November 22, 2011
I know I am not much of a blogger these days. I even took my personal blog down while I work on a different one, but I am not finding the desire to work on it. I kind of put myself out there to the world, cancer and personal warts and all, and am going through a phase of privacy. I still want to share and support others, but I find that I have this deep need to be ‘normal’ for a short while. I’ve been focusing on things like playdates and moms nights out, and going back to school for a different degree, etc. I felt guilty for not keeping up with my cancer pals like I should, and then I remembered that no matter what, I will always belong to this community. If we all lived in the same neighborhood, I guess my role would just change from a weekly meeting to dropping off food a couple times a month.
For an update, I’m 2.5 years out from my IBC diagnosis. I had a double latissimus breast reconstruction in July and I had my last expansion last Monday. The next step is healing and letting the radiated skin continue to change and heal, then we will do a fat injection. Though I’m not a fan of surgery by now, I’m kind of looking forward to the removal of fat from my stomach and putting it in my boob. Then it will be another 6 months after that I hear, when we will attempt the implant exchange. I’m fine with taking the time to make sure it’s done as best as it can be. I can see the visual changes in the tissue on my left side change weekly, and hopefully by the time the implants are in it will be supple enough to pass for a breast. The good news is that I’m no longer calling it a ‘frankenboob’ which my plastic surgeon appreciates. I’m taking pictures along the way and will publish a photo show at the end of it all.
My oncologist left the practice a while ago, and I finally met with a new one last week. We’ll see how it goes, I know I don’t have to explain to you all how it is meeting a new doctor unfamiliar with you much less wondering if they are familiar with your disease. Other than that, I’m good. I find myself relieved the older my children get, my 6 year old son is in first grade and my daughter will be 5 on Valentines day. Now that there is a small hope they will remember me if I die tomorrow, I relax a little. Anyone play bunco? I played that for the first time last month and it was fun! See, that’s the type of thinking my brain goes to these days, I think I am serioused out. the death of my mom from cancer followed by my own diagnosis a year later at age 30 followed by my marriage falling apart, I think I’m done. I want to spout something wise, but I end up thinking ‘hey let’s make cookies and watch a good movie’ instead lol. It’s a phase I know, but as someone who’s gone through a LOT of phases, I can’t say it’s any better or worse than a cancer focused one, it’s just different. I wish you all lived closer so we could have a huge cancer warriors only bunco night complete with cookie exchange! Then I could combine it all and feel somewhat normal again:)
June 4, 2011
Last night my 12-year-old daughter got in trouble with her father and he just barely raised his voice at her. Her response to this was to look at him and say, do not yell at me. I wasn’t sure if my husband’s head was going to explode or not…it was touch and go there for a while. My reaction, on the other hand, was to cry. This has been happening more and more often lately. I went to the grocery store and my husband told me I bought the wrong kind of cheese – I could feel my chin quivering and the tears forming in my eyes.
I’m turning 42 this month. I know what menopause feels like, because I had the honor of going through it when I went through chemo. Not only is it my birthday this month, but it’s also my 2 year cancer free anniversary – which means it’s been two years since I’ve had a hot flash or a major mood swing. So, ok, I’m going through menopause, right? Am I just starting menopause at the ripe old age of 42? Is this a carry over from chemo? Is it cancer? Is it cancer? Is it cancer? I get so tired of thinking that.
I see my oncologist every 4 months now. It’s been 5 months since my last appointment. Putting off going to the doctor doesn’t change what the outcome is going to be. Intellectually I know this. When they found the lump in my breast, they told me to trust them, because it was probably nothing. Boy, were they wrong that time. If I hear that again this time, I think my head will explode.
April 28, 2011
Five years ago this morning I heard those dreadful words… “You have Breast Cancer”. My world stopped and I am sure I was walking around with what I call the “deer in the headlights” look for quite a while. I gathered all of the information I could… I made some hard decisions….I did what the doctors told me to do. I have reached some of the milestones that my doctors said were important… One year of survivorship, two years of survivorship and now five years of survivorship. Is it a guarantee that my cancer will not come back? NO …no one can give those guarantees, but today I am not going to think about that. I am going to celebrate that I have reached this milestone.
On Monday, I went in for my yearly breast MRI. I tried to cheat and make the appointment right after that with my breast surgeon… hoping that she would be able to read the results right then. She did try, but not all of the information was available. But she is a woman too and she knows how we worry. She did her physical exam and took a preliminary look at the MRI results and said she was “happy“ . Yesterday I received a message from her office, it was “good news, call us back“. The nurse said “Dr. Police is happy we will see you in a year“…well if Dr. Police is happy then mb is happy!
So I will raise my glass… or cookie in my case and take a bite out of life for as long as I can!
cross-posted at marybethvolpini
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.
May 1, 2010
By Lorri Steer
Monday our local paper ran a cover story about a play that the local community college is presenting this week. It’s called “At Wit’s Start” and was written by a young doctor who found herself battling stage 4 ovarian cancer. It’s based on her Pulitzer Prize winning book. I can’t wait to see the show but I had issue with how part of the article was portrayed. My letter follows.
This is for all the women who are currently going through chemo and dealing with hair loss. I know your pain.
Thank you for your cover article on the upcoming Front Range Community College play “At Wit’s Start.” As a young women living with advanced stage cancer myself, I very much look forward to attending the show.
While Mr. Rochat’s article is well written, I take issue with one point. The caption on the “If You Go” photo reads: “Stephanie Roscoe has to shave her head every other day for the role of Dr. Vivien Wit.” (italics mine.) She chooses to shave her hair to add an authentic feel to character. A sacrifice for art? Perhaps. The same unwilling “has to” hair loss chemotherapy patients endure? Not at all.
I’m bothered by the implication that there is any kind of likeness in choosing to shave one’s head for a play and loosing one’s hair (including eyebrows, eyelashes and all bodily hair) in a medical gamble to save one’s life from a killer disease.
Please don’t draw parallels between the baldness a cancer patient endures and the shaved head of an actress. Cancer’s suffering runs deep and a bald head is just the tip of the ice burg.