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Archive for the ‘Medical Junk’ Category

They’re continuing the migraine appeal (to take me from 30 to 50%), and contradicted their reasons for not approving me the higher amount. Seriously. In one paragraph, the examiner noted 3-4 migraines within a 2-3 week period, then lapse of 2-3 weeks before the onset of another migraine or cluster of migraines. “Severe nausea, vomiting, photophobia, left side parathesis” follows that, as well as how I treat the migraine (medication, very dark room, lying very still, alternating heat and ice), and then go on to say that…its not debilitating enough to prevent me from working. How many of you bosses out there are willing to hire someone who can’t move for 2-3 days at least once a month? Anyone? Bueller? Bueller?

The breast cancer is again denied because while they have documented evidence of three complaints and a diagnosis of fibrocystic breast disease while in service, the examiner noted a strong family history of fibrocystic breast disease (the examiner last month). I had Justin come in the exam room with me, and he said that NEVER was said by the dr or claimed by me.

The mental disorder is “clearly evidenced to exist prior to military service” (no records anywhere or statements to indicate that), and that the normal progression of the disease was not complicated by my service, as this disease usually has onset in adolescence or “early adulthood.” I joined the army at age 19. I discharged from the Guard at age 28. Wouldn’t that cover “early adulthood?” Wouldn’t documented traumatic events during service have at least a 51% chance of “complicating or aggravating” the normal progression of the disease?

They didn’t address at all my PTSD. Maybe on a later appeal. Two of their examiners said I have it. One did not. So…PTSD denied. WTF. The law says at least a 51% chance…last time I checked, 2/3 was more than 51%.

I told Justin they’ve won, he said no. The truth is, I’m tired. I’m worn out and depressed. They said if I appeal this decision, I must do so formally, and include specifics of why they’re wrong, i.e., after reading their stipulations, I basically have to be a legal and medical professional in order to send in my appeal. I’m going to forward all this to my attorney, but its still so frustrating.

They also said they can’t give me an earlier effective date on the migraines, claimed when I reopened my case in November 2008, because I didn’t claim fibromyalgia until June 2010, and the migraines were granted as a secondary to fibromyalgia. Here’s the catch. In 2008, I claimed all the symptoms for fibro (I didn’t know about fibro by that name). I WAS APPROVED, at 10%, for an “unspecified illness” that went on to list the symptoms I’d claimed. In 2010 my family dr referred me to a specialist and I got the diagnosis of fibro. The specialist at one time did a stint at the VA, and wrote out a letter for me to present to them. In the letter, he stated upon reviewing my records I’d had the symptoms at least since 1992, and that his professional opinion is that is when the fibromyalgia began to cause difficulty for me. I gave the letter to the VA and added the claim for fibro that same month. They approved it quickly…but only gave me effective date to the fibro diagnosis (by an outside specialist). They had their doctor examine me in 2009 and gave me the 10% rating for “unspecified illness with symptoms blah blah blah” and then after my specialist diagnosed me and sent the letter (i.e. new evidence), instead of putting it in support of my claim for “unspecified illness with symptoms blah blah blah), they only did it back to June 2010. Does this make sense to you? Same exact freaking symptoms. I just got an actual NAME for it, and added new evidence, so it screwed me out of 18 months comp?

What it boils down to is that I’m being punished for not going to the doctor very often after I got out of the Army, because Hello, I didn’t have insurance for most of that time. I’m being punished because I don’t go to the ER or the doctor every time I get a migraine. My last ER visit for migraine was 2007. Let’s see…sit around an ER for several hours, bright lights, lots of noise, while puking in a bag, or lie in a dark room and take same meds they’d give me via IV in the ER? Sounds reasonable to me. I’m being punished because I’m easily confused after all these freaking surgeries and my memory has suffered (which is why Justin goes into the exams with me now, to tell me if I or they said something I can’t remember). I’m being punished because while my issues technically are not 100% disabling because I have good days as well as bad days, they don’t take into consideration that no one will hire someone who has to call out sick every couple weeks. I don’t live in a metro area, there aren’t a lot of jobs available to begin with here.

