Hello. I don’t know where to begin. I’ve been meaning to write all week but just couldn’t find the time. Things have been very overwhelming and exhausting. So maybe I’ll jump back all the way to Thanksgiving to share some nice pictures from when Steve was here. Thanksgiving dinner at my Aunt and Uncle’s house was so nice. Look how pretty and delicious my place setting was!
My uncle had a banjo jam session and showed Steve his collection.
While we were in DC we ate at this amazing cafe at the American Indian Museum called Mitsitam that has food from different regions.
When we got back to NYC I cooked up a yummy soba Otsu meal with my buddies Sam and Aurora.
Then Steve had to leave and I totally cried (just like I did last time he visited in July). But I had a busy week to distract me including going to Boston to meet with that doctor at Mass General. He was a very nice doctor and looked to be about my age if not even a little younger. He told us that there is an opening for a PIK3 Kinase Inhibitor trial for me so they are holding the spot for me until Monday when I will make my final decision. We are meeting with the doctor at Sloan again on Monday to find out if they have an opening on the trial here which is for a drug called KPT 330. Here’s a link to the trial at Sloan which sounds really cool to me. It sounds like an interesting mechanism for disrupting cancer cell growth and I’m eager to learn more about it on Monday. The PIK3 trial at Mass General sounded encouraging because they told me that head and neck cancer patients have been responders to it and those kinds of cancers are the same cell type (squamous cell) as cervical. But my biggest concern is that once you join a PIK3 trial you become ineligible for other ones and there are so many! So how in the heck am I supposed to know if this is the right one for me to try? My mom and I have been overwhelmed and frustrated at trying to figure this out because the doctors really don’t give you any guidance on what to try first. Plus they are invested in their own trial and want you to join that one. And there are tons of trials going on all over the world and I am only considering two right now because they are nearby. What if there’s one in Germany that would be perfect for me? There does not seem to be an impartial consultant or patient advocate to help us figure out what to do which is incredibly frustrating. The clinical trials website is not easy to navigate and the doctor in Boston told us that it’s very rarely updated so most likely out of date. So we are consulting with a few friends who are more connected to this field to get their opinion. Another aspect that makes me a little disillusioned is the fact that this is all run by the pharmaceutical industry which I don’t think has my best interest in mind if you know I mean. Dollar Bills!!! Plus, this may just be the stress but for the past few days I’ve had this weird headache that has made me neurotically assume that I have a brain metastases (i.e. the cancer spread to my brain) which aside from dying is probably my biggest fear (probably because it would lead to dying…sorry, so morbid). I read that it’s very rare for any gynecological cancer to spread to the brain but I wonder if I should get it checked out for my sanity. Plus, I read that if you have brain metastases you are ineligible for most clinical trials. Well, let’s cross our fingers I’m just imagining all this. In an attempt to cover all the bases, I’ve also been putting some of my research into alternative therapies again including this book that my acupuncturist recommended:
It seems really cool. It’s part of Taosim called the Tao of Revitalization. And last night I was reading this book Steve told me about called Cancer-Free that recommends a specific regimen of supplements to boost your immune system to get rid of cancer. One of the recommendations is this thing called the Budwig diet where you mix cottage cheese with flaxseed oil. Who knew? I think it’s important to feel empowered by these alternative medicine regimens because dealing with these clinical trials feels like shooting in the dark and that’s not the most positive or encouraging feeling when you are fighting cancer. I’m already following the diet the book recommends which is gluten and dairy free and mostly vegan. So I know I’m doing something right! Aside from all this stress, I’ve been having a moderate amount of pain which has been very draining. I finally took some Advil/Aleve last night and was happy to see that it helped because I really don’t want to go back on the opiods unless I absolutely have to. But this morning my pain feels OK and during the night I didn’t have much either. Ok well, I’m off to start the day. Oh yeah, I’ve been meaning to ask you all. If you have any religious friends or family, could you please ask them to pray for me? That would be so awesome! I’ll take all the healing prayers I can get! Thank you! xoxo Lauren
