Sunday, February 27, 2011

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 4th 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 5th 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:

Friday, February 25, 2011

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.

Wednesday, February 23, 2011

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.

Monday, February 21, 2011

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.

Sunday, February 20, 2011

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 15th 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.

Wednesday, February 16, 2011

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.

Tuesday, February 15, 2011

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.

Sunday, February 13, 2011

February 13

I'm feeling better and better each day. Other than feeling exhausted all the time and my skin still itching and peeling, I'm feeling pretty good. It's amazing what the body can do. I have no doubt that, at this rate, I will be more than ready for the battle of round two. My baby turned 4 months old today. It's incredible to see him grow, physically and mentally. He's such a smilely happy baby, we are so lucky he has such a natrually sweet disposition. We should be starting sleep training this week, and I have high hopes that we might at least begin, but I can see already that he's inherited my inane stuborness and today for nap (in the crib rather than the swing), in the battle of mom versus baby - baby won. Seems like he's going through enough with all of the changes as it is; if baby Kai wants to nap in my arms, well I'm not going to complain about that.  Every second I get with him now is another second to take with me next week when we'll be apart again.

This weekend has just been a restful weekend, regaining strength and getting back to feeling semi normal. Jeff's parents are still with us (and will be until next Sunday) and my dad and step-mom were here for the weekend too. Today we even went for a walk outside with the baby, which was great. We got to see some of our neighbors, which did a lot for making me feel like a normal member of society, and we walked up to the main part of town.  It's weird to be out among "normal" people. I feel like I don't really belong. Now that the treatments have begun, I feel more like a patient and less like a person. But that's okay because the patient part will end (soon, since the IL-2 will work) and the person part will be reborn.  People who have suffered from cancer often talk about celebrating two birthdays for the rest of their lives - the day they were born and the day they were told they were disease free. I can understand that feeling. After I am cured, I know it will feel like I have a second chance at life. I know I will be a different person from this experience. I will be reborn.  And for this second life, I will remember how precious every moment is and I will make the most of the time I am given.

I don't have a lot to talk about today. I'm just resting at home, enjoying my time before returning to the Clinical Center. But I wanted to post so all would know I am okay. Today I am thankful for the warm weather that allowed us a walk outside; my extremely supportive neighbors; all of the delicious food people are loving preparing for us; my wonderful family and friends; and, as always, my incredible husband and perfect baby Kai. You may have won today, my love, but I am a mommy first and foremost, and by the end of this week, you will be napping in your crib. And if not, well then, surely the week after that.......

Friday, February 11, 2011

February 11

I am home. Sweet, wonderful, glorious home. My baby is huge. He looks like he ate the baby I left and became super baby.  I can't believe how much bigger and older he seems after not seeing him for a week. I am so happy to be back with him and my sweet Jeff again. I can't even think about leaving again in 10 days. I have to just take each of these days as the gift that it is and cherish all the time I have. I walked in to a sparkling clean house thanks to my Uncle Bruce and my mother-in-law.  It's was so fabulous to come home to such a clean space after feeling dirty and germy in the hospital for the past week. I am so thankful they took the time to make everything so perfect for my return. I also came home to more care presents from work; numerous packages from friends for us and for baby Kai; a plethora of motivating, uplifting cards; and a melanoma support sign in our neighbor's yard. I continue to be blown away by the amount of care and love that I am receiving from everyone. I just can't express how appreciative I am for all the time people are taking out of their precious lives to support me.  It really means the world to me and gives me the strength I need to continue to fight each day. 