I never had a migraine before I came back from Saudi. I never had breast lumps and/or pain until after I was on active duty. I never had any mental issues diagnosed (or even seen about) until I was active duty. I don’t even care about the mental right now, I knew that would be a losing battle because I destroyed evidence when I was going for my flight physicals. I took the records out of my medical record because the recruiter and I were left alone with them and she told me to do it, and I was stupid enough (and wanted to fly badly enough) that I did it. I should have kept them but she took the pages from me. Dumb dumb dumb. I do care about the liver cancer. I do care about the fibromyalgia, which is considered presumptive (automatically related to my Gulf War service), but because I wasn’t diagnosed within one year of discharge, they don’t have to give me the full benefit (that’s what they said anyway). I don’t care about the breast cancer…I’m 15 years post-diagnosis and God willing it doesn’t come back. I don’t care about the knees. None of that is going to kill me. I care about the liver cancer because barring an accident, the liver cancer will most likely be my cause of death when I go. I care about the PTSD because my life has radically changed due to it, but even that I’d let slide if they’d just give me the connection for liver cancer.

They even said I said I’d slept walked as a child when I got treatment for sleepwalking in Saudi. DO WHAT? When asked if I or any family members had every slept walked, I said that my uncle had a few times when he was a kid (either Uncle Carvis or Uncle Kernis, I forget which one now). Somehow that became ME sleepwalking in elementary school. That conversation happened in very late 1990 or very early 1991 (in Saudi), and I honestly can’t remember everything that was said. But I didn’t sleepwalk as a kid.  That much I know for certain.

OH get this. They said the Social Security records validated my complaints BUT they couldn’t consider those because they were “too old.” My last review for continuing Social Security eligibility was…last fall. Less than a year ago. But those records are “too old.” Unless my lawyer wants to do anything, they’ve won. I fought from 1994-1996, and reopened it and have fought, continuously and hard, since 2008. I don’t have it in me anymore. This is the government and this is what they do.

They want me to remember, in detail, everything that happened to me or that I said or did 20+ years ago. I can’t remember my own name some days. They also said the medical form I filled out in 1991 when I discharged…that I said I had no problems with migraines or sleeping or nightmares or…etc etc. First, I remember no such form (not that I didn’t fill it out, I just don’t remember it). Second, I’ve asked repeatedly for them to produce said form, and they won’t. What I recall of discharging was “name, rank, social, payroll signature” and they were pushing stuff at me so fast the only thing I actually remember signing was my DD-214. Third, a lot of my symptoms didn’t show up right away…I returned in April 1991 and I discharged in June 1991. Not a lot of time for stuff to start showing up.

Politicians won’t help either. They want me to bring new evidence to them before they’ll get involved. There isn’t really any new evidence. This is all stuff that is documented, but the VA doctors deny, the civilian specialists (many, many of them, across three states and multiple facilities) all feel its connected. I’m screwed, mostly because I didn’t keep records and didn’t go to the doctor for a decade after I discharged unless I was deathly ill because I couldn’t afford to. Its pretty hard getting medical records that are 20+ years old these days, especially with so many clinics and hospitals merging, closing, being bought out, etc over the years. Bottom line, keep everything. If you have a house fire or two, well, you’re outta luck. Everything I had from my army time was lost in my house fire in 1999. The only reason my DD-214 was saved was because for some reason I had it at my mom’s instead of in my house.  I’d really love to have all my old journals back.

Whining over. Stick a fork in me.

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So tomorrow is the day.  I’ve been having trouble sleeping the past couple nights, so I doubt I’ll even bother trying tonight.  We have to get up about 2:00 or 2:30 in order to get everyone out the door and to Ochsner by my 5:00 a.m. arrival time.  Maybe I’ll sleep on the way down there…maybe I won’t.  Regardless, I’ll get all caught up on my sleep in the next few days LOL.

I’m not really nervous, not yet.  I’m dreading it though.  I know its going to hurt like the dickens and that the recovery is really gonna stink.  Previous surgeries, I’ve had my big blue recliner to recuperate in…and sleep in for the first couple weeks back home.  But, it finally bit the dust, and the recliner I have now, when new, was comfortable, but it was extremely cheap too and now ITS getting broken down.  Ahh well, I’ll figure something out.  I may just have to get someone to drag me out of the bed every morning 😉

My cats won’t leave me alone.  Gilda is shy and somewhat anti-social…I have to pick her up to get her to sit in my lap at all.  Even she is hovering around me.  I can reach out right now and touch any three of them at a moment’s notice.  I’m sure if Perry were inside he’d be hovering too.  They know something is up.  Maybe I’m more stressed and nervous than I realize.  I’m going to miss them while I’m in the hospital.

