Our Life In The Desert » Medical Related

They were right, cancer does suck…

Brandy — Sun, 07 Aug 2011 22:32:19 +0000

I haven’t really talked about it much, because it’s just been overwhelming with everything else going on. Apparently, the cancer I talked about in a previous protected post is pretty freakin serious and serious scares the crap out of me.

I’ve done some research — the outlook, at least according to the sites I read, is pretty bleak. But I’m gonna fight, of course.

I’m taking a medication that makes me shake a lot — but that it’s it sole purpose — it’s also supposed to help reduce the size of the tumors I have on my liver, so that when surgery takes place, the chances of getting it all is increased.

In addition to the medication I’m taking — there is also talk of targeted (or direct, I can’t recall the word) radiation. This possibility actually scares me a lot. This impacts everyone around me and most importantly, it impacts Jerrett in a huge way.

But then again, so does not having treatment — so when things are more set in stone, I’ll have a sit down with him and we’ll talk about the options and see what he thinks.

Overall — this is just…overwhelming. I try not to cry, but I do. A lot. I am trying to ‘get my affairs in order’ as a good friend, Teresa, suggested — but that’s proven to be damn near impossible due to other circumstances.

So…bleh.

A few friends have said they don’t know how to react or respond to me — so I’d like to go ahead and put it out there: Right now, emotionally, I’m trying to ignore the elephant in the room, so please just treat me like you would if I weren’t ill. I want to have fun, do things and go places — that hasn’t changed, yet.

I just kind of felt like writing…

Brandy — Fri, 05 Aug 2011 02:13:52 +0000

I’ve been sitting here for like 10 minutes trying to decide what to title this post. Then I just decided to start writing and I figured, eventually, it would come to me. It’s probably going to be a list post, because it seems to make more sense considering I’ll be touching on a wide-range of topics.

I finally went to California and got all of my stuff. Somehow, Teresa (an awesome friend of mine from high school that went with me) and I managed to play a mad game of Human Tetris and get everything loaded into a 17 ft. UHaul truck. It’s funny to think about the fact that just two months before, we played the same game in Mesa and used a 26 ft. truck.
The UHaul truck they gave me was so filthy and covered in dead bugs that when I got into it to leave on Monday afternoon, it was infested with ants. Ants that tried to eat me alive while I drove. Ants that caused at least three infected spots on my legs and a whole shit-ton of blisters all over my chest and neck. Even ant spray wouldn’t kill the little monsters.
This morning, when I went to get into the UHaul to back it up so we could unload the bed — the ants were still there.
I’m enjoying, very much, having my ‘space’ here at my dads. I think it really helps us be able to communicate better.
He calls me on my cell phone when he needs me :p
As we were driving through New Mexico, the AC in my car stopped working — thankfully, by the time we got to the dealership and they got in it to see what the deal was, it started working again. Diagnosis: It was frozen
Jerrett got enrolled in school today. He’s become so hard to live with that even getting him to go do that was like pulling teeth.
I had hoped to have more ‘back-up’ in the parenting department — but it looks like that’s probably not going to happen, sadly.
I’ve got Dr.’s appointments every day next week, except Thursday. One in Dallas, two in Ft. Worth and one in Decatur.
The oncologist wanted to start me on a medication last week, but I was afraid of the side effects and the impact they might have on my ability to complete my trip to California — so I waited until the day I got home to start them. You may have seen my post on Facebook about shaking like a Parkinson’s patient — I’m still doing it and it’s annoying as hell. Couple that with the requirement to complete a half a ream of paperwork today to enroll Jerrett in school and you get the idea.
I officially write like an old person.
I did some research today on the type of cancer they are telling me I have — I really, really should NOT have done that. I realize, from personal experience, that the info you get on the internet is often one-sided and bleak — but I was reading actual medical websites, so I don’t know. All I know is that Tuesday can’t get here fast enough.
Even with my new sleeping meds, reduction of caffeine intake and regular exercise, I am still only getting about 3-4 hours of sleep per night, which is good I guess — if you consider I went four days without even an hour of sleep the week before last, then regularly got 1-2 hours of sleep after that. Eh, I don’t know.
I went to a concert with some friends last Friday — that was a ton of fun. Still trying to get used to the whole sitting around drinking water while everyone else is drunk thing — but it’ll get easier.
There’s a new Facebook Group where people are sharing their memories of my home town (Boyd, TX) and it’s a ton of fun to read some of the stuff.
The only clothes I have now that fit are some old Levi’s — everything else is so big it looks like a tarp when I wear it. That’s super frustrating and super fantastic all at the same time.
My to-do list is looking more and more manageable these days. I have really put a lot of focus into getting things done so that I can do some ‘me’ stuff after school starts and not worry about having to complete a whole ton of things in order to make it happen.
I sure am thankful for my friend Misty — she lets me talk about death and dying and she doesn’t make me feel like an ass for doing it. She lets me be real and being real is important to me right now.

