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Posts Tagged ‘work’

Chemo week eight wasn’t fun, but the infusion was the least of it. Honestly, I probably shouldn’t be posting right now because I am on painkillers and they say I’m not supposed to ‘drive, operate heavy machinery or make important decisions.’ I think that basically means you’re not in your right mind – and I do know that is true, and figure you probably shouldn’t write things for all the world to see when you’re like that, either. Oh well – I am anyway because I feel guilty not – so many people have been checking in on me because they haven’t seen a post yet and I feel bad having anyone worrying about me… instead you get to read my rambling! That said, I’m going to keep this brief, so I don’t say anything I’ll regret in the morning.

Tuesday (was it really only yesterday?) started at 5:30 in the morning, rousing mom and Nick so we could get to Brigham and Women’s Hospital and I could be the first in for the port. Long story short, I was dozing on the operating room table when I was woken and asked if it was ok for them to put the port in my arm rather than my chest as they were concerned about the placement of the tissue expanders. Since the last thing I want is one of those popped (I have a friend with implants and one has deflated – not fun), I said of course. Whatever they deemed best.

The next time I woke up we were done and I was in recovery with mom and Tina. I don’t remember much except that all was fine with the world (yes, I was heavily medicated), I got dressed and they wheeled me on over to Dana-Farber for the infusion. They used the port for both taking blood to do my labs and the infusion, so it was already paying off – no routing around my poor veins any more. The redness around the port was definitely growing, though, and the nurse drew a circle on the clear bandage, saying if the red spread outside the circle to come back.

Home we went and as the evening went on and the meds wore off, the pain increased… and this morning the red was well beyond the circle and felt much worse than the ‘slight discomfort and tender’ that the discharge papers said I’d feel – I couldn’t even put my arm down at my side! I called and it was back to the hospital for us…

Luckily it isn’t the type of red they’re concerned with: the doctor said, in fact, that most of my upper arm will turn red and then black and blue (note to self: may want a dress with sleeves for CMAs), and that it is only ‘infection red’ (didn’t realize it was its own special shade) and warm to the touch that they worry about. He also said it should be better by next Tuesday for the next infusion, and it’s not so bad for most because they can take Tylenol or ibuprofen. I can’t because of my liver, so he said to stick with the painkiller I was prescribed – but I can’t take that and go to work. So I get the choice of comfort at home or pain at work – great.

So for the rest of today I chose rest, and tomorrow it will be back to work, and I’ll grin and bear it. I hate to say it, but I am getting so used to hurting that I don’t really care. I don’t think there’s been a day since the surgery in April that something on my body hasn’t hurt, and the aches increase every day. I am holding out hope that it all really does subside shortly after the last treatment.

Overall, though, I am just thankful that it hasn’t been worse. That I can still get up and out of bed every day. That I can still work. That for the most part – other than the aches and pains and cringing every time I look in the mirror and see my mostly bald head  and the weight I’ve gained – I’ve been able to maintain relative normalcy in my life throughout all this. And that I will live and, as so many keep reminding me, someday this will just be a chapter in my life rather than the main storyline…

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Week six of Taxol is over and done – and was pretty ok. Just some pain with the vein chosen (won’t use THAT one again), but otherwise fairly decent. Liver appears to be back to normal this week (phew) so I will continue to try to stay off tylenol and ibuprofen as much as possible and no drinking. (How convenient my 20-year high school reunion is the weekend AFTER my last treatment?) And nice to ease off the steroids a bit. Was a dreadfully early morning, but also meant we were out earlier and able to go home and crash on the couch.

Halfway there – that is what everyone keeps reminding me, and what I find myself telling others when they ask about my treatment. Usually that is a reassuring phrase. In a way it is, as I know six weeks from now (as long as my liver doesn’t mess things up), I will be done with chemo. (WOO HOO!)

But what really lingers in my mind is how much harder the second six weeks will be than the first. It’s already starting, as I mentioned last week, and for the first time I had a couple of really rough days getting through work and had to give in and take a painkiller when I got home and just sleep. I know I need to slow down some and I will. As it gets worse, I will probably work from home a bit or take a day off if necessary. We’ll just have to see how bad it actually gets.

I am not going to dwell on it. I got a text from a loved one after my last post where I said I don’t want people to feel sorry for me: “I’ll tell you what. I won’t feel sorry for you. I don’t think I ever actually did (not that I wasn’t devestated to hear the news). We are all dealt a certain hand in the beginning. It’s how we play them that counts. So, stop giving people a reason to cry, no one needs to see your pain (no one sees mine and you’re stronger) and refocus on giving them a reason to cheer. Close that door! No one else is gonna tell you and I’m no one else. Now is the time to show your strength, so buck up and be strong. I know you can make it through, if you want to. You have the most bad ass ELITE special forces SOG-MACV blood in your veins. Tap into it! Your DNA doesn’t even know what defeat is!”

