Friday, December 9, 2011

December 9

We got the latest results last Thursday. The tumors in my organs are still shrinking and there aren’t any new tumors anywhere. But the subcutaneous tumors are growing slightly, so there is more work to be done. I am going to have scans again January 11th (results on the 12th). Then, barring any miraculous tumor shrinkage, I’ll have another surgery to remove one or two tumors on my back so they can harvest them to grow cells for TIL. The cells they harvested from the tumor on my ovary did not grow. Drs. Miller and Yang think it is because they were harvested too soon after having chemo. So we are going to wait another month to get further from my last treatment and then try again with different tumors. Assuming they are able to grow new cells from the tumors on my back, after they grow I will do another TIL treatment. The one at the top of the list right now involves almost the same process as the IL-12 protocol – chemo to kill my existing cells, then receiving the replicated cells as replacement – but instead of the cells themselves being engineered to express IL-12, I will receive 10 doses (one per day) of IL-15 after receipt of the new TIL cells. Like IL-12, IL-15 is theoretically specifically targeted to fight tumor (rather than elicit a whole-body immune response like the IL-2).  The standard “tried and true” TIL method involves receiving chemo, then the new cells, and then IL-2 to stimulate the immune system and “rev up” the new cells. The IL-15 protocol is the same as this therapy, except I will receive IL-15 rather than IL-2 at the end. Dr. Yang said they are seeing fewer side effects with the IL-15 and that they believe it may ultimately replace the IL-2 in the “standard” TIL treatment. So that’s the news and the plan. For now we wait and hope beyond hope that my current cells just need a little more time to fight and will show better results at the January scan. However, as my sweet husband pointed out, either way, I am still better today than when we started this craziness, because the tumors in my organs are shrinking and/or virtually gone and those were the most dangerous to my health. The subcutaneous tumors are not harmful to me physically; Dr. Yang said they could grow exponentially and still not pose a threat. But their continued growth indicates that the melanoma is still active in my bloodstream, and there’s no telling where it will land next. I am okay with these results. I am happy to have a little time to relax, continue to recover from the last treatment and more recent surgery, and go about my daily life with Jeff and Kai. It is a relief knowing that I have at least a month until we do it all over again. The most unfavorable part of the IL-15 protocol is that I will be in the hospital for even longer this time. I will receive the IL-15 for 10 days after I receive the new cells, which means 10 more days of being in the hospital away from Kai. And although I am happy with the plan in place, that part of it makes me want to throw myself on the floor and have a good ole temper tantrum scream-cry-and-kick fest. Fingers crossed for a holiday miracle. I’m still holding out hope for a fresh start in 2012.

There is a clinic on the third floor of the Clinical Center where we go to meet with my doctors for outpatient appointments, including when we receive scan results. In the waiting room of the clinic, the TV always plays the Game Show Network. I don’t know who decided this but I have to give them credit because it is the most perfect channel for those of us waiting for important news; news that could indicate life or death. A soap opera is not compelling unless you are a regular watcher, a daytime talk show is too self-helpy for the moment, and the news just adds an extra layer of anxiety to the already tense situation. But a game show is perfect. It’s relatable to personal experience (I am anxiously waiting to find out if I’m winning or losing) and it’s completely frivolous (which is exactly what my mind needs to stop it from thinking deeper, mainly made-up thoughts).  When we were waiting this past Thursday, the show Deal or No Deal was playing. The premise of this show, in a nutshell, is that the contestant randomly picks numbered cases from a group of super models, hoping to win a lot of money based on the numerical cash value listed inside each case. You start with a case and hope that it contains a large amount, and by guessing the other random cases, you get a better picture of your odds of winning with your case. That’s it. There’s no strategy, there’s no challenge. You randomly guess numbers and hope you get lucky.  This is what my treatment options feel like.  My treatment options are hidden in the cases, my doctors are the super models (which is not to belittle them in anyway but purely for use in this metaphor, although Drs. Miller, Hessman, Stewart, Phan, and Rossati are all gorgeous), and my hope and determination comprise my starting case. I feel like I am randomly choosing cases and hoping I am lucky enough for the treatment inside to work.  There’s no way of knowing beforehand what my chances are. Sure there are statistics regarding response rates, but these statistics are difficult to interpret and apply across a wide range of patients (age, severity of disease, previous treatments, etc.). But melanoma, like many cancers, is a very personal disease – what works for one person may not work for another.  Even though I am confident in my treatment plan, and I have educated myself as much as possible about the options, when it comes down to it, I am just guessing and hoping for luck.

On all game shows, there is a manufactured heightened expression of anxiety. They create intense drama over meaningless situations to keep the viewers interested in the game. If you take the anxiety you feel when Ryan Seacrest cuts to commercial before reveling who is safe on American Idol, and you magnify that by one million percent, that is the anxiety that lives between getting the scans and finding out the results. During this time, the results exist; someone knows them and that someone is not I, and that is an incredibly maddening feeling. There are a lot of important, potentially life-altering results for which we have to wait - getting into a certain school, doing well on a test, landing a fabulous new job, buying a home, finding out if you are pregnant. Waiting is difficult for everyone.  It’s difficult to eat and sleep, your heart races, your mind wanders, your stomach is all tied in knots.  But if you are disappointed when you finally find out the results, you feel badly but you accept it and do something else instead. Regardless of how much you may want something and how seriously you think your world will fall apart if you don’t get the results you want, you still get to live. For 24 hours, approximately every 4 weeks, we are waiting to find out if my life is going to be longer or shorter.  During the waiting time, the answer exists and we don’t know what it is; somebody knows if I am going to live or die and we just have to wait for them to tell us. That time is, hands down, the most mind-numbingly stressful time I have ever experienced. If I combine everything I’ve ever wanted in my entire 34 years of life-including all of the hope, joy, stress, and anxiety that goes with it-it would comprise a single rose in the thousand acre garden of desire I have for my doctors to tell me that a treatment is working and I have my life. There is nothing else in this void, there is only the waiting. There are no ideas, no creativity, no making of plans, no decisions of any kind – just a constant, whole-body plead for good news. I could have never imagined the intensity of this waiting before going through it myself. From this lesson, I will forever feel and express my utmost empathy for people I know who are stuck in their own life-altering waiting times. And if you happen to be there now, stay strong, I am sending blankets of love to provide comfort during each decade-long minute until you find out that you too will live indeed.

But now we are past all of that for this round and I’m happy in this time of being free at home with Jeff and Kai. It’s fabulous to have this time alone with Kai, knowing we can do things like attend playgroups and story times and our plans won’t be interrupted by treatments for at least a month and hopefully more. Kai update: he is adorable, hilarious, brilliant, and all around perfect. He is almost 14 months old now and is about to take off walking on his own any day now. He’s a super chatterbox and his vocabulary grows every day, as does his ability to communicate accurately through body language. It’s so exciting to hear/see what he has to say. Of course I love everything about him, but I think the most intriguing part of his personality so far is his sense of humor. He is hilarious on purpose. He understands why things are funny and can translate that across funny actions. He loves to perform, loves attention, and loves to be acknowledged with laughter. It is really exciting to watch his personality grow; watch him discover and learn and then react. Regardless of what he chooses to do in life, I firmly believe that he will make those around him genuinely happy. And for that I am thankful.

