N.E.D. – THE BAND

December 29, 2009

I have heard that having a guinecological surgeon and oncologist in one is a good find.  I was lucky in that even though I didn’t have a guinecological cancer, there was one of the best of them in the building when my oncologist suggested a hysterectomy along with my mastectomies.  Not only is his picture on the brochure for The Da Vinci machine which shows he knows his stuff, his picture is also on the cover of a new CD his band N.E.D. No Evidence of Disease has just put out.  Every member of the band is a guinecology oncologist or guinecology medical person of some sort.  Here is what I picked up at his office about their mission:

N.E.D. is made up of six gynecologic oncologists who always hope to deliver the sweetest message their patients can ever hear: “NO EVIDENCE OF DISEASE”.  Their mission is to enhance knowledge about gynecologic cancer, to save lives, as well as to bring hope through music to those undergoing treatment, and to the world at large.  Proceeds from every CD sold will be donated to N.E.D. Fund at Gynecologic Cancer Foundation (GCF), which promotes awareness and early detection, and research of gynecologic cancers.

Order the CD at:  www.marjiesfund.org, www.amazon.com, www.borders.com, www.barnesandnoble.com, www.itunes.com    

I wouldn’t normally promote one thing over another, but I know Dr. Winter personally and he’s a good guy who believes in their mission.  He never once said anything to me about his band, or their projects, I only learned of it through other doctors and a small flyer at NW Cancer Specialists.  I haven’t heard the music myself yet, but I am going to pick up a cd soon because I know the proceeds are going to a good cause.


Well-done

December 11, 2009

Would be a nice way to describe my chest and lymph node area right now.  I think burnt to a gross bubbling curdling painful peeling mess is more accurate.  I am excited to say I finished radiation Monday of this week.  I went twice a day for 4 and a half weeks.  Even on Black Friday, they actually opened the place up just for me.  I didn’t miss a single appointment and when the machine broke I agreed to driving half an hour to a different facility.  When I woke up Tuesday morning, I was in a short state of confusion about what to do with myself.  Of course I have my 2 year old and 4 year old to keep me busy, and there’s holiday stuff to be done, but surely I should be at the cancer center at some point today right?  Then I remembered, nope I’m done.  From here it’s just Herceptin every three weeks with doctor’s appts. and check-ups.  Feels kind of strange after the last 8 months.  I asked when my first post-cancer scans would be and was told ‘not for a while’.  I’ll ask my regular oncologist at my appt. next week because I think I would like to know that I’m still clear.  As for regular life, I am looking to the future.  I enrolled to take a couple of medical classes starting Jan. 4th, thinking to combine my business degree and background and maybe work in the medical business field.  We’ll see.  It’s a nice relief to see a possible future after being diagnosed 8 months ago with IBC, what goals I’m working on don’t seem as important this minute as the fact that I’m still here to work on them.


New IBC Clinic Opening Soon

November 8, 2009

crossposted on http:lynkelley.wordpress.com

I received this email from Patti Bradfield, co-founder of www.eraseibc.com, regarding a new IBC clinic opening soon.

Email below:

Hello All,

I would like to bring some very exciting news to our IBC community.  It is my pleasure to announce there will be a new IBC Clinic at Fox Chase Cancer Center in Philidelphia in approximately six months (if not sooner).

With this new clinic opening, it is also my honor to tell you that Dr. Massimo Cristofanilli will be heading up this new facility.

Yes, Dr. C is moving to the East Coast, but the Morgan Welch IBC clinic in Houston will be working closely and with the same protocols as those which have become standardized by Dr. C and his team over the last three years.

Also, In addition to his position in the department of medical oncology, Dr. Cristofanilli will be the co-director  of the Women’s Cancer Program,  He will also serve as associate director of clinical research for Fox Chase’s Cancer Center Support Grant from the National Cancer Institute.

From the Fox Chase website :   http://www.fccc.edu/news/2009/2009-11-02-cristofanilli.html

Fox Chase Cancer Center Appoints Massimo Cristofanilli, MD, FACP, Chairman of the Department of Medical Oncology (11-02-2009)
PHILADELPHIA (November 2, 2009) – Noted breast cancer clinician and researcher Massimo Cristofanilli, MD, FACP, has been appointed chairman of the department of medical oncology at Fox Chase Cancer Center and will hold the G. Morris Dorrance Jr. Endowed Chair in medical oncology. He will arrive at Fox Chase in January 2010.

Dr. Cristofanilli is very excited about this amazing opportunity and additional facility for women across the United States.

Please read the website from Fox Chase which will give you more details about this event and also more about our friend and Doctor, Massimo Cristofanilli.

Patti


I’m home (by Lyn)

October 12, 2009

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.