He is right – in a way. In many ways. I do need to be more positive. I am strong. I do have fighter DNA. I will make it through. Heck, I can make it through anything for just six weeks. And soon it will be five, then four… And my hair is starting to grow back, right, so it’s not all bad! (I may hurt all over but I will eventually look better… and the pain will go away.)

The one thing I said (in addition to how much I love him and thank him for the honesty) is that I do still need to show the bad side, too. I can’t only share the good on here. That would be fiction. Lying by omission. And yes, while this started out for family and friends (who I make it a point NOT to lie to – in fact I’m not a fan of lying to anyone), it’s grown quite a bit. Now there are several women going through similar cancer treatments and for them, more than anyone, I sometimes need to be brutally honest. I need them to know that they are not going through this alone. And that they are not the only ones whose nails are breaking off, they are not the only ones feeling aches and pains throughout their body, they are not the only ones gaining weight from the treatment. Yes, I want to – and most of the time do – keep smiling and being strong and try to be inspiring for others. But I refuse to be fake.

So I am sorry if some of the things you read here bring you down. But I can assure you, no matter how rough a week it is for me, I will get through this, and I will keep smiling most of the time. I know this is just a bump in the road. Not only will the next six weeks be over before I know it, so will 2013. And that will be a wonderful new start…

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Tina brought tea from Dunkin’ Donuts – highlight of the chemo infusion!

Today, chemo week five at Dana-Farber, was fairly routine. Not much nausea, not much pain at the infusion site by my wrist, and mom and Tina were there for my amusement – and I for theirs. It was a blood work and infusion only week, but my doctor stopped in to visit anyway.

Yesterday for the first time I admitted to one of my friends how I am really feeling and what is happening  – and felt so bad when she started crying.  I even admitted, as I did with Phil when I told him that I am listening to him and not going to attempt to do the Newport Half Marathon, that I am not invincible. I need others to know because they rely on me and we need to be prepared. If it was just all about me, I’d stay in denial as long as possible!

You’re probably wondering what the heck is happening. No, I am not dying, and I don’t have another lump. Things are simply getting worse. I honestly hate saying (or writing) it because that makes it real, harder to deny and could make people feel bad for me. I hate it when people feel bad for me or baby me!!! I just want to be treated completely normally, just with understanding of my limitations so people aren’t counting on me for more than I can physically give.

It’s really interesting, and somewhat ironic. I find it amazing that officially I no longer have cancer, but things are worse from the treatments than I ever felt when the cancer was in my body. Looking at me, you’d say “she has cancer” but I don’t actually – now I’m a cancer survivor. Just still in treatment so I look like crap. And while some things are starting to get better, other side effects are kicking in…

Better

  • My hair is starting to grow in. Really! And not just on my head – I have to shave my legs! I will never complain about that again… My doctor confirmed that it sure appears to be coming back and that it can happen while on Taxol, but isn’t normal so she doesn’t mention it as she doesn’t like to give false hope.
  • It appears my eyelashes and eyebrows are no longer falling out – so while they are sparse, it would be so fabulous to preserve what I have and for them to start to grow back too.
  • I was able to cut back to a normal dose of benedryl starting today, and starting next week can start to cut back on the steroids slowly, as I haven’t been having any of the real bad Taxol reactions. So that means I shouldn’t keep gaining weight, and I won’t be as hungry all the time – thank goodness ’cause I hate all the weight I’ve put on, and am ready to get back into my smaller jeans…
  • Being able to work four days a week, unlike the A/C cocktail.

Getting worse

  • My fingernails are starting to go. They are increasingly brittle, have lines I try to cover with light nail polish and four have broken off below the skin, complete with bleeding – so not fun…
  • The aches and pains throughout my body are increasing, as are the hand and feet tingling. And it will continue to increase each week.
  • My liver is elevated – at first we thought it was because I had a drink and took tylenol, but I cut both out this week and it’s elevated again. Now the thought is that it could be too much ibuprofen because I’ve been taking a bunch for the abovementioned aches and pains. So I’m afraid I am going back on pain killers so I can cut down on the ibuprofen – but will only take them at night when I have no where to go, as I am not supposed to drive or work – it makes my head fuzzy, which I hate! Will take only when absolutely necessary…
  • So I know I have to face that I may not last four days a week at work the entire rest of the time.

It’s all relative, right? It’s only seven more weeks. And no matter how bad it gets, I can get through/handle anything for just seven weeks. And then I will get better. And have a fabulous 2013, and hopefully rest of my life. And until then, at least my hair is starting to grow back – and it’s brown, thank goodness! 😉

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