February 27

Every house on our block of our street has a melanoma support sign in its yard. Every single house.  That’s approximately 40 houses. When we turned onto our street on the way home from the Clinical Center, there were 40 melanoma support signs screaming HOPE to greet us. It is absolutely incredible.  This magnificent, overwhelming, extremely humbling display means more to me than I can possibly put into words. I feel utterly embraced. I cannot even begin to express my gratitude. I am awed by this communal support and love. I am filled with an incredulous feeling of camaraderie for each and every one of our neighbors. I am renewed in my resolve to win this fight. I am so completely thankful for this support; we both are. Thank you, thank you, thank you.

Today I came home to my sweet sweet baby. Again he is huge and so grownup. We had an immediate reunion and now it’s almost like I was never gone. I am much more tired this time. I’ve needed help standing up a couple of times and I’ve had to hand off the baby to Jeff because I was too tired to hold him. But last time I was tired the first few days too, so I am hopeful that this will be a speedy recovery again. With my mom and Jeff waiting on me hand and foot, I have no doubt I’ll be back to normal soon.  Also, I don’t have the PICC line anymore so every-day things, like showering, will be a lot easier. For some reason, the idea of having the PICC line removed terrified me. Jeff found it very amusing that after going through two rounds of IL-2, having a catheter inserted and removed, two liver biopsies, and all of the other ridiculousness, I was honestly scared to the point of an almost panic attack to have the PICC line removed.  I don’t know why exactly; I thought it was going to get stuck in my vein and refuse to come out. It didn’t. I took about 3 seconds to remove and I didn’t feel anything at all. Silly.  Otherwise the last 2 days at NCI were uneventful. I lost about 20 pounds of water weight in 2 days and I continued to recover with the help of my new favorite drug: injectable Benadryl. We were discharged this morning and got home around 11:30am. We go back April 4^th for the CT scan to see if the IL-2 is working (which is superfluous because clearly it is working). We have an appointment with Dr. Schaub on April 5^th to discuss the results. Last night, I asked him how quickly we would begin the next treatment after receiving the scan results (either more IL-2 if it’s working, or the TIL cell treatment if it’s not) and he said we would start that same week. So I have all of March to recover, renew, and reconnect.  And for that I am thankful. My only plan so far is to make a freezer full of baby food for Kai because he’ll start eating solids around the time I am next in the hospital, and since we don’t know which treatment we’ll be doing yet, I think we better stock up. I also look forward to visits from family and friends, and so many more cookies.

I just put baby Kai to bed (fingers crossed it’s another all-nighter) and as I was rocking him I thought about the last night I rocked him before I went into the hospital about a week ago. That night I reminded myself that soon I would be rocking him again and round two would be behind me. And I was right. As horrible as going through this treatment is, it really just represents brief interludes in between the nights I rock my baby to sleep. Even today, while I’m still recovering, I can’t remember the extent of the pain; I only know the love of putting my baby to bed. So now I remind myself that soon this whole thing will be behind us and I will be rocking my baby to sleep for years to come.  And for that I am thankful.

Today I am thankful for the incredible support of our fabulous neighbors, the display of love means so much to me; my mom who lovingly took care of Kai this past week; all of the supportive cards and messages that greeted me when I came home; my amazing family and friends; and, as always, my wonderful husband Jeff who takes such great care of me, and my perfect baby Kai. Because of you I know only love.  Cherish.

Our street:

February 25

Well I didn't get a fifth dose. Four were all my body could handle this time. My doctors were very happy that gave me a total of 14 doses though, so I believe good news is on the horizon. Also, my TIL cells are growing!  So that is fabulous news. This round of IL-2 was a lot more difficult than the first.  I didn't have hallucinations and the horrible headache that I did last time, but I feel like I have been run over by a truck. Also, because my blood pressure and urine output decreased so significantly, I was hooked up to all kinds of monitors, including a blood pressure machine that automatically took my blood pressure every 30 minutes, electrodes monitoring my heart, and a catheter. Because I was hooked up to so many things, I was confined to bed.  And while some of the symptoms were different this time, the diarrhea remained.  Which meant that I had to go in a bed pan about 20 times a day and someone (whomever was my nurse at the time) had to clean me. This was by far the most embarrassing part yet. A number of the nurses were consoling me and telling me it's just part of their jobs, but still, the indignity was horrendous. The ICU is a little different than the regular unit (or as they all it "the floor"). Every room is private and there are funny toilets right in the rooms without doors or curtains or anything. But I  guess most people aren't able to get up and use them, so it would be wasteful to have regular bathrooms. This time I can hardly eat anything - the nausea is worse and I was so afraid that I would have to use the bed pan that I was wary to chance it. Finally yesterday around 6:00pm, I was able to come off of the blood pressure medicine, and then this morning they removed the catheter. So now we are waiting to be transferred to the regular unit. Dr Phan said I would be in the regular until for a few days. But one exciting thing is that we already know I'm getting another private room, so that's fantastic.  Right now my arms and legs are extremely painful and my skin is peeling off my face and back again.  I think it's going to happen to my legs as well, but we shall see.  I feel pretty good, considering, and am hopeful for another fast recovery. I'm also excited at the prospect of a shower. After this one, we wait 3 weeks and then get a scan. If the scan shows the IL-2 is working, then I have to do this twice more. If not, then I guess we'll do the TIL cell treatment. The other night, when Dr. Hong was telling me that my cells were growing, he also mentioned that I had unique protein in my tumor called MAGE (which Dr. Schaub told me during the first round).  He said, "You are golden.  We have so many options."  And for that I am thankful. Next up is medication to help me lose the water weight - I'm guessing it's about 20 pounds this time, but I haven't been weighed so I'm not exactly sure.  Then we just wait out the recovery a little longer until we go home. I wish I were home now, because my cousin and his family are visiting from Boston, but I'm glad they are getting to spend time with Kai (who, by the way, slept from 9:00pm until 6:00am last night!).

Today I am thankful for the wonderful nurses in the ICU (Lori, Jackie, Heather, and Evette) who, in my opinion, went above and beyond the call of duty to help me the past few days; the always fabulous nurses on the regular floor who are pulling for me and whom I am excited to see again shortly; milkshakes from food services, which are sometimes the only thing I can tolerate; the beautiful sign of support from MMG that is hanging in my room giving me strength; my fabulous friends and family; and as always, my absolutely terrific husband Jeff who slept overnight with me in the ICU, and our most perfect baby Kai. Keep up the good work, my love, learning to sleep is only the most recent amazing thing you've done. I look forward to seeing a lifetime of more amazing things.

February 23

The first few doses hit me like a ton of bricks.  The first one brought intense chills, vomiting, fever, and severe discomfort.  The second dose was more of the same plus shortness of breath.  They went ahead with the third dose last night but we skipped the regularly scheduled dose this morning and now I’m in the ICU for low blood pressure and significantly decreased urine output.  Dr. Schaub said that because my blood pressure was so low, proper amount of blood was not getting to the kidneys.  After being stabilized in the ICU, we did the forth dose at 4:00 pm.  So far it’s ok.  The doctors are doubtful there will be a fifth.  It is very hard to write and Jeff is writing as dictation because I just wanted to let everyone know I’m ok.  I am still in the ICU and we don’t know what is going to happen next.

Today I’m thankful for the vast resources of NCI.  All of the nurses who are loving and caring for me, my doctors who will cure me, my amazing friends and family, and as always my wonderful husband Jeff who has to go through so much for me and my perfect baby Kai.  I will be home soon little one.

February 21

I have a private room!  It's fabulous! Not having to worry if I will have a roommate through the worst of the treatment is such an enormous weight off my mind.  I am so extremely thankful for this I cannot even properly say how much. Not only will I be able to completely control the environment during the worst of the side effects (no sound, no light), but it also means we can bring baby Kai for a visit if I'm well enough (the pediatrician advised not to if I have roommates). We'll see what happens, but I'm hopeful he can come for a visit this time. Plus I need to show him off to the nurses and doctors who see his pictures every day (last time they were taped to my bed-side table, this time they are taped all across the wall in front of my bed). Round two is off to a great start!  Jeff joked that I was cashing in my rewards points from my previous seven-night stay to upgrade to the private suite.

