Sunday, November 18, 2012

One Step at a Time

I tend to be a private person. I’m good at putting on a smile, going about my day, doing what needs to be done and making the best of the moment. The past four years of my life have been full of ups and downs, love and heartache and laughter and tears. Part of my healing process is reflecting on the past four years and allowing myself to be sad, upset and angry for everything that my family had to endure. A huge part of the healing journey for me is to tell our story. It’s taken me a year to do this because, when I look back, it is so overwhelming and exhausting that I have had to do it in very small doses. The cancer - what it did to Mike, what it did to our family - is very real and so painful. Initially, I thought that I wanted to tell our story to raise awareness of Melanoma and to help others, but I’m not there yet. I hope I will be some day, but I’m not yet. This is for me, for my healing. So this is our story and the reason I’ll forever be a different person than I was four years ago.

Mike was originally diagnosed in December 2008 with Stage III Melanoma. In the three years after that, I witnessed the most remarkable man fight for his life. Throughout those three years, there were surgeries, long hospital stays, numerous visits to the doctor and the emergency room, a trip to the Gerson Clinic in Mexico, and we even managed to have a baby, a baby the doctors said he would never meet. Anything we could do in an effort to save his life, we did. Mike played the hand he was dealt and he did it with a smile. There was never any anger; not even in our most private, raw and honest moments did he ever express any anger towards what was happening to him. I’m not sure I could have been that brave.
Looking back on the past three years, I’m not sure how we managed. Fighting cancer and raising a family at the same time definitely put the strength of our marriage and friendship to the test. There isn’t another person on this earth that I would have rather walked through that fire with. We were always there for each other and together we’d always come up with a plan for how we were going to get through the next stage of our fight. And, well I guess that’s how we did it; one small step at a time. The funny thing is, that’s how I’ve gotten through this past year but I have to say that it’s much harder without my co-pilot.

Mike’s battle with cancer was very much like a roller coaster. One month the doctors were sure he was at the end and then the next Mike was stronger and healthier. By some miracle, and much to everyone’s amazement Mike always seemed pull through and get better. I’m so grateful that he was able to come back from so many scares, but it was exhausting because I didn’t know if I was preparing for him to live or die. 

In my eyes, Mike’s hospital stay in January of 2011 really began his downward spiral. Between January and November there were a few moments of hope but not many. This was the first time his oncologist mentioned the word hospice. I remember thinking that hospice is for people that are dying, oh wait……. It was then that I realized the cancer was moving too fast for us and we were running out of tools in the toolbox. Although we had really been living life to the fullest and appreciating every moment since his diagnosis, it was time to take it to the next level. Of course we talked a bit about him dying but it wasn’t really something that needed to be spoken, we just knew we had to make the most of what was left. Mike had tumors in his lungs, liver, spleen, adrenal glands, stomach and bones, which caused a fractured pelvis. Mike was in an incredible amount of pain. He began taking pain meds in January and, as the cancer spread and the pain worsened, the dosage of pain meds was increased. High doses of pain meds are not intended to be taken over a long period of time. Ten months is a long time. It was bad enough that the cancer was taking my husband but now the pain meds were changing him into a different person for the short amount of time that we had left together on this earth. It wasn’t right away, and don’t get me wrong, we had some amazing moments together between January and November, but by about July Mike had become someone I didn’t even know. Not having any experience with this, it took me awhile to figure out what was happening. I realized that the doctors never warned us about this because they never thought he’d live long enough for the drugs to really affect him. That realization was heart breaking. Mike was no longer the sweet, loving, outgoing person I married. In the 13 years that we had been together, he’d never treated me like this before and it hurt worse than anything I’ve ever felt. I just felt like I woke up one morning and my husband was gone. What most people don’t know is that I lost him months before he actually died. I was grieving his loss before he had physically left this earth. My husband was dying and I couldn’t stand to be around him. I knew it was the narcotics but it was too much to handle. I believe he know he was dying and I can’t imagine how helpless he must have felt. I hate that he had to feel that on top of how the pain meds made him feel. I know he couldn’t control how he was acting and I know he loved me and never meant to treat me badly. It’s hard for me to be so open about such a personal matter, but this has been a huge hurdle for me while dealing with my grief this past year. I know that I did the best I could given the circumstances, and I know that he did too. I have forgiven him and I’m certain he’s forgiven me. I wish his final months could have been different but I can’t change that, and so I’m choosing to forget those months and remember the good ones.