Three wonderful things happened yesterday. First, and most importantly, baby Kai rolled over! I didn't see it of course, by his grandparents did and we're all very proud of our little man. Secondly, Drs. Schaub and Phan both told us that they saw elevated white blood cell activity in my blood. This is a good thing, because the whole point of the IL-2 treatment is to stimulate my immune system to rage a war against every foreign substance in my body. They said that, while there is no data to prove correlation, anecdotaly the majority of people who respond to IL-2 show the same activity in white blood cells that my blood is showing now and they are hopeful that I will show a response to the treatment. FABULOUS! Thirdly, Dr. Schaub said that it's too early to tell officially, but it looks like my new cells are growing for the TIL treatment! So right now, I have three good options - maybe I will respond to the IL-2 and won't need anything else, but if I don't, the new cells are looking promising for the TIL, and we still have the BRAF-dependant treatment to consider as well.  I am filled with so much hope right now. I am so thankful that we seem to have a number of good options ahead of us. We are so very lucky to be where we are. So many people who suffer from melanoma don't have this many possibilities. Everything just keeps coming up in our favor and I feel so filled with joy and fortune to be in this position. I will go through a never-ending number of treatments to live to see my son grow up.

Recovering from this past round of IL-2 is going to take some time. I'm not sure I will feel better before I go back for the second stage. Mainly I am extremely fatigued and the skin on my face, chest, and back is peeling, sore, and itchy. My body feels like it's been through battle. It hurts to keep my eyes open. Now that I'm home, I want to just go about life as usual - caring for baby Kai, doing everyday chores, etc. But I can't. I am going to have to accept this healing time. Learning to be still is one of the lessons this journey will teach me.  Last night, my nurse lifted up the back of my shirt to help me put on lotion and she said, and I quote, "Girlfriend, if I had this situation going on, I would be such a bitch." While that was hilarious, it also made me think about the choices I make regarding emotions in my daily life. Of course many emotional responses are instantaneous and happen without putting much thought into them, like sorrow, and disappointment, and joy. But it's also true that I actively choose to have negative emotions each day. Every time someone cuts me off on the beltway, or takes too long checking me out at CVS, or gives me too many automated phone options before I can speak to a person, I am annoyed, frustrated, and even angry. So now I am dealing with the thing that is making me angry, plus the anger on top of it. And this is a choice I am making. There is no reason I have to have an immediate negative reaction.  There are many days when I'm in a particularly good mood where an instance doesn't bother me as much as it does another time, because that day I am choosing not to be upset. And I am realizing, during this journey, that the more I am able to focus on the big picture, remembering what is really important in my life (family, friends, and love), the less I care about mundane annoyances and the happier I am in general. So I will carry this lesson with me. I will remember always that my overall happiness is so much bigger than what might be happening at any given moment. From now on, if I'm angry driving I will be thankful to be driving home from work  because that means my treatment was successful; if I am waiting in line I will be thankful I am well enough to run errands; and if I am on hold too long I will be thankful that I am lucky enough to be the recipient of whatever luxury service I am calling about. I will roll with the punches and give thanks I am here to experience them at all. Because when it comes down to it, that's what I am fighting for. I am fighting for the chance to experience each new day and the unique opportunities each day represents, and if I forget that, well than I haven't learned anything at all.

Today I am extremely thankful for the fantastic care I received at the Clinical Center. I have come to think of the doctors and nurses as my friends. I love learning about their lives outside of the hospital and they show genuine interest in mine. While I can't say I'm looking forward to the pain of round two of the IL-2 treatment, because of Dr. Schaub, Dr. Phan, and Dr. Hong and all of the other wonderful doctors who are trying so hard to cure me; and because of Christine, Jesse, Candis, Erin, and Ann, and all of the other fabulous nurses who do everything within their power to ease the pain and remind me I am a person, I am not afraid to do it again. I know that I have so many strong, dedicated, caring people who are fighting this fight with me and who will, without a doubt, cure me. And for that I am thankful. I am also thankful for every single response posted to this blog; each card and gift of support I receive; the continual overwhelming support of my MMG family; the fabulous night's sleep I am about to have with nobody coming in to take my vital signs; my mother- and father-in-law for taking care of the baby and so much more while I was in the hospital; my wonderful family and friends; and, as always, my absolutely perfect husband and my most precious baby Kai. Words cannot express how happy I am to have you in my arms again. For such a little one, you are the whole world to me.