My PET/MRI Results

September 23, 2009

I had to wait until my appointment last Friday to get the results of my MRI and PET. I thought for sure Dr. Webster had bad news because she didn’t call and wanted to wait until she saw me to tell me, I was pretty much freaking out. But it turns out I have great news to share.

My PET showed no cancer anywhere in my body, including my lymph nodes and possibly not even in my breast. It picks up inflammation, so it’s hard to tell from a PET about the breast itself, but I am free and clear of cancer everywhere else.

My breast MRI showed no tumors in my breast and the report read ‘lymph nodes all appear normal’.  No cancer in lymph nodes! (appears at least) The tumors that were there before have dispursed (they were just clumps of IBC anyway not really solid tumors) and everything it did pick up said ‘possible whatever the word is for dead cancer’ meaning it didn’t pick up any definite live cancer in my breast, and what it did pick up could just be dead cancer or thick areas. She hadn’t seen the report when I arrived, and we read it for the first time together. That was nerve racking let me tell you. But reading for myself that the tumors are gone was huge as I had 3 when I was diagnosed with a possible lymph node that was enlarged.  Dr. Webster’s words were actually ‘it is the best possible news we could have gotten’.  So surgery is on for next Friday, Oct. 2nd. I can’t believe I’m actually typing that I’m having surgery next week, but I hear it’s true.

I wasn’t sure how to post my news because as happy as I was, I also felt guilty because of all the wonderful women I have met so far who didn’t get such great MRI news. I wasn’t even going to post it as I did, but then the last few days changed my mind because it IS GREAT news! Not just for me personally, but it means that the treatment itself is working, is doing it’s job. On a not personal basis, that’s wonderful news for IBC treatments in general.  I am responding to the chemotherapy and the last 6 months of chemo have been worth it. I have my LAST CHEMO tomorrow! Can you believe it??? My last chemo is tomorrow, I honestly can’t believe it. Cycle 12 of Taxol and my FIRST 3 week dose of Herceptin. I begin taking Herceptin only every 3 weeks tomorrow for an entire year, it will be given through my port. It isn’t chemo so the side effects are much milder I hear, and I shouldn’t have too hard of a time on it. I even get it through radiation which I will get every day for 6 weeks starting about 3 weeks after surgery.

crossposted on http://lynkelley.wordpress.com


Halfway done

September 5, 2009

I was standing in the check-out line at a clothing store this morning buying a new shirt and it hit me that this could possibly be the last time I get to shop for this body as I know it, in this size and shape.  My surgery of radical mastectomy/bi-lateral mastectomy/hysterectomy has been scheduled for October 2nd, 2009 which is less than a month away and I think I am just beginning to realize what this means.  Since my diagnosis in April ’09 I have been consumed with staying positive in the midst of all the IBC negativity, having chemotherapy and a mirage of new drugs along with it, trying to be a normal mom to my 2 year old and now 4 year old and a decently normal wife to my husband.  I thought I was doing a good job of it all, including truly facing what I’m dealing with, except I don’t think I really knew what the surgery meant.  I think most women on this site have had a mastectomy, so I know it is fairly common and that’s what I focused on.  But the new reality of not having my breasts anymore is surreal and terrifying.   My body is going to change.  I don’t know that I am mentally or emotionally prepared for that change yet.  I admit it.  I know that I need to focus on the purpose of the surgery- to make me cancer free- and I will do that but I can’t help but be saddened at the forced changes.  I do take comfort in knowing I will have reconstruction at some point, for IBCers it isn’t right away usually and I am expecting it to be about a year out from what my doctors tell me.  I have read most of the stories on here about ‘foobs’ and the different choices everyone has made with fascination, but I realize also with distance.  I didn’t relate to it so it was easy to read.  I am blessed to have ‘met’ amazingly strong women on this site and in person who have done it before me, and it’s your stories that give me strength to at least try not to focus on my fears and instead think about the future.  I want other newbies to know that it’s OK to acknowledge our fears-and this surgery is just as scary as IBC istelf to me- but we have to try not to let them take over.  I keep picturing this time next year when reconstruction is done, when I will hopefully be finished with Herceptin every 3 weeks, and my son will be starting kindergarten.  My daughter will be 3 and a half and it will be just us at home for the first time- now that’s exciting stuff I want to be around for, and thinking of these things makes the surgery worth it.  I have 3 more chemos to go, I was supposed to have it this week but the kids got me sick and I was unable to.  Then I consider myself halfway done with treatment, which sounds pretty awesome when taking it one day at a time. 

(ps I don’t know if this post makes any sense, my brain is so weird from the new drug doc put me on last week to help with the hysterectomy hormone issues but I tried:)


Be Proactive

August 27, 2009

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


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