Hello again. So I did not coin the phrase “Operation Save My Ass.” It comes from Kris Carr, the amazing cancer activist, foodie, and goofball, who I’ve been a big fan of these days. Anyhoo, the past week has been incredibly overwhelming and challenging for me but I am hanging in there. Steve’s presence has helped me stay afloat during my hardest moments. So on Monday we met with the doctor in the clinical trials department at Sloan. He was very informational and matter of fact and didn’t have the most encouraging tone in terms of what my options are. He explained to me that these genetically targeted drugs are so new (only a year old) that they really have no idea how or why they work yet. He said that some mutations are clearly drivers of the cancer while others seem to be passengers. In other words, the drugs work by inhibiting certain gene markers and if the targeted gene is a “passenger,” inhibiting it would not stop the growth of the cancer. He said that my genetic mutation (which can occur in any kind of cancer) has had lukewarm response to the various targeted drugs and so it’s unclear whether it’s an important mutation to target. But it’s obviously worth trying. He explained that with clinical trials, you keep trying them until you find one that works and then you could stay on the drug indefinitely. He said there is a trial at Sloan for my mutation but there is a long waiting list (which he added me to). He also told me about another trial he thought would be a good option for me even though it was not targeting my genetic mutation because one other patient with cervical cancer responded to it. Yes, that’s ONE other person. So that’s what we are going on here? I guess it’s better than no one. That trial also had a waiting list but he thought he would likely be able to get me on it in 2-3 weeks which is when the chemo would be fully out of my system. You can’t start a trial while chemo is still in your system. He also recommended that I send my tissue sample from my diagnosis to a private company that will test me for an additional 236 mutations that will help point him in the right direction for what other clinical trials to try. He also recommended that I register with other hospitals that have clinical trials going on in case something opens up somewhere else. He referred me to a doctor at Mass General in Boston who I have an appointment with next week. I have a really good feeling about the doctor in Boston based on how incredibly kind and encouraging his scheduling nurses were over the phone. One of them told me that the doctor specializes in helping advanced cancer patients find targeted trials that work for them. Another factor is my wisdom teeth which I mentioned to the doctor on Monday. He told me I should get them out before I start the trial because the last thing I want is to have something go wrong with my teeth that would cause me to get kicked off the trial. But my teeth have been more under control lately and theoretically shouldn’t flare up if I am not on chemo. But I am so fucking sick of brushing my teeth after ever single thing I eat and would enjoy having the peace of mind that they are out of my life forever. Unlike the cancer, which is difficult to eradicate, eliminating my teeth and any potential issues would be one less thing to worry about. But I am so anxious to start a clinical trial ASAP since it’s very unnerving to know that you have cancer actively growing in your body. Plus, I’ve been having some spotting/bleeding down there that makes me super anxious (sorry for the TMI). So there’s a lot up in the air and I am impressed if you have read this far!
After we met with the doctor on Monday, I was overwhelmed with fear. In my head, I was terrified that I wouldn’t make it the 2-3 weeks until I could get on the trial. I actually had to ask my doctors this question and they told me of course I would and that I should just be careful crossing the street. So I’ve calmed down a bit about that but the whole fear of death issue is ya know, kind of right in front of my face right now. But again, Steve along with a vegan, gluten-free brownie sundae at Candle 79 acted a potent antidote to this fear:
The clinical trials doctor explained that when you start a trial, it’s like a full-time job because you have to be there 2-3 days a week for 8-9 hours a day so they can monitor you very closely and see how the drug is interacting with your body. But even just making all these new appointments, registering at new hospitals and getting my medical files sent to the different hospitals over the past few days has felt like a full-time job too! Anyhoo, I am feeling more relaxed and calm today and tomorrow my parents, Steve and I are going to DC to celebrate Thanksgiving with my mom’s side of the family. I am so excited to see everyone. They are all so sweet and are making healthy recipes I’ve requested plus, gluten-free, vegan sweets! I know what I am grateful for! Talk soon! xo Lauren