I’m choosing to look at this as just another surgery, and I’ll come out on the other side just fine.  The alternative still worries me a little, but I’m doing all I can to pray and get back to where I need to be…I can’t do much else about that because what will be, will be.  I do feel good about the surgery…just not the recovery.  In one sense, knowing pretty much what to expect as far as the pain goes kinda sucks.

So anyway, I’m just trying to get things ready to go, but I know I’m forgetting at least a dozen things in the process.  I was lying in bed at 2:00 a.m. last night, making a list on my iPhone of what I need to take.  I’d be lying if I said I wanted to do this, but at the same time, I do want to get it over with so I can get busy with recuperation.  I just want it all over with so I can come home and enjoy what’s left of the Christmas season.  Its my favorite time of the year.  And yes, if I end up with a protracted hospital stay, I WILL have a Christmas tree in my room.  Lights too.  I’ll make it happen…Amazon is an amazing, wonderful invention 😉

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All of you who are Christians know the old saying…”If you died tomorrow, would you go to heaven?”

Since getting the first news of my cancer returning, I haven’t cried.  I haven’t stressed.  I’ve felt like its all going to be ok.  The stress I’ve had and the few tears I’ve shed so far have been for my kids, mainly, but overall, I feel like everything is going to be ok.  I’ve talked to my girls, who are taking this diagnosis really hard, and reassured them that no matter what happens Monday, I’m going to be ok.  I told them even if I don’t come out of that operating room, I’m going to be just fine.

The truth is, I don’t know what to believe anymore.  I lost my faith for a time after my stepdad Jay died.  I was so angry at God that at times I even questioned His existence.  Deep down though, I always *knew* I was just acting like a pouting child, trying to get my Father’s attention by denying Him.  The anger really didn’t last long, but it was still there, and something I still feel guilty about.

When I carried Ruby, I never got mad at God.  I prayed like I have never been able to pray before or since.  I had a lot of trouble praying for her at first, because I felt like it was a selfish prayer, but I got over that and prayed and prayed, cried, begged, pleaded with Him for my baby.  After she was born, and I could see evidence around me of how she’d touched people in her very short life, I was sad, even depressed a little, but I was ok.  However, along about what would have been her first birthday, I wouldn’t say I got mad exactly, but I was extremely bitter.  My health was continuing to decline, I couldn’t do any of the things I used to be able to, I could see the babies born around her birthday crawling, walking, cooing, looking oh, so adorable, and I wanted my baby.  I started realizing that when I went to church, I couldn’t focus on the message, all I could do was think about how much pain I was in sitting there, wondering what was for lunch, just weird stuff that would pop into my head.  I kept having to force my attention back to the pastor (who is a very good pastor by the way), and I was getting frustrated.  I couldn’t pray anymore.  I didn’t feel like I could ask for anything for me because again, it was selfish.  When I’d try to pray, my mind would wander.  I realized it was Satan trying to keep me away from God, but I couldn’t seem to do much about it.

I began to slip…I started letting swear words drop more and more often.  I got mad easier, at little things.  I deliberately got into arguments with my mother when she tried to preach to me.  For the most part, I quit “praying” altogether, although looking back, I realize that I never failed to thank Him every day…when I was able to climb out of bed, I’d say a quick “Thank you, Lord,” or something similar.  Whenever anything good happened, I would do the same thing.  So I always felt like He was still in my life, if not directly in front of me.

Since the cancer returned, I haven’t really been able to pray much.  I’ve said a few, “Thy will, not my will” type prayers, and a couple times I actually prayed that He would deliver me from the surgery and everything would be fine.  But I felt guilty…not worthy.  I don’t feel like I’m where I need to be.  People have assured me that it doesn’t matter, that He understands because of what I’ve been going through, that I was truly saved, therefor I’m going to Heaven if anything goes wrong…but honestly, its not the way I was raised.  I believe people can and do backslide.  I’ve been told that if you backslide, you were never truly saved to begin with.  I beg to differ.  I KNOW I have been saved in the past, and I KNOW that I have backslid, more than once.  I believe in God wholeheartedly…I try to do what’s right with my life, and I try to be a positive influence to my kids.  But I make mistakes…sometimes big ones.  This whole past year and a half haven’t been pretty.  I can’t seem to figure out what I really need to do to get back to where I need to be.  Justin thinks I’m holding myself to an impossible standard, but I’m not…I know I’m going to make mistakes.  I can’t explain it, but I almost feel as if God has turned away from me with my inability to pray and focus on that prayer, to the exclusion of all else around me.