Experiencing Mike’s final days at home is something that I wouldn’t wish on my worst enemy. I watched the cancer slowly kill my husband over ten months and then in just a few days, I watched as it quickly made its final move. There was no twinkle in his eyes and there was no spark in his smile and for those of you that knew him personally, you know that he had the most infectious smile. He couldn’t eat and he was in a tremendous amount of pain. The point at which he came home on hospice care, I remember thinking that I just wished he would die and this would be over. Watching him suffer was more than I could handle. Thursday evening, the night before he died, was pretty rough. He was obviously struggling and uncomfortable. He fought for every single breath. That night I had to tell Ella that her daddy was dying. Friday morning his breathing was much calmer and slower; he seemed at peace. I lay next to him in bed and I held him as he took his last breath. And that is when the state of shock set in - he didn’t pull through this time. Ella and Addison both got to kiss him and say goodbye. I had been pretty calm until the hospice counselor told me she was going to call the funeral home to come and pick up his body. Letting them take his body from our house was one of the hardest things I’ve done. I just lay next to him stroking his scruffy beard fearing that I’d forget what it felt like against my skin.

The first six months after Mike’s death is a blur, I’m pretty sure I was in a state of shock that entire time. I did what I had to do to get through each day but I had yet to process or really spend anytime working on my grief. At about the six-month mark, I realized that I really needed to take an active role in my grief and start working on it if I wanted some healing and closure. I will never be “over” Mike, but I will learn to deal with his loss and the pain that it brings. That brings me to the next six months – I have spent a great deal of time in counseling and support groups, I’ve done acupuncture, mediation and spiritual soul searching. I also learned to take care of myself and do things for me that make me feel good. Here’s what I can say about the grieving process; it’s a journey, there is no road map or list of tasks to check off and it requires self awareness and active participation, and it is hands down the most exhausting, difficult and painful thing I’ve ever encountered. Who knew emotional pain could actually physically hurt. I don’t want to go to bed at night because I know that once I do, I’ll have to wake up in the morning and face another day without Mike. I don’t want to get out of bed in the morning because putting one foot in front of the other takes an incredible amount of strength and courage. But I realize that I have a choice, I can either let the grief defeat me or I can let it turn me into a stronger and better person. Now don’t get me wrong, some days the grief does defeat me but it is a conscious effort on my part to make the choice to come out of this a stronger and better person. Life has knocked me down a few times and it’s shown me things I never wanted to see, but I keep getting back up and putting one foot in front of the other. If it weren’t for Ella and Addison I’m not sure I’d be so strong. They are very open and honest about their grief and they have taught me to be the same way. They are helping me heal.

I met Mike when I was 18; we spent our entire adult lives together. From the time I met him until the day he died, we had never been apart more than two weeks. He was my very best friend; we just worked together - it was meant to be. He was my person, period. I didn’t realize it until he died that so many others were not as lucky as we were. Apparently I was slightly naive and I thought that everyone had as great of a marriage as we did. To experience love like that is amazing and I wouldn’t trade that for anything in the world. It’s the most amazing feeling and even though he is gone, I’ll always have that feeling. Looking at a picture of him is difficult because I can hear his voice, I know exactly what he’s going to say, his facial expressions, his hand motions; it’s so real and I expect him to jump out of the picture. Memories of conversations with him are so real I feel like I can reach out and touch them, but alas, I can’t, and that makes me the throw things and slam doors kind of angry inside. I miss him the most when the girls experience new things. I can imagine how his face would light up seeing them or how we ‘d laugh talking about them as we lie in bed at night. We had the bond of creating these two little people together. I may be partial but we created some amazing little people! I know that Mike is so proud his kids. Those special moments are something I can never have with anyone else. There will always be a special place in my heart for Mike. I know that other people will come into my life and I’ll have love and a place for them but there will always be a special place, a place that no one fits into except Mike. I will never fill that hole nor do I want to.