Hello my dearest readers. So I have some news to share with you. My latest scan results are what I like to call a 4-in-one deal. What I mean is that there are four possible outcomes from scan results and I got all four for the price of one! So the four outcomes include shrinkage (in the tumors in my pelvis), no change (the mets in my lungs), signs of activity (in my uterus/cervix), and new areas of development (lesions on my spleen). Obviously, I was not thrilled to hear this news but somehow I kind of knew it was coming. Based on the weird stuff I’ve been feeling, I had a sense there was some kind of activity down below that might not be good. I know it may seem weird to joke about the results but I think it helps me cope with it right now. I was joking with my Dad that the cancer is clearly stupid by going to my spleen which is a non-essential organ. I visualize the cancer in my body as riding a subway or Euro-rail train and then they are like “Hey! this looks like a nice place! Let’s get off here!” An overhead announcement beams: “You have arrived at Lauren’s Republic of Spleen! Now Get the Hell Out of Here!!!!! And take your other friends who are shacking up in the lungs with you too!!” Both of my doctors are recommending that I stop chemo (thank god!) and try to join a clinical trial for a drug that targets the genetic mutation of my cancer which is PIK3CA. There are apparently several different trials going on at Sloan right now for this mutation. I already have an appointment tomorrow afternoon to meet with a new doctor at Sloan Kettering in the Phase 1 Clinical Trials Department. I only know a few things about clinical trials but starting now I will know a hell of a lot more! What I do know is that there are three phases: Phase 1 tests for safety, Phase 2 tests for efficacy, and Phase 3 tests to see if it works better than what is currently on the market. I have often felt like a guinea pig before but now I will really be one! It’s a little scary to join a drug trial where they are just testing the safety and they don’t even know if it will work. But it’s also kind of exciting to be a part of cutting edge research that could help save many future people down the road. I read this interesting NYTimes article a few weeks ago about cancer patients chasing after drug companies to get access to drugs that aren’t approved yet and it was informative but also a bit scary (as usual). I see this new development as a call to action for me to start doing research on cutting edge drugs/treatments and I will start an excel spreadsheet to keep track of anything that could possibly help me.
After hearing the news on Friday I was obviously a little depressed, scared and angry. I was walking around the house like a pirate with Turret’s syndrome muttering curses usually including the words cancer, stupid, and spleen. Right after I talked to my doctor I got this tea bag aphorism:
When I first read it, I interpreted inner self to mean my actual cells and organs and thought “boy do I wish that was true.” But I know I should interpret it as my mind and spirit because being happy and at peace in my mind might be the only way to truly overcome this. I have been good at keeping up with my meditation practice but maybe I need to practice even more! Multiple times a day!
Steve arrived yesterday morning which was the most perfect timing ever! We had a fun day yesterday which included meeting Minnie Mouse:
Going to the Mike Kelly show at PS1 to see art made from Popples and other stuffed animals!!!
And eating delicious food of course! Today we are going to see Book of Mormon!!!! Pretty exciting! So I am as usual trying to stay positive and not freak out and Steve is helping me with that! I’ll keep y’all posted on the new developments in my treatment plan as well as al the fun stuff Steve and I will do this week. Ciao! xo Lauren
Hello out there. I’m happy to say I’ve made it through a weekend of gnarly nausea. It was most persistent I’ve encountered and it was not fun. But its over! Woohoo! In other news, you may have been wondering the status of my hair. Is it still growing? How long? What color is it? Unfortunately, I have some sad news for you. It’s falling out again! Bummer! To answer the questions that I imagined you asked, it’s grown almost 2 inches long with both brown and white hair. But the exciting news is that I think it is growing back curly! The hairs that have been falling out totally have some kink in them!!! Or at least I’ve convinced myself this is true! I’ve always wanted curly hair so my fingers are crossed for at least some waves! Last night Steve and I were joking about it and it inspired me to make this animated GIF!
In case you coulnd’t tell, that’s me with my current hair at the end. People always used to tell me that I look like Sarah Jessica Parker from Girls Just Wanna Have Fun which happens to me one of my favorite movies from growing up!