Its something I’ve struggled with for months, but I pushed it aside because I was still firmly believing in God and his ability to answer prayer and provide miracles.   This morning however, I got scared.  I had one of the worst nightmares I’ve ever had, but recounting it, its so rediculous.  I believe it was a message from God, although not as powerful a message as I received in 2006.  Perhaps it was more of a warning, a reminder, I don’t know.  All I know is that at the worst part of the dream, I told myself, “This is a dream, wake up now,” and I woke up.  The first thing I did was thank Him that I’d woken up.  The next thing I did was wake Justin up and ask him to pray with me.  As he was hugging me and waking up enough to pray, I managed to mumble, “I’m afraid for my soul.”  That man, I do not deserve him.  He prayed for me for over 30 minutes.  I was mad, because while I was praying along with him, my mind kept wandering.  I looked at the clock several times.  I cried a couple times.  I again had trouble focusing on the prayer, the nightmare, whatever message God may have been sending me…my brain started to rationalize the whole thing.  I started coming up with excuses, and that made me madder, and being mad made me have even more trouble praying.  I know I’m ADHD but dang, I’ve always been able to pray until about 3 years ago.

Basically, I’m not sure where to go from here.  I’ve been staying out of crowds because I can’t risk getting sick, and flu and everything else is ripe this time of year.  I’ve been hesitant to go to church, because I think that people will say “She’s only coming because she has cancer again.”  My brain will NOT let me stop thinking all these things.  I just want peace.  I think part of my problem may be that there’s a part of me that hopes I WON’T come out of that operation, because I’m so tired of constant pain, constant disability, constant nausea, constant weight fluctuations.  Its all just getting to be so much.  Everyone thinks I’m so strong…after every surgery, I don’t cry, I don’t even complain much.  I grit my teeth, get back on my feet ASAP, and do everything they tell me to do.  Admittedly, I do ask for the strong drugs after surgery.  I’m afraid to take too much pain medication here at home because of the history of addiction on both sides of my family, but in the hospital, I give in to the relief because its controlled.  I’m sure it doesn’t make sense, but it does to me.  Anyway, I’m not strong.  I’m very weak.  I don’t like this…I don’t like not being able to enjoy my kids and my life.  But…I deal.  Still, it makes ending it all a very attractive prospect.  I would never commit suicide (there’s the whole “hell” thing), but drifting away on anesthesia, well, it doesn’t sound all that bad.

So, I’m all over the place.  I need prayers, lots of them.  I want to be able to find peace with God, with myself, with my health.  I want to be able to “pray without ceasing.”

I know we can’t always get what we want, but I feel like that’s something I need.

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Really trying to stay positive, but every little thing that goes wrong really sends my mind whirling. For instance, I passed out yesterday…first time in a long while. I’ve been having dizzy spells for months. This morning I fell again…didn’t lose consciousness, but it was a close thing…lot of roaring in my ears, felt hot and flushed all over, massive headache out of the blue, dizzy and gray around the edges of my vision. After I got up off the floor, I was real wobbly on my way to my recliner. I hadn’t had a full meal yet, but was in the process of eating when I went to my room to get my glasses. I fell on my way back. So I sit here, trying to figure out why I’m having trouble staying on my feet. I checked my blood sugar…yesterday it was a little high when I fell, but my test strips were over a year out of date, so I’m not sure exactly what it was. Justin brought me some new strips last night, and about 3 hours after eating, it was 211. Not bad. When I fell today, I tested it about 20 minutes later, and it wasn’t bad at all…183 and that was during my meal. Now, over an hour later, its 111. Totally normal.

So of course, my next thought is, could this be the tumor?  When I saw Dr. C a couple weeks ago, he said that it was almost completely blocking my inferior vena cava, if not blocking it completely.  He said it was hard to tell for sure on the imaging, but that the size of it indicated it could be blocking it.  He said the veins around the inferior cava were all enlarged, compensating for blood flow.  When I start passing out, it makes me wonder if those veins can’t handle the load.  It makes me wonder is that tumor growing?  It makes me wonder if it can come loose and start traveling up the vena cava.  My mind will NOT stop.  I keep telling myself its fine, its just stress, etc etc but my stupid mind won’t listen to me.