So — that about does it I think. I’ve had a lot going in the last three months — some I touched on, some I didn’t. I just felt the need to write tonight, so what you see is what you get

Protected: Reaching out for your help and advice

Brandy — Sat, 23 Jul 2011 02:01:01 +0000

No wit and no password — just me

Brandy — Tue, 19 Jul 2011 20:56:24 +0000

Two years ago, when I found out I had AIH, I wasn’t quite sure what to think. Then I started hearing things from my Dr. like ‘life expectancy’ and ‘liver transplant’ and I started to get scared.

I’ve been living with that fear for a while. Then when we went to the Dr. in LA, he seemed to paint such a pretty picture of positive outlook — I started to hope for recovery. I really did.

Looking back now, I should have realized, you don’t recover from the amount of damage my liver has — it’s not possible. The liver is a powerful and amazing organ and it can do a lot of things, including regrow itself if cut in half, but it can’t recover from scar tissue and AIH makes resection impossible — so for me, recovery is unlikely.

I should have spoken up. I should have required him to keep his damn mouth shut until he had a better picture of what is going on.

I didn’t — so the roses were planted and they grew.

Then this morning, almost a month later, I got a call from Dr. Rosy-fucking-sunshine.

I knew they’d ordered some tests that were quite comprehensive and I knew that at least one of them wasn’t covered by insurance (EOB) — what I didn’t know is what the test was looking for and what it’d tell us.

I should have known that Dr. RFS was being thorough — he’d done just about everything under the sun and what he hadn’t done, he’d ordered.

One of the tests that was done is a test of markers to report function, look for disease and report on the amount of toxins in my blood as a result of the failure. In his explanation, he said that the test is generally used to determine mortality and is the more comprehensive blood test given when the MELD score reaches ‘critical’.

The results of my tests indicated stage five failure, which is up from four. It indicated high toxins, but not sepsis level — although “we can’t be sure you won’t go septic very quickly” and it indicated cancer of the liver.

We talked about treatment, life expectancy and options. The moves over the last three months are what will likely hurt me most when it comes to transplant — he said he’s seen it before. He’s seen them deny transplants based of lack of stability and require the patient to undergo alternative treatment for up to a year before they can be re-added. He said that without further testing, he wouldn’t know if chemo was an option — but that for all the support I needed for transplant, I would also need them for chemo because chemo for liver cancer is awful and hard. Then we moved on to life expectancy — which is where he said it gets tricky. Some people succumb to liver cancer very quickly — while others will linger and fight. He said he wasn’t an oncologist and that I needed to get in with one ASAP, but that in his experience, 6-24 months was realistic.

I haven’t told my family. I’ve told some of my friends (and Twitter) — but my family has so much to deal with right now and that needs to be their focus.

So I’m sitting here with it. I am mad. I never wanted to do any of this alone…and I feel more alone than I’ve ever felt in my life.

I also may have sent John a txt message telling him that he’ll get to honor his vows after all. That was snarky and wrong and I shouldn’t have done that. He txt’d back and said, “eh?” — I don’t have the heart to tell him what is going on, because I can’t deal with his sudden indifference where his compassion used to be…so he doesn’t know (nor does he likely care) either…

Maybe I need a list post?

Brandy — Thu, 14 Jul 2011 06:32:55 +0000

I carry a spiral bound notebook with me everywhere I go. It’s small and it fits in my purse and on any given day, I pull it out and jot down things I want to write about at least five times a day. But when it comes to sitting down and putting fingers to keyboard, I draw a blank. I sit here with my Dashboard open and I write a few words and I think I’m getting the thoughts down and then suddenly, it’s like I have a memory dump and all I see is the BSoD.

