Roll call

Roll call!  It’s the first of the month, and I’m thinking about all my friends with cancer or a cancer history — how is everyone?  Please check in by leaving a comment below!

Edited to add:  Read the comments.  There’s some really interesting discussion going on, about remission vs. cure, lingering nerve pain, preventative surguries, foobs, and more!

Be Proactive

My mom Debbie passed away in Feb. ‘08 two weeks before her 52nd birthday. Being just last year, I still struggle with grief, anger, guilt, and random thoughts pop up throughout my days about her. My son Chance still asks if he can see nana, and I have to gently remind him that she is in heaven, and sometimes he will tell me that he dreamt about her, that she came to visit him when he was asleep. I am still so struck by the last year of her life, how everything was for us with her living with me that I can’t help but think about life and death. In fact it’s all I have thought about for the last several years, I sometimes fear I brought this cancer on myself because of my inability to escape emotionally from it. Her face in the very last second of her life, the tears that sprang up in the moment the nurse called time of death is imprinted in my brain forever, and the experience of having to decide to give her morphine for comfort- knowing there was no turning back if we did- is like it happened yesterday. It’s kind of funny because she drove me nuts, she literally made me so crazy I had to see a therapist when the cancer travelled to her brain just so I could deal with her. I would happily have killed her myself most days. But I did love her, and I do wish she were here now, her crazy faults and all. She always thought I didn’t listen to her, but I must have because it’s a year later and I can’t get her words or actions out of my head. This post is partly about doctors, and about being proactive with your health. About caring enough about yourself to want to live, and for fighting for your right to it.

My mom was diagnosed with lung cancer Dec. of 2006. I was very pregnant with Sinclaire, Chance was only 1 years old and she was living with my family. Hank, my stepdad died of liver cancer about 5 years ago now, so she was passed around staying with friends and family until she settled with me-the only child- a few months before Chance was born and she never left for long after. For the record, she had COPD for years before her diagnosis. She wasn’t on an oxygen tank, and she never quit smoking. (don’t get me started on this subject) So with COPD, we had several trips to the ER because of breathing issues. Some thought I was insensitive when she was diagnosed but honestly I wasn’t surprised. I remember when she got the news. We were home, the phone rang, it was Dr. K and he told her point blank the test was positive for cancer and she had about 1 year to live. She broke down after hanging up thinking just that … not the cancer part. The other part. It is my belief those words shaped her entire experience and existence for the the next year that she was alive.

One year to live? Was he God? Did he have an ‘in’ with the powers that be that we didn’t, that he could tell her such news over the phone? Anyone ever heard of bedside manner, or even in-person manner? This post isn’t about bashing the doctor who treated her. In fact, he’s very nice and I’m sure adequate at his job. But looking back, we were ill-informed, and we could have done more if we had known we could, and how to go about it. For the most part, her chemo treatments were standard and the right choice. She had lung surgery on Dec. 12th, 2006 and started chemo a few weeks after that. By April or May, the cancer was gone. There were no more signs of cancer in her lung area, and it hadn’t spread anywhere else that the PET/CT scan showed.  The issue, the thing that signed her death certificate, was the lack of follow-up. After explaining in depth at our first meeting in the little room, how lung cancer will most likely travel to other parts of her body after surgery, and she wasn’t a candiate for radiation, one would think that check-ups at least every 6 weeks would be necessary. He gave her a cancer free bill of health, and said come back in 6 months. He is an oncologist, we were just uninformed family… if he said see you in 6 months, well that is good enough right, time to celebrate? No. When she went back in 6 months for a CT scan and blood tests, they were clear as well. No cancer. Excellent news, except something was off with her. And this is where I blame myself. I could see that something wasn’t right, her speech was sometimes slurred, she would forget things, and she would call my kids by other names. I asked again about the tests, they assured us she was fine. Two months later, on Dec. 10th, 2007 she passed out and was taken to the ER where they found a large brain tumor near her ear on the right side of her head. The lung cancer had been spreading to her brain and growing, in fact there were about 4 tumors the largest being operable and the others needing radiation. She was taken to OHSU (different than her previous onco and highly recommended). One year to the day of her lung surgery, she had brain surgery. It was an emergency situation as the pressure from the tumors was expanding her head, and they had to drill a hole just to relieve the pressure or else.. well. The surgery went well and she had a great recovery. Once she healed from that, she was scheduled for radiation with Dr. Fuss at OHSU- an amazing radiologist who not only answered all of our questions from a medical viewpoint, he believes in life and quality of life, called me on the weekends to give me updates and worked through her fears of being in that mask that had to go over her face so they could treat the tumors. Needless to say, she passed away 2 months later on in Feb,08.  (Edit- not because of the brain tumors, because her lungs gave out ) Regardless of everything and how hard it was, I do think it was her time because she didn’t have the will to fight anymore. From the beginning, she had sort of a defeatist attitude mostly I’m sure, because the very first words spoken to her were ‘you have cancer and one year to live.’ We asked Dr. Fuss for a timeline on her life, the last onco had given us one so we thought it best to be prepared. He refused, he said with proper treatment and response, you can’t put a time on someone’s life. If only someone had told us this sooner.