I feel good being back in the Clinical Center. The nurses and other people on the unit were all so welcoming. It felt like we were returning to visit old friends. Everyone here is so amazingly wonderful, which really goes a long way in making the treatment more tolerable. I saw Dr. Hong (he is the Fellow on call tonight) earlier and he said they were going to push even harder this time because I'll have more time to recover before I have to do it again. Now, I only have to do this again if the scan shows that it's working, so after he said that, I said, "That's right!  We'll be doing it again because it's working!" And Dr. Hong said that the white blood cell activity they saw in my blood work from round one (in response to the IL-2) looked very promising and he is hopeful that it's working. I told him that my pancreas pain is gone and he said that is also a very good sign. Fingers crossed! I'm ready to push it however far they want to this time. I trust they will stop when it's necessary. I can take it. I am ready. I will be cancer free soon, I just know it.

Not too much has happened so far. We got here around 6:00pm, went to Admissions, and then came up to the unit. We unpacked and set up the room. Christine (the nurse with the baby one week older than Kai) was my nurse for 10 minutes - it was great to see her because she works part time and won't be back until Thursday (and who knows what state I'll be in by then). She told me that Caitlin, the charge nurse, really pushed for me to have a private room. I really appreciate that. After Christine left, Frank came in to take my vital signs, including weight and height. While I won't say what those were exactly, I will say my weight was the same as it was when I started round one, which is good because it means I lost all of the almost 30 pounds of fluid from last time. After that Jeff and I ate dinner (he went out and got us something because the cafeteria is closed since it's a holiday). When we got back to the room, my nurse for tonight, Danielle, came in to check my PICC line, take blood, and set up the pre-medications I'll start getting at 10:00pm. At 10:00pm they will hook me up to the IV, give me something to help me sleep, and then we begin the dosing at 7:00am (so I have to keep this short because it is 9:55pm now). I am all reved up and ready to begin. While I am sad to be away from baby Kai, I am ready to be one step closer to being cured. I just know that this is working. I think the universe decided I had some lessons to learn and gave me the gift of this journey through which to learn them. Hopefully, I am recognizing these lessons and will lead a much richer life because of them.

Today I am thankful for all of the wonderful people at the Clinical Center; my mom who is lovingly caring for baby Kai; all of the delicious food from our MMG family; my fabulous private room; the amendment to the spending-cut bill that spared NIH the proposed $1billion+ in budget cuts (I am thankful for this with my life); my amazing family and friends; and, as always, my absolutely wonderful husband Jeff and perfect baby Kai. Sleep well, little one, and know that I will be dreaming of your sweet face every night until I see you again.

