Thursday, March 9, 2017

I'll remember you.

I guess this is goodbye? Goodbye to the cancer, the menace, that could have taken my life at age 39. Maybe goodbye forever, or just so long until we meet again. I have hit another milestone. Living 5 years post last treatment for my advanced metastatic melanoma. Actually, I passed that date some time ago. My treatment ended on or about Super Bowl Sunday 2012. Just after the day the immunotherapy medication I was taking started irritating my heart to the point that I developed Supra ventricular tachycardia with rapid ventricular response. My heart was beating at 240 bpm,  which is the heart's theoretical maximum. This predicament certainly excited all involved. Luckily, running through the list of treatments for SVT with RVR, we found that the last and slowest method worked. To injections of adenosine had no effect, 2 electrocardioversions did not alter my rhythm, good old amiodorone did the trick (slowly). That was how my HDIL-2 treatment ended.
I truly believe that the amount of IL-2 that I was able to take, the sicker I got, the more extra cellular weight I gained, the more I hallucinated, the more my skin became red, irritated and even peeling off, the lower my BP got, the lower my MAP got, had a significant impact on the success of my treatment. I also feel that, the fact that my thyroid gland was damaged as a function of my treatment is indicative of the fact that my body, my immune system was activated and killing cancer cells and got a little overactive and went after my thyroid. From what I have read, this often happens, and tends to happen to those patients that have a complete response to HDIL-2 (like me).

Anyway, I digress. My last imaging and exam at SCCA were in January. At that time we did neck/chest/abdomen/pelvis CT and brain MRI. We met with my oncologist, Dr. Tykodi, who explained that all imaging was unremarkable. At this point, he informed me that patients at this point in their follow up are given a couple of  options: 1. to not come back for evaluation unless a concern arises, or 2. Come back to SCCA one time per year for abdominal ultrasound and brain MRI.
We chose to continue our follow up care with SCCA with testing and imaging on an annual schedule.

I am so profoundly thankful for my life today. It's not always perfect. Some moments get pretty close. Some things havn't gone like I had planned. I'm sure I will have more surprises in the future. Some will be more enjoyable than others.

Again. I'm off track. I'm lucky. A real hard, scary, painful portion of my life is over. There were definitely a great many happy and  truly fantastic moments shared with my family and friends during those scary times. That's when I felt like the most fortunate person in the world, even though I may have been dying. Grief sometimes makes gratitude grow. It did for me.

Today, my life is great! Filled with normal things; a husband.(that I love dearly), a family (also loved dearly), friends ( loved dearly), I still have the same dog Lola (love, love, love her). I will always remember being so heartbroken to think she would outlive me. However, I do wish she could live to be 50 or so, comfortably of course. She was my silent companion during my bad times. Of course, Kelly was my companion too, but he also had to work to care for me. I have a job. Activities that I enjoy and we love to travel. We try to go somewhere new every year. Something we wanted to do later in life but having cancer made us reevaluate and decide not to wait. Do the things that you want to do when you want to them and are able to do them. If you wait, time may run out.

We live planning for the future but knowing that our focus cannot only be aimed forward. What we do now, today is as important if not more than what we plan to do later in our lives. Tomorrow, next week, next year, is not guaranteed to us. I have to remind myself often, even after my experience, live today like you won't have another. That can mean anything, take a vacation, spend time with your loved ones, go to work and have purpose, spend time by yourself, get outside. Just do something, and keep in mind, we survive to thrive not to merely get by.

I still think of my cancer daily. It will always be a part of me. It has affected me mentally and physically. I don't think it will ever disappear, but it will occupy less and less space in my mind as the years continue to pass without interference from cancer.

I have hope!!

Tuesday, September 27, 2016

This is the day!

Hey!! Guess what?  I'm still here!

It's been another year. Life goes on as if cancer has never touched me, but it has. It has touched me with it's heavy hand that leaves it's indelible mark. Some marks are deep and ugly, some are invisible and painful. Cancer has taken parts of me, what's missing may not be noticeable to others, but I know what I've lost.

Cancer leaves a mark on everyone that it comes close to. Those whose family members and/or friends have been hurt by it, maybe their lives taken by it. Cancer touches those who spend their lives treating those afflicted with it. Cancer touches those whose lives are dedicated to researching it and searching for ways to prevent and treat it.

