Being Part of the Answer

In the immediate days following Jereme's diagnosis I was talking to Gabi (you know, my angel of a roommate who helped me through my treatment) and she said something that I hated.  And I loved.  All at once.  She said, "I guess if you ever wondered why you got cancer, now you know your answer.".  I hated that statement because I didn't want the answer to be that my little brother would get cancer.  And I loved it because I would want nothing more than to help my brother through this journey.  To provide him answers to questions he may be too embarrassed to ask or help alleviate the uncertainties of what this test or that term meant.  "What do you think?", "How did that go with you?".  Ask away, brother, ask away.

People around me asked questions too.  And I was asking my own.  I've searched the same damn terms in Yahoo and Google an embarrassing, obsessive-compulsive number of times..."siblings with Hodgkin's", "siblings with lymphoma", "lymphoma research", "brother sister cancer", "*#$%^&"...

To no avail.  Sure, I've found a few studies but nothing that draws the line in the sand.  And I want answers.  I've come to the conclusion that right now, at this point in time, there is no answer.  So, I want to be part of the answer.  How can I help the next brother or sister deal with their diagnosis?  How can I help bring peace to the next family?  What do I have in me physically, emotionally, mentally, spiritually that can help the next person?  I want to give that.  

And so tonight I fired off an email to a doctor and researcher at Dana-Farber Cancer Institute in Boston, Massachusetts.  Here is the email:


Dear Dr. Brown,

My name is Jennifer Morris.  I am 34 years old and reside in Gilbert, Arizona.  I was diagnosed with stage 2A Hodgkin's lymphoma March 1, 2011.  After 4 rounds of ABVD and 17 radiation treatments I received my first clean scan February 3, 2012.  My younger brother, Jereme, was recently diagnosed with stage 3B Hodgkin's.  He is 31 years old and lives in San Diego, California.  Today marked the completion of his first out of an anticipated six rounds of ABVD. 


I have asked myself multiple times - how?  Why?  And as I have scoured the internet in hopes of finding the answer, your name has appeared in more than one place as a leading researcher on the possible familial link of Hodgkin's.  I am interested in helping find an answer.  I don't want to speak for Jereme but I'm sure at some point (maybe not while going through treatment) he would be willing to further the research as well.  How can we help the next family minimize or even prevent their chances of this diagnosis?


Please contact me at your earliest convenience and let me know how I (we) can help.
Thank you for your valiant effort in finding an answer.

I realize that the answer may not come tomorrow or next year or even in my lifetime but I want to help.  I want to help the people I know and the people I don't.  My friends.  My family.  My co-workers.  My neighbors.  My future nieces and nephews.  I want to be part of the answer.

Jereme

I apologize for saying I was putting up a post and then didn't.  Blogger was down and I was unable to post until now.

To open this blog, I'm going to copy and paste from an email that I sent to this years team of Light the Night walkers. It will lay the foundation for the rest of this post and ones in the future...

"Now, for the hard part. As I've said countless times before, I am grateful for each and everyone of you and having your support at such a meaningful event means a lot to me. It's been an interesting 2+ years and I don't know how my family and I would have done it without your love, support and prayers. There's no easy way to relay this information so I will just write it the best I can...I am asking for you to continue to pray for me and my family and specifically my younger brother, Jereme. It seems as I am transitioning into my "new normal" with clean scans and bloodwork, he is beginning his own journey into the world of what appears to be lymphoma. I'll spare you all of the details but he has been symptomatic for some time and the last few weeks have brought a flurry of overwhelming reports and appointments. He met with an oncologist who specializes in leukemia and lymphoma this week who told him he is 99% sure it is lymphoma. Jereme has a biopsy tomorrow and meets with the oncologist again on October 30th. At that time the results of the biopsy will be discussed as well as the next steps. I will be in San Diego with him for that appointment. I know this is shocking information and I apologize for having to relay it via email but that seems to be the most manageable way. I wanted to give all of you a heads up before Saturday as all of this is still fresh news for my family and emotions may be running high. Jereme is definitely not one for attention but I did get his blessing on sharing this information with all of you. If you know my brother, you know that he is a fierce competitor and has a great sense of humor, both of which will come in handy in the coming months.

To answer a few questions that have come up when sharing this information: No, Jereme will not be at this years walk. He was not planning on being at this years walk long before all of this came to light and that is probably best at this point. Regarding the cause or possible link with my diagnosis...we don't know and may never. Here is the best explanation I have found, "The genetic links to lymphoma are complicated and uncertain. Direct inheritance does not seem to be a factor. Even in the rare cases in which lymphoma occurs in family clusters it is not clear whether genetics or environmental exposure–or a combination of the two–is the determining factor.""