February 20

It has been a wonderful week of healing, resting, and reconnecting. I am feeling great – strong and ready to face round two.  We go back to the Clinical Center tomorrow.  I will get the first dose of round two on Tuesday morning at 7:00am. I am interested to see what happens this time.  Dr. Schaub said to expect the same symptoms as last time, since it’s the same treatment, my body should react basically the same way. I hope that’s true. As horrible as the side effects were, my lab values, blood work, and organ functions remained perfect through the entire treatment last time and that’s what I hope for again this time. When I swell up from water weight again, I will be thankful that my body is carrying the fluid outside of my organs.  It may be uncomfortable and ridiculous looking, but it’s not harmful. And on my 15^th trip to the bathroom each day, I will be thankful that my kidneys are functioning properly and that the dosing can continue. The doctors said that it will probably take fewer doses this time to elicit the same response, so I am hopeful that my hospital stay will be shorter this time.  But if it’s not, then I will be thankful I received as many doses as possible. Since staring the first round of the IL-2, I have not had any pain from the tumor in my pancreas. I had been having that pain for months, so not having it is significant to me. I think it means the tumor is gone. I have no science to back that up, and when I suggested it (only partially joking) to Dr. Schaub, he laughed slightly at my naiveness. But this is cancer we’re talking about.  Nobody knows exactly how it will respond and I believe that my scan in 5 weeks will show no tumors and we will be done with this. While I’m not looking forward to facing round two, I know now how quickly I can bounce back and I think that will be a great solace during the worst of the side effects. I am not afraid to do it again. I am fascinated but the obscurity of this treatment and I am extremely interested to see how I will react this time. Also, I trust my doctors and I know how closely they will be monitoring my care. I have only one real concern this time and that is around having a roommate during the worst of the IL-2. Last time I was extremely lucky and only had roommates in the beginning and at the end when I was recovering. I was lucky to have the room to myself during the worst days. I am hoping with all my might to be this lucky again – for my sake and honestly for the potential roommate’s sake too. If that wasn’t luck, and it was by design, then I am extremely thankful to the Clinical Center staff for that. Also, I am thankful that this is the worst physical pain I have had to endure in my life so far. Humans have an amazing ability to overcome and survive. Millions and millions of people have suffered physical torture on levels so far above anything I have ever come close to even in my worst nightmares. It is this suffering I will remember anytime I want to complain about my own. There are literally millions of people who would trade places with me in a heartbeat if this is the worst of my pain. I am thankful this is all I have to endure; I consider myself extremely lucky in life. This is nothing compared to the burdens of others and I will remember that every second of round two.

Baby Kai has slept through the night every night this week. And I’m not talking about 5-6 straight hours.  I’m talking about nights of sleeping 9:00pm – 5:00am, and 10:00pm – 6:00am.  The past two mornings he has awoken around 5:00am to eat and then has quickly gone back down until 8:00am. Also, he is napping in his crib as I write this. I had nothing to do with this. He did this all on his own. He heard me say the words “sleeping training” and he did it himself – he said, “No worries mommy, I got this.” He amazes me every day. I cannot even imagine a better baby.  There is absolutely nothing about him I would change. The same goes for my husband. Every day I realize how in love with Jeff I am. He is the most wonderful, supportive, caring man and I cannot believe how lucky I am to be married to him. I think so far in this journey, the lesson I am most thankful for is to not take anything (especially people) for granted; to cherish every act of love and kindness; to forget the little things and always remain focused on the greater love that surrounds me. I think it’s too easy to take our partners for granted. They are there with us every day and we just expect it to be that way. We forget to nurture and to surprise and to take a few minutes just to be in love. I vow to you Jeff that I will never take you for granted. I will always remember how incredibly wonderful you are. And I will spend the rest of my life trying to mirror the love and support you are showing me now. I will remain thankful for you always and I will remember each day how lucky I am to have you as my partner in life.

My mother- and father-in-law left today to go back home to New Mexico. We will all miss them greatly, especially baby Kai who had a wonderful 2 weeks bonding with his grandparents. They were a great help and we appreciate every day they spent with us. My mom is on her way back down now. It’s a changing of the guard because we can’t do this alone. She will be here approximately 2 weeks, or however long it takes me to recover from round two. We absolutely could not do this without the support of our family. Knowing that baby Kai is being perfectly cared for during the days we are at the Clinical Center is such a relief. And it’s fantastic for him too – no daycare and extra time with grandparents – exciting!

We haven’t done much this week. The weather was beautiful so we took some walks around town. On Friday we went to the Clinical Center to get the dressing on my PICC line changed. Otherwise, we just hung out at home, enjoying our week together as a family. I’m looking forward to the month between round two and the scan that shows the tumors are gone (after which we will do the IL-2 for rounds three and four). Just a few shorts days of treatment and then a month home with the baby. I will try to post tomorrow from the Clinical Center.  If I can’t, it is only because I can’t get online. I got a new laptop, so we’re hoping it’s easier to get the NIH wireless. My next few posts will be from the hospital, during treatment. I will post as much as possible like last time, but I have no idea how many doses I will get this time or how long I will be there. Maybe one dose will do it, or maybe another ten. We shall see…