The morning of the appointment where I was to get the results of my biopsy was somber, and I was quiet. I knew the results beforehand, I could feel it, I had felt it for some time. For several months before my trip to the ER I was waking up in the middle of the night with cold sweats terrified that someone was trying to break into my home. I would stay up for hours, scared of some imaginary force that I was positive was real. The doors were locked and barricaded, it would take some serious professionals to get in, but I wasn’t soothed. About a month before, I was looking at my moles, I have one on my left shoulder that has jagged edges and I was trying to figure out if it had changed, then I moved on to my husband who is a redhead and has lots of those bright red moles, I was tuning into my young children trying to ‘hear’ if there was something wrong with them . I was searching for something, one friend told me it was like I was waiting for the ball to drop. Out of all the things I thought was looming, breast cancer – and especially Inflammatory Breast Cancer – was not among them. I still am not convinced it’s really happening. That morning after getting my mocha on the way to the doctor’s office, I could visibly see my mom in my mind, and I could feel her with me and I would swear I heard her say ‘do it better’. I told Ken, my husband and he thought it made alot of sense, that if I were to learn from her mistakes… fighting to live and wanting to live, and beating this cancer would be something big that I could take from her experience. I went all the way to think that maybe the whole point of her living with me during those trying times was to show me first hand how to do it better than she did. In the grand sense of the ‘bigger picture’ and some lessons aren’t learned until years later, this makes sense to me. I am thankful to her for telling me that beforehand, right before that doctor’s appointment, and I’m convinced it was her now because of what happened.