I feel privileged to have been Mike’s wife. Living with cancer for three years gave us a lot of time to reflect on life and what we meant to each other and believe me we spent a lot of time doing just that. It’s so cliché, but it’s very true that after witnessing something like this, life has a whole new meaning and I’ve learned to cherish every moment and to be grateful for everything I have. I feel like I carry around this dirty little secret about life and I’m a better person because of it, but it came at the cost of Mike’s life and coming to terms with that is hard. The girls and I are learning how to make a different life for us. We talk about Mike everyday and we will always cherish our memories of him, but part of this grief process was the realization that we need to do things differently. For the first six months the house and everything we did was a shrine to Mike, and that was okay for that period of time but as we move forward with our lives, we have learned to cherish the memory of him in a much healthier way, a way that allows us to keep progressing. I know that he is with us. It’s not hard to feel his presence as he holds and guides us through life. I’d prefer him to physically be here but I’m grateful that his spirit is still with us. He was always my hero and always took care of me and I know he always will and in time I hope I’ll learn to cherish the new way in which he is watching out for me.

Throughout this grief process I have learned that I have the most AMAZING family and friends. During Mike’s battle with cancer and after his death I have lost some friends but what I’ve come to realize is that the friends that stuck around are some pretty admirable people. Without all of you, I would be lost. Thank you from the bottom of my heart. Thank you to everyone that read Mike’s blog and cheered him along as he fought his battle. Your words of encouragement meant the world to him. Smelanoma.com will always be here but this will be the last blog post. I hope the story of a true hero will inspire and encourage others.

Wednesday, November 23, 2011

A Celebration of Mike Brockey's Life November 27 @ 3pm

Mr. Michael Alan Brockey, 33, of Adamstown, passed away at home on Nov. 18, 2011 after a very courageous battle against cancer. He was the husband of Amy Brockey, whom he married on April 15, 2005.

Born March 10, 1978 in Front Royal, VA, he was the son of Paul, Jr. and Darlene Brockey of Middletown. He graduated from Gov. Thomas Johnson High School in 1996, and co-founded Entropyzero Consulting in 2005. He loved his kids, camping, riding his motorcycle, and dreaming up ideas for new software products.

In addition to his parents and his loving wife, Mike is survived by his three children, Kaige, Ella, and Addison Brockey; his two brothers, Timothy Paul Brockey & wife Annie, and Anthony Paul Brockey, all of Middletown; his grandparents, Paul, Sr. and Barbara Brockey of Cumberland, MD; his grandmother, Flora Mae Wilson of Wiley Ford, WV; his mother-in-law, Joni King of Frederick; his father-in-law, Terry King of Annapolis; his best friend and business partner Steven Buxton & wife Sarah of Broadlands, VA and many nieces, nephews, cousins, friends, and other relatives.

A celebration of Mike’s life will take place on Sunday, November 27, 2011 at ThorpeWood, 12805-A Mink Farm Road Thurmont, MD 21788- 1402 at 3:00 p.m. In lieu of flowers, contributions may be made to Hospice of Frederick County, P.O. Box 1799, Frederick, MD 21702, or to a charity of one’s choice.
me.

PLEASE USE THE DIRECTIONS ON THE WEBSITE (http://www.thorpewood.org), YOUR NAV SYSTEM AND MAP QUEST WILL NOT GET YOU THERE!!

Monday, August 22, 2011

I am now on Vemurafenib and feeling pretty good

Who knows at this point if this is just another one of those times where I've just had a dip in my health condition and I'm starting to feel better again or if this the new drug providing relief. All I can tell you is that I am feeling much better. There is pain that remains in my leg, but I am happy to say that I am only using the cane about 10% of the time. I am simply starting to feel better.

For those that are not following me on Facebook, I spent last Thursday in Philadelphia receiving my first month's supply of Vemurafenib. They say that this drug works quickly, but after only a day or two, I'm back up and walking on my own again. This drug is fantastic! There are the obvious issues with the drug as we talked about before, but I think at this point we are going to take what we can get.

Anecdotally, this drug causes new pain which is supposedly the process of the tumors breaking down. I can tell you that there is new pain in my body going on right now. Could this be Vemurafenib doing it's thing? I sure hope so ...

Wednesday of last week, Vemurafenib received it's FDA approval. Now they can officially start their clinical trials which are combining both Vemurafenib with Ipilimumab. Thought being that the combination of drugs could provide the knock out punch. Dr Lynn Schuchter, who is the oncologist overseeing my Vemurafenib treatment is one of the main researchers who started this clinical trial. As you can imagine, she was ear to ear with excitement when she found out that I am basically her first clinical patient as I've already taken the combination. Hopefully we can provide her with some great study information prior to her actually starting her new trial.