Wednesday, February 9, 2011

February 9

I'm not sure there are words to accurately describe what just happened. The best I can say is that Mr. Dante, sir, your very vivid portrayal of hell's seven layers was incomplete.  There is an eighth layer of hell and it's name is IL-2. The steady, painful but manageable, descent of doses 1 through 9 ended in a complete skull-shattering breakage of self at dose 10. On the way down, I knew it was uncomfortable, I was throwing up, I had massive chills and shakes, had unholy amounts of diarrhea, and gained over 20 pound of water weight in 2 days (the best way to describe that was that it looked like I was wearing fat makeup for a movie - I was unrecognizable).  But still the same, I had the audacity to ask Jeff how anyone would be able to say they wanted to stop the dosing, knowing that the dosing might save your life.  And then I hit dose 10. It didn't matter if I had wanted to continue, the doctors wouldn't have let me.  They were on the fence about the tenth dose and afterwards there was no question about continuing. The next few days (Sunday through this morning) are only flashes.  I cannot piece together a timeline and in some cases I'm not sure what is real and what were hallucinations.  I'll start with the facts. After the tenth dose, it felt like I fell to the bottom of a dark, lonely pit and smashed into 1,000 tiny pieces. The worst was the headache. It felt like my skull was splitting open every time I opened my eyes. I was only able to open my eyes a few times a day, while I was fading back and forth from wake to sleep.  I also had a terrible soar throat, which made drinking next to impossible. When my eyes were open, I was hallucinating.  First I saw hundreds of little brown insects flying around my room and crawling all over the curtains.  I also saw hoofed, antlered animals walking back and forth on the other side of my curtain. I saw tree branches growing out of everyones' heads, I saw words and math equations scribbled all over the walls, I saw flashes of lightening going off continually.  When my eyes were closed, I didn't know where I was or who was in my room with me. I saw full episodes of TV shows that have never existed.  I thought we were at the ballet, in a dark auditorium filled with people.  I heard voices talking all the time and I have no idea which were real and which were not. Physically, I couldn't lift or move my head without excruciating pain. The slightest movement made me nauseous. I knowingly soiled myself at least six times (to the point where the diarrhea was being treated with opium). At one point, I was laying on the floor with my head in a bucket. There are itchy sores all over my body and my face looks (and feels) like someone ran a cheese grater over it. I couldn't stand any amount of light or noise. My poor sweet Jeff, sat by my side, in the dark, for 15 hours a day. My cousin, Jason, came to visit Monday and all I remember is that he hugged me when he came and when he left. I could hardly talk, I couldn't look at or read anything, and even hearing things made me feel sick. I thought I was broken. This morning, when I opened my eyes, the only reason I didn't let out a scream of utter pain and terror from the torture inside my head was because I was physically unable to make sound. The nurse who was taking my vitals looked at me and said, "okay that is enough, you have had enough." She then called the Fellow on call (Fellow as in research Fellow - between resident and attending physician - not as in "for she's a jolly good one") and got me some headache-curing ambrosia.  Since taking that (and blowing out 10 tissues full of blood), I have been feeling much better and am crawling my way back up to the top of this pit, with the terrifying knowledge that I am going to have to do this all over again in about a week.

The way that I felt was indescribably terrible, but it was not dangerous.  The doctors and nurses were monitoring me constantly to ensure that my blood levels, organ functions, and mental capacity were sound. They came every 4 hours to take my vital signs, and came almost as often to ask me math equations and to spell words backwards to check for mental capacity. During the days that were mainly flashes, I have distinct memories of Dr. Hong (another Fellow) coming in to ask me to count down by sevens from 100 and to spell "world" and "nurse" backwards). Dr. Hong even called Jeff at home after the 9th dose (which was around 11:30pm on Saturday night) to tell him that they would probably go ahead with the 10th dose Sunday morning, but that would be it. They took a very large amounts of blood (sometimes up to 15 vials at once) to use for my treatment and for research purposes.  I had continual IV drips of anti-nausea, anti-diarrhea, saline, and other fluids. The care was phenomenal, from the doctors, but especially from the nurses who I saw much more often. They knew exactly the right tone of voice, when not to turn on a light, how to take blood and change IV medications without waking me up, when to come in just to say hello and ask how I was feeling.  Even nurses who weren't assigned to me at the moment would come in to say hello - like Christine, the woman with the baby one week older than Kai. So far, the care I have received here has made me feel like I am nestled safely in a healing hug.

