So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa.  She’s wonderful!  Incredible!  Awesome!  I fully and completely credit her (and God, of course) with saving my life.  I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006.  She didn’t even blink an eye when she said, “90%”.  Jeez!  You could sugar coat it a little, Lady! 

Anyway, back to the appointment.  I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas.  I’ve been losing sleep over it.  At least I think that’s what has been disrupting my night-time routine.  Maybe I’ve been worried.  Maybe a little bit.  Maybe.  So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured. 

Wha?  Huh?  Did I miss something? 

Yeah, you heard me right!  The other “C” word. 

Cured! 

CURED! 

Cured, as in, gone.  No more cancer.  Not ever. 

OK.  Am I the only one that thinks this might be a bit of calling up the devil?  Scary stuff…

So she explained herself.  First off, my rogue Alk Phos levels have returned to normal.  In fact, my labs are “perfect”.  <Insert pride and preening here>  Then there’s those odds… the 90%…  Turns out most of those turn out to recur in the first 18 months.  Particularly the Triple Negative Inflammatory Breast Cancer patients, like me.  However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo.  Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur.  Never. 

Joyous of all words, that “never”. 

So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name. 

Stella, cancer patient.

Stella, cancer survivor.

Stella, cured.

Cross-posted to I Can’t Complain Any More Than Usual

I have always been afraid of divorce. I am not sure if it was because I was so young when we met. If I was afraid of being alone… which is a funny concept because I have felt alone for much of my marriage. I was afraid of what others would think. I was afraid of the kid sharing. I was afraid that once I asked for a divorce he would not support us. I was worried about money, which is also a funny concept because I was worried about money with him too….probably more so. I was afraid because he was my first love. I was afraid to have to try to meet someone else to spend my life with and now even more so as a cancer survivor, with a double mastectomy. I was afraid because I love the idea of marriage and family and I desperately wanted to have a long-term marriage and a good family life for my kids.

We had talked about divorce many times and in fact were very close in 2006 and then the cancer diagnosis. We stayed together, but in hindsight I think that was the final nail in the marriage coffin… thank goodness in was not the final nail in my coffin. I learned so many lessons from my cancer, mostly what is truly important. It changed me in so many ways. I guess I thought it would change the others close to me too. I have learned that just because we learn lessons, it does not mean everyone else does. So many times after the cancer I felt like the glorified nanny and housekeeper. There were many issues that I could not talk about then, that I hope someday I can share in case other women experience the same with their marriages.

Over the past 5 years since my diagnosis, those that knew of my marital problems would say “you survived cancer, you can survive divorce”. I heard what they were saying, but I just could not find that courage. I felt cancer was different. I had a team of doctors that I trusted. They said “do this” and I knew I would do it and follow their directions to the letter. There is no trust in divorce… another funny thought because there was no trust in my marriage either. I was not blessed with being able to trust those who are supposed to love and protect you.

I was so afraid of asking for a divorce and then having my cancer come back, what would I do? I don’t know if my cancer will come back, but I know if I stayed it definitely would. I found the courage. Divorce is hard, but cancer is harder.

On the tough divorce issue days I think of the other Mothers on this site who are fighting their cancer daily, hourly and by the minute. I think of the women that we have lost and their valiant fight, they remind me everyday what is truly important and then I remind myself… “if I survived cancer… then I can survive divorce.”

Please say a prayer or lots of prayers and healing thoughts for one of our fearless and amazing leaders, Susan, she has been having some breathing and pain issues and was admitted to the ER on Tuesday.

Last night as I sat down to see what was new with my Facebook friends I whooped it up when I saw my friend, Shelley, hit her five year no cancer goal. I’ve known Shelley for what feels like forever. She’s the little sister of my junior high, high school, matron of honor, etc. partner in crime friend, Cathy. Two memories of Shelley from back in the day: 1. She could recite pretty much all of 16 Candles; and 2. She could do the entire “Thriller” dance.

I know exactly how she felt yesterday. You get breast cancer, you have surgery and go through treatment, you slowly get better and each time you have an oncology appointment you come away happy to know you’re not showing any evidence of disease. And then you hit that five year mark and your chances of recurrence or metastasis dramatically drop. You can see many more wedding anniversaries and children’s milestones far into your future. And, even though you hadn’t really been worried about it, you’re relieved and excited and happy and feel like celebrating.  I’m pretty sure champagne was involved on the West Coast last night.

My heart soared.