Today I am thankful for the circle of hope and love that the neighbors have created around our house. Our neighbors on either side of us, plus the four in a row directly across the street all have melanoma support signs in their yards. It makes me feel like our house is nestled safely in a big hug of hope and for that I am thankful. I am also thankful for our wonderful family – Don and Diane who have cared for us the past 2 weeks, my mom who will care for us the next 2 weeks, and my dad who calls me almost every day and even text messages me in the hospital. I am thankful for all of the well wishes of support for round two from my amazing friends and MMG family; a great visit from Donna; Dr. Thambi, my medical oncologist, who called me on Friday just to see how I was doing; the gift of knowledge about what to expect this time; the dedication and care of my NCI doctors; and, as always, my fabulous husband Jeff and most perfect baby Kai. I can’t wait to see what you’ll learn this week, my sweet. While I will miss you terribly, I know this time that you will not forget me and we will pick up where we left off in just a few days.

February 16

Baby Kai took his 4-month shots like a champ.  He screamed for a minute and then went to sleep.  He’s been a little fussy all day, but has been trying to smile as much as possible. Today I learn from him. Yesterday was my day of fussiness, but then I put myself to sleep and today I smile again. So here’s what I learned yesterday through the sadness of thinking about Kai not knowing how much I love him: I learned that I should make absolutely certain that the people I love, the people who mean so much to me, the friends I cherish, all know just how very much I care about them. I think it’s easy to think that other people know what you’re feeling, or to feel foolish expressing affection. But the thing is, people don’t always know, or they may know you care but not always just how much. I realize that I have let friendships that are extremely important to me, friendships that have helped define who I am today, slip by the wayside of everyday life. Now, I am being shown an overwhelming amount of love and support from some of these same friends and I realize that I need to be better about supporting people I love every day. I have always just assumed that past bonds would be enough for people to know that I still care, without the need to reaffirm or take time out of a busy day just to drop a line letting people know I’m thinking of them. I realize that I have taken many relationships for granted.  And while I have learned, through this amazing journey, that love does persevere over years and miles, it is so important to make sure people know how much you love, care about, and appreciate them. So I vow to make sure that people who I love, people who I appreciate, people who I care about and support know how truly grateful I am that they are in my life. Because things left unsaid can be the greatest regret of all.

I’ve gotten off track with the clinical trial information since I’ve been home, so I thought I would try to explain the IL-2 trial tonight. IL-2 (or intereukin-2, aka aldesleukin) is a substance naturally produced in the body during an immune response. When foreign substances (illness, tumor) gain access to the body, they are recognized as foreign by antigen receptors that are expressed on the surface of lymphocytes. Antigen binding to T cell receptors stimulate the secretion of IL-2, which then stimulates the growth, differentiation, and survival of T cells that recognize these foreign substances. So basically, IL-2 causes boosts to your immune system by helping your T cells recognize disease as a foreign substance. Because melanoma can be recognized by the body as a foreign substance, and your immune system can fight it as such, giving high doses of IL-2 as an added immune-boost can help your body recognize and fight melanoma tumors. IL-2 is an FDA-approved treatment for melanoma.  It is not an experimental treatment. It only works to shrink tumors in melanoma 15 percent of the time, so it’s not a great option, but it’s one of the few there are and deserves a try.  The clinical trial aspect of this treatment is that researchers aren’t sure how IL-2 works to shrink tumors. So, I am allowing NCI researchers to take my blood and study it, use it in experiments, and in exchange, they are treating me with IL-2. This was not the trial I first talked about. The bigger trial is the TIL cell treatment. The TIL cell treatment is not FDA-approved; it is experimental treatment. They harvested cells from my liver during the in-hospital biopsy 2 weeks ago, and they are in the process of trying to replicate these cells into a new immune army for me. But in the meantime, instead of sitting around waiting to see if the cells will grow, we are trying the IL-2. Best case scenario would be that the IL-2 works and my new cells grow.  Then they would freeze my new cells and save them in case the cancer progresses years from now. So right now, I am involved in a clinical trial for the IL-2, but it is not an experimental treatment.  I could get this treatment outside of NCI, but getting it from NCI allows researchers to study me to learn about how the treatment works, which will hopefully lead to better treatment in the future for other people with melanoma. Clinical trials are extremely important.  They are the only way researchers learn about disease and new treatments to combat disease. If it weren’t for clinical trials, we would have no new medications or treatments.  Industry statistics show that the vast majority of people with cancer are never even told that they have the option to take part in research and thereby gain access to new and potentially life-saving treatments. While NCI is the most well-known treatment center, there are numerous clinical trials sponsored by pharmaceutical companies that offer options and hope just the same. But you can’t join one if you don’t know it exists. So my request is this, if you know someone who suffers from cancer (or another disease), please tell them about clinical trials, please tell them about NCI, please tell them about hope.