The most difficult thing to see in the Clinical Center is children, who are there for treatment, and their parents. As a patient, it breaks my heart to know part of the fear and pain their little bodies will undergo during their treatments. As a parent, my heart breaks for the mothers and fathers of these little ones, who have to sit back and watch their children be in pain and have a constant worry, fear, and dread about each outcome. When I pass other adult patients, we smile at each other in an acknowledgement of sister- and brother-hood. But when I pass a family, the pain comes in a heavy, dark ball right from my stomach, to my heart, to a cascade of tears. There is a place on the NIH campus called the Children’s Inn at NIH. It is a non-profit institution that lives on the NIH campus. The Children’s Inn provides long-term lodging to families whose children are undergoing treatment at the Clinical Center. Parents and siblings can stay in the Inn (which is right across the street from the Clinical Center), and the child-patients can also stay there at the discretion of their doctors. It is a beautiful, cozy, warm, happy, family-friendly Inn that does everything it can to alleviate stress and provide a homey environment to families who are experiencing intense amounts of worry and pain. I know this is a time of year when people often consider making charitable donations and are looking for deserving institutions. If you are, you can learn more about the Children’s Inn at  I do not usually use this space to ask for help or promote causes. But there is nothing more worthy of support than the health and happiness of children. Being thankful for the health of our own children and families is something most of us reflect on during the holidays. This year, please say a prayer (whatever that means to you) for the children and the families whose hearts are begging for mercy and who genuinely need a holiday miracle; children whose Christmas lists are addressed to their doctors rather than to Santa Clause this year. May you get everything you wish for, my tiny warriors, next year will be better for us all.

Today I am thankful for the vast amount of time our families have given out of their own lives this year to stay with us and support our every need; I am thankful for the continued overwhelming love and support of our beautiful friends, both old and new; I am thankful for the thoughtfulness and generosity of old friends who are going out of their way to come back into my life and offer support; I am thankful for visits, texts, e-mails, and calls reminding us how much we are loved; I am thankful for our latest results and that nothing new has grown; I am thankful for the marriage of June and Peter, an amazing woman and a man who deserves her; I am thankful for the marriage of two other friends who will remain nameless but who know who they are; I am thankful for holiday miracles, wishes, and dreams everywhere; and, as always, I am thankful for my amazing husband Jeff who could not possibly be a better husband and father even if he tried – Kai gets his perfection from you my love, and for our perfect baby Kai. Our greatest gift to you this holiday is the love that flows in waves from every pore in our bodies to cover you and hold you every second of every day. And your greatest gift to us is your smile and the knowing twinkle in your eyes. You are loved, my sweet baby, you are love.

Ode to Laura, a co-worker, friend, and sister warrior who graced every life event with a limerick and a voice from the angels:

Your life is a beautiful song
A tune both graceful and strong
Now we sing for your solace
As you have for all of us
Through love your light will shine on

Thursday, November 10, 2011

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 30th, 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 13th. 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

Monday, September 26, 2011

September 26

I am home, sweet home. Yesterday my white blood cell count was over 5,000, and since all of my blood work is looking good, and I am not having too many side effects, they are letting me stay at home and go back each day for labs and monitoring. It is one of the many perks of being local. I am still technically an in-patient and am just out on pass when I’m at home, because I will have to go back to stay if anything does happen. So I still have my room, which makes it really convenient when I go back in for labs each day – I just go back to my same room and tell the nurses I am there. They let me go , so last yesterday afternoon, so last night was my first sleep in my own bed in what seems like a really long time. Yesterday and Saturday, I had a completely debilitating headache, unlike anything I’ve ever experienced, but it is better today and now I am mainly just very, very tired. I haven’t yet gotten the high fever that they are still expecting, but who knows, maybe I won’t get it. They said it usually happens between day 8 and day 14 after receiving the new cells. This coming Thursday will be day 14, we shall see what happens. The fatigue is overwhelming; there’s not a lot I can do other than lay on the couch or the floor (or, of course, the bed, but I’m trying to at least stay downstairs where I can see Kai, even if I can’t take care of him or play with him as usual).  I am so thankful for our parents who have been doing just about everything for us as we get through this treatment. Jeff’s parents left on Saturday, and my mom and step-dad took over. Thank goodness for parents; I can’t imagine how we would ever be able to do this without them. While I’m not a mind reader, and as perfect as he is Kai does not yet wax philosophical, but I have to believe that allowing Kai to stick to his normal routine, at home, with his grandparents is making a world of difference for him during all of this chaos. And for that, I am thankful.
So that is my update. Nothing too exciting is happening right now. We will be going back and forth to the Clinical Center every day until my doctors are confident that I am stable. And if I experience any additional side effects, I will have to go back to stay until they pass. But for now, I am happily exhausted at home with my family, confident that my new super cells are flying around killing tumors, while the rest of my body recovers from the harshness of this treatment (that is not a criticism, it is just a fact, I am thankful for the extremes my doctors are going to to cure me and I am thankful to my body for taking it all like a champ). As I said previously, it is difficult for me to be still and rest, so I guess I am grateful that my body isn’t giving me much of a choice right now, even though my mind would like it to hurry up and recover. Although I guess that’s always the case – the mind would always like to move more quickly than possible. And patience is one of the most important lessons I am learning on this journey.
Tonight I put baby Kai to bed for the first time in weeks. He was asleep in my arms before he even finished his bottle, with his sweet little body all warm and cuddly against me. I continued to hold and rock him for longer than I should, but sleep books be damned, I miss my baby. We rocked in silence, at the end of his song, with his head resting gently on my shoulder, his arms wrapped tightly around my neck, and my arms clinging just as tightly to his warm little body. These days my tears flow more freely, but tonight as they fell they did not fall from sadness or worry or fear. They feel from an overwhelming sense of relief and gratitude that we are through the worst of this treatment, and that I am once again given the privilege of holding my baby close as he drifts off to sleep, secure in knowing that I will be here for him when he awakes. With his little chest pressed against mine, our hearts beat together to the rhythm of unconditional love, and our breath flowed in and out in perfect synchronicity as I inhaled his innocent perfection to expedite my cure.  And for that, I am thankful.
Today I am thankful for rocking chairs everywhere; I am thankful for my continued care by my fabulous doctors and nurses; I am thankful for the constant cards, e-mails, phone calls, and text messages from all of the amazing people who continue to support us; I am thankful for our wonderful MMG family and the bi-weekly, much-need and much-appreciated dinners they provide; I am thankful for my mom and Bill who have taken over our and baby Kai’s daily care; I am thankful for all of our amazing friends and family; and, as always, I am thankful for my sweet sweet Jeff whose natural loving actions remind me every second that we are true partners in this journey, and our perfect baby Kai. Every hour of pain is worth just one second of your embrace. I would gladly endure these treatments a hundred times over, for the privilege of one extra minute with you in my arms.