As I continued to peruse the statuses I came upon one from a Mothers with Cancer associate. That’s when I found out another one of our writers, Judy, had been admitted to hospice. Judy was diagnosed with inflammatory breast cancer in December of 2007 and determined in remission the following year. Nearly two years later, November of 2010, she was found to have a recurrence and she fought it with everything in her. And there was a lot in her! A lot of faith, a lot of courage, a lot of strength and she wrote about her experience with so much raw vulnerability and authenticity that you couldn’t help but know, admire and love her. She also wrote about the fear and the pain and the sadness and her desire to be a mom to her young son and a wife to her loving husband.

My soaring heart plummeted.

This morning I found out that she passed away last night. I never met this woman in person and yet I feel such a strong connection to the women of Mothers with Cancer. Every time we lose one it’s like losing a part of myself and I daresay it’s the same with the other contributors. She leaves behind a devoted husband and a 10-year-old son – probably the biggest fear of a Mother with Cancer.

My heart now feels deflated.

To say I was shocked by Judy’s passing would be a gross understatement.  Yet, I guess, I knew it was coming.  I just thought she had a few more months.  Judy was special to me.  She was my first…  the first person with Inflammatory Breast Cancer I’d ever encountered.

I remember well how it felt to find posts from IBC survivors that were years old with no updates available.  I thought to myself how wonderful it was that they’d survived X number of years… but where were they now?  Alive?  Dead?  It turned the potentially hopeful, inspiring stories into landmines of doubt and fear.  At that time, I vowed to be an active, living voice of an IBC survivor on the internet.  Enter Judy.

I found Judy’s blog after I’d returned to work from my own cancer treatment.  She had just been diagnosed.  She was already metastatic.  I made a concerted effort to comment on her blog.  Hoisting myself as a flag of hope at the finish line of treatment:  cancer-freedom.  Of course, that was naive of me.  I had little understanding of metastatic disease back then.   But still, I made sure I was that living, breathing voice of survival from such a deadly disease.  Through Just Enjoy Him I found other Inflammatory Breast Cancer patients, notably, Susan (WhyMommy).   Seems we all had the same supportive idea.

Judy was the beginning of my advocacy.  She was my window into the dark side of breast cancer.  She was my first reality check…  the first time I realized that attitude and strength of will were not the impenetrable armor against cancer that the media would have me believe.

Following Judy has not always been pretty.  She struggled with anger and fear that I never truly experienced.  But inevitably, her faith in God lifted her up again.  She lived a roller coaster ride of plunging health and spirits followed by glorious soaring heights.  That is life.  That was Judy.  That is metastatic cancer.

I will miss her voice.   I will miss here spirit.  I will miss her face smiling back at me from my monitor.  I will miss her planking.  Heh.  I will miss Judy.  But I’ll see her again someday.  What a glorious day that will be.

Judy was, tragically, already metastatic when she was diagnosed with Inflammatory Breast Cancer in 2007.  She fought this horribly aggressive cancer for 4 years with grace, humor and a double dose of faith that we could all hope to attain.  Judy’s tale wasn’t always pretty but it was unfailingly honest.

She has left behind her husband, Frank and their 10 year old adopted son, Nate.  Please keep them in your prayers at this difficult time.

Please feel free to leave your memories of Judy, favorite stories and words in the comments below.  I’m sure her husband and son will take comfort in them.  I know I will.

Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.  And please – spread the word!

A week and a half ago, I took YD to visit the graves of her Poppa (OH’s dad) and her godfather K, both of which had passed away in 2000.  It had been one of the things on the list of things we had written earlier in the year of things she wanted to do when she came home for the weekends but we hadn’t got round to it until now.

I had a little bit of ulterior motive taking her this time, with the progression of the tumours in my liver and no guarantees that the last couple of chemos we have got to try will give us control for much longer, there has been more thought, and talk, about the virtually inevitable outcome to this story.  As YD lives away from home in a residential supported living environment to a certain extent she has been shielded from the worst of the chemo side effects and we have been able to keep the whole ‘cancer’ thing a little less scary for her.  But this means that she doesnt know , unlike her two older sisters that this is likely to turn terminal at some stage in the future.

As an aside, I personally think in staging cancers now there is long term survival, control and even sometimes some sort of remission acheived in metastatic cancers (Stage 4).  There needs to be a stage 5 introduced where you have exhausted treatment options and are in palliative end stage.  Stage 4 could be seperated into Stage 4a (control and shrinkage of the tumours as to be negligible) 4b (stable no growth) 4c (progression but still treatment options available )

Anyway, in discussions with L, who is the manager of the houses in the residential service that YD uses, there has been discussion around how much we tell YD and L has suggested we tell YD more.  I feel that at the moment when things are so up in the air time-wise, and while I am still fairly active it would just confuse her to talk about me dying when she deals in very concrete concepts and time-frames.  We have told her with this latest news that the cancer isn’t going to go away and that I have to change medicines and the new medicine will make me lose my hair again.  She was quite blase about the news as to her nothing much has changed then in the last 3 years.