Just so I am not too biased, I will point out three things that seemed to go "wrong." First, we were told that all of the "feel better" IV drugs would stay for 24 hours after the last dose of IL-2. That didn't happen, they were removed almost immediately. Second, one of the weekend nights I ran out of toilet paper and after a 2-hour search, the nurse came back with a box of tissues. Now I appreciate the improvisation, and really there's not that much difference between the two, but if your diarrhea is bad enough to be treated by opium, a box of tissues is not going to do it.  It seems strange how difficult it is for the nurses to find everyday housekeeping items, such as toilet paper, after hours. Thirdly, during one of the hazy days an X-Ray was ordered for me accidentally, which may not seem like a big deal, but meant numerous people talking loudly in my room, with all of the lights on, all moving me this way and that to get me on the X-Ray board. After they had finished, someone yelled down the hall, "Whoops, wrong patient." That was the incident that led to me laying on the floor with my head in a bucket after soiling the bed. Things happen, I am not complaining, I am just trying to give an accurate description of my experience. And as horrible as this treatment was, I would not undo it, because it could be my cure.

My sweet, sweet Jeff has been a godsend. Not only has he been caring for me 15 hours a day, he has also been dealing with a broken heater and dishwasher at the house, coordinating everything with the baby, and even doing work from home. His constant love and support have been the lifesaver that has gently pulled me out of this seemingly bottomless pit to lay me lovingly on the hope-filled ground above. In all the years that we will have together, in all of the times I will be there for you, for this I can never repay you. You are my heart, you are my soul, my are my every breath.

Today is Wednesday.  I came here this past Thursday.  That means I have not seen my precious baby Kai in six days. We thought about bringing him today, but I was not yet well enough.  Maybe tomorrow. I know he is in good hands - Jeff's parents are lovingly caring for him night and day.  But I am so afraid that he has forgotten me. A week is a long time to such a little baby.  What if he doesn't know who I am when I get home, or worse, what if he doesn't care. It feels like we have been apart for months. The longing I feel for him is tangibly painful. I am nervous and excited to see him both at once. Excited, because he is my angel and I cannot wait to hold him. Nervous because I am so scared that I won't see any recognition in his eyes when he looks at me. I can only hope that the bond we have is strong enough to carry us through this week together and that, on some level, he holds me somewhere in his heart just like I do him.

So I'm on the ascent back up now. I will probably be able to go home Friday. I cannot wait to sleep in my own bed, shower in my own shower, and hug my baby with all my might.  I have to come back the 21st to do this all again.  I honestly do not know how I am going to find the strength to do this again, knowing what I know now. Of course I will do it - it could cure me - I will do anything to make sure my baby has a mother. But I will certainly enter the hospital with a heavier heart for round two. This week I will work on focusing on the curing aspects of this treatment. I will be thankful everyday that I have the opportunity to receive this care. I will take the nurses' healing hug with me so I can return in it ready to fight again. I will hold my baby, I will kiss my husband, I will visit with my family, I will talk to my friends, and I will eat cookies.  And then I will come back and kick some IL-2 ass all over again.

Today I am thankful for the comfortable tempurpedic hospital beds; the caring doctors and nurses at NCI; my mother- and father-in-law for taking care of Kai; our wonderful family and friends; my absolutely perfect husband to whom I am forever indebted; and my sweet precious baby Kai. Please know that I will be home soon.  Please know that every ounce of my being longs to be with you.  Please know that our time apart now means so much more time together later. And please know how lucky I feel to get to be your mother.

