A milestone by Lyn

July 9, 2010

Well  I made it.  I finished my year of Herceptin last week.  I knew the day would come, but I almost can’t believe it.  I see my oncologist again in 3 months, and I admit I am looking forward to the break.  Even better, I am getting my port out in 2 weeks.  I can’t wait for that either.  As for what is next, they tell me I am cancer free, but you all know how that goes, and how fearful it is to worry about a recurrance.  But I am going to be positive, and try to be a bit more spontaneous in the coming year.  I have been tied down to doctor appointments and check ups and physical therapy and recovering, that it is all I have been able to think about, but now I am going to attempt thinking past IBC and the possible recurrance. 

Another big decision, dh and I decided recently to put my reconstruction on hold until my daughter is in kindergarten.  She is 3, so about 2 years.  My skin is so damaged from twice a day radiation that implants are not an option at this time anyway, so the only way to be reconstructed is with the TRAM or DIEP and that is such a huge surgery and recovery.  It’s not sensible with 2 very young children and noone to help out while I am recovering.  Part of me is nervous about the decision, but even more I am relieved because I don’t think I am up for such a large surgery so soon after the last one. 

If you are Her-2 positive, ask your doctors about joining the Neratinib Trial.  It was presented to me, and I have decided not to do it.  But I think it will be very beneficial and help us combat cancer.  My decision was a personal one, but I fully support the trial and believe it will help extend our lives even further.


my breast reconstruction, by Judy

June 16, 2010

It can take a looong time, but it will certainly be worth it in the end.

I’m in the midst of breast reconstruction. I had a mastectomy of my left breast in Aug. 2008, followed by radiation in Sept. and Oct. of 2008. I was told to wait a year after radiation to start any breast reconstruction process.

So I did. I waited a year, then saw a plastic surgeon I like to call Dr. Boobala (nope, not his real name) and have been seeing him for almost a year now. I had my initial consultation in early Sept. 2009 and had my first surgery on Oct. 12, 2009. That surgery was a latissimus dorsi flap breast reconstruction. That involved taking muscle from my back and moving it to my chest, forming a small breast mound. There wasn’t enough to make a full-sized breast, so I then had another surgery on March 15. That surgery was to reduce Righty and put a tissue expander into Lefty. Dr. Boobala did it that way because he didn’t think he’d be able to make Lefty as big as Righty (the remaining breast) . . . and that was fine with me. I don’t care that much about the size of the breasts; I mainly didn’t want to deal with prostheses anymore and wanted a breast back. Losing a breast was harder for me than I initially thought it would be.

After healing from the implant/reduction surgery, Dr. Boobala started the “fill” process. Every week since March 31, I’ve gone into the office, and they’ve “filled” my expander with saline. This stretches out my skin so that, when there’s enough skin, I’ll wait for six weeks, then have another surgery to put a permanent implant in.

Dr. Boobala recently told me that he might not be able to get Lefty to quite the same size as Righty, so if I want, I can have Righty reduced even more at the same time that they put the implant into Lefty.

After all of that, I’ll have to have another small surgery to form a nipple and aereola.

It’s quite a process, as you can see, but I already feel better about myself, not having to use a prosthesis and having two breasts, even if one of them keeps getting “inflated” 😉 each week. I think we’re almost done with the fills — maybe two or three more of those, but I’m not sure about that. At any rate, once those are done, I’ll take six weeks off to let the skin settle at its new size. Then I’ll have the surgery to put an implant in Righty and I’ll go ahead and get Lefty reduced again if needed and if insurance covers it.

So. There’s the story of my Righty and Lefty. I’ll admit, I’m getting tired of going to Dr. Boobala’s office each week, but that’s really a minor complaint. As I tell them when they say “back for more torture next week!”,

I’ve been through much worse.

And no, there will be no pictures of the new boobs. Well, Dr. Boobala will have those, but I certainly won’t be sharing any. *ahem*

Heh.


B.Y.O.S.

June 5, 2010

edited to add: I first learned about this spray in the hospital after giving birth to Olivia. New Mamas: this is the spray for you after you give birth. It’s Heaven in a bottle!

