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Posts Tagged ‘denial’

I have been dreading today for three weeks. I’ve smiled and answered briefly when people asked me what’s next, and when those I’m closest with would bring it up, I cut them off and simply said I don’t want to think or talk about it. While I am overwhelmingly thankful for Dana-Farber and will support them in every way I can for the rest of my life, I would like nothing better than to never again sit in that ninth floor infusion chair.

I have to admit, it was partially my own damn fault that today went sour. Since I showered last night, I simply woke up at 6:30, rolled out of bed, and went on autopilot getting ready as I have for the other infusions. We got to Dana-Farber right on time and while standing in the check-in line I remembered: I was supposed to take three Decadron before I left the house. They took me right away for my bloodwork and I explained that I could make it home and back before meeting with my doctor, but they said it was no problem, that they’d just give it to me via IV before the Taxol (chemo). I was assured that it would be no better or worse. I wasn’t thrilled and was kicking myself as my stomach was already uneasy.

In addition to my queasy stomach, the vein in my wrist was hurting, as did the IV as soon as it was put in my hand. It was checked when we got up to the infusion room; I was told it looked fine, but from now on we’ll use another vein, as it seems the A/C did a number on this one.

Up first: 50 mg of Benadryl. There’s a chance of several not good side effects (I’m sure I am impressing you with my technical talk – sorry, will never be a doctor!) happening during the infusion that they want to prevent, hence both the Decadron and Benadryl. Well, not sure how much of the Benadryl actually penetrated my system, as halfway through the infusion I was sick, going through three blankets and three pails… ugh. Luckily, I didn’t have my normal entourage – mom had just stepped out and it was only Tara and me, and the nurses who rushed over as soon as they heard the retching. I was extremely embarrassed and apologetic, and so thankful when it finally ended. While the large dose of Benadryl was a possible cause, I think I’m just getting like Mirany and my body simply does not want to be there. I really would like to just run away…

The pain in my veins persisted, though, and we kept warm packs on it through most of the infusion, although the heat hurt it, too. As soon as it ended, I went home and crashed. I slept for hours and am feeling better now that I’m awake. There are certain things that I still need to watch for over the next 24 hours, including numbness and loss of feeling in my fingers and toes, so I’ll work from home tomorrow. Hopefully none of the side effects will occur and I can be back to normal on Thursday. Even if I have to be miserable during the infusion, I would rather that and be able to work within a day or two, then to just feel generally crappy for a week! Some of the side effects are cumulative, including fatigue, so we will see how the next 11 weeks go…

There was one highlight to my day – no, it wasn’t the bright pink hand wrap, although that was cool. My friend who I mentioned a couple of posts ago who just had a lumpectomy was at Dana-Farber for her follow-up and visited me during my treatment (luckily after the incident mentioned above). She got the official report of being completely cancer free, and looks wonderful, although she’s still experiencing some post-surgery issues. I am just so thankful it was caught so early, and she has a long life ahead of her: please follow her example and do your checks! Time can be on your side if you check regularly. And no matter how many bad days I have through this fight, I will put up with them and even be thankful for them, as I know I have a long life ahead of me, too!

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The other night my friend Herb told me about his recent trip to Florida and how surprised he was at how much his ailing father had changed. His mother hasn’t been straight with him on the phone and has been continuing to basically live their lives the same without accommodating for the changes in her husband. As I listened, it occurred to me that it has nothing to do with his mother being mean, neglectful or not loving his father. It’s BECAUSE she loves him so much that she just doesn’t want to face it. She doesn’t want to see how he’s changing and how frail he is, how much help he needs. She wants him to be the same man she fell in love with, the same man she married. Maybe she really can’t see the changes. It is her blind spot  – don’t they say love is blind?

Then I realized: that’s how a few people are with me. It’s not that they don’t love or care about me that they completely ignore the fact that anything is different about me, maybe it’s that they do love me that it hurts them to see me this way and just refuse to face and deal with it. I am still hurt by how they now treat me, but this new perspective helps me understand them a little bit more, and at least makes me feel like maybe I do matter to them.

And then I had another revelation: that’s actually what I am doing to myself. I still get shocked when I look in the mirror. I still cringe when I see pictures of myself bald. I just went for a run (if you can even call what I’m doing running) and got frustrated with myself that I couldn’t even do the whole 3 miles of one minute run and one minute walk – sometimes I had to walk for two or three minutes before doing another minute of running. I don’t want to face that I don’t have hair any more. I don’t want to see that the steroids and eating to ease the nausea are making me pack back on the pounds. I don’t want to be tired after a few minutes running. I want to be the me I was in February…

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I am making a wish on each eyelash that I catch as it falls out. All those wishes have to add up, right? I refuse to waste a wish on anything pointless, like wishing that my eyelashes and eyebrows wouldn’t fall out, although I really don’t want them to. So what am I wishing for? Like birthday wishes, I don’t think you’re supposed to tell or they won’t come true. But I bet you can guess – they’re pretty much the same things that I pray for…

So I guess I can tell you more of the things that I wish but don’t waste the eyelash wishes on:

  • I wish the hair on my head would either all grow or not grow at all – it is so annoying having these patches of hair growing on my head! I really feel like a chia pet. Luckily, Nick is home from London and offered to shave my head again. I think I will be taking him up on that…
  • I wish people wouldn’t worry about me so much. Tonight I told Nick I was going for a run and he looked all serious and said “Really? Ok, but be careful. What time will you be back?” It is sweet. But I really do feel fine, these in-between weeks, after the initial week of hell and the next infusion. I can run, I can babysit, I can work, I can drive. I am good. And I feel bad wishing this – I am so, so thankful so many people care about me. I just wish they wouldn’t worry so much… 🙂 And yes, I am blocking out the incident at Training Camp, but that was also because I was stupid and rushed being better – I was still in that first week post-chemo. I will try to be smarter this next round…
  • I wish I could go to my cheap nail salon and get my regular mani/pedi’s again. Oh how I (and my hands and my feet) miss them…
  • I wish I didn’t have chemo brain. I hate it when I am not at the top of my game. And according to Sue, chemo brain lasts for months and months after the chemo stops. So I won’t be back 100% until well into 2013. Ugh. Good excuse for why I won’t be winning at trivia though. 🙂
  • I wish I had unlimited funds so I could buy more wigs. Now that I’ve started wearing them, they’re not so bad. But I don’t like to wear the same one all the time, I like to mix it up between wigs and hats just to try to have fun with it. Now to buy the electric blue one…
  • And then the most pointless wish of all: I wish I wasn’t sick! I know, as people keep reminding me, I am officially cancer free since the surgery, but the fact is the chemo makes me more sick than I ever felt with the cancer! I do understand why it had to be cut out and why I now have to go through all this chemo to kill all the cancer cells (especially after talking to my friend Laura who had it come back again, even after having a mastectomy!), but it doesn’t mean I have to like it.

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