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.

Cancer Whiplash

So sorry for the silence the last three months. In one sense it feels just like yesterday and in the next it feels like a life time since I posted last. First, and foremost, I would like to share that in the words of my oncologist, "Everything appears clear". I hung on every word during that appointment in October. I was so relieved to hear those words but I must admit they didn't release the fear and anxiety. After I completed radiation, my dry, annoying cough "re-appeared" and to be quite honest it scared the crap out of me. This is how it all began. July 2010. A cough. And you know the rest of the story. Turning over my anxieties and fears have been hard. It's hard for me not to fear the worst with every little cough. I realized that although I had come to the end of my treatment, I was paralyzed. I didn't know what to do with myself, my time. I was so used to having a plan. A plan that included my active participation in appointments, labs, scans. It was best described to me as cancer whiplash. From the time of diagnosis through treatment you're in fight or flight mode. Going from one step to the next. Then it's over. And you wait. And you wait. And you learn to live again. I had pushed my emotions aside when I was in fight or flight mode and when the day to day stuff ended it came over me like a tidal wave. It's hard to share all of this but I am in the hopes that it will help someone else. I realized that I was emotionally and mentally slipping. I was supposed to be happy. To celebrate. Live like I don't have cancer. And I wanted to so bad but I didn't and it scared me. The past few months I have sought support in helping me deal with the emotions that come at the end of cancer treatment. In addition to my oncologist I am also under the care of a naturopath who specializes in cancer treatment and could quite honestly hold a masters in psychology. The first time I met with her I was a blubbering idiot. I couldn't sort my thoughts. I didn't know what was wrong, I just knew something was off. I wasn't sure what was going on. Was I losing my mind? Did the temporary menopause throw me out of whack? Was I crazy? She listened and we came up with a plan. I am reading some books, altering my diet, trying some remedies to bring me back to balance (after checking my labs we discovered my cortisol levels were totally out of whack, my fight or flight was depleted). At her urging I also went to the Arizona Wellness Community and have joined a support group with other cancer fighters/survivors. It's a great mix of ages, types/stages of cancers and personalities that help bring great perspective and balance to my personal healing process. I spend two hours every Tuesday with my new friends. We talk, we laugh, we cry. We have a facilitator who is a licensed psychologist who helps guide the conversation when needed but with the ecclectic group we have we rarely need that! We come to talk and that's just what we do. I feel normal with the group. I have learned that my thoughts are normal and I'm learning how to process them in a healthy way. It's working but I'm not quite there yet. I keep waiting for life to go back to how it was before the big c word but I am learning to accept that that will never be. I have a new reality. What does that mean? How will I cope with life now? Ah, the joys of life as a cancer fighter. Each day is better but there are definitely bumps in the road. Most recently, after several prescriptions for steroids, inhalers, cough suppressants I ended up in the ER on Sunday morning after talking with my oncologist (who happened to be the doc on call). He wanted another chest x-ray and ct scan as I felt like I was unable to get a full breath and my coughing attacks were getting more intense. Everything was as expected - my lungs have scar tissue that has built up because of one of the chemo drugs I was on and the radiation I received - and there was no acute concerns. Good news. Frustrating news. I am over having a cough. I followed up with my oncologist yesterday and my pulmonologist and naturopath today. I am so glad they're all on the same page, that is hard to find when mixing specialties and styles but I am blessed by what I would consider an all-star group! We're going back to the basics. I need to have patience and give my body time to heal. I have scar tissue. It may or may not be causing the increased cough. I'm off of all steroids and inhalers. We're going to try keeping it simple for awhile and I'm so glad. Phew, well, that was a quick synopsis of where I've been. Over the next few weeks I'll dive in to some specifics of the past few months. I have much to be thankful for! As it stands now I am cleared to have surgery to have my port removed and I anticipate that happening before the end of the year. That's a sure sign things are going well! Thank you to all of you who have continued to pray for me and check in and I apologize to those of you that I've taken my sweet time getting back to. I have been in a bit of a funk but I'm shaking it off! :)

Back in the saddle again...

Or should I say back on the cold metal table again? Either way, my throat feels back to 100% after taking last week off. I started radiation again on Monday and so far, so good, although the doctor warned me today that my throat may get sore one last time before we're done. As of now I only have 3 more treatments and I'll be good to go! I am so excited. Today I had the tech take pictures so all of you (my loyal friends and family!) can see in pictures what I have tried to describe in words.

This first picture gives a pretty broad perspective of the room. My feet are in a large rubberband to help prevent me from moving and I am in a hospital gown because I am undressed from the waist up. A light comes out of the piece of machinery above me that they use to line up with my tattoos. Yes, I am the proud owner of two new tattoos. They are small and located in the middle of my chest.

Once I am lined up the tech leaves the room and a bunch of clicking and zapping occurs. The machinery rotates around the table a couple of times as the treatment is given.

As I've described with such endearing and affectionate terms before...here is an upclose and personal shot of The Mask. Although it may look soft and pliable it is in fact solid plastic. Once I am lined up and in place, they use the bindings on the sides of my head to lock me into place. This is me in my "happy place" or atleast that's what I tell myself.


So, as I said before, only 3 more times of this lovely gig and I'm done. The Mask will be mine when I am finished and I'm debating whether I should keep it or crush it to pieces! :)

Radiation

I began to experience slight discomfort in my throat at the end of last week but knew it was something I could manage. As I went into the weekend the discomfort began to increase when I tried to swallow and by Sunday afternoon I had reached my limit. The liquid Vicodin I was taking didn't touch the pain so Monday morning I called the doctors office. In the back of my mind I knew what the suggestion would be but I tried to convince myself that there may be other possibilities. Painful swallowing? Yes. Blood in sputum? Yes. Choking on spit? Yes. These answers guided me to postponing this weeks treatments and I had a meltdown. I want to be done with all of this. Cross the finish line and never look back. I was given a prescription for Percocet and sent home to crush the pills and do my best to manage the pain. This was not in my plans, it postpones my finish line. After crying harder than I've cried since this journey began, I felt better. The irrational thoughts I was thinking began to fade and I knew I'd be okay. Just another little bump in the road that I can and will handle. The medication has taken the edge off and I'm anticipating being able to go back in for radiation treatments next week. In the meantime, I am focusing on accepting the fact that I don't write all of the rules and control all of the plans. On Sunday in church the pastor said something that has stuck with me, "The difference between hope and despair is faith.". I continue to have faith that I'm right where I'm supposed to be.