My cousin Adrienne is visiting this week which is super fun! She literally sends me 1-2 presents a week (which is amazing) so it’s nice to get to spend some quality time with her! We just ate at Candle 79 which was delicious as usual. However, I asked for a peppermint tea and didn’t realize that I was actually drinking Green Tea!!! I was feeling fatigued and out of it but remember thinking when I took my first sip, “this is amazing peppermint tea.” Then, after drinking it for awhile, I remember noticing that it was bitter and I don’t remember the exact thought process but I know it involved realizing that peppermint tea should not be bitter and that I was drinking green tea and I nearly had a panic attack. At Sloan they say not to drink because it can interact with chemo plus it was 7pm so I hope I’m not up all night! Another illicit beverage that I am planning to indulge in is….KOMBUCHA! I’ve now met with two more nutritionists and 2 out of the 3 say it’s ok to drink it. That should be a tag line: 2 out of 3 nutritionists approve Kombucha! It will be a momentous occasion. I may write a sonnet or a poem about the experience. I haven’t had it since before I got sick back in April! That is 7 months ago! I’m already salivating! But, don’t worry, I will drink responsibly. Haha.
Finally, I found these amazing socks in my Mom’s sock drawer and she said I could have them. I have no idea how I’ve never seen them before. I’m a lucky lady!
Catch you on the flip side! xoxo Lauren
Hello out there. So yesterday my double digit chemo experience was pretty rough. Warning/Disclaimer: This post contains ranting and TMI (too much information) so please be warned.
The day started off quite well. Overall waiting time was much less and I got into my chair at 11:30am instead of the often 1pm after waiting 2 hours for bloodwork/registration, etc. They told me my nurse would be Anna who I knew sounded familiar but as we walked back a nurse named Diane I had never met came to greet me and told me she would be taking me since Anna already had two patients and she only had one. From the moment we got to the chair, I noticed there was something off about her in the way she reacted to me telling her that I have been having trouble with my veins lately and that depending on the results of my upcoming scan I would be getting a port put in. She kinda rolled her eyes a bit and seemed dismissive. I would say something to her and she just wouldn’t respond. So we got started and she was able to get an IV in on my left wrist. I wasn’t crazy about that spot because its a sensitive area but I was relieved that it went in easy. But during the pre-meds (which take over an hour) it started to get irritated not just at the infusion point but further up my arm. This happened on the right side too and later caused phlebitis (inflammation of the vein) so I was starting to worry but waiting a little more to see if it would pass. But when she started to infuse Benadryl, which often causes extra burning, I broke into a rash and dark spots were showing up on my arm where I felt the sensitivity. She kept testing the blood return on the IV saying “it’s working fine” but eventually accepted that the site was not not good. So she called in one of my favorite nurses Jennifer to try another spot. That spot turned out to be sensitive so another nurse named Jennifer that usually works inpatient tried out a different spot on my left wrist next to the first failed spot. I have no idea what happened but as she put the needle in a sharp, shooting pain ran up my hand to the tip of my middle finger and I screamed in shock. I had never felt anything like it before in my life. So that point wasn’t going to work because when you tense up like I did from the pain, the vein “blows,” whatever that means! So things were not looking so good but a previous treatment day we had to try 5 spots before we found a good one so I wasn’t anywhere ready to give up. One of the Jennifer’s noticed that my AC line (which is the one in the crease of your arm where they draw blood) looked really good but they don’t typically do chemo infusions there and some nurses refuse to do so. Plus one of my drugs, Taxol, is especially sensitive on your veins so they rarely use that line for that drug. At this point Diane was telling me how I had to give up and go home. She kept saying how I had to have a port put in and how it wouldn’t “be in my best interest” to continue to try more veins. Excuse me? Not in my best interest? Is she my doctor? Does she even know my diagnosis or my history? I am fighting for my life here so I think getting this chemotherapy infusion is certainly in my best interest! Plus, my scan is next week so there was no way I wanted to delay that. So I insisted that she talk to my doctor and let him make the call. Somewhere in the midst of all this chaos, I asked my mom to talk to a supervisor and transfer me to a new nurse. Diane was not only negative but passive aggressive too. At one point during all of this, I was trying to relax so the nurses could get the IV in and she was playing this terrible pop music at her desk which was right next to my chair. My mom asked her if she could turn it down because I was trying to relax and she just ignored us. So the other nurse Anna turned it off and a few minutes later, Diane turned it back on and made it louder! How does this woman possibly work with cancer patients? Has she lost her mind? Also! Right