I'm not quite sure yet what the timeline is for scans and reports etc. I do know I'll be in Philadelphia again next month to get another round of pills. I'll get more information then. This last time, I think I was more anxious just to get my hands on the drugs.

I'm feeling good now. Taking it easy on the work front again, basically working from home. I plan to show my face from time to time, especially as I start to get even better. I'm just trying to take things slow and not get ahead of myself.

Wednesday, July 27, 2011

Preparing for Vemurafenib to Wipe Out my Melanoma and my Pain

I just received my sixth and what should be my final dose of Yervoy. Let me take a step back and tell you what I've been up to. I met with Dr Lynn Schuchter in Philadelphia about two weeks ago which turned out to be very informative. Dr Schuchter works at UPENN and is the study coordinator for Plexxikon's Vemurafenib, or PLX4032 as I used to reference it on this blog. She has been working with Melanoma patients for many years, and is probably one of the leading and most recognized names in Melanoma research in the world.

As it turns out, Dr Schuchter was extremely pleased with my Yervoy pretreatment and has been timing our plan in a way that I was still able to receive this final dose before switching over to Vemurafenib.

Much like how I had been granted access to Yervoy, Vemurafenib is now in a phase 4 open access compassionate use trial setting. This means that I nor my insurance company will be paying for it, but it also means that I have to qualify for this new trial. There are three things that are happening now as prerequisite to my trial admission. I am scheduled to receive a brain MRI this morning and chest CT next week. Also my melanoma block was transferred from Frederick Memorial Hospital to Plexxikon so that they can re-run the BRAF studies to ensure that I am in fact a match for their drug.

One reason that I've been dragging my feet with this drug is that you hear so many times the story of great success and regression followed by a period of relapse and even more aggressive tumor growth. This still scares me. What is different now is that while the relapse might still occur when new "pathways" open up and trigger the cancer to start rapidly multiplying once again -- there are now other drugs in the pipeline that are beginning to target these other pathways. This remission period has been know to be anywhee from 3 to 13 months on average. There are some subjects who have been in complete remission for well over two years and are still going strong.

When you combine the the fact that my tumors have always been of the slow growing type, I've managed to change my entire life style and eating habits, I've now been pretreated with six doses of Yervoy which has trained my body to look for and fight Melanoma -- I actually like my odds moving into this round of drug treatment. The side effects are low, the promise of releif is huge -- it's all about the duration. If I could get another 13 months (or more) of pain free living -- I'm game.

Wednesday, June 29, 2011

Radiation treatment is complete. But what about BRAF?

For those of you who have friended me and have been following me on Facebook, you know that I've been back to see the radiation oncologist and decided to receive another round of treatment. This time I was treated with CyberKnife technology which is a lot more accurate and allows us to hit a more defined area of cancer with even more radiation. I will likely receive more intense side effects than before, but the treatment area is smaller so the long term effect would be minimized.

This morning, I finished my second and final CyberKnife treatment for this round. Now we wait and see what happens. I'll go back and get another CT on August 25 to see the status of the melanoma in my leg.

I also just this morning received a call from Dr Spira, who indicated that I do in fact have the BRAF mutation! The number seems to change based on who you speak with, but considering that only 20 - 30% of melanoma patients have this mutation, I am quite lucky to be one of those.

This news of course opens up new opportunities for me on the treatment front. The recently named Vemurafenib from Plexxikon, formerly known as PLX4032, has been making headlines of late showing amazing durable remissions in treated patients. You may remember my TV interview when Vemurafenib made it's media break through. I'm pretty excited about finally being eligible.

There of course some caveats. Dr Spira believes that I will "get more mileage" from the BRAF drug over my current Ipilimumab treatment. There are rules that prevent one from being on both drugs, so once we find a program to have me enrolled, I will stop receiving Ipilimumab, possibly for good.

So far the closest treatment facility appears to be in Philadelphia. What's nice about this drug is that it is a pill. I will have a vial of pills, and I'll simply take two pills a day. Forever.

For many who have been on the drug there is a window of time where the drug remains active. Because cancer doesn't play by any given rules, it is also well known to stop responding to this treatment where the cancer then comes back, usually more aggressive. Worse yet, if this happens we are at the end of treatment options. That's it. That's all we have.

There are documented cases where patients who have been receiving this drug and have shown continued durable complete responses for well over two years. All we can do is hope that I can be part of that group.