I spent time in San Diego last week and had the opportunity to meet Jereme's oncologist and accompany him to a couple of tests. I was happy to be there for him, not happy about what it was for. It's a bit surreal hearing the terminology again but from the perspective of a family member rather than patient. Jereme has since finished all of the tests and scans and received the news today that he is staged at 3B. The cancer is above and below his diaphragm and he is symptomatic. He also had his first chemo treatment today. He is receiving the same combination of drugs that I did but it sounds like his doctor is anticipating 6 rounds instead of 4 like I had (I was staged at 2A). I will be over in San Diego again this weekend as I am walking in a half marathon on Sunday. I am hoping to spend some time with Jereme if he's feeling up to it. I am asking for prayers and positive thoughts on his behalf. That he takes care of himself the best he can and is mentally and emotionally coping with things in a healthy way and his body responds in an efficient and effective way to the chemo.

I am still in a little bit of "twilight zone" mode as this seems so surreal at times. I hope to update/vent again soon :) Thank you for your continued support of my family, we are forever grateful.

Driving Into the Sunrise

Windows down.  Open road.  Loud music.  Silence.  Wandering.  Aimless.

This is when I know I need to talk.  This is when I avoid people.  I blast the music.  I sit in silence.  I drive.

Sense of control?  Need for distraction?  Spinning.  My thoughts,  my emotions,  my worries.

Nights of restless sleep.  Days filled with chatter.  

There is something about the sunrise.  A clean slate.  Renewed optimism.  The chance to start fresh.  Each day, the opportunity to make things right, do good and put faith into action.

I drove into the sunrise the other morning.  Tears.  Peace.  Hope.

Trials and Triumphs

“That which causes us trials shall yield us triumph: and that which make our hearts ache shall fill us with gladness...We must pass through the darkness, to reach the light.” - Albert Pike

I don't know when I'll be free of the darkness that cancer has brought into my life but I'm working really hard to lessen it's appearance. I guess I never really appreciated the emotional and psychological toll a diagnosis can take on a person until the label was tossed on my lap. Even then it wasn't until after treatment that the burden, guilt, anxiety, fear, sadness and confusion set in. It was best described to me as "cancer whiplash" (see previous post) and that's exactly how it feels. You get slammed with the diagnosis, work through treatment then seize up when it's over.

Up until last month I participated in a weekly support group at Arizona Wellness Community. For the better part of the last year it was the same close-knit group of people and I looked forward to spending Tuesday nights with them. We celebrated milestones and good reports, we wept over each others setbacks and heartaches. The group taught me to open up and share my emotions, whether I thought they were "right" or "wrong". Two of my closest friends stopped attending group a couple months ago. One had received consecutive clean scans and felt like she was ready to move on...triumph! The other experienced a decline in health and was too weak to attend...trial. I felt the joy of the triumph and the sorrow of the trial. I "graduated" myself from the group last month as I felt ready to move on. I didn't want to be surrounded by cancer talk anymore. Yet had it not been for cancer I would not have had the opportunity to form such strong bonds with this special group of people and for that I am grateful.

The most intense class I have participated in since my diagnosis was a 12 week Grief Recovery class. Talk about powerful. I participated in the class based on a recommendation from a friend in my Tuesday night group. When I originally signed up I went to the first class and found that I was the youngest one in the group by a good 20 years. It just didn't feel right. Sitting there crying about cancer when their loved one was dead. Because of cancer. I started at a new location and felt much more comfortable with the group. I was actually older than a couple of participants and cancer had a part in only one death. I was still the only one there for anything besides a death but I felt okay about that. The class was for anyone who had experienced loss...whether it be death, divorce, job, health, etc. We had weekly readings and assignments and discussions based on both. The readings and assignments stirred up all sorts of emotions and the discussions were deeper and more intense because of it. There's a sense of security in being comfortable enough to share but detached enough to not feel scared about judgement. The assignments forced me to share. Things I didn't even know I was holding onto. My negative thoughts lost their power when I said them out loud. I shared more with that group of people than I ever have. Triumph. The most important lesson may have come the last week for me...I froze up on week 12. I didn't go. The final assignment involved reading aloud a letter I had written to myself. I knew I needed to do it but I knew how hard it would be. And I backed out. Trial. I still intend on reading that letter aloud. I don't know when but I know I will experience great healing from it.

As each new day arrives I try to be grateful for where I am. I am healing. Physically and emotionally. I have learned so much about myself and other people. Things I know I would have missed out on had I not experienced this heartache. I will get to the gladness. I will experience more trials and more triumphs. I will get through the darkness and be in the light.