Sunday, February 6, 2011

February 6

I'm about to receive dose 9. I'm hoping to get at least 10 because that would be four days and Dr. Schaub said hardly anyone goes to four days. I take that challenge, sir. It's getting a lot harder to take. My eyes are almost swollen shut and it hurts to keep them open. So this is just another quick post to say that I am okay. Today I am thankful for life.

Saturday, February 5, 2011

February 5

I've had 5 doses so far, the 6th is coming at 11:00. All will be okay, but I cannot post today.

Friday, February 4, 2011

February 4

Today we started the IL-2.  I got the first dose at 7:00am. About 9:00 I started having a few minor symptoms: fatigue, feeling feverish, and a little shortness of breath (which went away before the second dose began).  The first dose wasn't too bad at all.  Not nearly as terrible as I expected - of course the treatment is cumulative, so theoretically the first dose should be the easiest and it will become worse from here. The second dose started at 3:00 (it is a 30 minute infusion drip every 8 hours). By about 4:30, I started feeling the compounded syptoms from that dose: severe chills and shakes (the chills felt like the inside of my body was cold, not like a normal shiver where you get goose bumps on your skin, but rather a full internal wave of coldness - a very strange sensation).  The nurse gave me Demerol for those symptoms along with a medication to counteract the nausea effect of the Demerol. The Demoral worked, but the anti-nausea not as well. I threw up a few times and my fatigue is compounded. I also have a fever of 101.5, even with taking Tylenol every 4 hours and getting an IV drip of another fever-reducing agent. I am not feeling so great right now - extremely hot from the fever, a little nauseaus, and extremely tired.  But it's still a lot better than I expected and I'm glad I can continue on to another dose (which I will get at 11:00 tonight).  This time I'm prepared for the chills, shakes, and nausea, so we'll see what new symptoms we get to add to the list this time. Considering the average number of doses is seven, after tonight's dose, I'll be just about halfway finished. The most it can be is 2-3 more days.  I've had food poisioning four times and, more recently, a 42-hour labor - I think I can last 2 more days (I hope I'm not testing fate with those words), but of course I am saying that with zero personal knowledge about how bad it's going to get. We shall see, we shall see. I am thankful that we get to continue on and find out.

Something that we realized today, after speaking with Dr. Schaub, is that I may have been experiencing cancer pain for the last few months.  I have been having pains (like a severe discomfort, not like shooting pains) in my uppper abdomen, right where my pancreas is.  The start there and then radiate out through my upper back. When I was trying to breastfeed baby Kai, we  had some issues and I lost my milk supply.  I was taking a perscription medication called Reglan for help with lactation.  The purpose of Reglan is to treat gastroinestional disorders, but it has a side effect of increasing lactation, so it is perscribed off lable for that.  Anyway, I just figured it was doing something crazy to my digestive system since that was it's real intention and didn't think much about it.  But the pain has been getting steadily worse over time and Dr. Schaub thinks it might be due to the tumor in my pancreas.  So I guess I am feeling some of the affects of the cancer after all. But I'm happy that's all I'm feeling, and am still otherwise healthy.

Jeff is being absolutely incredible. He stays by my side all day long.  He was here for 12 hours today just sitting with me, waiting on me, and making sure I was receiving the best care possible. This experience has brought our relationship to a whole new level.  It was already amazingly strong, but now there is no doubt that there is nothing in this world that can break us. We can do this, we can do anything. I am so thankful for you, my wonderful husband, and your constant love and devotion.  I could not do this without you.

I am not feeling well tonight, but wanted to least give an update.  I will contiue to try to post daily, but I may not be able to depending on how bad the IL-2 symptoms become. If I can't continue, I will catch up on the other side of this treatment. I know I haven't been very good about returning e-mails and Facebook messages and phone calls, and I apologize for that, but know that I am getting all of the wonderfully supportive messages and they really do mean the world to me. I am thankful for every single one of them.