I had a lot of trouble sleeping last night…a lot of things going on here in the home that just stresses us all out.  Everyone is reacting to the upcoming surgery a little different…Dr. C really stressed how dangerous the surgery is, and explained that its a surgery they’ve never really done before, so they’re basically going to cut me open and wing it.  I have complete confidence in him, but its a little stressful.  I’m having to take more pain pills to sleep, and that bothers me too.  Everyone thinks I’m so strong and handling this all really well, especially because I haven’t cried about the surgery and the possibility of dying yet.  I’ve cried, but its mainly frustrated crying when I’m in a lot of pain, or can’t do something I feel like I should be able to do, that kind of thing.  But as far as accepting the reality of this new tumor and its location and the difficulties in getting it OUT…I don’t know, I guess I’m just numb to it all.  Its almost like I don’t even care at times.  I keep asking myself “why me?”  Seriously…I know that God won’t give us more than we can bear, but honestly Lord, I think I’ve had more than my share.  Sure, there are people out there who’ve had it much worse, and I try to empathize with them, but I’m so sick of this roller coaster ride I call my life.  When things start to go well again, suddenly there’s a new twist, bend, loop, etc.  I’m tired, so very tired of it all.  I told my friend that I felt like death would be a relief, but I don’t know how sincere I was.  There are times when I truly feel it would be a relief just to drift away and not be in pain anymore, but there are other times that I WANT to be here, no matter the disabilities and curve balls life keeps throwing my way.  I want to see my children grow up and be happy and successful.  I want to grow old with my husband.  I don’t want to miss a thing.

And yeah, I have a call in to the doctor about the passing out and falling.  I almost didn’t call, because I don’t want them to think I’m freaking out about every little thing, but the falling bugs me.

How do people who have the worst parts of cancer…the chemo, the radiation, etc, deal with this?  I don’t want to know…and I feel selfish for that thought but its true.  I have to deal with the pain and discomfort and other physical things, but honestly, if I had to deal with chemo or radiation, no one would say I was strong, because I would be in tears all the time.

Ten days…I have ten days to go, and it can’t come soon enough.

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I know I haven’t updated the blog…its been too difficult to sit still and focus.  On the one hand, I’ve got so much to get done before surgery…on the other, I don’t WANT to do any of it…as if it will delay the inevitable.

The board of doctors finally decided that they want to do the surgery.  The oncologists were the lone holdouts, because this tumor hasn’t been diagnosed as malignant, and won’t be until its biopsied.  However, a needle biopsy could do more harm than good…IF the tumor is encapsulated (all but one of my tumors have been), a needle puncturing it could release cancer cells into my blood stream, which I don’t have to tell you would be a bad thing.  Even if its not encapsulated, that wouldn’t be good.  Its almost completely blocking the inferior vena cava, so regardless of whether its cancerous or not, it has to come out.  The problem, as Dr. C explained it, is that this is a first for them.  The size and location present problems that they’ve never had to deal with.  He explained that instead of having Plan A and Plan B, they need to go in with Plans A, B, C, D, E, etc.  So much can go wrong on the table.

I asked him what was wrong with me, because I’m not terrified.  I told him I’m more worried about the painful recovery than the possibility of not waking up from the surgery.  He laughed a little, and said that I might be a little numb to it all because for me, its just another surgery, that I’ve been dealing with it so long, been sick for so long, that its hard to put it into perspective.  I suppose he’s right.  Still, I look at everyone freaking out around me, and wonder what the heck is wrong with me because I’m just rather blase’ about it all.  I know from experience that about 30 minutes before the surgery, I will get anxious and nervous, but for right now, I’m more laid back about it.

My surgery is scheduled for November 26th.  I have to be there at 5:00 a.m.  All three of the kids are going to miss school to go…they want to be there until its over, however it may turn out.  I’ve decided that they can be…if they go to school, they’d be pulling them out of class to tell them I was in recovery and ok, or heaven forbid, to tell them I’d died…either way, when they get called out of class to find out, they’d be worrying themselves to death, so I think its best that they be with family, whether it be good news or bad.