Thursday, September 22, 2011

September 22

Everything has been going very smoothly so far. I am severely neutrapenic, but the only thing I really feel from that is fatigue. On Sunday, Drs. Phan, Miller, and Rosenberg came into my room, all with huge smiles on their faces. They said that I was doing wonderfully and that I could go home for a few hours each day to see Kai! So Sunday, Monday, and Tuesday I spent about 5 hours at home with my baby. But on Tuesday, just about when it was time to come back, I crashed with fatigue. I was so tired I couldn’t even move for a few minutes. I’m not good at the in-between time, the time where I’m not totally incapacitated but I’m also not normal. I always try to over-extend myself during those times. Mainly because I’m stubborn, but also because when I am home I want Kai to see me acting normally. He doesn’t seem to be bothered by my new hair (or lack thereof) or that I have to wear a mask. His smiles are as big as ever and he shows me all of his new tricks – like high-fiving, crawling everywhere, feeding himself with a spoon, and imitating others’ actions. Yesterday I couldn’t go home because I needed blood transfusions, so Jeff and his parents brought Kai in to see me.  Of course he was a big hit with the doctors and nurses. It’s so great to get daily Kai snuggles; I’m sure it’s making my new cells work extra hard.
So the last few days have been pretty busy. I am on one antibiotic given IV every 6 hours, and another given IV every 12 hours, which they just changed today to every 8 hours. I had been leaving for home as soon as my noon-ish antibiotic was finished and getting back around 5:30 to start the 6:00 dose, but now the timing will be different (not as much time between medications) and I may not make it home as often. I didn’t get to go home today because one of the side effects I am having is horrible pain in my teeth. They think it is most likely from the neupogen shots they give me each day to boost my white blood cells. It works through stimulation of bone marrow and can cause bone pain, so for some reason I’m experiencing that pain my teeth. But to rule out infection or abscess, I had dental x-rays and an exam (all clear). Over the past couple of days I have had five blood transfusions: three sets of platelets and two sets of red blood cells. Before the first set of platelets I was very hesitant. The idea of someone else’s matter in my person was a bit disconcerting. Also I was afraid that my new cells might not like this other person’s platelets and it would somehow interfere with the efficacy of the treatment. But Dr. Hessman spoke with me at length and assured me that would not be the case. She said my new cells would not even notice the platelets, because by now the new cells should be traveling through tissue looking for tumors and aren’t worried about what is going on in my bloodstream. So I got over my hesitation and did what was best for my body. That was Tuesday evening. On Wednesday, Dr. Phan told me I needed another set of platelets and two units of red blood cells. Between all of that and all of the antibiotics, I was basically hooked up to the IV all day, which is why Kai came to me instead of me going to him (also I was exhausted). There are some things I can taste when given through the IV. I can always taste the saline they use to flush my line and I can always taste the benedryl. I could also taste the red blood cells.  It was a very odd sensation. It was like the back of my throat was bleeding (but it wasn’t painful, more of a warm waterfall sensation), and knowing that it was someone else’s blood made it even stranger. But after getting the blood, I felt much less tired, so it was definitely a good thing. Today I received another set of platelets. Both Dr. Miller and Dr. Hessman have said that almost everyone who gets the chemo regime that I did requires blood products at least once, and that the amount I am getting is totally normal. I get medicines and vital sign readings all through the night, but my night nurses and I have a great system going where they put me to sleep with benedryl and ativan around 10:00, then I don’t even wake up when they hang my 12:00am antibiotics or take vital signs, then I do all of my morning blood draws and vital signs around 4:30am, and then they put me right back to sleep and I wake up naturally around 8:00, just about in time to see all of my doctors on their morning rounds. It’s a good system and I have some amazingly stealthy night nurses. While I have a relatively high tolerance for pain, don’t mess with my sleep. So my nighttime healing goddesses are particularly important, and for their wonderfulnesss, I am very thankful.
I am just starting to lose my hair. I noticed it today in the shower and now on my pillow. It’s not too noticeable yet, but will be soon. Earlier in the week, I asked Dr. Miller when she thought I would lose it and she said Thursday, so she was spot on.  I might also start experiencing some side-effects from the IL-12 once my cell counts come back up (because until then I don’t have an immune system to respond to anything), including a high fever, which Dr. Miller anticipates might happen this weekend. Dr. Phan said it will probably be about 5 more days until my counts start to come up and they have to be over 1,000 for 3 days in a row (after hovering around 0.03 for a few days, they are up to 0.3 today) before I can stay at home (and just come back each day for blood draws and monitoring).
While I am so happy to get to go home and spend time with Kai, it leaves me exhausted and with almost no energy by the time I get back. The lack of posts these past days are for that reason only; the extreme fatigue. Everything is going very well and the doctors seem very pleased so far. Of course, they can’t tell if anything is working yet, but all of my lab values and vital sign readings have been perfect, so that’s what makes them happy. Dr. Miller said that it will be my second-month scan that will really be important in terms of gauging the success of the treatment. She said it can take a while for the tumors to die and for the cells to be reabsorbed into my body. The second-month scan will be in November, so I am still sure that I will be cancer free before the end of this year.
Our fabulous MMG family delivers meals to our home every Monday and Thursday. On Monday, I happened to be home when our friend/co-workers, Shani, came to deliver our meal. She also brought me a book of crossword puzzles and a card. On the card is written one of the most fittingly inspirational messages I have ever seen. It is not attributed to anyone, so I’m not sure who should get the credit for writing this, but I want to share it because, while it certainly hits home for me, I am sure it will also for many others as they stand strong while their own winds blow. My melanoma wind is making me stronger than I’ve ever been, and for that I am thankful.
A mighty wind blew night and day.
It stole the oak tree’s leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark.
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
“How can you still be standing, Oak?”
The oak tree said, “I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You’ll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn’t sure
Of just how much I could endure.
But now I’ve found, with thanks to you, I’m stronger than I ever knew.”

Today I am thankful for my wind; I am thankful that everything is going so well; I am thankful for the ability to see my baby as much as possible; I am thankful for my fabulous healing goddesses who amaze me every day with their caring and support; I am thankful for a visit from my mom and Bill  on Monday and from Renee today; I am thankful for everything Jeff’s parents are doing for us while they stay with us to care for Kai and so much more; I am thankful for the continue support of our MMG family and all of the wonderful dinners they are providing; I am thankful for our fabulous family and friends who support us every minute of every day; and, as always, I am thankful for my wonderful Jeff who must be exhausted going back and forth multiple times each day in addition to caring for me and working, you deserve a vacation my love, and for my perfect baby Kai. You are my roots, the deepest part of me, and for you I can endure anything.