Today I am thankful for the sickness that will make me better; the amount of time that baby Kai is getting to spend with his grandparents who are caring for him through this chaotic time; the plethora of pain- and side effect-controlling medications that I am getting; my wonderful family and friends; and as always my amazing husband and perfect baby Kai.  I miss you little one, but I know you are and have been in good hands. I will see you in a few days and, more importantly, I will see you years from now.

February 3

I'm back at the Clinical Center, all hooked up and ready to go (literally). We got here this morning at 8:00.  First, we checked in at Admissions. From there I went to the special procedures unit on the third floor to have the PICC line (a long-term IV that goes in a vein in my left arm, up my arm, accross my neck, and down towards my heart) inserted. The nurse who inserted the PICC line was hilarious. He made jokes the entire hour he was with us. It sounds silly to say, but the PICC line was the thing I was most nervous about.  I'm not sure why, but I was afraid it was going to hurt.  It didn't.  I hardly felt anything - just kind of a weird pressure sensation as the line snaked through my vein.  After the line was inserted, we went to my unit (also on the third floor) to check in.  My room wasn't ready yet, so we went down to the lobby to wait (we could have waited in the family room on the unit, but there's more action in the lobby so we like to sit down there).  Since this seems to be a play-by-play of my day, I had a bagel and a latte in the lobby (I couldn't eat this morning in preperation for the PICC line insertion so I was starving by then). After my bed was ready, we unpacked and set up and then went down to radiology for an MRI of my brain and abdomen. These were two seperate tests (both of them with and without contrast), so the entire time I was in the MRI was about 1.5 hours. Thankfully, I am not claustraphobic. After the MRI, back up to my room to sign the informed consent document for the treatment.  Then they said that we could go out to dinner and come back if we wanted to, so we went home to see the baby.  Also, Jeff's parents arrived tonight, so it was great to see them (since I thought I wouldn't see them until I get home about a week from now).  So we played with the baby for a few hours and then came back so we could begin the pre-medications. I had Tylenol, benedryl, and Ambien as pills.  Through my IV, I had an antibiotic, Zantac, and hydrating fluid. I believe I'll be getting meds every 4 hours from now on.  They begin the IL-2 at 7:00am tomorrow morning.  It is a half hour infusion every 8 hours for as long as I can tolerate it (maximum of 4 days). Cathy, my research nurse, said that the average dose amount is 7 doses, which would be 56 hours (or about 3 days). I'm interested to see how many doses I get.  I'm interested to see what side effects I experience. The range of possibilities is huge, so I really have no good way of knowing before I start.  Dr. Schaub said that it will take a few hours after the first dose until I start to feel it, so that means I have about 12 hours from now until who knows what happens to me. What I've heard most commonly from others who have gone through IL-2, is a feeling like a very bad flu - nausea, vomitting, diarreah, headache, chills, shakes, and Dr. Schaub said a fever of 105 if they weren't controlling it with fever-reducing medications. Other fairly common side effects include extremely low blood pressure (which is a concern for me since my blood pressure is already low), and kidney problems. The one thing Dr. Schaub said happens to everyone is a weight gain of approximately 20 pounds in fluid all throughout the body (of course I get the one cancer treatment where you gain weight.....). I'm not worried about the symptoms.  They have medications to help make them tolerable and they will be monitoring me constantly.  I'm more interested to see what happens, to see how my body handles this craziness. I feel like I'm preparing for battle. The troops are ready.  Bring it!

One big difference between procedures at the Clinical Center and those at a private hospital is the level of detail in which they explain each and every thing they do. Because I am taking part in a clinical study, I have to formally consent in writing to every procedure.  So each time I have a procedure or get a test done, the person administiring the procedure explains the process in detail and advises me of any risks.  I then have to sign a consent form before the procedure can be performed. At a private hospital, at least in my experience, the just wheel you from place to place and do things to your person with hardly any explanation at all. Not that that's necessarily a bad thing - if you are having a procedure at a private hospital, you can assume in good faith that it's medically necessary and the benefits with outweigh the risks. But before participating in research, I never even thought about how little previous medical procedures were explained to me. This fits with what I was saying before about how I really feel like a person rather than a patient here, like an active participant in my health and in this research. The more I am spoken to as an active participant, an intelligent person, a decision maker; the greater the responsibility I feel to be informed and the more questions I ask, which keeps the circle of partnership swirling and reinforces my ownership of and control over this cancer. I am thankful for the partnership that is created, I am thankful for the chance to be an active participant in my cure.