The BSoD is not a good sign. It’s like writers block, except there might be drool involved and I’m pretty sure my eyes gloss over for 20-30 seconds, minimum.

I’ve resorted to turning this place into a personal journal and I hate that. I remember when I used to be witty and funny and fun…ya know — back before they told me I was going to die and back before my ankles would swell to the size of a fat mans thighs because of my medication.

Ah, the good ole days…

So, I think I’ve decided to try to put forth a bit more effort — once I’ve kind of settled some of the personal stuff I’ve got going on.

I’ll start with this little tidbit:

A week after moving to California, I was asked on three (it might actually be four, I can’t recall) separate occasions if I needed help or if I needed someone to call for help for me because I had these bruises from moving — one gnarly one on my arm and the other on my calf. Apparently, the people in California are very friendly and willing to help when it comes to possible physical abuse — and that kind of freaked me out, because I’ve never been around that type of thing before. John joked that it was because it was such a rampant issue in the area — but really, who knows.

I am happy to report — after flying through countless cities, sitting next to strangers and spending a lot of time surrounded by people I don’t know while at the hospital (and doing just general living while here in Texas) — the only comment I’ve gotten about the 20+ bruises on my arms was one made by a lady to her husband, in a hushed voice they assumed I couldn’t hear.

I was accused of being an IV drug abuser.

Ah — Texas, how I love you so.

I also found out today that I have blood poisoning from one of the IV sites on my right wrist (the really bad looking one in the pictures) — I suspected yesterday, when I posted on Facebook that I was seeing red lines on my arm. It was confirmed — I’ve got antibiotics on board to try and fight that mess.

It also means I’ve been instructed not to visit the hospital any more, due to an already compromised immune system and the fight that’s taking place in my body right now.

Yup — it’s been a damn good year, I have to say.

*The picture is my dad, Shooter. Isn’t he charming? Yes, that’s an ear ring and a pony tail. Don’t ask. Really…it’s just best you don’t.

The sum of everything, minus some things…

Brandy — Wed, 13 Jul 2011 09:16:40 +0000

I haven’t really updated since the hospital stay, so I thought I’d take a few and write about all that’s been going on over the last few days.

If you’re here from Twitter or Facebook, you probably already know a little about what’s going on with my family back home in Texas (where I’m writing this post from) — basically, my stepmom fell ill about a month ago, while my dad was hospitalized for health conditions of his own. While the family rallied and tried to meet her needs at home, they quickly realized that she needed more than they could offer. Ultimately, they decided (with the help from her MD) to have her admitted to the hospital, so she could be transferred to a local rehab clinic that could meet her needs until something else could be arranged.

Unfortunately, it never got that far. Upon admittance, the required blood work revealed some health issues that no one was aware of (this aside from her already debilitating arthritis and her advancing cancer, which she was getting chemo for) — and within a few days, she was transferred to a larger hospital, where she entered ICU.

Since then, her health has deteriorated to the point that the family has now made the decision to move her to Hospice Care on Thursday.

So, Jerrett and I boarded a marathon plane adventure (I don’t think I can stress how much I loathe the Wright Amendment) and arrived in Texas this afternoon to spend some time with my family.

Those of you privy to protected posts won’t be surprised to learn that there are additional factors at play here as well — all of which I’ll share in a protected post at some point in the next few days, I’m sure (You’ll need to re-request the password now, which you can do via this form).

As for my health — I’m just not really sure where that stands at this point. So basically, I was in the hospital from Friday afternoon to just before noon on Sunday. The general consensus from the Dr.’s was that I had some sort of eating misadventure — apparently, I’ve forgotten how to eat and I ate to fast. Nevermind that I didn’t get sick until 7.5 hours after I had eaten my last meal. Nevermind that what I threw up didn’t contain food. Nevermind that, even with my extremely high tolerance for pain, this pain was bringing me to my knees and it was located right where my liver is.

Nope — the liver was fine. In fact, in keeping with the tradition at USC, it appears that I might even be healed! My liver, which is so damaged it only functions at about 15% and has historically been large since this all started over two years ago is now ‘normal looking’.

Yup — normal looking.

You wonder why I question them? That is why I question them.

