Blood Clot & Surgery

Tuesday Bob had chemo. Same old routine. I get up, get stuff ready, try waking him up - he doesn't want to get up. Who the hell would want to? Seriously, this would be my thinking...'Why get up? They are just going to make me feel like shit again. Maybe if I stay in bed I can just rest and sleep and maybe it's all a bad dream that will go away.'

Okay, those are my thoughts on the subject not necessarily his; but if I were in his position I would feel that way on the morning of chemo I'm sure.

So, then I have to sit and talk him into getting up - which sucks. I'm the person who promotes the pain he's about to experience. "Hurry, we will be late. You've got to get up baby. We need to get on the road. It's all going to be okay in the end - we're only 2 months from the end of chemo." Aren't I a huge jerk? Makes me feel like crap each time.

I sometimes start thinking that I should let someone else take him to chemo because then he will not associate me with the pain he goes through...but I suppose that would be a fat cop-out. So, instead I go with him - because there's a part of me that needs to experience all of this right along with him. The same way he has stuck with me through the years.

So we finally got to chemo. The doctor came in & checked him out, while discussing that as soon as chemo is done she's getting that port out of him because it's twisted and has her worried...then she looks at his neck and arm....they are both slightly swollen. This would possibly indicate a blood clot :(

She decided to go ahead with chemo for the day - but after we had to go straight to the hospital across the street for a doppler to check if there was a blood clot....Indeed - there was. I'm pretty sure I went weak in the knees when she told us that. How much can a person go through and how many things can they tell us there is only a slight risk of that end up happening to him?

He is now receiving 2 shots in the belly every evening...for at least a week to disolve the blood clot.

Friday morning we see the surgeon who will remove the port (same guy who put it in) and will schedule the surgery.

After the surgery he may or may not continue the shots but will be on cumadin.

So there it is - the latest. I am unsure how to feel; or what to think. I just suffer along side him. I wish I could trade places with him...seeing him suffer is so hard to stand by and watch.

That's it for now. I'll try to update again tomorrow after seeing the surgeon.

LEXAPRO

I saw my doctor the other day. I was so happy to be in to visit with him (he had been my doctor in the past but then our insurance didn't have him in their plan so I had to switch and just found out he was back in our plan recently).
He took a lot of time talking to me about what's happening; Bob, the cancer, the treatments, my jobs, my schedule, my weight (boo), Brendon's heart condition, etc.

His conclusion...I'm not crazy, however, I am suffering from a bit of depression and anxiety. So, he gave me Lexapro. I have to say that I don't know if it's working or not, but I have been sleeping better this past week and I am a little calmer. If that's from the Lexapro, or from having confirmation that at this point and time I am allowed to have a bit of depression and anxiety and it's perfectly natural to feel like I am feeling and therefore I don't feel as anxious about how I'm feeling, I can't say. However, I am thankful to be feeling a little better.

Saturday I had the retreat for the class that I teach at church, while my husband and his sister got to go to Skokie and meet Ozzy and have their books signed. I'm a little sad that I wasn't able to go. However, I am thrilled that he got to meet Ozzy, who, as he said, no matter where he was in life, or what was going on, there has always been an Ozzy song that described his feelings.

That's about it...chemo tomorrow.

Am I talking to myself?

Bob is no longer receiving the bleomicine (one of the drugs used in his chemotherapy). The reason for this is because he is not responding well to it. They have pinpointed all that severe chest pain to the bleomicine. They also did a pulmonary function test and found that his lung function has dropped about 12 points.

Now, this means that his chemotherapy won't be as effective in getting his cancer...how much of an effect we don't know - because the oncologist has twice dodged the question...What the heck.

He also has been in severe pain because during his last chemo treatment the nurse pulled back on the syringe to do a blood return and he felt a pop, came up out of his chair and several days later we found that the tubing on his port had pulled back and looped. So, this causes a problem with them getting the blood return when accessing his port. So, we will find out by Tuesday whether they are going to go in and fix it or not. He's not looking forward to that.

The other night, while he was having a lot of pain he was lying in the bed and opened his eyes and said to me "I'm going to die from this aren't I?"

I've thought a lot about that comment since he said it. Is he going to die? I don't know - I do know that he has been my heart and soul for the past 20 years; so if he does die a large part of me will die along with him. If he doesn't die I don't think any of us will come out of this unscathed.

To be so afraid to lose someone is to live in constant fear - which isn't good for the sanity of one's mind.

Some days something is bothering me; it's stuck in my head and I can't shake it. So then I am angry etc. I just don't feel like me anymore. Some days I just want to lie in bed and pull the covers over my head and not face the world. Other days I'm simply angry with the world...and everything just makes me angrier. Anyway - I'm seeing the doctor next week to see about what I need to do to feel better. Last time I was there he told me to exercise more...perhaps in my spare time between the 3 jobs! Sheesh!