It is interesting how you see familiar things differently when you experience them through new eyes. Jeff comes to the Clinical Center reguraly for meetings (MMG supports patient recruitment for clinical trials for a number of institutes of the National Institutes of Health) and he said today, while we were waiting in the lobby, that he never before noticed how many of the people in the building are patients. Because he was coming for business, he assumed that most of the people he saw were NIH staff or other contractors. Many of the patients are not obviously patients. You have to take a good look to notice their casual clothes, extended visitor badges (which are for patients and long-term visitors of patients), hospital ID bracelets, semi-permanement medical equipment (like my PICC line), etc. But now, since he's seeing the building through the eyes of the husband of a patient, rather than a contractor, he automatically focuses in on all of the patients and sees the building from their perspective. It's interesting how a little shift in perspective can make something familiar seem like a brand new place. Along the same lines, since having the baby and using the stroller, I've noticed how almost completely un-wheelchair-friendly Takoma Park (my town) is. I can't go into any of the little shops or the drug store with the stroller because the aisles are too narrow.  It's not a huge deal for me, because I can take him in the baby carrier instead, but it did make me realize what a dificult time someone in a wheelchair would have in our neighborhood. And I never would have noticed that if I hadn't had to experience it somewhat for myself. I think people tend to view the world through self-centric eyes (that's not a criticism, just an observation) and it really is amazing how your view of something can totally flip when you experience it in a slightly different way. In a greater view, I am experiencing this flip about terminal illness. I, of course, will be cured, but dealing with cancer has opened my eyes to just how deeply dealing with something like this penetrates your entire life, your entire being.  It becomes you and you become it. You don't have to be defined by your disease, but it's still all-encompassing. When death is a real possibility, there are so many things that no longer matter, and so many things that you realize are of the utmost importance. So many things that just a few weeks ago ran my life - schedules, routine, tidiness almost to the point of compulsion - no longer even factor in to my daily life.  Not that I have suddenly become a chaotic slob, but in a sense, dealing with one huge all-encompassing battle has almost entirely lifted the weight of daily, mundane stress and worry. My focus now is so much bigger and more intense than I could have imagined, and somehow that makes everything else a little easier because when it comes down to it, there's not really much else that matters. What matters is my baby, my husband, my family, my friends, and my life. Everything else is floating just outside my periferal vision, like it's waiting to see if I'll need it again or if it should just float away permanently. I am thankful for that, for the lifted weight of daily, unnecessary stresses - see you later aligator, I didn't need you anyway.

It's late (midnight) and I am rambling, so I will say goodnight. The benedryl and Ambien starting kicking in about 30 minutes ago and I am loopy. I apologize for misspellings and typos, I am working directly through the Internet and can't spell check (also did I mention I'm totally loopy). I don't know how I'm going to feel for the next few days, but I will continue to try to post as much as possible. If I don't post, don't worry, if there is something that needs to be told Jeff will post for me.  So, as Jeff said when he left my room tonight, tomorrow we begin the path to recovery. We aren't sure what direction that path will take, or how many miles it stretches, but we do now where it ends and that is a beautiful place indeed.

Today I am thankful for my pregnancy pillow, which is turning out to be a fabulous hospital comfort; the fact that I have no roommate tonight; the amazing nurses on the unit who care for me; nurse Christine and Dr. Schaub who talk to me like we are friends while curing me; my wonderful family and friends; and, as always, my sweet sweet Jeff and fabulous baby Kai. I will be home soon little bear. Thank you for giving me the motivation I need to win this fight.  I hope someday you will understand just how important you are.