I was packing at the cancer center today…packing a spray can full of “Dermoplast” that is. Here’s a great little secret for those who are dealing with cancer or anything else that requires lots of blood draws and/or shots – bring your own numbing spray to apply before the procedures.

As you know, my blood draws from my ankles and feet are tricky and numbing the skin before hand makes it so much more tolerable. Moms, you might think of getting a can to bring to your child’s next shots too.

So, recapping: BYOS…Bring your own spray!


Struggling.

May 2, 2010

(by Susan, diagnosed with a recurrence of inflammatory or infiltrating breast cancer and locoregional metastasis in March/April 2010.)

I admit, I’m struggling.

I suppose it’s not uncommon for a person diagnosed with a third cancer in three years or a metastasis of a previous cancer to be anxious, quiet, and withdrawn.

I know it’s not uncommon for us to withdraw into ourselves or close family, to concentrate on the logistics of cancer diagnosis, the testing, the treatments, the side effects, the complications, the procedures, the planning appointments, the specialists, and the treatments to come. That’s normal, right?

But I’ve been surprised a bit at how this all has gone down. I am relying more on my nearest and dearest, setting up playdates nearly every day (even though many of them fall through because of illness, mine, theirs, or kids), cleaning the house obsessively (because God forbid it be out of order should someone drop by; they might suspect I’m struggling), spring cleaning and changing out the winter clothes for summer (labeling bins so that the change back for fall is easy for whoever does the chore, since I don’t know how sick I’ll be then), setting up summer activities to distract and engage the children, offering to watch others’ kids when possible (since I’ll need them to watch mine), joining a church again at last (I need to have a family of faith, since I was so disappointed by the brush-off that I got from my pastor last time I was in treatment, homebound, worried, and desperate to understand), paying the bills (and setting them up for automatic payment), calling contractors (to paint, to rewire, to fix the gutters, things I’ve put off for months or years), giving away outgrown toys and reorganizing the lego and playmobil sets that march across the playroom. Mundane stuff, right?

Isn’t this the time that I feel so blessed to have caught the cancer early enough for simple treatment? Before it went to my bones or brain?

Isn’t this the time that I spend all day snuggling my children? (Actually, I do. I spend all day snuggling and reading to my children. And then when they go to school or play independently I clean, so I can snuggle them more when they come back. This is not the way I used to do it. I used to work when they were at school, and teach them to clean with me (among many, many other things) when they were at home. But I can’t concentrate on work and do a good job right now. Luckily, the laundry doesn’t require much concentration. I have control over the laundry. I don’t have control over the cancer.)

Isn’t this the time that I reflect, here on the blog, and share these thoughts with you? It is, isn’t it? But why have I not been able to write real, intimate thoughts like this with you lately? Why am I so quiet? Why can’t I sit here and tell you, once again, like I pledged in 2007, to tell you what it’s really like to be a cancer patient and survivor? Am I ashamed to tell you that this time it’s not as easy? That some days, I don’t know how we’ll get through it? That I rage against the cancer in private? That I sink into my bed, seeking comfort? That I still have no answers for why this all is happening to me, and I search my past, wondering if it was something in the physics building at college or graduate school, wondering if it was the work I did in the clean room, marshalling van der waals forces to move nanoparticles from needle to needle, or those years with the mass spectrometer, where I was the only one to consistently wear my radiation monitor, even though it showed only low levels? That I wonder if the cancer was caused by the mercury spill that I worked next to for four days, because I didn’t know it was there and the technician didn’t want to be bothered with cleaning it up? That maybe if I had become a writer, or a microbiologist, or something on the other side of campus I wouldn’t be sick today? That then I feel ashamed for questioning, because surely all the research labs I worked in and was surrounded by followed standard radiation protocols and were safe for students and researchers? That I know that I can’t blame myself for contracting inflammatory breast cancer, Paget’s, and infiltrating breast cancer (if that’s even what it is), but yet, some days, I still do?

Isn’t this the time that I feel grateful?