That's it - I'm off to crochet a hat for a friend.

Shaved Head

Bobs hair has been falling out for the past few months. He had extremely thick hair to start out with, and before it got cold he had me cut it...it was just very short, but not shaved. Tonight, he had me shave it completely.

I couldn't help but to cry when I saw what little was left falling to the floor. He just sat there, I'm not sure if he was more upset than I was or not...but he certainly didn't show it.

He's such a trooper; he just takes what happens and handles it.

Aggrivation and Frustration

These are the two words that describe my feelings this week. No, there isn't really a rational reason behind these feelings; it's just all the small stuff wearing me down.

He's home all day, he feels like crap most of the time, and when he doesn't feel like crap he doesn't want to sit here cleaning....

My kids are home all day (Christmas Break) and they apparently don't feel like cleaning.

I work 2 jobs, get home and nothing is done....I don't feel like doing anything; but I feel like I should, which then aggrivated and frustrates me and then BAM! I'm a crying mess.

I don't want to be the raving lunatic that I'm certain I sound like when I walk in the door, but seriously folks...is it so difficult to hang a coat? To put shoes in the basket instead of leaving them RIGHT in front of the door? To put dirty clothes in the basket that's 3 inches from where you tossed them onto the floor? To wash the dishes and wipe the counter? To take your empty plate, drink etc from the living room to the kitchen sink on your way to the bathroom or some other destination in the house?

It's exhausting just looking around at the 100 + things that need to be done on a daily basis...

I feel like everything has fallen on my shoulders and no one is willing to step up and help out.

Even better; my doctor thinks I'm handling everything fine...when I tell him these things, he says I'm handling the stress well....I AM???? I have to say I thought I was one stop short of a straight jacket.

Okay, gotta run...time to head to work...5 a.m. - 9 p.m. - that makes for a very long day!

Later in the Night...

I'm sitting on the couch, listening to snoring...my daughter's actually (she's very worn out...new mom worn out!). Caiden is sleeping in the basinet beside her...he's very cute and sweet! Bob is sitting/laying in his chair sleeping, with Vivian (our little 'puppers', a beagle/daschund mix) sitting beside him sleeping as well.

When we got home from Chemo, we stopped at Wal-mart to pick up the perscriptions that I had called in for refills on this morning. Unfortunately, one of the two perscriptions that he HAD TO HAVE was something they were out of and said they wouldn't have until Monday...well, that just wouldn't do...so we ended up running across town in order to get the medicine.

Everyone is sleeping so I suppose that means I better close my eyes and get a few ZZZZ's.

December: 3 months after diagnosis

Today is December 18th, almost 3 months since my husband was told that the fatigue, weight loss, anxiety, sweats, almost constant headaches and swelling in his neck were the result of Hodgkin's Lymphoma. The Diagnosis was the result of 3 weeks doctors appointments in which he had physical exams, CT Scans, scopes, biopsy, more CT scans and MRI's.

The entire time since then has also been a whirlwind, if I sit down and think too closely on my feelings about all of it I'm certain I will become a crazy person, rocking back and forth on the couch, who has lost touch with reality. Instead, I push forward, each day a gift, each day, no matter how crazy, no matter how much I want to scream, throw things or pull my hair out appreciated as another day to spend with him, another day to see my children....interesting how our own mortality is brought to the forefront of our thoughts when someone we know is faced with a disease that has the potential to kill them.

So, a little background. Bob is my husband of almost 17 years. We met as children; I would come from my small central Illinois hometown to the 'big city' of DeKalb to visit my cousin. Bob lived across the street from her. I can't say that I liked him much; although there are pictures of us playing together, I still thought he was a little jerk. Blonde hair and a cocky little smile and blue eyes that looked like the Atlantic ocean, he was a little shit! Let me explain; I rode his bike once (without permission...but it was left sitting on the sidewalk and no one was around) when he found me on it he told me to get off and punched me in the arm to show me he was serious. Another time he pushed me in the pool that was the hangout for the kids who lived there. At the time I wasn't a very good swimmer, so guess who also got stuck saving me? Yep, that's right, that little jerk with the little smirky smile.

My freshman year in high school I moved to this town, which I now call home. In my second semester gym class there was this kid with dishwater blonde hair, cut in the typical "skater" style, with bangs longer than the back...it was cute, he'd flip it back out of his eyes (wish I had a pic, I'd post it so you could see how cute he really was), and a cocky smile that went along with his adorable sense of humor (okay, well, I thought it was adorable). By the end of my freshman year we were an item. It's been that way ever since.