When I was diagnosed 5 years ago, I had a 15-20% chance of surviving to this day. That's not great. Not at all. The treatment plan seemed to be, "we'll try this until...". I can vividly remember feeling so distraught that I would die before Lola, who was at the time 7 years old. I remember when Dr. Mora informed us that I had Stage 4 melanoma, based on the pathology reports from my ovary that he had surgically removed. That was September 27, 2011.  It seemed he was holding back tears. I assume, because he thought I would die from this disease. Dr. Mora has since told me, that he did not think I would live. Certainly not past 5 years.

If I were diagnosed today, my survival rate would be higher (not terribly, but higher). That's because of the countless hours of research that have been done to develop new treatments and medications to treat advanced melanoma.

In 1975, Dacarbazine was the only agent approved by the FDA to treat metastatic melanoma. 15.3% of patients treated with Dacarbazine experienced partial (11.2%) or complete (4.2%) responses. Both the partial and complete responses were seldom durable, and fewer than 2% of patients treated with Dacrbazine were alive at 6 years. High dose Interleukin 2 was FDA approved for metastatic melanoma 23 years later, in 1998. This was the treatment that I had. It had a little better outcome rate. The overall response rate was 16% (CR 6%, PR 11%). 60% of the complete responders had durable responses (meaning they were still alive at 5 years). I fall into that group. In March of 2011, Ipilimamaub was approved by the FDA to treat metastatic melanoma. That's 13 years between the approval of 2 drugs. Can you imagine the frustration and dedication of the researchers involved. The heartache of patients, families and all of those involved in treatment of these patients. Since 2011, the FDA has approved 7 new treatments for advanced melanoma. All of these treatments are immunotherapies, which means they trigger the patient's own immune system to fight the malignancy.  This is in part because  melanoma is the most "immunogenic" of all cancers. That means, it is the most likely to produce an immune response. In 2013, the magazine Science named immunotherapy as the "Breakthrough of the year". This is a journal that covers everything from one atom to the entire universe and they considered immunotherapy to be the most exciting thing happening in all of scientific research, advancement and discovery.

I go to a melanoma symposium every year that is held at the Fred Hutchison Cancer Research Center, organized by the Melanoma Research Foundation. Every year I go and listen to the speakers discuss new treatments, new advances, new understanding of the disease. I listen to patient stories. I leave feeling amazed. Amazed that there are such truly advanced medical and research centers that I am a part of. Thankful that I have and continue to benefit from their excellence. Amazed that these brilliant doctors and researchers are so dedicated to research and treatment of melanoma. Amazed, and so grateful,  that I was fortunate to receive and continue to be followed by the physicians at this excellent facility. Amazed at the strength and grace exhibited by the patients who share their stories. Finally, with regard to my personal experience with cancer, I feel inspired, empowered, grateful, powerful, humbled and strangely proud of what I have endured.

I guess it seems odd, but I do feel proud because of what I have experienced. I feel powerful because of what I have experienced. I feel empowered because of what I have experienced. There is no guarantee any treatment will work. Who knows why IL 2 worked for me? But it did. And going through IL 2 treatment was hard. It was really, really hard. Harder than anything I have ever done and harder than anything I can imagine doing. I did it and gained 50 pounds each time. I did it and pulled out my own PICC line. I did it and my skin peeled off. I did it and developed SVT that required electrocardioversion. But I did it! I did it with a lot of help. I did it with a lot of complications. And I could do it again if I had to.

I don't think about cancer, my cancer, as much as I used to. But I still think about it everyday. I guess that says something about it's occupation of my brain. I used to feel an absolute certainty that when I  died, it would be due to melanoma. Now, I'm not sure. Maybe? But not yet.


Sunday, September 27, 2015

4 years....and counting

Four years ago today, I was diagnosed with stage 4 metastatic melanoma. It felt like a death sentence, like a punch in the stomach, like the world had stopped spinning.

It has been more than a year since my last post. I have been wanting to write but just haven't had the words. Here is my attempt to bring you up to date.

Since that day, 4 years ago, not surprisingly, my life has changed and so have I. I have experienced some of the greatest moments and darkest hours of my life. I have travelled to far away places I never thought I would see. I have realized how very essential my family and friends are. I have recognized how much I did and still do take for granted. I know that life can go from beautiful to terrible without warning, I have learned that I should not be afraid of dying but instead be terrified of wasting this life that I have.