Saturday, September 17, 2011

September 17

I miss my baby. I miss him with a force that brings a lump to my throat and tears to my eyes when I look at his pictures. I want to run home and scoop him up and hold him tight for hours. He is crawling all over the place now (which I haven’t seen), getting into everything. Looks like we have our work cut out for us with some serious baby-proofing. He just grows so quickly and learns new things every day and thinking about not being there to see them first, makes me feel sorrier for myself than anything else related to this cancer. But it is not a pity in which I indulge for more than a few seconds, and I remind myself that I could just as easy be on a business trip or even a vacation. He is having a wonderful time with his grandparents and no part of me is worried about him. I just miss him. I miss him so very much. But I have no doubt that this treatment will be my cure and we will find out soon that the cancer is gone. In that case, we will have traded 1 year for 50, and I’ll take that swap any day.
I got my new cells on Thursday. It was a somewhat anticlimactic 20-minute IV infusion. Knowing how much care and work went into creating the cells specifically for me, I thought there should be balloons, and confetti, and “I’m a Survivor” blasting throughout the unit. So I gave my new cells that party in my head and continue to visualize them flying around in tiny fighter jets, zapping the tumors one by one. These are my warriors, my heroes, my saviors and I am just here to cheer them on. That is a strange distinction, that between body and mind. I consider my “me” to live inside my mind and it is that me that I am trying to save by curing my body. Otherwise my body is just a machine that functions automatically, with no goal or meaning or thought of any kind. So we’re working together, these two components of me – body and mind – because we depend on each other to win this fight. My body to respond to treatment, and my mind to never give up.  And I speak for all of me when I say that cancer better run and hide because we are out with a vengeance and we are pissed. And, thanks to my super bionic warrior cells, there is no place you can run where we can’t find you and defeat you. Clearly you didn’t know what you were getting yourself into when you decided to mess with me because love conquers all, and I am encased in an impenetrable shield of pure love made from thousands of hearts shining brilliant light to cheer me on.  And for that I am thankful.
Other than getting the cells, not too much is going on. We are now just waiting for my cell counts to come back up to an acceptable level so I can go home and snuggle my baby. I’m not even hooked up to the IV anymore, so that’s a nice freedom.  I can walk around the clinical center as long as I wear a mask, although I try not to leave my room too much since my cell counts are down so low (today they are 160, which is the lowest they have been so far). My dad and step-mom are coming today. I’m excited to show them this amazing Clinical Center. Its sheer size elicits admiration enough, but seeing all of the pieces/departments who work together seamlessly to save lives is truly awe-inspiring. Hopefully they will even meet Drs. Miller and Phan (since it’s a weekend, fewer doctors come to visit during the day). I really like the new Fellows, Drs. Miller (my primary doctor), Hessmen, and Stewart. In addition to being on their way to becoming brilliant oncologists, they are also fun and full of life, quick to laugh, and very easy to talk to. As much as I will always love Dr. Schaub, there is a different kind of freeness in speaking about certain side effects to a group of women. Especially since they are all just about my age, and are definitely people I would want to be friends with on the outside. So for now we are waiting, waiting, waiting. Cheering on my superhero cells and remaining unbendingly confident in my cure.
Today I am thankful for my superhero cells who are flying their little planes all throughout my body; I am thankful for the continued personal care of my phenomenal doctors and nurses; I am thankful for all the fun Kai is having with his grandparents and for all they are doing to help us; I am thankful for a visit from my dad and step-mom; I am thankful for the continued overwhelming support of our MMG family, as well as all of our family and friends; and, as always, I am thankful for my sweet Jeff who is truly my partner in this battle, and our perfect baby Kai. I cannot wait to see all of your exciting new skills, sweet baby, and most of all I cannot wait to hold you close with the knowledge that I will be here for all of the rest of your firsts.

Wednesday, September 14, 2011

September 14

Today was a very exciting day. First, we took a tour of the lab where they grew my cells and even got to see my cells under the microscope. I told them we were ready for them and that I promised to fight right alongside with them. Although the science is greatly above me, it is really an amazing orchestration of cell generation and manipulation. The people in the lab have been working with my cells for months (considering they began with the original harvest from the liver biopsy and then created brand new cells from the tumor on my neck). They know my name and our story. It was really humbling to have the chance to meet them in person and see where all of the magic happens. And now my cells are sleeping peacefully, dreaming victorious dreams, and preparing to fight to the death tomorrow. I love you little cells, you are my salvation.  And for that, I am thankful.
The second exciting thing we did today was get our heads shaved.  That’s right, I said our heads. My dear, sweet, wonderful Jeff shaved his head as an act of love and solidarity. He said, “This is our cancer and this is our baldness.” If you know him, I’m sure you are not surprised; he is one of the most (the absolute most in my opinion) caring, loving, generous, loyal men you’ll ever meet. I cannot believe that I am so lucky as to be his wife. I promise you, my love, I will fight with everything I have and I will win this battle. And after I do, I will devote the rest of our long lives to ensuring you are happy and you are loved every second of every day. And for now, we will wear our baldness proudly and beautifully together. It is our badge and our shield, and it will soon be our winning trophy, for there is no doubt that this is our fight.
Other than those two fantastically exciting events, this day was uneventful. I didn’t receive any treatment today because it was the rest between the last dose of chemo (yesterday) and receiving the new cells (tomorrow). I’m feeling tired and sometimes nauseous, but otherwise great and ready to kick some cancer butt tomorrow. Tomorrow is when it all begins. Tomorrow is the first day of my cure. Dr. Yang, one of the attending physicians, told us that a woman who recently participated in this study is almost completely disease free after just one month. Just one month. That will be me too, but without the “almost.” I think that by Christmas the cancer will be gone. We will greet 2012 with overflowing gratitude, full of love, and with renewed energy to fight for others using all of the strength we gained fighting for ourselves.  It’s going to be a glorious year, of that I am sure.
Today I am thankful for my new warrior cells who are going to rush in fighting and finish this chaos; I am thankful for the brilliant scientists and doctors who created my new cells and this treatment; I am thankful for my loving healing goddesses who make each day here a joy; I am thankful for Leah and Christine who shaved our heads with dignity and made us beautiful and proud; I am thankful for the continued support of our amazing family and friends; and, as always, I am thankful more than words can say for my sweet, sweet Jeff and our perfect baby Kai. If you grow up to be half the man your father is, sweet baby, you will be quite a man indeed.

Tuesday, September 13, 2011

September 13

The past few days have been a whirlwind of going back and forth between the Clinical Center and home.  Because of the toxicity of the cytoxin, I had to be on prophylactic IV bladder medication for 48 hours (and had to continue to pee every 2 hours until the medication finished). That finished at 7:00pm on Sunday and then I could go home to sleep, which was fabulous. I got to snuggle baby Kai and sleep in my own bed. I then came back to the Clinical Center on Monday late morning to receive the fludarabine and a few hours after that I could go home again for a few hours. I then came back last night to sleep because my last dose of fludarabine was at 5:00am this morning (with labs and premeds starting around 4:00am). The plan was that I would be able to go home afterwards and stay there until tomorrow evening. But plans have changed because my cell counts have started to go down (which is what they want them to do – my white blood cells need to be at zero before I get my new cells) and baby Kai has a cold. It was too risky to be home with him while he is sick and I have a decreased (on its way to zero) immune system. So here I am, back at the Clinical Center for the duration of treatment.  The good news is that the chemo is finished. It wasn’t something I would choose to do for fun, but it wasn’t as terrible as I expected. I am tired and nauseous, but otherwise doing well.  I haven’t lost my hair yet. Dr. Miller told me it will happen all at once, in one fell swoop, rather than gradually, so I’ll probably get it shaved tomorrow or Thursday so it’s less dramatic when it does happen. Tomorrow we are going to the TIL lab to visit my new cells and give them a pep talk. It will be really exciting to see the amazing facility and people who created them and to get to see them before they comprise me. I’m not sure what I’m going to say to my cells yet; I think I have to meet them first. That’s about all the news from here. I will get my new cells on Thursday around noon. In the meantime, I will just hang out here, not catching any colds. With fabulous nurses to talk to, Jeff to watch movies with, and an unending amount of side-effect medications at my disposal, it’s comfortable here and we make the best of it.
I brought some things from home to decorate my room. Mainly pictures of Kai to tape to the walls, but also pictures of Jeff and Kai in frames; a sign made and signed by everyone at MMG from last time I was getting treatment; a beautiful picture my friend/co-worker, Angelica, made me for my birthday, which reads “Girl meets boy. They fall in love. Get married. Have a perfect baby boy. Watch him get big. Grow old together. Very very old;” and pictures drawn by my cousins, Max and Grace. One of the pictures drawn by Max has my name on it across the top and the word “love” down the side. However, my name is written backwards. I’m not sure if Max is infinitely wiser than any 7-year old should be or if the backwards writing was not entirely on purpose, but either way, it’s correct. That’s what I am right now. I am Jamie backwards. And my doctors are going to turn me right-side-up and inside-out to cure me. So maybe even by Christmas, dear Max, I will be Jamie the right-way-across again. But it is taking me a lot of lessons in flexibility to get from backwards to forwards. And when I am not feeling well and I look at this picture, I remember, oh that’s right, I’m just backwards right now, but still there is love. And for that I am thankful.
Today I am thankful for the wisdom of my doctors making me stay here rather than risk catching Kai’s cold (as much as I would rather be snuggling him tight instead); I am thankful for the wonderful care he is getting from his grandparents; I am thankful for a wonderful dinner from Karen; I am thankful for the continued support of our incredible MMG family; I am thankful for our amazing family and friends; and, as always, I am thankful for my sweet sweet Jeff who carries so much of this stress and deserves so much more than I can give him right now, and our perfect baby Kai. Happy 11-month birthday little one. Next month we will be celebrating your first year, which has been the happiest year of my life.