But not to worry — they offered to have me meet with a dietician, so I can learn to eat again…so, those pesky, drop to your knees and curl in the fetal position pains I’ve been having should be all cleared up in no time.

Did I mention, I’m totally healed?!

Ugh.

I won’t even bore you with the pictures I posted on Facebook of the 16 attempts to stick me.

So, as you can guess — my stress level is pretty high. I’ve got a lot going on (some of which I didn’t even write about) and the pain I have in my normal looking liver? Well — I still have it.

I’m also writing this post on about 4.5 hours of sleep since Sunday morning — so if none of it makes any sense — someone please tell me so I can fix it after I’ve had some sleep…or a triple espresso with a No-Doz chaser.

A lovely weekend in the hospital…

Brandy — Fri, 08 Jul 2011 23:44:54 +0000

Last night, about 7:30, I started to feel kind of off — I had pain in my liver area and then I started throwing up.

It wasn’t awesome.

The pain got worse — then it became unbearable.

After a night trying to power through it — I finally heard from my Dr.’s MA this morning and I was told to report to the hospital for admission.

So, here I am. In the hospital. Right now, I’m waiting for them to get all the ‘welcome to the hospital’ crap done…what I really want is some pain meds and slumber.

I’d also like to be able to eat — I haven’t had anything since about noon yesterday and I’m feeling a little peckish.

John drove me. I was glad he was able to get away and bring me. I feel awkward asking for help…I would have driven myself, if he hadn’t been able to.

Now, hopefully I won’t get some crazy hospital disease and die.

Heading to BlogHer’11 in August

Brandy — Thu, 30 Jun 2011 21:19:55 +0000

The title says it all, really. I purchased my ticket at a time when things were a little less crazy in my life. My plan was to go and focus on building my brand, networking outside my core influence group and learn some tips and tricks to PR outreach.

I had hoped to focus more on my writing after we moved. I enjoy it and I generally have a lot to say — but things happened and as you can see, most everything I’ve written since we moved has been password protected because it’s just not stuff I want the world-at-large sniffing around.

It is, after all, my blog — I use it to write about personal stuff. Deep stuff. Like about my marriage falling apart, my husband leaving me and me being financially and emotionally dependent on him, even though we aren’t together.

Life just kind of sucks right now. So I’ve been writing about that.

That kind of writing doesn’t usually produce much in the way of content that PR folks are looking to capitalize on — and password protected posts? Well, you might as well just forget it.

Then, there is my ever-changing medical issues. If you read my post last week about my new Dr., then you read that he had high hopes for my condition and my future. However, if you were in my bedroom an hour ago while I was on the phone with his MA, you would have seen the tears streaming down my face over the news that they are ‘extremely concerned’.

Talk about highs and lows.

Which brings me back to life just kind of sucking right now — being alone, here, with no one to talk to and no one to hold me and tell me that it’s going to get better.

Especially when it’s not really looking so much like it will.

It all just sucks.

This blog post started with me writing about committing to go to BlogHer, even with the stuff I have going on and even with a blog that isn’t quite what I’d hoped it would be…but now, I think I’ve had one to many blows…I’m not sure I can do it…

I’m scared.

Just a quick note about the Dr. visit

Brandy — Thu, 23 Jun 2011 03:53:01 +0000

I narrowly escaped being admitted for an endoscopy — instead, I convinced him to have it done here in Bakersfield. He was very, very concerned about the bleeding — much more concerned than my previous Dr. who assured me that it wasn’t anything to worry about, given the current circumstances here at home.

Also? This Dr. gave me MUCH different information than my previous Dr. MUCH different. Like…Whoa different. So much different, in fact, that I have some serious concerns about something — but I’m not sure if it’s the previous Dr. or this guy.

And, no matter how hard I tried to get the information from my old Dr. to my new Dr. — he had about 4 pages of my 8 inch thick chart.

Basically, he told me I’m not going to die. He doesn’t let patients die and since I’m his patient, well, I’m on that list.

He also mentioned that while transplant is something that may be in my future — it is far from a certainty. In fact, he takes a far more aggressive approach to medical treatment and has basically made some major changes to my medicine regimen.

I also had my first bone density test today because, according to him, this is something that needs to be done every year because of my prednisone.