Tuesday, February 1, 2011

February 1

The circle of support continues to expand.  Today we were surprised by a care package from work.  I’m not talking about your run-of-the-mill, get-well care package.  I’m talking about an overflowing abundance of generosity that took three trips from the car to the house to unload.  It had everything from lotion and chapstick, to homemade cookies and barbeque, to talking picture frames, to shirts for us and a onsie for Kai with custom made “team Goldfarb” decals that included pictures of our family, to Nintendo DSes for each of us, to a Play Station 3 for the house.  And that’s not a full list, that list was just meant to show the range of items included. It was a super gigantic care package on steroids.  Our co-worker/friend, Angela, who delivered it to us told us that there is also a whole meal cooking, errand running, general helping organization effort going on companywide.  And while she was talking, I noticed she was wearing a melanoma support bracelet (we understand the whole office is wearing them in a show of solidarity for us).  There are no words that can express how much this level of support has affected us. We have been embraced and held tight by our work family in a way that goes so far above anything that I would have expected or even thought was possible.  The way that they have rallied around us over the past couple of weeks – so quickly and so completely – is simply awe inspiring. To say we are grateful is a severe understatement.  And it’s not the things, it’s the fact that everyone instantly came together to provide the most possible support, professionally and personally, to both of us (although the things are fabulous and we love them too, don’t get me wrong). I have never felt so claimed and protected by a group of people. It’s like all of these wonderful people have said to us, “you are ours, we will take care of you, you don’t have to worry about anything other than winning this fight.” They were our co-workers, they were our friends, and now they are our family, every single one of them.  We also had a wonderful home-cooked dinner from our good friend Renee today, dinner from our wonderful neighbors last night, a visit from friends Ryanne and Bret yesterday who brought us a recordable book so that I could still “read” to Kai when I’m not here, a hand-delivered bouquet of fruit from another group of co-workers, and a never-ending stream of cards and good wishes.  I just cannot believe how loved I feel. I am in awe of the amount of support we are being given. I am grateful beyond words for everything.  And I am sure that I will be changed by this generosity forever.
Dr. Schuchter, from the University of Pennsylvania, called us today. She received the results of the BRAF testing from Dr. Thambi and she called us to tell us how happy she is about the results. She said that she received them earlier today, but had only just finished in clinic and rushed to call us because she was so excited that I had another treatment option available (the BRAF-specific treatment). I believe that she meant that; I believe that she was excited for me.  Dr. Schuchter is a renowned melanoma expert.  She sees a vast amount of patients. Her help was enlisted by a very good family friend and we have only met with her once. But we already feel that she sincerely cares about us and we are grateful, so grateful, to have options. There aren’t a lot of good options for melanoma, but now we have a plan for three clinical trials – the IL-2, the TIL cell therapy, and the BRAF-specific treatment. I am so thankful for these options and for the truly caring doctors who are walking this journey with me.
This is a strange time. I feel like today and tomorrow are the last two days that I will be the person I am now. I feel like once the treatments begin, I am embarking on a journey from which there is no return. Even after I am cured, the experiences that I will have had will have changed me – they already are. After going through the treatments, I imagine that I will always live with at least a small amount of fear and uncertainty about the future. So as ready as I am to end this journey in victory, I am also nervous to begin. It’s not the treatments or their side effects that scare me; it’s the inevitable fear itself that we will have along the way.  But at the same time, I will also be changed for the better.  Because of this journey I am experiencing humanity in a way I never have before – the raw human emotion and unquestioning support I am being shown has opened my eyes to the innate goodness that exists in all of us. And I will gladly live with a little fear in exchange for the vast amount of love with which I am surrounded.
Today I am thankful for my amazing MMG family; my good friends who continue to overwhelm me with support; my wonderful family who keeps showing me the face of positivity even though I know this must be difficult for them; the doctors who will cure me; the clinical trials that are my only options; and, as always, my fabulous husband and perfect baby Kai. May you grow up with the knowledge that we are all good.  We are all love. We are all one.