It still bothers me that my status as a cancer patient knocks me off the organ transplant option.  Even with a family member willing to donate, they won’t do it because the cancer makes me a bad risk.  The problem is, my cancer isn’t that huge a deal…when its metastasized, its been small tumors that they caught quickly and removed.  Its not a situation where its spread and I’m sick from chemo or radiation.  The only organ impacted has been my liver, and its healthy as can be, and had no recurrence of tumors at all in over six years.  I did have a tumor on my right adrenal gland last year, and it and the gland were removed, but my right kidney itself was fine.  I guess I’m a little biased, but I don’t see that I’m a bad risk for a transplant if the blood loss during this surgery stuns my liver or kidneys to the extent they don’t “come back” after the blood flow is reestablished.

People look at me, and they don’t see that I’m this sick.  Other than the protruding belly and the liver spots on my face, I look good.  When I wear makeup and cover up the spots, I look REAL good.  I get around fairly well most days, and I don’t sound weak or anything unless I’m having a really bad day.  If it weren’t for Dr. C, they probably wouldn’t have caught this for that reason alone…I don’t “look” sick, so I must be fine.  Dr. C has been with me every step of the way over these past six and a half years though, and knows my history, so he’s stayed on top of things.

I’m not afraid, not yet.  I’m not even really all that concerned.  Maybe its blissful ignorance, but I’ll take it.  I do get stressed out, thinking about the recovery.  I know from experience how painful its going to be, and Dr. C telling me this will be my worst surgery yet doesn’t ease my mind much.  He stressed again at our last appointment that they may have to crack my chest…that until they get in and see where everything is situated, scar tissue is, and the ease of access, they just won’t know.  I”m not a really tall person…I’m only 5’6″, but my height is in my legs.  I have a very short torso…another thing that may make them crack my chest.  Ugh.  I’ve seen Dad and friends recover from heart bypass surgeries…it looked really painful.  I do NOT want to go there.

I’m doing a lot of praying, but I feel hypocritical about it.  Why do we pray so hard when we face something that might kill us?  I pray all the time, sure, but I don’t think its as ernestly as I’ve been praying the past couple weeks.  I don’t really know what to pray for.  “God, please heal me” seems so shallow and self-serving.  Asking Him to see me through this trial also seems selfish.  The truth is, I’ve forgotten how to pray for myself.  I’m very self-conscious and always feel like everything I’m saying is for affect, and not sincere.  Then when I start over, trying to be more sincere, I feel like I’m not fooling anyone.  My mind never stops, it never lets me have any peace, but constantly fills me with self-doubt and loathing.  I’m trying to place it all in God’s hands, but letting go of that control is a very difficult thing to do.

I don’t understand why these things keep happening to me.  I made a lot of mistakes in my younger days, true, but do those mistakes warrant this?  Its been one thing after another, ever since 2006.  It just never stops…I never get any peace.   I don’t know what its like to just relax…my brain is always working overtime, I’m always stressed and worrying about something.

This is one reason I haven’t updated my blog.  I feel like I’m constantly whining or complaining.  I feel like maybe I’m talking about it too much, making myself the center of attention too much.  Boy, those “friends” several years ago really did a number on me…when I worry about whether to update about my health and ask for prayers or not because it might make me look like an attention-seeking drama queen, even though I KNOW that I really do need those prayers…well, it just sucks.  I shouldn’t care anymore, but for some reason, its something that I can’t seem to let go of.  Yet another thing I need to pray about, if only I could find the right words.

So that’s it…this is where I am right now.  Where I’ll be in a couple weeks…I guess we’ll see.

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To cut to the chase, my cancer has returned.  I have a large tumor in my vena cava, the large artery that goes into the heart.  They’re going to try to remove it surgically, but because of the size and location, it might not be possible.  My previous surgeries have complicated things…and clamping the vena cava to remove the tumor could cause liver and kidney failure.  The kidney isn’t such a huge deal because I have two of them…they might have to remove one if they can’t get it to come back when they release the clamps.  However the liver is a big deal, because if it fails, I’m no longer a candidate for transplant because of the cancer.  If it fails, basically I won’t wake up.  They’re going to try to go in through my chevron scar on my abdomen, but might end up having to crack my chest.

If they get in there and can’t remove the tumor without killing me, they’ll close me up and I’ll recover from that surgery.  There is a chemo-type drug they can give me that will slow the progression of the tumor, but won’t kill the cancer…it will just give me a little more time.  Regular chemo and radiation therapies won’t work because with this type of Hepatacellular Carcinoma, it doesn’t respond to those treatments.