I have been NED, showing no evidence of disease, since March, 2012. I continue to be followed closely by my oncologist. We started with imaging at 3 month intervals for about a year, then 4 months for a year, then 6 months. My imaging had been unremarkable until February 2015 when my PET/CT showed some irregularity. After consulting with my oncologist we decided that another PET/CT in 3 months was appropriate. That PET/CT showed some irregularity in my brain so a brain MRI was ordered to evaluate more thoroughly. That brain MRI (5/15) demonstrated a lesion that could be benign or metastasis. Due to the continued presence of irregularity, another brain MRI was ordered in 3 months. My 8/15 brain MRI was still showing an enhancing lesion with no definitive diagnosis, which might be benign or metastasis. My oncologist does not seem terribly excited or concerned but has ordered complete imaging, neck/chest/abdomen/pelvis CT and brain MRI again for this December.

I have permanent reminders of my experience with melanoma. The physical scars have faded. I have been damaged but not broken. The emotional wounds have healed significantly but are easily reopened, reinfected. The mind, my mind is delicate and requires more time to mend than does the amazingly resilient body.

I still fluctuate between feeling ecstatic, strong, even unbreakable to feeling battered, weak, wondering where the person I used to be has gone.

Looking back, some of my most difficult and painful times were also the most powerful, remarkable and even beautiful. Those very frightening and physically unpleasant moments were when life seemed most meaningful. Worth suffering through anything to keep. A most precious gift that would be mine if I could just hang on.

I understand that I am one of the lucky ones. Why? I don't know. Maybe I shouldn't have survived. Maybe it's luck, maybe it's grace. It certainly isn't strength, courage or bravery that has kept me alive, though I'm sure it has helped. Strength, bravery and courage are no match to the power of cancer. Too many other people, including my friends and family, have not survived. Cancer doesn't play fair. It does what it wants. It takes who it wants. I am not stronger than those who haven't survived. I am not any braver than they were. I certainly did not fight harder than they did. But I am here, alive and so grateful. Maybe it's not over for me? This might be my NED intermission. My biggest battle may be yet to come.

Worrying serves no purpose. It doesn't change anything it only wastes valuable time. So I try, very hard, not to be troubled about the future, about recurrence. It is challenging, but I'm getting better at it.

As always, I am genuinely thankful and profoundly humbled by the support and love I have and continue to receive from my friends and family. During the best and worst of times, whether we are celebrating or I am in a hospital bed, I know I will not be alone. This has played an essential role in my continued health. I can't imagine how much more difficult this part of my life would be without all of you. Thank you, sincerely.

I am living my story, and it's not over.


Tuesday, August 26, 2014

Time marches on.....

Today, I am NED. I have no (detectable) evidence of disease. I have no cancer that can be detected by today's medical imaging.  I need to let go of the pain, from believing I would, or will, die from cancer. Those of us affected by melanoma know that you never really say goodbye, completely. It is always lurking in your thoughts. 

It was 3 years ago that I was diagnosed with stage IV melanoma. It was the most painful emotional and physical experience of my life. 

Today I took a walk with my dog, in the sun. Even with a hat on and my skin covered up, I felt I was putting myself in harm's way. I see the sun, and sunny days, as the enemy. I think to myself,  what's wrong with me? I am a vampire. I am someone who loves the dark. BUT, I also felt as if I were visiting a long lost friend. 
The sun and I had had a long, and many times, painful laying out in it, feeling the warm rays on my skin. Then after, feeling the sting, chills and pain that would keep me from sleep.  Days and days and years and years of sun. Melanoma changed all that....
I like shady cloud covered days...ones where I feel there are less dangerous UV rays. It feel safe. I am envious, at times, of people who sit out in the sun, enjoying it's warmth, seemingly unaware of its dangers. 

 According to the National Institute of Health "The prognosis for patients with distant metastases is generally poor, with historical 5-year survival rates of less than 10%." Yet, I am here. 

I remember the first nights after my stage IV diagnosis, crying myself to sleep, while Kelly tried to comfort me, this while he was dealing with his own fear and grief. I distinctly remember being terribly distraught that I would not outlive my dog.
I have just recently started believing that I will live to see my 50's and maybe even  retirement, how about 'old age'.

