Sunday, February 27, 2011
Friday, February 25, 2011
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
Monday, February 21, 2011
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
Wednesday, February 16, 2011
Tuesday, February 15, 2011
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
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
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
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
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
Friday, February 4, 2011
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.
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.