Friday, February 15, 2013

Chemo Days

So, beginning September 1st 2010 Dan began chemotherapy.
At this point we lived in the hotel and space was extremely limited.

Mind you my only exposure to chemo was what I saw on tv things. I expected vomiting, lots of it, exhaustion, paleness, and hair falling out til bald.
I got the exhaustion and the paleness and some hair falling out but he never went bald from it. He never severely threw up although once in a blue moon he did.
I couldnt go with him to these sessions because of the boys. Had no babysitter so he went alone. The first med they gave him he had a horrid reaction to so they had to switch.
He felt awful and his personality slowly changed. It seemed every small annoying habit he had increased into a ginormous annoyance. Like it quadrupled in size.

I had joined a group on a mothers board that dealt mostly with women who were cancer patients/survivors. When I asked what to expect with chemo the two most vocal were kind enough to tell me two things that have served me well in surviving this experience: his tastes will change, literally, stuff he liked before(food) he wont anymore. And the most important one....he will become a raging bitch. They told me how lucky they were that their spouses had stuck around after the arguing they'd caused over nothing and the bitchiness with which they lived life during and after the chemo process. Its usually known as part of the "chemo brain" that happens to all who do chemo. They change in temprement and personality and get really forgetful.

Dan got the bitchies and forgetfulness(mind you this lasts forever). His food tastes changed but not horribly like I was expecting but his personality changed and he did become bitchy over the dumbest things. Got to the point where you just never knew what mood to expect so you lived with a breathe held and on the edge of your seat til you knew. And even in knowing the mood could change in a moment. Ive lived that way ever since and its an awful way to live but such is life right now.

We began a "new normal" that wasnt pleasant but was what it was. Kids were used to daddy being gone all the time and now he was home all the time and sick to boot so they never knew how to act or react and they still dont many days.

Chemo didnt work. It didnt take long(couple of months) for his spleen to start enlarging and, continues to do so til its below his waistline at this point in time, and his platelet count to go down the crapper. When your platelets are too low you cant do the chemo because your immunity is at a bad point. Chemo kills it enough but if your body cant make enough platelets then you are really screwed. So it got to the point that he could only do a full chemo dose maybe once a month instead of the weekly he had been doing. Then it got to the point where a month or two would go by with nothing and finally a year into chemo time they stopped altogether because his platelets and spleen size were just too bad off.

So September 2011 they stopped trying the chemo and kinda left us blowing in the wind with stuff that could be done. Radiation was always out as an option because they didnt know the true source of the cancer so that left little options and his doctors didnt try hard enough to care.

End of September 2011 we moved to Utah because this is where I am from and my family and closest friends are here. We wanted the boys and I to have a good support system for when the time came that Dan was gone. We knew it was coming, the doctors had told us as much as had Dans we prepared for that day.

Friday, February 8, 2013

The Battle Begins...

Every story has a beginning, a starting point.

Ours began in late 2009 when my husband lost his job. You have to understand he was a workaholic. He worked 6 days a week for 10-12 hrs a day and he did it this way for 30 yrs.
So being without work wasnt new to him but going more than a week was. 

The economy had hit the fan and we got caught up in the downhill spiral it had taken on. We had to apply for aid, which kicked us hard in the gut...pride was wrenched for sure. He looked and sent out hundreds of applications and I helped him with that as well as sending out my own. However, after being a sahm for several years no one wanted me despite my skills.

So this was the first blow to him. Then he thought he'd found a job in early 2010 and it fell through because the man only wanted Dan to help him get his emissions bay up and running and once Dan helped him through that...his promises of a job fell through. Another blow.

Then we were struggling to the point where we knew we'd have to give up our house. We rented it but it was a house and we loved it. So around April/May we let the landlady know we'd have to give it up come the first week of July.

I should say that in March Dan was given medical insurance through the VA since he was a vet and all. They did a physical which was standard to do for all new patients.
In April/May we got a letter that changed our world once again.

It said a shadow was found on his lungs and they needed to do more tests(MRI's and the like). He knew immediately that it was cancer and he was a goner. He'd seen too many loved ones receive the same letter and end the same way.

So he did the tests and sure enough it was cancer. However, it wasnt lung cancer...they found a bigger mass in his liver thanks to the MRI's and thats where the cancer was living. The lung shadows were sarcoidosis(sp?) which is tumors just not cancerous.

However, we didnt know what stage or more specifics til mid July(another joy as we were in the middle of moving our stuff into storage and moving into moms). Stage 4 non-defined small cell carcinoma, something like that. They decided chemo was the best bet because they didnt know where the cancer actually started so radiation wasnt going to work.

In the meantime, we didnt have a place to stay as we couldnt afford the house and were leaving. We didnt know what we were gonna mother opened her home to us. She was a true angel. We were with her for a few weeks.

Then we found an organization that helped us get into a hotel for a month, so we could get chemo started and be close to the hospital instead of driving 2 hrs each way once a week,  than they were able to put us into a small apartment where we paid a small amount of rent plus utilities and they paid the remaining rent. They also saw to it that our boys had happy holidays with sponsors getting them toys and whatnots.

We were truly blessed with all these wonderful people aiding us through this gut wrenching, pride kicking, aching soul time period. We can never pay back what was given to us but we can pay forward to the best of our abilities now that we are a bit back on our feet and that will be our lifelong pay forward whenever possible. Its something we want the boys to learn and live as well and enjoy doing!

Time to fight!

Tuesday, February 5, 2013

The Beginning...

I suppose all blogs must start somewhere. I have tried writing blogs before and failed but I feel now is the right time to put my thoughts down and do so willingly and often.

My name is Hillarie. As of this writing I am 40 years old. I have been married to my Love, Dan for a bit over 9 years. We have 3 sons...Connor is nearly 9, Avery is 6 1/2, and Devinn is 5. 

Our lives have been blessed in many, many ways over our time together but the last 3 have been challenging to the point of breaking us many times over.

My husband is 50 years old and dying of liver cancer. IF his grossly enlarged spleen doesnt take him first that is. That issue is due to the chemo but we'll go through all of that later.

Just know we are imperfect people doing our best in an awful situation. My writing will not be perfect but it will be mine. My comments will not express those of my husband, just mine. 

What follows is what started our journey and what will end it. I promise honesty and love but I do not promise happy endings or positive, uplifting posts at all times. Im sure there will be happy ones but there will be many dark ones because this subject is not a happy, light filled one.

I hope you find something in my words that you can take and apply to your life or something that will help you understand those on similar journeys. If you take away nothing but this than I will be is a journey not a destination and the road has never been, nor never will be smooth. Enjoy each and every bump along the way and find the bliss in even the darkness.