November 10

I know it has been over a month since my last post. I am sorry for the silence. Since my last update, we had our first-month scans to check the progress of the IL-12 treatment. We got mixed results. The good news is that the tumor in my pancreas is gone and the tumor in my liver is still shrinking. The not-so-great news is that the subcutaneous tumors were growing. It’s still early though and the doctors aren’t sure how long the IL-12 takes to work since it is such a new treatment, so we are giving it more time. There was one tumor, however, that was growing at a much faster rate than the others and was located in an area (between my lower bowel and right ovary) where it could begin to cause me pain and/or bowel trouble. Also, because of its size, Drs. Phan and Miller believe it would be a good tumor from which to harvest more TIL cells in case we need to do another treatment. So they decided to remove it. We couldn’t tell from the scans if it were attached to my ovary or was hanging out in the mesentery adjacent to my intestine. If it were attached to my ovary, they would take out both the tumor and the ovary. If it were in the mesentery, they would need to resect a small section of the bowel in addition to the tumor.  Fingers were all crossed for the ovary, because a bowel resection would yield a much longer recovery time. Thankfully, it turns out it was attached to my ovary – it was also the size of a baseball. Drs. Phan and Hong did the surgery, and Dr. Hong told us that they were so happy about the location of the tumor and ease of the surgery that they high-fived over me on the operating table. And I believe they did.  I was in the hospital for a week, and although the surgery was the best we could have hoped for and was done expertly, I was in a lot of pain which is just starting to subside (with the help of a steady course of morphine). I have about a 10-inch incision down my abdomen, starting just above my belly button. Dr. Phan told Jeff that Dr. Hong did the stitches and spent a good amount of extra time making sure they would be pretty for me. And I believe he did. They immediately sent the tumor to the lab, and preliminary reports indicate that the white cells are very active and that it will yield a good TIL harvest. So all in all, we are very happy with the procedure and the outcome, and I was very thankful to have Drs. Phan and Hong as my surgeons because both have been with me from the start and I know they are invested in my cure (as are all of the doctors, but there is a comfort in having been in their care for so long).

Because the results of the IL-12 treatment so far are mixed, we need to think about what our next course of action will be if future scans show the tumors are still growing (but on a side note, we know that one of them is shrinking, because at my clinic visit we could all feel it from the outside of my skin and they were planning to remove it during the surgery, but when they tried to find it before the surgery they could not, so I had a CT scans that showed the tumor has shrunk by 50 percent). We have numerous options, which is great but also confusing. We have options within NCI for which I am still eligible, as well as options outside of NCI – both approved and in clinical trial form. After we had the scan and received the results, and of course consulted my NCI doctors, we enlisted the help of others including my medical oncologist, Dr. Thambi, our good friend and former UPenn melanoma specialist, Dr. Guerry, and a specialist at Mass General in Boston, Dr. Flaherty. Trying to decide what to do next isn’t easy. It is very stressful, because the key is to do everything in the right order, ensuring that side effects from one treatment don’t cause me to be ineligible for another treatment. For example, there is an approved drug called ipilimumab (marketed as Yervoy) that I could chose to try next. Like, IL-2, it is an infusion meant to stimulate the body’s immune system to attack the cancer (however, it is given on an out-patient basis and the overall side effects are nowhere near as horrible). My understanding is that it has about a 5 to 6 percent cure rate, similar to IL-2. The problem is that it carries about a 10 percent chance of causing a side effect that would force me to take steroids for the rest of my life. Long-term steroid use would exclude me from any further treatment at NCI. The other approved treatment we are considering is a BRAF inhibitor. Some people’s tumors exhibit a mutation called BRAF (mine do). A BRAF inhibitor is a pill that inhibits the BRAF mutation in tumor cells, which can cause them to die (that is a very basic description, but is my best simplistic understanding). It has shown great response in trials and has been recently approved by the FDA. The drawback is that clinical trials have shown it to slow or stop cancer progression for an average of 6 months. Obviously this is not what I’m looking for overall – I am looking for 50 years. But it is a good option to consider. In addition to taking the approved ipilimumab and BRAF inhibitor, there are also numerous clinical trials testing these drugs with other things to see if they are more effective. So with all of these options to consider, and so much on the line with the results (my life), it is a very difficult decision. 

It is right and it is good for us to gather all of this information now and make sure we are always armed with at least an outline of a plan for next steps, but I am not yet willing to give up on the IL-12. It was a very complex and targeted treatment and I really believe that it just needs some time to work.  The harmful tumors (in my pancreas and liver) are gone and shrinking. The subcutaneous tumors, other than being indicative that the melanoma is still active, are not harmful to me physically. And with the largest tumor gone now from the surgery, I am not in physical danger from the others. This treatment (the IL-12) is a new treatment. They are still realizing results in other patients. They have seen great success that has taken more time than expected. I believe that is the case with me. Now that the big tumor is gone, the cells can focus on the smaller tumors and continue to attack and destroy. So I’m not giving up yet, these fighter cells are still working hard for me, I know they are. My next scans are November 30^th, so we will know more then.

