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Ports, painkillers and posts

Posted in Boston, Cancer, chemotherapy, Decisions, Home, work, tagged , , , , , , , , , , on October 24, 2012| 2 Comments »

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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The Gift: A Day with Others in The Breast Cancer Club

Posted in Alone, Boston, Cancer, chemotherapy, connections, Decisions, Denial, Discovery, family, hair, radiation, work, tagged , , , , , , , , , , , , , , , , , , , , , , , , on October 13, 2012| 4 Comments »

I didn’t want to go. It’s a club I never wanted to join and while I do blog about it, I try to ignore it whenever I can and just pretend I’m normal – or at least as normal as I ever was. But because I think knowledge and connections are better than ignorance, I went to the Breast Cancer in Young Women Forum for Patients and Survivors hosted by Dr. Ann Partridge and The Program for Young Women with Breast Cancer at Dana-Farber. While on my way there I was thinking there are so many other ways I’d rather spend a vacation day from work, I have to agree with one of the survivor panel members who called the gathering a gift – because that’s exactly what it turned out to be.

The first thing that struck me as I walked through the door of Lucca, the fabulous Back Bay restaurant where yesterday’s event took place, was that among all the patients and survivors packed into the venue, I was the only one with a naked head. Tons of wigs, hats, scarves, and of course hair, but I was the only one completely bald. I didn’t have much time to dwell on it, though, as I was instantly drawn into conversation at a table by a friendly young woman who asked ‘Are you in our support group, too?’ who, when I shook my head no, replied with a shrug, ‘That’s ok, you can be now!’ And I immediately relaxed and felt accepted.

As soon as the first session started – a patient and survivor panel – I remembered why I really haven’t spoken to many people who have had breast cancer, why I’m not in any support groups and why I am not in counseling: because I hate being vulnerable. I don’t like to cry – especially not in front of other people. There are very, very few people I ever let myself break down in front of, and they see it as a novelty, and either laugh at me (in a most loving way – you know who you are – I have called her when I was crying just so she could smile and SOME good would come of it), or are horrified because they know it must mean something’s pretty bad because it doesn’t happen often.

Needless to say, as soon as the panel started, the tears started flowing. I was not alone, and the well-prepared folks from Dana-Farber had stocked every table with tissues. While each of the stories were heart-tugging in their own way, what it really did was make you think of your own story. How it felt when you first found the lump, had the biopsy, heard the words that you have cancer. It’s a time I try not to think about much for so many reasons. But in a room like that, you can’t help it.

What you also can’t help is feeling rather … normal. My story is just like thousands of women’s: I found a lump, had surgery, am getting through chemo. I’m not running five miles a day after every chemo session like Kristen, I was not about to get pregnant when I was diagnosed like Angela, I don’t have toddlers at home to take care of through chemo like Carie… I actually have it pretty easy. And for that I am thankful (although I wish I had the willpower to run every day).

After getting those initial tears out of the way – necessary as it broke down what few walls were in that room and connected us all; after all, you’re much more comfortable once someone’s seen you cry – it was on to the facts: presentations by Dana Farber doctors, nurse practitioners and social workers. Throughout those sessions featuring the latest research, statistics and Q&A, the little voice in my head kept chiming in:

  • Only 5% of breast cancer patients are 36-40 years old – ugh. Lucky me.
  • Breast cancer is still the leading cause of death for women age 40-49. This has to end. Reminds you why all the pink awareness around is a good thing. We still have so far to go to stop women from dying of this stupid a$$ disease!
  • Good news: research is breaking down breast cancer and the consensus is there will not be one single cure, but multiple targeted, individualized cures for each type in the not unforseeable future.
  • One whole section on why this could have happened – was it because I was overweight? Didn’t heat healthy enough? Didn’t exercise enough? Ate too much red meat? We know it wasn’t because I drank too much, and the fact that I got pregnant with Nick when I was 16 actually reduced my risk for getting breast cancer (although clearly not enough…).
  • Must: stop eating so much ’cause weight gain is a factor in reoccurrence. Must also exercise more because that helps decrease reoccurrence. Because that’s the biggest fear. The elephant in the room. Please make this go away and end my nightmare. I will do anything, including cut off my breasts, which I already did, and poison myself, which I’m doing every Tuesday. So then…
  • Everyone is talking about radiation – am I making the wrong decision, electing not to have it after chemo? Must reassess.
  • Oh crap, I forgot about lymphedema. I need to be somewhat careful. And I have to get a compression sleeve before flying…
  • So much talk about fertility – am I really done? Did I want another child, now or in the future? Should I consider other options? Would be a lot easier to consider if I had a significant other.
  • Am I the only person not married in this room? How is it most women are lucky enough to have a supportive spouse or significant other by their side through all this crap? Thank God for my fabulous family and friends so I am not completely alone. (And much better to be alone than to have a significant other who just makes it worse by giving the pretense of being there for you when he’s really not. Nothing hurts more.)
  • So some kids are embarrassed by their mother being bald. Not mine. He not only shaved my head, but encouraged me to forget wigs, hats and scarves and ‘rock the bald’. You rock, Nick.
  • Stress may not cause breast cancer but it can increase inflammation and other side effects, and make it harder to cope. Which explains my increasing pain as we get to Thursday and Friday each week…
  • And then a glimpse into my future and tamoxifen: the side effects I get to look forward to for five years. On this one, I will pull a Scarlett O’Hara and think about it tomorrow.

There was an upside to being the only bald girl in the room: I was chosen to be the model for the Look Good… Feel Better session put on by the American Cancer Society. Not only did Nicole from Dana-Farber do a fabulous job with my make-up, I got to keep the bag full of make-up that she used on me!

The best parts of the day, though, were definitely those times that you got to talk with those around you. To hear similar stories, to offer advice to those newly diagnosed, to share tips and good books (I’m ordering both the Lance Armstrong one and the one by Kelley Tuthill – thanks Erin!). And to learn more about others trying to help women with breast cancer, like the ladies from the Gloria Gemma Breast Cancer Research Foundation for women in Rhode Island and the Young Survival Coalition. There are so many ways to connect and make a difference. I am going to call this week and see if I can get into the support group that many of my tablemates are in, and if not, I am sure I will make friends with the women in the group that I do join. Because Carie was right: this day was a gift. And I am not going to waste it.

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Six down, six more to go

Posted in Cancer, chemotherapy, connections, Decisions, family, hair, recovery, work, tagged , , , , , , , , , on October 10, 2012| 2 Comments »

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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