Saturday, September 10, 2011

September 10

Today has not been as horrible as I expected. I am nauseaus and very tired, and I have to pee every two hours (they come and wake me up to do it) which adds to the tiredness.  But overall, no where near the awfulness of IL-2 and for that I am thankful. Nothing much happened today. I had my first dose of cytoxin last night at 6:45pm and my last dose just ended now and that is it for the cytoxin, thankfully. The day basically comprised getting medications for nausea and sleeping and peeing, repeat cycle. And poor Jeff has been sitting by my side the whole time. Although it wasn't as bad as I expected, I still feel very sick, but just wanted to write a quick update for today.

Today I am thankful for love. I love you my sweet Jeff.

Friday, September 9, 2011

September 9

Once more into the breach, dear friends, once more. Here we are, at the Clinical Center again, just a few hours to go until treatment begins. I arrived yesterday.  I had to stay overnight last night to be hydrated. Now we are all clear and the pharmacy will soon be notified to mix the chemotherapy. In just a few hours I will willingly, purposefully, and hopefully inject poison directly into my blood stream with the sole purpose of killing part of myself. My chemo regimen comprises two drugs, cyclophosphamide and fludarabine. Cyclophosphamide is given today and tomorrow. Fludarabine will be given for 5 days starting today. The doctors and nurses tell us that the cyclophosphamide is extremely toxic and can be difficult to handle (which is magnified by the enormous doses they will give me to make me neutrapenic so quickly), but that the fludarabine is much easier on the system. My understanding is that the cyclophosphamide kills my blood cells and fludarabine kills my bone marrow. I have a one-day break between the last dose of fludarabine and receiving my new, improved cells, and then 10 to 20 days until my cell counts return to an acceptable level. It feels like we are about to embark on an epic journey.  I have no idea what to expect other than I won’t feel well and then I’ll be cured. I am scared of the pain. I am hopeful that this will be my cure. I am thankful for this incredible treatment. And regardless of which emotion rules at any given time, I cannot go back, so therefore I go ever forward toward my cure. Smiles and tears mix together to create a serum of hope.  And the knowledge that I am about to receive such an amazing treatment at such an amazing place soothes my worries and quells the worst of my fears.
Because if its toxicity, I have to stay in the Clinical Center while receiving the cyclophosphamide and for 24 hours after the last dose.  I also have to pee every 2 hours around the clock while I’m here because it is possible for “waste” chemo to accumulate in my bladder and cause it to shut down forever (possible, but extremely unlikely). Doesn’t sound like fun – being sick and having to get up every 2 hours, but I have a baby and I am used to sleep deprivation so I’m sure I’ll get through it just fine (and either way, I have no choice so I will sleep soundly after I am victorious).  So, whatever, it’s only 3 days and I have endured more than that through the IL-2 treatment. Because the fludarabine is well-tolerated, I will most likely be able to go home to stay during the remaining 3 days before I get my new cells, which is fabulous because I’ll be with Kai. I’ll have to come back every day to receive the fludarabine and be monitored, but I can sleep at home with my husband and my baby. I have no idea how long I’ll be here after I receive the cells, but hopefully I’ll be able to go back and forth from here and home at some point during recovery. Dr. Miller said I will lose my hair around the same time I receive my new cells and she will shave my head then. I’m okay with losing my hair. It’s become thin and gross anyway, so now I get a re-do and hopefully it will come back better than ever. My mother-in-law and her friend made me a cache of beautiful head scarves, and a good friend from work lent me some from her recent victory over breast cancer. I also bought a wig for special occasions, which is straight (rather than my normally curly hair) and I’m somewhat excited to have “hair” I can brush (my curly-haired sisters know what I mean by that I am sure). So that’s what I know and that’s all that I know. I feel like I’m about to jump off of a cliff into a void that is swarming with possibilities. I will try my best to let the pain whoosh past quickly as I fall directly into the rest of my long, glorious life.
The doctors just came to see me and tell me that we will soon get started. Dr. Rosenberg said, “We have terrific cells for you.” And they all admired the 13 pictures of baby Kai that are hung across my wall where I can see them from my bed.  I know they are doing everything they can to cure me. I know they have a personal stake in my cure. I know that I am in the best possible hands.  So I embrace the pain with one look at Kai’s smiling face, and I look forward to being made of superhero cells.
We recently had the privilege of meeting a fellow Melanoma Warrior (in fact that is what the T-shirt he was wearing said) and his fabulous family a couple of weeks ago. He, Jake, was coming to NCI to screen for a study and has since been accept into the TIL study, which he will probably be starting just as I am finishing (you can read his story at Jake and his family (his wife, son, and daughter) came to our house for dinner while they were here and we had a great time getting to know them and their journey. Like me, I have no doubt that Jake will be cured and that this is just a mind-opening bump in the road for him too. While we were eating, Jake asked me if I speak with many others with melanoma, and I told him that I don’t really, especially in the beginning, but that I’m starting to do more now. Later that night, I was thinking about my response and why it was true and I realized something extremely important. At that moment I realized that somewhere along the road, I have stopped feeling sorry for my cancer brothers and sisters. I have stopped pitying them (us) and feeling sad when I see them. Instead I have an incredible respect for their bravery, their strength, and their will. I will never again feel sorry for fighters of cancer. They, and their loved ones, are the strongest people I know. They have looked their own mortality in the face and have told it to go F itself.  They have endured more emotional and physical pain than most people can imagine. They have been poisoned, and mutilated, and burned by choice. They fight, and scream, and claw their way to the light. And they come out grateful and full of life. I am honored to count myself among their ranks and they would be my first pick for any team.
I will try my very best to blog each day of this treatment. I have no real idea of what to expect, so I’ll write it as it comes. I will use all of the love we are given as my shield and I will spear my tumors one by one until they are gone forever. No matter what happens during this treatment, I can take it and I will come out better for it. And for that I am thankful.
Today I am thankful for the treatment I am about to begin, which will be my cure; I am thankful for my loving nurses and expert doctors; I am thankful for my fabulous in-laws who are taking care of Kai while we are at the hospital; I am thankful for our amazing MMG family who has begun again their incredible circle of support; I am thankful for our extraordinary friends and family who reach out to us daily to offer love and hope; and I am thankful most of all for my wonderful Jeff who sits by me and feels my (and his own) pain every second, and for our perfect baby Kai. I miss you with a pain that brings tears to my eyes. I love you more than I could have ever imagined. I promise I will win for you, my baby, my love, my soul, my life.

