with sisters so my family certainly cant help in many ways. Generalizations sure but not boy specific things cuz they dont know.
*I worry and actually feel a bit guilty about not knowing how to tie a tie so I wont be able to teach my sons how to.
*I worry about people saying "told you so" or "this is what happens when you dont live a Christian life". I dont want nor need that but I feel it coming and I know some will think it even if they are smart enough not to say it to my face. I KNOW my family is thinking all the trials Dan and I are facing are because we left the LDS church.
*I worry about doing Dans final things...like getting death certificates,etc.

See, these are some of the thoughts that cloud my thinking, silly yet probably pretty darn normal. I even plan on taking notes from Dan after we get the final diagnosis on whats up. That way I will know how to do certain things when the time comes or at least have an idea.

Dans one of the smartest people I know and I value his input. I plan on having him write a journal as well about his feelings on things going on. Not to mention I want him to do one so his boys have a record of his life experiences and something in his handwriting.

So much coming our way and all the while we have to worry about stinkin' money cuz neither of us can get work and we are just about out of unemployment and such. No answers, just lots of unanswered questions and worries.

I know someday the clouds will part but its hard to see that when they seem to only get thicker and thicker.

No, its not fair...but nothing in life is and nothing in life should be fair. How are we to learn and grow if everything was fair?

We cant, its that simple(to me anyway). What can we learn from any given situation? What strength and knowledge are we gaining by going through the mud? What beautiful pearl is waiting for us under that mud? I dont know but I intend to find out.

I appreciate all the good thoughts and prayers coming our way. Strength is gained daily because of it and it will never be dismissed or poo-poo'd.

For now, Im gonna stop. I cant think of anything else to say but know there will be more of these as thoughts and fears and bright spots cross my path.