Today I am thankful for the health of baby Kai who now weighs 14.17lbs and is 25 inches long; all of the wonderful, amazing people I am lucky enough to call my friends; the continued love and support of my loving family; and, as always, my incredible sweet Jeff and my perfect baby Kai. Thank you for teaching me a lesson today, sweet baby. I too will remember to smile as much as possible through the fussiness.

February 15

Well last night the baby slept from 9:00pm until 5:00am.  Sleep training accomplished, I guess my work there is done. Ha - I will, of course, eat those words around 3:00am tonight, but for now we'll pretend it's true. Another restful day at home. I'm feeling better every day. Tomorrow we have baby Kai's 4-month doctor's appointment, including his second round of vaccinations.  I think tomorrow he may be feeling worse than I am, poor baby. Every day I am astounded by how much I love him. Every time I look at him, my love for him wells up and overflows into a joy that is almost painful. Yesterday, he was in his swing napping, and I was sitting on the couch stroking a little toy that he has - a little blue blanket with a stuffed bear's head and arms and on the blanket the words "my mommy thinks I'm amazing" are embroidered. And while I was sitting there, watching him sleep peacefully in his swing, I thought that there is a chance that he will never know how true those words are. If these treatments don't work (but of course they will, they will, they will), then Kai will never know how much I love him. He won't even remember me. All of this overflowing absolute love that I feel for him every second, all of the smiles and laughs that he gives me, all of the snuggles and kisses we share, everything that has become my world, he will not remember. And it is this thought that haunts me during the weaker times. It is this possibility that I cannot bear. As much as I can say over and over again that everything is going to work out perfectly and soon this will all be a distant memory, the thought that my sweet baby might grow up and live his whole life not knowing this amazing love that I feel for him, not knowing me at all, causes a pain that is so blinding that I cannot conceive that it could even be a possibility. I am not worried about the treatments not working for myself. I am terrified of them not working because I cannot, I will not, leave my son.  He deserves to know this love I have for him. He deserves to understand that he is the center of my world. He deserves a mother who loves him more than life itself.

Even though this is a week of healing and regaining strength, it is difficult to not be doing anything. I am anxious to start the second round of treatment - to continue fighting. And I am looking forward to the month of healing afterwards, although I imagine it will be incredibility difficult to wait that month to find out the results of the scans (to see if the IL-2 is working). For this to be behind us, we have to continue on, and I am impatient in the pause. My sweet Jeff keeps reminding me over and over that we are going to beat this. I tell myself every day how lucky I am to have so many possibilities. I think about Dr. Phan's and Dr. Schaub's hopefulness when they told us that my blood work looks favorable for the IL-2 and that my new cells appear to be growing. But some days aren't as bright as others, and today even cookies couldn't keep away my fears.

Today I am thankful for visits from Renee and Helen; the continued support, love, and yummy foods from our MMG family; the now four neighbors with melanoma support signs in their yards that scream "HOPE" every time I look out the window; all of the chores, errands, and help provided by Jeff's parents; the sun that will shine brightly tomorrow; and as always, my wonderful husband Jeff and my precious baby Kai. I will not leave you, little one, that is something that I cannot do.