Tuesday, August 16, 2011

August 16

Dr. Rosenberg called us today. It turns out that he would like to try a treatment other than MAGE. It’s a different type of TIL treatment. They have already grown my new cells for TIL; Dr. Rosenberg said he checked on them and they have grown very well and are showing great activity, so that’s good news.  He wants me to do a treatment where they take the new cells and genetically engineer them with IL-12. IL-12 is a substance that your body naturally produces (like IL-2) that stimulates your natural immune system to amplify specific activity of T cells. He said the IL-12 makes the TIL cells super powerful. Because the TIL cells themselves will be infused with IL-12, I do not have to also have IL-2, which is the most fabulous news. Also, because we are local to NCI, I can do a lot of this treatment outpatient, which means much less time away from baby Kai! First I will get chemo for seven days to kill my current immune system. It is a combination of two drugs.  The first one is given for two days. It is very toxic and I do have to be in the hospital to receive it (and for two days prior to receiving it so I can be properly hydrated). The second one is given for five days, and for that one I can stay at home and go to the Clinical Center every day for an infusion. After the seven days of chemo, they will give me the new cells. I don’t know how long I have to stay in the Clinical Center for that process, but at least a few days. Then I can go home again, but I have to go back to the Clinical Center every day for a number of hours to be monitored (so they can ensure that my white blood cell counts are increasing like they should, since they will be at zero after the chemo). I don’t know for how many days I have to return to the Clinical Center for monitoring, but I am guessing a couple of weeks. Here is the exciting part: I will be the first person in the entire world to ever receive this treatment at the dose they will give me. They have tried it previously at lower doses with good results and have just obtained approval from the FDA to try a higher dose. Dr. Rosenberg said that they are projecting that the dose they want to give me will be the ultimate dose for this treatment. He said in the trials they have done with mice, the IL-12 has made the TIL cells 100 to 1,000 times more powerful than seen with the standard TIL treatment. Because this is not only an experimental treatment (like all of NCI’s cell therapies), but also that I will be the first person to ever receive this dose, they will be monitoring me very closely to observe the results, side effects, and everything else that might happen. I’m very excited. It’s exciting to be the first person to get this dose, it’s exciting not to have to do IL-2, and it’s very exciting to not have to be away from baby Kai for more than a few days at a time rather than 3-4 weeks straight! Dr. Rosenberg was very excited about this treatment. It’s experimental, so there are no promises (not that there are promises with any cancer treatments, but with this one there’s not even any human data for what I’ll be receiving), but he said “I have the utmost confidence that this will solve your problem.” Now that is not a guarantee and should in no way be taken as one, but when Dr. Rosenberg, the pioneer of almost every existing treatment for melanoma, tells me that he is confident in my next treatment based on my specific health information, that’s about as much hope as I could ask for.  And for that, I am thankful.

I will still go to the Clinical Center on Friday for apheresis, because they will freeze those white blood cells just in case I need to do the MAGE treatment in the future (they want to take cells before I get any chemo) and I still need an MRI of my brain. And after the TIL/IL-12 treatment, it is still going to be a long road to recovery because of the magnitude of what I will be going through physically. But I am ready, bring it on. I am going to kick some cancer ass. You messed with the wrong momma, cancer, because you mess with me, you mess with my baby, and for that I will destroy you. So new plan, new treatment, new hope. I’m feeling feisty, watch out.
Today I am thankful for this exciting new opportunity; I am thankful that Dr. Rosenberg called us personally to explain this treatment and why he thinks it is right for me; I am thankful to be young(ish) and strong and ready to fight; I am thankful for the time I will be able to be home with baby Kai instead of in the hospital; I am thankful for our extraordinary MMG family who has already begun making plans for how to support us through this next round of treatment (we love, love, love you); I am thankful for our amazing friends and family; and, as always, I am thankful for my wonderful husband Jeff and our perfect baby Kai. I have no more tears, sweet baby, there’s no doubt I will win now.

Monday, August 15, 2011

August 15

Well the results are in and they aren’t exactly what we were hoping for. The good news is that there are no new tumors (and no new growth in the existing tumors) in any organs. The not so great news is that I have ten, new subcutaneous tumors, mainly in my back.  So while it’s great that nothing too dangerous is happening now, the growth of the new tumors indicates that the IL-2 is not working and it’s time to move on to treatment number two.  The next treatment is very similar to the TIL treatment I described previously, but more targeted to my tumors. My tumors express a protein called MAGE (which is relatively rare). So instead of using the cells they harvested from the tumors in my liver and neck, they are going to take white blood cells directly from my blood stream. They will do that this Friday, during a four-hour apheresis process at the Clinical Center.  Then they will take these cells to the lab and genetically alter them (by inserting genes into the cells) to attack MAGE protein.  Once the cells are engineered, I will begin the cell therapy.  I will be in the Clinical Center for 3 to 4 weeks. First, I will get one week of chemotherapy, not to treat the melanoma, but to kill my current immune system. Next, they will give me the new cells. With the new cells, they will give me another round of IL-2 to “jump start” the new cells and send them into attack mode. It’s an exciting treatment. Only four people have done it and all four have done it within the last few months. Let me say that again – only four people have done it. There is no long-term data on the treatment, but three of the four people have responded and one is already completely disease free.  If I do the MAGE study and it doesn’t work, I can still do TIL. So I’m excited to be part of this cutting-edge research. It’s an extremely thoughtful and complex process, and I am in awe of the brilliance that has created it. I am very lucky to be able to part of this treatment and for that I am thankful.

While I am confident that this will be the treatment to cure me, it is going to be horrible to go through. Absolutely the number one most horrible thing is being away from baby Kai for such a long period of time. Jeff is going to bring him in to visit frequently (maybe even daily depending on how sick I become), but that’s not the same as being there when he wakes up in the morning and to put him to bed at night. Three to four weeks in the life of a 10-month old is a very long period of time. He’ll be growing and learning new skills, and I’m sure he will be a different person from the time I go in to the Clinical Center to the time I get home. At least this treatment is once and done, as opposed to the IL-2 where I kept leaving and coming back and leaving and coming back. The second most horrible part will be the physical pain of the treatment. A whole week of chemo and everything that entails (I will lose my hair that week, but that is a small price to pay for my life), and then another round of IL-2. I am most dreading the return of the IL-2 nightmares. I feel like they’ve only just recently stopped and now they’ll start all over again. The other effects of the IL-2 seem to disappear relatively quickly, but for some reason the nightmares linger on and on and on.  Also, the recovery is going to be a lot more difficult than it was after the IL-2. Basically I am getting a white blood cell transplant – that’s about what the treatment boils down to.  And recovery will be a slow process. But I will recover and this will soon be behind us just like the IL-2 is now, and by then I am sure I will be cured.