Justin asked him what would happen if we did nothing.  I didn’t ask that because I’d already figured it out and didn’t really want to hear the answer anyway.  Dr. C said that if we did nothing, the tumor would continue to grow, until the vena cava is completely clogged…then I’d start having organ failure, and eventually die.  He couldn’t give us a time frame because they don’t know how fast the tumor is growing.  The tumor could spread to other areas and organs.  The time frame to operate, he feels, is relatively short.

When he asked what I want to do, I told him I want it out.  I understand the risks…basically its a risk I’ve understood for every surgery they’ve knocked me out for…but this time there’s a real possibility I might not wake up.  They have to clamp the vena cava in two places to remove the tumor and that part of the artery, and replace it with man-made tubing or whatever…to be honest my brain was processing so much at that time I forget what he called it.  The only places they can clamp it “safely” are right on the margins of the tumor…and he doesn’t know until he gets in there if he’ll have room to cut if he clamps there.  They can clamp a little lower and a little higher, but that presents even more problems in regards to blood flow.  The liver has three veins…one of mine is missing from when they took 80% of my liver in 2006.  The other two will be cut off during the clamping if they have to clamp lower than they’re hoping, so liver failure is a real risk.  The scar tissue from the multiple surgeries is pretty bad…he described it as a large pack of tissue…and my intestine is looped up and attached to my deformed liver (it works fine, but it looks pretty funny because of the way it regrew).  Both of those things present a problem as far as easy access.  He doesn’t want to crack my chest open if at all possible, but until I’m on the table and they start cutting and poking around, they just won’t know what they’re looking at.

They also might lose one of my kidneys…I couldn’t really tell from his rough drawing which one…but now that I think of it, I think its the left one…meaning I’d lose both adrenal glands too because they removed the right adrenal gland last fall.  Kidney failure is also a possibility from the vena cava being clamped, but they’re not too worried about that if it happens…I suppose because of dialysis and such.  He’s most concerned about my liver and heart.

I’ve never seen Dr. C so serious and reticent about giving information.   He didn’t joke around with me much, and we usually get him to crack up at least once every time we see him.  I know I should be stressing out and freaking out, but I’m not.  Maybe its still too new…shock…but I honestly feel like things are gonna be ok.  Everyone has cried but me…something has got to be wrong with me LOL.  Well, Bekah hasn’t cried, but she doesn’t know the seriousness yet.

Jared and Katie took the news really hard…they both cried before the football game last night.  We told Bekah I had to have another surgery, a really bad one, and she got the “freaked out” look on her face that she gets (its mostly acting), then asked us something about Christmas.  Aspergers sucks sometimes.  We’ll have another, more serious talk with her (if we can) before the surgery.

I need to scrape up the money to get to Arkansas and make peace with Dad.  I want to look him in the eyes to see if he truly is sorry and has learned anything, or if he’s just saying the right words.  If he’s just saying what he thinks I need to hear, I’m done.  It may seem harsh, but I’ve tried with him so hard for the past several years…and right now, I have to focus on my kids, my health, my family.  I want to give him the chance though, just in case I don’t make it out of the surgery.  That’s the type person I am.

I also need to work on letting go of a lot of bitterness I’ve been carrying towards others for the past four years.  What happened when I was carrying Ruby was awful and shouldn’t have happened, but I also have to accept some of the responsibility for it.  I let it happen, and I handled it poorly.  I took a lot more blame than I should have, because I was trying my best to smooth things over and keep the peace…when I realized that wasn’t working and probably would never work with those particular people, I blew up and overreacted…that didn’t help my position very much at all.  The stress just got to me, and I let myself down with the way I did things.  I have to forgive them, and more importantly, I have GOT to find a way to forgive myself.

I’m a Christian, but I’m not where I need to be with the Lord.  I’ve had a really rough past couple of years…my faith has been questioned and I’ve said/done some things I’m not proud of.  I don’t feel worthy to ask God for anything anymore.  I prayed so much when I was carrying Ruby and after she died…I had a really strong faith.  I don’t have that anymore…I know God is still there, but I’m no longer sure how to talk to him.  I did a good bit of praying last night after we all went to bed…but it was very difficult and I felt somewhat silly, trying to explain to God why I wanted His help, but didn’t feel like I deserve to ask for it.

So that’s basically what’s going on.  Keep our family in prayer, please.