Taking her to the visits to Poppa’s grave on Saturday and K’s grave on the Sunday (they are buried in two different cemetaries, in opposite directions from our house) allowed to us to have a talk about death in general.  She knows that Poppa and K were buried whereas my parents, who died in 2001 & 2004 were ‘turned into dust’ (cremated).  She expressed a wish to be buried herself and asked where she might be buried.  She also asked where I would be buried when I die, which helped me make up my mind between burial and cremation for myself, as she expressed a wish to be able to visit my grave when I die.  So although YD doesnt know that my death is likely to be sooner than she expects, I feel like we have done some preparatory work around it.

After visiting K’s grave on the Sunday we went to a nearby mall that we had not been to for a while. We did some Christmas shopping and surprisingly bumped into people we knew.  Usually when we go out it is when YD gets tired that the outing ends.  This time we left the mall when my fatigue etc kicked in.  YD was very grumpy about leaving and coming home so in the car I reitierated how I feel sick and tired, because she only sees me when I am up to doing stuff with her I dont think she realises just how much my health is compromised.  I have warned I might get more sick and tired and that she can’t expect me to take her out all the time.  I think that is all the preparation I can do for now.

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:)

It appears that this whole heart scare was a tempest in a teapot – a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don’t know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It’s a bit unnerving but, given the alternative, I’m happy to serve as a human guinea pig.

Cross-posted from Not Just About Cancer.

I wil share some of these nuggets, though, these little bits of information that, for whatever reason, struck me at the time as important enough to write down.

So here goes a disjointed, fragmented post . . . even though it’s all about metastatic breast cancer (MBC). That’s the thread that holds it all together.

One of the speakers talked a little bit about how the Network first was formed because two women, both with MBC, felt isolated and alone in support groups of people with early stage breast cancer. Things like going pink all of October or celebrating the end of treatment “is not possible with metastatic disease.” I know what she means, what the founders meant. I chave totally different conversations with those with early stage breast cancer (BC) than I have with those who have MBC. The ones with MBC seem to intuitively know what I’m going through, what I’m feeling and even thinking. They understand the very real fear of dying, of leaving this earth before I’m ready. They understand the worry I have for my child, my husband, my little family. They know that talking about death doesn’t mean that I’m obsessed with death or that I think I’m going to die soon. They understand that it’s a deep need to understand what will eventually happen to me with this metastatic disease. They understand all of these things because they live with these things themselves.

Approximately 30% of people diagnosed with early stage breast cancer will at some time develop metastatic breast cancer, cancer that has spread to organs other than the breast. Breast cancer, if confined to the breast, doesn’t kill. MBC, however, kills. And there’s very little research done on MBC.

One of the reasons that we also may become, in Whymommy’s words, cancer rebels and pink protesters, is that we can’t be happy and pink during October. We can’t join the throngs of “survivors” if we’re not going to survive this disease. We know we’re different, that we’re what they fear the most. How can we join in when we’re the black sheep of the breast cancer movement, the bad girls of breast cancer?

We can’t. We stand out. People get quiet when we tell them that we have MBC. They don’t, understandably, know what to say, although I think an “I’m sorry” or “I’m sorry to hear that” is always something you can say to people who are struggling not just with breast cancer but with so many other things that happen to people.

We are the 30%. I am part of the 10%, the percentage that was diagnosed with Stage 4 disease from the outset. I guess that makes me one of the REALLY bad girls of breast cancer. And it makes me unpopular with some people, with people who only want to see the happy stuff, with people who are uncomfortable with my diagnosis, with people who just can’t face the fact that I won’t be around someday, that barring a miracle or sudden death from something else, this cancer will take me in a horrible way.

Trust me, it’s not something I like to think about, but I have to. I have to try to prepare my loved ones that someday I won’t be here, I may be in hospice care, they may watch me die. Believe me, I don’t like that image any more than anyone else does, but the difference is that I can’t pretend that it doesn’t exist, I can’t say, “Oh, you’ll beat it,” because MBC is an equal opportunity killer — it takes fighters, optimists, supplement-takers, vegetarians, the religious, etc., just as much as it takes everyone else.

I will die from this. My husband, bless his heart, still says, “I hope not,” even when I try to talk to him about things that are important to me, that I think he’ll need to know about if it gets to the place where he’ll have to raise our son by himself.

*sigh* It’s a hard life. Even so, I love my life and I have an amazing God and I hope and pray for treatments to extend my life for a very long time.

That, and a good medical team, keep me alive for now . . . .
_______________________________
Cross-posted to Just Enjoy Him.