The surgeon came in to give me my results, and the words out of his mouth were ‘you do have advanced invasive breast cancer, several tumors are positive for it (3), and I would be very surprised if it isn’t in your lymph nodes and probably beyond in other organs as this is a very large aggressive mass’. I had already done my research on IBC, and knew I needed an onco who was smart enough to deal with it pronto, so I said ‘get me into an oncologist today’. He said ‘now now, there’s no need to rush… this isn’t something that has happened overnight, they have been there a very long time, we’ll get you into one but it’s not like an emergency situation where you need to be seen today.’ I knew intuitively he was wrong, that he didn’t know anything about IBC. I walked out of that office picturing my baby girl’s face, almost posively crushed at the thought that I might not be alive in a year to see her 3rd birthday. By the time I got home though, I was mad and I contacted an IBC site who put me in contact with someone else who knew that what he had said was malarkey, and in 2 days I had found my own oncologist who knew what IBC was, and how to treat it effectively, and how important it is that I DID get in that same day- not the next week. If I hadn’t done my research, if I hadn’t known to look for other sources… who knows how my outlook would have been hearing those words from his mouth. Turns out, I do have 3 positive tumors, but it hasn’t left my breast. It’s not even in my lymph nodes according to the CT/MRI/PET scan. That’s quite a bit of difference in diagnosis. I’ve been angry about that doctor’s appointment ever since, angry about his lack of knowledge on the subject, angry about telling a patient- any patient- that they have cancer but it’s ‘not an emergency situation’. I’ve been angry that my mom got a death sentence along with her diagnosis because I knew she wasn’t strong enough to emotionally combat what any doctor says. But I know now, that it’s not what we’re told by doctors, or anyone for that matter it’s how we respond, the actions we take in response to the info given. Even with what had happened, I was nervous and scared about seeking a second opinion, I felt they would be angry with me somehow. Never be afraid to get a second, third or fourth opinion. This is your health, my health, and the most important thing is being pro-active with our healthcare, not giving up, and not buying into a death sentence just because a doctor says so. If my mom had had an MRI instead of just a CT scan- that can’t read brain mass- we would have discovered those tumors well before they got to the point that they did. We didn’t know it was our responsibility to ask for that test. I guess my advice is don’t be afraid know the facts, know all of the options available to you, know all of the scenarios, seek out other people who have had the same experiences and are survivors, if someone says ‘my friend died of that’ find out why instead of being scared- it’s possible they caught it too late, or the physician didn’t know how to treat it, their diagnosis does not mean the same for you. My mom’s face on her deathbed is forever with me, day in and day out, and it takes alot to say ‘her situation is not the same as mine’. But I have to, for her, for my kids, my family and hopefully for other women out there who are facing this same scary monster or will in the future.

crossposted to http://lynkelley.wordpress.com

First Cycle: Xeloda & Tykerb (Medical Update)

(cross posted from Coffee and Chemo
————————————————————————————

The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

Please pray (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Have Boobs, Will Travel

The day after my mastectomy I was released from the hospital with a nearly concave left chest and a drainage tube at each end of the incision that ran from mid-chest to under my arm, stopping just short of my back.  I looked like a Cyborg.

Not until I saw my surgeon ten days later and had both tubes removed was I able to get a special bra with a puff to “even things out”.  Which hadn’t been such a big deal because I really wasn’t feeling wearing anything remotely nice with plastic sucky thingies protruding from my body, but I was excited when I was finally allowed to get a post-surgical bra.

I liken it to getting a training bra.  It looked kind of like one and came in sizes such as small, medium, etc.  The assistant in the Women’s Resource Center looked at my ta (the singular of tatas), nodded her head and said, “Medium bra, small puff”.   Whatever.  I couldn’t be sad about the “small puff” comment because small was better than nothing, which is what I had on the left side.  I couldn’t wait to get home and put on my new bra with the insert to see how my tops looked.

Running to my room like a kid at Christmas, I practically threw off the shirt I was wearing.  I had already ripped the packaging off the puff in the car and stuffed it into the convenient pocket of my new best friend.  I fastened the clasp, adjusted the straps and looked in the mirror only to be totally deflated (no pun intended).  The “small puff” was too big!  It didn’t even me out, it just made me lopsided in the opposite direction.  So I pulled out the filling until it was just about the right size.  I guess that would be extra small.

The humiliation didn’t end there, though.  A couple weeks later when I received my chemo-port the professional staff had to keep asking me which side I’d had my mastectomy on.  Really?  I chronicled that experience here (which also includes me on drugs) because if I’m going to share one embarrassing moment I might as well go the whole way.

Finally I was given the go ahead to get a real mastectomy bra and prosthesis.  Barbara Graves Intimates in Little Rock is one of the few shops in the area that have mastectomy merchandise so my friend, Beth, and I decided to go into town for dinner and a boob.  

Prescription in hand, we weaved our way through the beautiful lingerie that wouldn’t work well on a uniboob and found the very pleasant fit specialist.  She took us to the prosthesis room with boxes and boxes of silicone blobs and asked my cup size.  I didn’t want to say Almost-a-Boob so instead I came out and told her what I was thinking.