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So I had an appointment with the doctor I’ve seen in After Hours a few times and liked.  My regular family doctor is in Petal, and I just don’t get up there very often, so I really needed to find another GP here in Poplarville.  She treats Bekah, and we all really like her.  I went in for the shoulder pain…after eight or nine weeks, the pain is really getting to me and hindering daily things…can’t move my laptop around (ha), can’t scoop litter boxes without almost throwing up from the pain, can’t lift a laundry basket, can’t pick up a cat, etc etc.  I told her also what I’d found out from New Orleans, and given the shoulder pain, she ordered x-rays of my shoulder.  Then she listened to my chest and ordered a chest x-ray as well.

I need two surgeries.  My right rotator cuff is pretty much shot.  I got a copy of the x-rays to send to Ochsner, and even I could tell the difference between my shoulders.  I think I’m going to ask for an orthopedic consult at Ochsner, with the hopes that I can get both surgeries done at the same time and only have to recover once.  That might be too much to hope for though.

As I suspected, I ruptured my diaphragm for the third time.  I’m fairly certain I know when I did it too…I told Justin at the time that I thought I had, and started having the breathing difficulties not too long after.  I even get out of breath when I’m talking.  She said about a third of my lung space was compromised.  Looking at the x-rays, to me it looks like an organ, not my intestines up in there…in the past, when it was my intestines, there was a lumpy appearance on the x-ray.  This is a roundish shape, no lumps in the outline.  Considering where its at, I almost think its my liver, but I obviously don’t read x-rays for a living so until a doctor tells me what it is, there’s no way for me to know.  Its pretty weird looking at it though.

We have no word on whether the cancer is back or not…I won’t know that until I see Dr. C on the 26th.  They just won’t tell me over the phone what’s wrong…they won’t even tell me what they SUSPECT, so that of course has me freaking out a little.  However, I’m really hoping that this hernia issue is what has them worried.  Hernias, I’ve done.  Heck, cancer I’ve done…but a hernia is so much better than cancer lol.

On a side note, the little boy I’ve been following on facebook, Lane Goodwin, lost his battle with a rare childhood cancer a couple nights ago.  He was only 13 years old.  I can’t even imagine.  It was hard enough losing Ruby and I never got to know her…but to lose one of my children, whom I’ve loved, nurtured, laughed with, cried with…oh man.  Please keep his family in your prayers…he had a younger brother and I believe he’s taking it very hard.  Google Lane…you’ll see what an amazing kid he was…even as he knew he was dying, he was always smiling, and wanted to make a difference for other kids with cancer.  His facebook page just took off, with celebrities and people from around the world supporting him.  He got the word out and touched so many lives.  I hugged my kids extra close since he passed.

Tonight is Senior Night…Jared will be recognized on the field tonight as a senior and a member of the band…Justin and I will be on the field to present his trombone to him.  He’ll be recognized again during the soccer season, but this is the big night where the most fans will be in the stands.  I’m so proud of him…he’s grown into such a handsome young man, with a good work ethic (he’s worked at McDonald’s for over two years now).  He makes good grades and is well-liked by his teachers.  He’s compassionate and patient with younger children, especially those with disabilities.  Sure, he has some issues like most teenagers, but overall he’s a great kid and I’m proud of him.  Its hard to believe this is his last year in school.  After this year, he’ll go off to college, wherever that may be, and my role will change a bit.  I’m praying I’m able to make the transition gracefully.  Katie will be a senior next year…oh man how time flies.

And, tomorrow is Rebekah’s tenth birthday.  Was it really ten years ago that she came into our lives?  She’s almost as tall as I am…smart, witty, full of life.  Her Asperger’s, ADHD and anxiety have presented some challenges for her and for us, but she’s always so optimistic…she’s a real joy to parent and I can’t imagine our lives without her.  She wants a Halloween-themed birthday party, so we sent out invitations and we’re having it at the park Saturday afternoon.  My fear is that none of her classmates will come…last year was the first time anyone but family came to her party, and it was just one little girl, but it thrilled her so much.  This party, she’s so excited about…she’s bouncing off the walls and talking about how much fun everyone will have, and my heart is breaking because I don’t want her to be disappointed again.  We don’t have the money to really make it special for her…so we’re just going to make the best of it and make sure she knows how very much we love her.

So that’s pretty much what’s going on with us right now.  Its going to be a busy weekend, but I wouldn’t trade it for a slow one.  My kids mean the world to me, and these are the times I’ll treasure later on 🙂

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