Within a couple months of starting my senior year in high school I realized I was pregnant. I graduated on May 16th and had our daughter, Cassy, on May 18th.
Six years later we added Gaven to our family. Gaven is the spitting image of Bob, the way he looks, talks, acts, walks, EVERYTHING...I'm not even certain that a blood test would show any of my DNA...I think I was just the incubator for Bob's clone.
Two years after Gaven, we decided we were done....Bob was scheduled to go in for a vasectomy...and I found out I was again pregnant. At the first appointment we found out it was twins....heaven help us! We both almost fainted.

So, 9 years after the birth of the twins, we get this life altering news. CANCER!


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Today I'm sitting across the room from Bob. In the chemo lab. It's so sterile and their attempts, while appreciated, of making this place homey fall short. The blue fake leather recliners are at least comfortable. There's no T.V. on the side where we sit...we just look from our seats at eachother as we listen to the I.V. or watch the nurses walk back and forth.

I had thought things would get easier as we went along...you know, even with an illness you fall into a routine...a cycle...but nothing about his cancer has been routine. It seems that every time I start thinking "Ok, now the routine starts" something happens that throws things off, throws a wrench in the timing of things, in the schedule.

Hodgkin's Lymphoma....the best cancer to have if you are going to have cancer....doesn't that seem like an oxymoron? I think so.

As the wife of a cancer patient, I find myself tired, mentally and physically. Working two jobs, trying to keep everyone happy, getting everyone where they need to go, and so on. I'd like to add keeping my house Martha Stewart clean, but that would be a big fat lie. If anything goes to hell in a handbasket when shit hits the fan in my house it would certainly be housework.

I'm tired and emotional today. The doctor gave me Lorazepam...but then told me only to take it when I can't sleep....and only if I can be sure to have about 8 hours of sleep time available....
Does anyone else see the stupidity in this? Honestly....How do I know if I can't sleep until I've already wasted part of the 6 hours I normally devote to sleep time? So, I rarely take it...I think I've taken 3 in the 2 months I've had it. Not really doing much for me I assure you!

I also am on the verge of tears all the time...so I find it especially humorous when people tell me what a strong person I am...good thing they can't see the basketcase running around inside my head, banging on the walls and screaming at the top of her lungs! That would make them change their tunes quickly!

Bob struggles...he's weak, tired, too skinny, usually not hungry, and in pain. This equals one grouchy husband! Which means, I get to play policeman/mediator/counselor at home. Not a fun job! He's mad, I'm mad, the kids are mad. We are one disfunctional house right now.

I often wish my Sociology professor from college were still alive. Oh, how John Bland would laugh at my plight. I can just imagine him, standing there with his pony tail, chewing 10 pieces of gum, laughing and saying "Kid...." and then a whole bunch of sociological and psychological stuff that would leave me feeling better. I do miss talking to him, he had a way of making me see things weren't as bad as I felt like they were.

From reading this I'm sure that you can tell I'm having a day....I mentioned I was a little emotional today, right?

So, the doctor decided to not give him his bleomycin...one of the drugs that are a part of his chemotherapy. She decided this because he's been having pretty severe chest pains since he began chemo. It always starts about 26 hours after chemotherapy and then lasts pretty consistantly until about 3 days before his next chemo...which means a whole lot of sucky days...for him, for the kids, for me.
I'm unsure how this will impact his treatment, the prognosis or the duration of his chemotherapy. All questions I would love to have answered but that we won't have any idea about until at least 2 weeks from now...because, they won't know if that's what caused the chest pains until he comes back in 2 weeks for his next chemo. This has me a bit stressed out - I mean, what does this all mean? What could it potentially mean?

Plus there was a little problem today. When we made his last appointment they scheduled it for 1:30 p.m. We got to the chemo lab at 1:35 p.m. only to be told that they had thought we weren't coming today....WHY? because the other day the receptionist had called Bob and left a message (anyone want to figure out when he checked that message....hint....after hearing they had left him a message) asking if he could be here at 11:30 today and if so to call and let them know...well, the receptionist went ahead and changed his time to 11:30 so we got here only to be "sweetly" bitched at for not being here on time...to say that this set me off would be an understatement....not that I was overly verbal, but I did get a little argumentative.

So, here we sit...about 10 feet away from eachother, facing eachother, with him occassionally texting me to make a comment about something or another, we tease one another alot, this is how we get through the day. Otherwise, we'd fall into that horrible feel sorry for ourselves mode.

Okay, that's it for now. I think I'm going to go work on my crochet project...a scarf that goes with one of the hats I'm making. It will help me from thinking too much on the fact that they are pumping poison into my husbands veins to keep him from dying of a disease....