Getting the news that the IL-2 stopped working was like being diagnosed all over again. Just when I was starting to get back into the swing of my “normal” life – going back to work, managing a regular daily routine, getting back on track socially – BAM!  I wasn’t able to update my blog right away because I needed some time to get myself straight in my mind. It has been a very sad week. I cry every day. I cry for the time I will be away from Kai. I cry for the pain I am about to endure. I cry for the uncertainty of the treatment. I cry for the fear of what will happen. I cry for the pain I am causing my wonderful husband and family. And I cry for the little bit of hope that has been lost now that one entire treatment is crossed off of my list of potential cures. I am scared. I am scared of being sick in the hospital. I am scared of how my family and friends will feel after this treatment, when I really look like I have cancer. I am scared that baby Kai will think I have abandoned him.  I am scared of the nightmares returning.  But sadness is part of this journey too. I’ve been so focused on staying occupied and positive that I haven’t given myself much time to embrace the sadness of the situation.  And it is unquestionably sad.  But it is so much more than that, and for that I am thankful. The solitude we find is that IL-2 wasn’t even in our original plans. We were going to go right to the TIL treatment. So the fact that the IL-2 shrank the tumors in my liver and pancreas is a fabulous added bonus. I think that my body knew that it needed more treatment. So instead of growing dangerous tumors in my organs, it decided to grow these small, not-so-dangerous subcutaneous tumors to let the doctors know that it needed some more help.  And now that the IL-2 has started curing me, the MAGE treatment will sweep in and do the rest of the work, leaving me completely disease free. It’s just going to be a more unpleasant road than hoped to get there.  But get there I will, I have no doubt about that.

My doctors have changed. The Fellows rotated in June, so now my main doctor is Dr. Miller. We met her for the first time at our clinic visit on Thursday and I’ve spoken to her several times on the phone. She is great and I have the utmost confidence in her. It will be strange to be at the Clinical Center without Drs. Schaub, Hong, and Rosati though. I will miss them. Dr. Schaub was there with us when we began our journey at NCI and we built an almost-friendship during my treatment, so I do miss him. But I am confident that I’m in good hands with Dr. Miller and I also really like her as a person. It’s a cool gift that my doctors are my age – it’s like your friends are trying to save your life. There’s an easiness, a familiarity, an absence of formality that makes the whole process more bearable.  And over the Fellows are the extremely capable attending physicians (they rotate more frequently, I have a new one every month; I don’t know who my attending physician will be during the treatment). And over them is the brilliant mind of Dr. Rosenberg who is pioneering all of these treatments; whose life’s work is finding a cure for melanoma.  With a team like this in my corner, there’s no way I can lose.  And this is just the team at NCI. Outside of NCI, I am surrounded by family and good friends and people who know people, who are all rallying for me, supporting us, and doing everything they can to make sure that this journey is more of a gift than a trial (and they are succeeding).

As strange as it may sound, I think it will be a small relief to lose my hair. Right now you would not know that I have cancer by looking at me. And sometimes that’s excellent. Nobody looks at me with pity, no strangers are extra nice to me because I have cancer, the world doesn’t treat me any differently. But it’s also like I’m walking around with this extraordinarily enormous secret about myself. When I meet new people, it feels like I’m lying to them, like I’m pretending to be some way that I’m not (or pretending not to be some way that I am). It’s a huge part of who I am right now and I am not ashamed of it. When I lose my hair during the MAGE treatment, I will wear my baldness proudly.  I am a warrior, my bald head is my war paint, I have many sisters and brothers fighting this fight with me and I am honored to be among such a strong and brave group of people. We bald-heads, and previous bald-heads, and future bald-heads, and bald-heads through love, are waging war and we will all be victorious – some of us in body, and some of us only in mind, but every single one of us in heart.  The chorus of one of the songs on baby Kai’s playlist says “It’s all how you look at it, and how you look at it, is really up to you.” There are people who see the world through rose colored glasses. But warriors see the world through rose, yellow, purple, white, black, orange, blue, green, and florescent pink glasses because this is our mantra, this is our truth.  There is not a lot about this journey that is up to me. All that is up to me is how I look at it, and I am so thankful for all of the amazing beauty I have been allowed to see.  The waves of this journey mixing with the birth and growth of my amazing son have worked together to show me a beauty and a light that I never knew existed, and I will never see life through the same eyes ever again. And for that, I am thankful.

We continue to be overwhelmed by love and support. People do wonderful things for us every day. Two especially amazing things have happened since my last post. First, my junior high school English teacher, Ms. Brok, held a fundraiser for us where she auctioned her farm to host a child’s birthday party. She, and all of the people who donated, went out of their way to thoughtfully and graciously support us; even though I have not seen Ms. Brok in about 20 years and do not know the people who participated in the fundraising. People who do not even know me, came together for our cause. It was extremely thoughtful and generous and we very much appreciate it. As if that were not amazing as is, two 10-year olds “won” the farm for their party. These amazing girls do not know me. Their parents do not know me. And not only did they choose to have their birthday party in response to a fundraiser for my family, but instead of gifts for themselves, they asked their friends to donate money to the Melanoma International Foundation. These extraordinary girls forwent birthday presents to donate $252 to melanoma research. These are the exemplary hearts of our future. I for one have a lot to learn from these two 10-year old girls. I will take this lesson to heart, I will not forget it. My promise to these girls is that I will do at least one nice thing for someone else every single day.  Even if it’s just an extra smile, or holding the door, or letting someone change lanes in front of me, I promise that I will pay this kindness forward every single day. With these two shining lights as my guide, I vow to do what I can to make this an even better world for them.

I feel very strongly about that. Not just about paying forward all of the kindness we’ve received, but about using this experience to do something good.  I’m not exactly sure what that thing is yet – other than in general supporting and loving people more – but there has to be something. This cannot be all for nothing, or if not for nothing it can’t just be all about my life being better. I have to make a reason out of this journey. I have to use all of the lessons I am learning for something real, for something tangible, to do something that will positively affect others. I cannot let these lessons go to waste. I have to use this gift to help.  The world needs so much help and we all have so much to give. When I am finished being a warrior for my own cure, I will be a warrior for something else, I am sure of that.

Baby Kai is 10 months old now.  I can’t believe we’ve been traveling this road for seven months already. He just gets more and more adorable every day. He is now clapping, and waving, and saying “da-da,” and is getting ready to start crawling any day. He has six teeth with two more ready to pop very soon. I don’t know how much he weighs or how tall he is officially, his doctor’s appointment is on Wednesday, but I’m guessing him around 21 pounds. He’s been wearing 12-month clothes for the past month because he’s a tall little sweetie. He sleeps like a dream, 11-12 hours per night (around 6:30pm until 6:00am) and eats almost anything he is offered. We could not be luckier to have such an all-around fantastic little son and we are so thankful every day that he has come to live with us. I do not want to leave him. My heart hurts just thinking about it and knowing I won’t be here to put him to bed each night brings tears to my eyes. But I am thankful that he is so young that there is a good chance that he won’t remember any of this craziness, and I’m hopeful that he only remembers the love and the laughter that we try to give him every minute of every day.

So while I go through this week with a heavy heart, I am still confident in the outcome of this journey. I still know that I will win and our lives will be better for it. But it’s going to be a very difficult few months. I’m not sure if it’s better or worse knowing what the treatment might feel like and having to just wait for it to be time to endure it. Either way, I know that with whatever physical pain I experience, it will be met two-fold with love and support that will overshadow all of the negativity and leave only hope behind. And for that, I am thankful.