I knew I would eventually have reconstruction and was fairly certain I would have a prophylactic mastectomy at that time.  If I was going to go through all that trouble you could be sure I’d be making the surgeon earn his money.   So instead of matching up my right breast I wanted to see what it would be like as a larger version of me.  The problem, however, is that insurance will only pay for one prosthesis if you had a single mastectomy and those puppies are expensive.

That’s when the helpful lady told me it’s very common for women to return their “breasts” after reconstruction.  The foobs (fake + boobs = foobs) are then cleaned and sterilized and given to women with no insurance.  So Blue Cross/Blue Shield bought a regular foob for me and Barbara Graves donated a filler foob for the other side.  And a happy day it was when I could proudly stuff my bra and not feel like a fraud.

The Girls (as Beth named them) were treated very special.  Every night they had to come out of their pocket, get washed and then put to bed in their cradle.  Seriously, that’s what the box was called.  A cradle.  Sometimes they were hot and sometimes they were heavy and sometimes they misbehaved abominably – like when I went swimming at the YMCA in my new mastectomy swimsuit and the Girls decided they’d rather swim around my waist instead of stay where they were supposed to – but for the most part they were my good friends.  They did their part to make me feel a little more normal than I otherwise would have.  That is until late December 2006 when I put them away for the last time and had reconstruction.

We had moved to Pennsylvania six months before my reconstruction so I wasn’t able to drop the Girls off at Barbara Graves when I happened to be out running errands.  They slept peacefully in their boxes on the shelf of my closet for two-and-a-half years.  And then a month ago we drove down to Arkansas for a visit.

Instead of luggage in the back of the car, we had our dog.  The luggage had to go in a special travel bag on top which had to be taken off and put inside the car during our overnight stay on the way down and the way back.  Along with the luggage was a bag full of mastectomy bras and camisoles and two boxes with breast prostheses in them.  When we stopped on our way down the guys were taking everything out of the bag – a bit of a pain – and I heard Todd tell Taylor, “Well at least we won’t be bringing mom’s boobs home with us.”  Because, you know, they were so large and unwieldy.

While on vacation my mother and I ran into Little Rock one day and I took all the mastectomy paraphernalia with me.  We drove up to Barbara Graves, I walked in with all my goodies and the attendants seemed as appreciative as if I’d donated a bajillion dollars.  Or maybe a couple grand.  And it made me happy.  Maybe now some woman with crummy or no insurance will be able to feel a little more normal than she otherwise would have.

Cross-posted at Jenster’s Musings

Jen Ballentyne

Our friend Jenni Ballentyne has entered hospice.  It’s a good thing, my friends, for she is able to relax and be cared for, although of course it is a signal that all is not well.  All hasn’t been well for Jenni in a long time, though.  If you’ve ever read her blog, you know that.  You know that she has suffered in ways that most of us will never have to suffer.  And you know that sucks.

Because it does.  There is no good way to say this.  Cancer sucks.  Her kind of cancer has its own special horrors.  But Jenni has persevered through rounds of treatment, surgeries, crises, and indignities that no one should have to face — and Jenni has done it with a determination and a will that awes all who know her.

Jenni loves her children, Jack and Jamie, and is singlemindedly focused on what’s best for them and their future.  She discussed that in a comment this week, talking about her decision not to try maintenance chemo again, knowing that it will not significantly prolong her life, and it will make the last few months miserable.  She says it better than I could,

The chemo affects you so badly that you don’t even want to talk to anyone, you can’t lift your head, I mean I just don’t see the point. Say I have six months, say chemo will buy me an extra three, but the entire nine months will be revolting. Not worth it. The price is just too high. If it helped my kids then I’d do it, but it doesn’t help them to see me so ill that I can’t lift my own head, there is absolutely no good to come from that at all…. Leaving Memory Boxes, letters, just sweet, special things for my boys is my priority now and I am building on that each day.

And once again, she inspires me as she walks the difficult road that is life after a cancer diagnosis.

Go give her some love, will you?  She has plenty — oh, she has so much love — but it will make you feel better, just to be in her presence.  Pinky swear.

Go.  She’s worth it.