I want to feel grateful. I want to feel that grace that came over me last time when I realized how close a call I had. I want to write words of hope and strength and coping here, so that others may see that the fight is not hopeless and dismal. I want to reach back to so many who have reached out, on this blog, on their own blogs, on twitter, and in person, dropping by or taking me out, helping me laugh again.

I love it. I love you. I do. And I appreciate it so much more than I have been able to say.

I haven’t been able to say it. Truthfully, I’m struggling. I’m not sleeping at night (at all, some nights, four in the last three weeks, and only a few hours most nights). I’m not eating, but I’ve gained 14 pounds since my medication was switched in February. I’ve found out only this week that two additional side effects of the aromasin are weight gain and the inability to lose weight. Nice. Thanks a lot, aromasin. No wonder my clothes don’t fit and I feel so crappy helping the kids scale the pirate ship or scrambling into the tunnel at the nature center.

I’m worried about my kids and how they’re coping. I’m helicopter parenting them at school, I know, but I want them to be in a place where there is love and friendship, not exclusion, pre-bullying, and fighting games. I’ve seen the effects of these things recently, and it makes me sick. I’m working so hard to provide them with supportive, positive playdates to counteract that time when they are essentially unsupervised on the playground at school. I’m looking into support for families now, before it gets worse, and I’m calling on resources from the American Cancer Society, The Wellness Community, CancerCare for Kids, and KidsKonnected to help me find out where to go and what to do to help my kids weather the stormy days as I adjust to the new treatment and recover from the surgery and its complications (the seroma is quite large, needing draining several times a week, and the draining has introduced an infection into the wound, which keeps me awake all night now with alternating hot flashes and chills, in two to ten minute cycles, for hours). I’m looking for other resources now, finally able to reach out and ask for help, and I want most of all help for my children, to help them feel like regular kids, and to give them a place where they can talk if they need to. I am looking. I don’t have a link for that. I want to find a place, though, and I am finally strong enough to reach out and ask. Have you seen one? Do you know a place on the East Coast where kids with cancer can relax and talk to each other or a professional about their fears?

I am realizing that I’m withdrawn, because I’m afraid. I make plans, but I’m not sure whether I’m planning to enjoy these things with my children, or providing them a place to go when I’m exhausted and in pain from the radiation that is to come. I tidy up the paperwork, the finances, the house, old contracts, loose ends, in hopes of regaining control over something concrete in this life. I realize now that it’s probably because the thing that I want to control the most — cancer — is not really up to me anymore. I have a treatment plan, with the endorsement of the oncology experts at Georgetown and Sloan-Kettering, and now I must trust it and move forward with hope and confidence.

I want to be strong. I want to accept this with grace. I want to just take it in stride and continue on with my blogs, my projects, my playdates, and my work. One day soon I will. But for now, I struggle. I admit it.

I admit it.

Crossposted on Toddler Planet.


An update

February 20, 2010

I posted on New Year’s Eve that they found a lump in my chest, and my worries associated with it.  Well I did end up having surgery last week – another surgery, I am sincerely sick of being cut- and I’m relieved to share that it was benign.  It was just fibrous tissue growing.  They didn’t think it was cancer going in but had to check.  I was relieved, but only slightly.  I am resigning myself to the fact that this is my life now.  I am now in the elite group that gets to say things like ‘oh this is just a little surgery’.  That’s what my oncologist said the week before when I expressed anxiety over it.  I suppose compared to the double mastectomy and hysterectomy I had, yes, it was just a little surgery.  I thought I would be happier when the surgeon called to tell me the good news, that it was not cancer brewing its ugly head again.  I was happy, but I couldn’t help feeling like I was just lucky to get a pass.  I couldn’t help but feel like, I’m Ok – for now.  I promise I’m not negative about my situation at all, I do feel very lucky most of the time.  I guess I’m only sharing my fears, how I really feel about it.  My 1 year diagnosis anniversary is in April, maybe as time goes on I will not feel as on guard as I do.  But – for now- I appear to be cancer free, and that is indeed something to celebrate.