So those are the facts – so far the results of the IL-12 are mixed, we are educating ourselves about next steps just in case, and I just came home from a major surgery to remove a tumor and my ovary.  But those are not the reasons for my blog silence. The truth is that I have not felt like being inspired. I have not felt like being thankful. The IL-12 treatment was difficult from which to recover. It made me very weak and I would say I was only about 80 percent better when I went in for surgery, which has pushed me down much further.  I am tired, I don’t feel well, I am frustrated, and I am trapped. After the IL-2, I was afraid to leave my cancer bubble of comfort. I was afraid to go back to work and rejoin normal life because I didn’t want to break the solace and luxury of being allowed to deal with the cancer as a single life event, with full force and dedication. But now, this bubble has changed from a fluffy warm blanket to a cold steel cage.  I am trapped inside of this cancer, just as it is trapped inside of me. It has become impossible to keep a steady course of positivity when my physical being is beat down, allowed to crawl back up, and then beat down again. Every time I think I am ready to start doing “normal” things, like signing up for a weekly music class with Kai, or committing to plans further than 2 weeks in the future, the cancer rises up again and reminds me that I am not in control of my life anymore.  I want out of this cage. And I am too tired to fight. I am usually someone who plows through life, accomplishing tasks and getting things done. I don’t require a lot of down time and I hardly ever ask for help. And all of that is gone. I can’t even take care of my child by myself. Right now, I can’t even lift him up or carry him around. I am physically worthless and I have become a burden.  I am all but confined to my house (and the Clinical Center) and I am isolated from society. What started as a devastating, but somewhat exciting, dramatic life occurrence that we were going to deal with, overcome, and be all the better for it for the rest of our lives, has become my daily existence.  I have not felt well in over a year. I have not lost hope that we will win in the end, it is just that I am exhausted from the fight. But I realize that I am still in control. I realize that I have the power to take a rest, and come back swinging with full force. So here I am, I am finding my voice once again and I am screaming with an anger that may explode my tumors on its own. Get out of my life! I am stronger than you! You can hurt me temporarily, but I will always come back! Killing you is my single mission and I am not in the business of failing – ever.  I will yell my anger at your existence, and I will sing for the beauty of all that is not you, and I will talk and dream of a time when you are gone. You will silence me no longer, because I have seen that when you lose your voice, your soul is soon to follow. I hereby remove the tape from my lips and unbind my hands. So screw you cancer, I can yell louder than you, because you may live in my body, but I live in the big wide world. And that world is beautiful; it is wondrous; it is where everyone I love lives; so I’m going to stay here a while and there’s nothing you can do about it.

 Baby Kai tuned one on October 13^th. I cannot believe how quickly his first year of life flew by. It has been amazing to watch the transition from a completely helpless creature who knows absolutely nothing outside of basic instinct, to a person with knowledge and understanding and opinions. He is an absolute joy. When I came home from the hospital on Monday, after being gone almost a week, and my mother-in-law brought him downstairs from his nap, he saw me and his eyes grew wide, his smile almost broke his face, and he yelped “YAY!” in delight. When she put him in my arms he wrapped his little arms around my neck and gave me a hug full of love and pure joy. He kept leaning back to look at my face, give a huge smile and shake of delight, and then hug me once again. He even gave me two baby kisses on my cheeks. I will never forget this greeting. While the love I have for my friends and my family creates a never-ending river of hope on which I will float to my cure, it is my sweet Jeff, with our perfect baby Kai on his lap, who are steering my ship of perseverance.  It is Kai’s delighted smile, and Kai’s joyful eyes, and Kai’s innocent perfect love, that shine brighter than any darkness and will always lead me home.

Today I am thankful for today. I am thankful that the surgery went so well, that the tumor will yield a good TIL harvest, and that I have the kind of doctors who high-five each over the operating table; I am thankful for the many expert opinions helping to guide our next steps; I am thankful for the beauty of fall, the smell of which will forever remind of new starts no matter how far removed from school I grow; I am thankful for the continued support of our wonderful MMG family; I am thankful for our amazing friends and utterly devoted family, who stay with us, helping us exist on a daily basis, for weeks, and weeks at a time; and as always I am thankful for my wonderful, loving, awe-inspiring husband Jeff, who rides this roller coaster right beside me with his arm wrapped tight around my shoulder, staring ahead with determination as I burry my face in his side, and our perfect baby Kai. There is no way I can repay your love, my sweetness, but I promise you that no matter how dark I feel inside, I will have only smiles and light for you, and I will do my best to forever shine brightness on your path just as you do on mine.

"But I will hold on hope

And I won't let you choke

On the noose around your neck.

And I'll find strength in pain

And I will change my ways

I'll know my name as it's called again."

             Mumford & Sons, The Cave