I am going back in ‘about a month’ for a dermatology appointment for the rash on my leg, a cat scan and something else I can’t seem to recall — all of which he is planning to do in one day.

All in all, I think it was an ok appointment. Like I said, I’ve met him before, when he was in Phoenix — and he is nice enough, but he’s a far cry from my emailing, personal phone number access Dr. in Phoenix who I had a really fun friendship with.

So, at this stage, the news seems really good. I’m hoping that what he told us today is, in fact, a true prognosis of what is to come. Naturally, I have concerns because, let’s be frank, I feel like shit most of the time. I’m really, really hoping that the major medicine changes will address that and I’ll start to feel more like myself.

I’m keeping everything crossed. I’d love to have a semi-normal life expectancy. I’d love to be able to get a job outside of the house. I’d love to be able to…live my life. It seems like, for the last two years, I’ve been existing my life.

Also, I’ve lost 60 lbs.

You read that right. Sixty.

Six. Zero.

Lemonade out of Lemons, my friends. Lemonade

Tuesday can’t get here fast enough…

Brandy — Mon, 20 Jun 2011 05:21:13 +0000

John gets to come home from his first non-hitch, hitch, on the rig out to Elk Hills. We’ve talked daily about what he’s doing and what it’s like — but it’ll be nice to sit down and chat about it some, face to face. Without rushing and out of the public eye — which is how it’s been every time I’ve gone up to Taft to visit and take food and other stuff he needs.

It’s just going to be nice to have him home. Jerrett really misses him, I know. He’s not good at communicating his emotions and he’s struggled a lot over the last two weeks to let me know how he’s feeling about everything that’s going on — but the one constant has been having John come home and spend some time with him, so I want to make sure we can make that happen while he’s here. For however long he’s here — something we still don’t know.

I’ll be glad to hold his hand again. I know it sounds silly — but it grounds me and I’m really in need of some firm foundation right now.

I’m also looking forward to going into LA on Wednesday and finally getting all set up with the clinic here. I’ve got my standing orders for labs, which came with me from Phoenix, so they’ve been watching my numbers, even though I’m still not quite a patient — but it’ll be interesting to meet with Dr. Kahn and discuss his medical direction for treatment so that we can prolong the use of this liver as long as possible. I don’t know if I wrote here that he actually moved to LA a month before I did from Banner Good Sam (the same clinic I went to in Phoenix) and we actually got to meet and discuss my case before he left to come out there, but that’s the case. I gotta say, that’s a pretty great stroke of luck for me.

Plus Dr. Ramos tells me that this guy is a freakin brain trust — a savant of hepatology, in high demand no matter where he sets up shop. Don’t worry, I asked Dr. R why I got stuck with him then…he would expect nothing less. If you remember my nightmare of a hospital stay — then you’ll appreciate that his response had to do with no one else in the practice wanting to deal with me. I’ll miss joking around with him — even if I kind of felt like he dropped the ball from time to time – the man had an awesome bedside manner.

All in all, I’m not looking forward to the transplant process or getting to that point — but it’s coming, no doubt. I suspect, the first plan of action will be an updated biopsy to assess the amount of damage I’m currently dealing with. My last biopsy already indicated that I was almost in the final stage of damage — and I know from my symptoms, which I don’t really talk about all that much, that my failure is starting to progress. I struggle most with cognitive and memory issues — I also don’t sleep or eat much.

I’ve been adjusting well to the Prednisone — which I started taking again after the trial run of the other drug back in Feb/March — finally, after two months of cankles, bad skin and sheer exhaustion, I’m starting to feel a bit more normal — or as normal as I’ll ever feel, anyway.

If I had a choice, I’d stay on the Prednisone, only because I know it works and coming off of it/going back on it is miserable. I get a lot of the side effects and it usually takes me a good four to six months to get those under control…meanwhile, I’m driving everyone around me batty.

It’s a real good time.

Anyway, it’ll be good to have John home for a bit. To be able to talk to someone about the whole illness and death thing and have them get it and not be all freaked out about it. I hope we can talk about it — with everything else we have going on, it might be difficult — but right now, I just need some normal.

Even though it looks like I’ll be facing all of this alone, soon. Which reminds me — when I get my other computer back up and running, I guess I need to re-work my obit…what a pain.