I feel as if I have cheated death, and continue to... for now.        

I know that I could not have arrived at this point without the abundant love and support of all my friends and family... and even strangers.  I am still awestruck by the outpouring of true care and concern I am, and have been, so fortunate to receive. Thank you all so much!

Each day for me is a gift, a celebration, and an opportunity to do something important. Easy to say, difficult to put in to practice. I'm trying, I'll always keep trying....

Thursday, April 24, 2014

Happy and Healthy

I have had no evidence if cancer for over two years. My complete response to Interleukin 2 could be considered curative. Only time can tell. Today, I am healthy and happy!

I continue to be monitored closely. Since my last post, I have had 2 full body PET/CT scans, 2 full body CT scans and a brain MRI. All imaging has shown no evidence of disease.

I did have a very minor hiccup in December. I developed acute appendicitis. What started as a stomach ache developed into a short stay at the hospital. Fortunately, the infection was caught early and my appendix was removed laparoscopically without complication. This happened to be my third  laparoscopic abdominal surgery within 2 years. I am hoping for no surgeries in 2014.

Physically, I feel as healthy, maybe healthier, than I did before I was diagnosed with metastatic melanoma. I try hard not to take for granted everything that my body is capable of doing without limitations. My mind is what, if anything, holds me back. My mind has healed considerably in the last couple of years, although it is still scarred. Cancer is still my constant mental companion.

Today I am simply grateful.


Saturday, March 23, 2013


I am officially past the one year mark.  I am cancer free.  My last CT scan showed no evidence of metastatic disease.

There are a lot of statistics, most of which are pretty scary, they deal in months and years, median survival rates, 5 year survival rates, recurrence rates, etc.  Metastatic melanoma, stage 4 melanoma, is generally considered incurable. There are a number of people (6% according to statistics) treated with IL-2 termed complete responders, for whom the disease appears to be cured.  A complete response is defined as a long-lasting (10+ years and counting) elimination of the disease, although it is not technically a "cure". I am a member of that fortunate 6%.

I do not believe a person can truly grasp the effect that a diagnosis of metastatic disease can have until you have experienced it.  That is obvious I suppose. To believe, and have others believe, that your diagnosis in unsurvivable...but you are still here...for now. It's difficult to reconcile. You prepare for tragedy that doesn't happen, at least not yet.

I read through my previous posts, many of them brought tears.  I have forgotten how hard the IL-2 treatment was, and how strong I had to be to get through it. I had forgotten the feelings of desperation, of pain, of accomplishment, of exhaustion, of hope, of perseverance, and of determination.   I think I was stronger during my treatment than I am now.  Our bodies and our spirits are capable of amazing things, especially when failure simply is not an option.

I don't know if I consider myself a cancer survivor, or a cancer patient? I guess I am both, they cannot be separated. I am a person with a completely new perspective on life, living, illness, loss... everything.

I am here, I'm alive, in one piece, and healthy. Who would believe I have, I had stage 4 cancer? Well, I did, I do, but a beautiful day!

Tuesday, September 18, 2012

What is normal?

My brain MRI shows no evidence of metastasis. Great news!

I am cancer free, no evidence of disease, just like I was a year ago.  Just like I was a year ago?  Back to normal, right?  I said to myself the other day, "I almost feel like myself again." Then I thought, "how can that be?"  I will never be the same as I was a year ago, pre diagnosis.  I am forever changed. I have new physical and mental scars. Some will fade and go away, others will always be visible.  Some may only be noticeable to me.

I have learned I am tougher than I thought I was. I have realized that I have more support from my friends than I could have imagined.  I appreciate that my family is truly amazing.  I know that Kelly will be by my side through anything, and he will carry me when I can't go any further.

My task now is to live my life, at least for the next three months when I have my next PET scan, and not worry about cancer. Never have I been so defined by a single description of myself (cancer patient) and occupied by a single thought (I have cancer) as I have been for the last year.  I guess it is understandable.  I have never engaged in battle with such a powerful force that is threatening to end my life. It is so hard (almost impossible some times) to think that I can stop least for now. I'm afraid to put down my armor, I will be so exposed ...and it's been holding me up for what seems like such a long time. What protects you, when held too long, can become a crutch.

Some days are hard, some days are a little better. Wish me luck❤