Today I am thankful to be part of this research; I am thankful to go back to the loving arms of my healing goddesses at the Clinical Center; I am thankful for the magnitude of expertise that is directly overseeing my care; I am thankful for our wonderful MMG family and all of the smiles and hugs that comprised this Monday; I am thankful for our amazing friends and family who we will have to lean on again; I am thankful for two 10-year old girls who have taught me a lesson in selflessness; and as always, I am thankful for my amazing, devoted husband Jeff who does everything he can to make this as easy as possible on me when his emotional toll is just as great as mine, and our perfect baby Kai. Mommy’s tears are temporary, my love, soon only smiles will remain because I have a secret:  Right now I have cancer, but cancer will never have me.

Wednesday, July 13, 2011

July 13

Living with cancer is a constant exercise in emotional duality. Ninety percent of the time I feel two conflicting emotions, equally as strong, at the exact same time in regards to the exact same situation. I am simultaneously ecstatic that the treatment is working and terrified that it will stop. I am extremely grateful for everything this journey is teaching me and totally pissed off that it’s happening at all. I am confident that I will be cured and I am nauseous with fear at leaving Jeff and Kai. The same is true about returning to work. While overall I am thrilled to be back with people I love at a job I love, the cancer goggles show two different worlds. On the one hand, returning to work signifies the beginning of living with cancer. While I was home, entirely focused on Kai and cancer-related issues, the cancer felt like an encapsulated event. Like something we had to pause to deal with, but that we would get rid of it and then afterwards go about our normal lives using the lessons we’ve learned. But incorporating the “normalcy” of going back to work makes the cancer part of our real lives. It is something that exists along with us.  And that makes me feel like a cancer patient more than anything else has so far. However, on the other hand, I am extremely proud of us for being able to go about our normal lives, dealing with everything as best we can (and in my opinion, we are doing a pretty good job). I am thrilled that we can manage daycare, and working, and taking care of the house, and eating, and doing chores, and everything else that is involved in everyday living, while knowing that the cancer is riding along with us. And that pride that I feel for me and for Jeff makes me really very happy. I am proud of myself for juggling it all, even though I am equally terrified that a flaming bowling pin (or more accurately, a flaming tumor) may get thrown into the act at any point. But this is our life now. We are going to be simultaneously living with gratitude and waiting in fear until the cancer is gone. And it will be gone. I don’t know when, but someday, it will be gone. And I am extremely lucky to have a job that I love at a company comprised of such loving, supportive, generous souls.

I am back to work three days per week. It is really good to be back. I missed everyone a lot and our patient recruitment work is more interesting to me than ever before now that I know what it’s like from a patient’s perspective. Kai goes to a fabulous, loving, playful babysitter named Betsy those three days. Monday was our first day. Everyone told me that I would be devastated the first day leaving Kai, but I wasn’t. I don’t know if that makes me a bad mom, or if it just means I have total confidence in Betsy (which I do), but either way it was a relief.  I think it’s a really good environment for him. She watches five little girls aged 2, 4, 8, 9, and 12 in addition to Kai. Remembering what I was like at ages 8-12, I am sure that Kai will quickly become a much-loved baby doll, carried around and dotted on all day long. I have no doubt he is going to get lots of attention and lots of love, which are really the only things that matter. Mr. Kai is 9 months old today. He has four teeth and eats three meals a day of regular food. He seems to be in no hurry to get moving but he can sit and play by himself for long periods of time, which is ideal because he stays where I leave him, happy and content. He continues to be the cutest, smartest, funniest, coolest, happiest baby ever born and I love every second of him.
There is a series on Showtime called The Big C. It is about a 42-year old woman (Laura Linney) who just found out she has stage 4 melanoma. I’ve only seen part of the first season, but so far it is about her reaction to finding out her diagnosis. Her overall response is to become fearless and do everything she was unable to do previously – like speak her mind, cut loose and have fun, not care what other people think. I don’t know if the show is based on a book or maybe someone’s real experience with cancer, but I am sure that her reaction is a very common one. She is resigned to dying and doesn’t worry about the future. For example, she cashes in her 401K and buys a sports car. I like her character and I like the show. But it is, so far, very hopeless. Maybe her character will change over future seasons and this first season is just meant to show her initial reaction; I guess we’ll find out. Overall I don’t relate to her initial reaction, although watching her makes me feel less lonely. And watching her also makes me wonder if I am going about my own reaction incorrectly. I wonder if I should be seizing the moment more. In my confidence that I will be cured, am I wasting precious time? Is there a happy medium between giving up and ignoring the possibility of defeat? Is there something more I should be doing with life right now? I don’t talk to many other people with melanoma. I’m not part of any support groups or online communities. I am not ready to relate that way, because right now I am someone who is having a crazy, but quick, fight with melanoma and I will no doubt be cured by the first treatment we try. I am not yet a cancer patient, and right now looking at cancer communities and discussion boards and support groups actually serves to give me less hope. So, I’m not really sure how other people like me reacted when they found out their diagnosis. Laura Linney’s character, Cathy, doesn’t tell anyone she has cancer.  The only person who knows so far in the episodes that I’ve seen is her neighbor, who is a somewhat surely 79-year old woman. When she tells her neighbor, she looks right at Cathy and says, “Well ain’t that a Mother F-er” (although not as edited). And that is it. That is the exactly perfect thing to say when someone tells you they have cancer. You just look them directly in the eye and say, “Well ain’t that a Mother F-er.” Because when you take all of the emotion, all of the anger, worry, fear, and sadness that you experience when you are first diagnosed, it all boils down to “Well ain’t that a Mother F-er.” And yes, yes it is. But then you realize what else it is, which is an eye-opening, heart-warming, soul-freeing new lease on life for which I am thankful every minute of every day. However else having cancer impacts my life, it has made me realize how truly happy and fortunate I am. Even though I hope every day for it to be gone as quickly as possible, it has become a friendly guide who constantly points out all of the amazing things around me. And without it, I may never have even seen how tremendously fantastic life really is. Thankful doesn’t even begin to express how I feel about that. I guess nobody’s reaction is right or wrong. You feel what you feel in all situations in life. It is not how something makes you feel, it is how you act on it; how you let it affect you, with gratitude or with anger.  Both are correct. But for now, I will stick with gratitude.  In the words of Barenaked Ladies, “You gotta kick at the darkness ‘til it bleeds daylight.” Yes sirs, you do. You have to keep on kicking and kicking and kicking until you win the World Cup and rip off your shirt in an overwhelming, whole-hearted display of sweet, sweet success. And that is exactly what we will do. So maybe we’ll be quicker to go to the Grand Canyon, and try new restaurants, and take Kai places we’d like to go with him, but I’m not cashing in my 401K yet. I’m going to need that in 30 years. And for that, I am thankful.

Today I am thankful for Betsy and the love she is giving to Kai on the days I am at work; I am thankful to return to my fabulous MMG family and for the new perspective I have on the work we do; I am thankful for the perfect balance between being back at work and getting to spend time with Kai; I am thankful for the continued support of our neighbors; I am thankful for our consistently amazing friends and family; and, as always, for my extraordinary husband Jeff whose complete love and devotion overflow my heart on a daily basis, and our perfect baby Kai. Kick, my sweet baby, kick as hard as you can and never ever stop.