after my third scary IV point that sent that pain shooting up my finger, the woman in the cubby next to me started having an allergic reaction to Taxol (it was her first infusion ever) and started screaming and moaning that she couldn’t breath and was having back pain. It was so scary! All the nurses attended to her immediately and gave her more Benadryl and she got better but it didn’t help me relax! I just kept taking deep breaths to stay afloat. My mom then returned with this other nurse who told me that this nurse Julie (who I had IV luck with before) had a chair for me on the other side so I could move there. But on the way, I passed by my favorite nurse Jennifer who answered the call from my doctor who said he wanted me to get the infusion and approved the use of the AC line and she told me to stay with her because she had a chair for me. So everything turned out OK in the end. The AC line was super easy and I felt no pain or discomfort. The only problem with the AC line is that you have to keep your arm straight the whole time so the drugs don’t get stuck in the line if it bends. So that whole arm was out of commission. And my left arm was so sore from all the failed IV attempts that I couldn’t bend my wrist without pain. So I had no free hands for the day! Here comes the real TMI part: my mom not only had to come to the bathroom with me (she usually does anyway when I get drowsy from the Benadryl) but she had to pull my pants down for me and you can figure out the rest. She also had to feed me my lunch of pureed broccoli soup like a 1 year old child. What would I do without my mom? Those moments made me feel grateful for the things I do have including the use of my hands and my loving and supportive family. The woman who was having the allergic reaction was all alone and that made me sad. I think her son was there earlier but had left. Oy vey! Have I exhausted you yet? I warned you this would be ranting, long and TMI. So I am going to file a formal complaint about Diane not out of spite but because I don’t want anyone else out there to go through what I did. I feel good about standing up for myself but I shouldn’t have to do this at the chemotherapy suite. I know this may seem like a stretch but it sort of felt but Diane telling me to give up on the infusion felt equivalent to her telling me to give up my fight against cancer. So despite the negative experience, I gained confidence in myself that I really am a fighter and that I can win this battle if I stay positive and not let any negative person get in my way. As in the lyrics of good ol’ Tom Petty, I won’t back down.
So I’d like to end on a fun positive note! Here’s a picture from when Steve and I were FaceTiming the other night.
Where else would I want to be but snuggled up with my stuffed animals. I’d like Steve to be there too instead of in the virtual box on the top right. But soon enough! He arrives for a week from tomorrow and he’ll be here for a whole week! Woohooo! Ok, I hope you all enjoy your weekend. xoxo Lauren
So I don’t have a ton of time but I wanted to write an update for any of you out there who may be worried about me! I realized that my last post was a little intense and didn’t want to leave y’all hanging on how I am feeling! So yesterday I felt pretty darn bad. Despite the distraction of traveling to Boston, I was worrying like a real Nervous Nellie (wink wink, Mauuuuura). But then like so many other times before on this chemo journey, my symtoms (while not totally gone) are much better. I really don’t understand it at all. The big lesson for me is to remember that even the most persistent and scary symptoms can end up going away or lessening over time. I did end up moving up the date of my scan to a week from tomorrow but there’s no harm in that. The lecture by Joshua Rosenthal was inspiring and it felt nice to be there in person instead of watching from an iPad. Because of my worrying, I wasn’t in a very outgoing mood so I didn’t really talk much to other classmates and graduates. I could have done a big group share and told my story to the hundreds of people there but there is time for that. I was kind of worried that I would burst into tears. I think I’d rather do that at home with my stuffed animals. Haha. But the lecture did help me to clarify who I think my target market would be and I had time on the train to finish this week’s module and catch up on the workbook. Joshua encouraged us to pick a health issue that we have had success in overcoming and make that our target market. So, I don’t know if I can officially say I’ve successfully overcome metastatic cancer but I’m working my ass off to at least live with it and be the happiest I can be. So I decided that I want to work with young adults (aged 20-40) living with metastatic cancer to help reduce stress/anxiety, eat healthy, learn about integrative care (like massage and acupuncture) and enjoy each day. I want to apply for grants so that my coaching service can be free of charge! I know that Rachel did that when she was studying with IIN so I’m sure I can find a way to do so myself! Alright, well, I’m off to acupuncture and massage in prep for chemoland tomorrow. We’ve hit double digits! Number 10! And if you are wondering, the picture above is from the Children’s Book show at the NY Public Library. My mom and I went last week! It’s the pattern they use on the spine of Golden Books! Toodeloo! xoxo Lauren
Apologies for my blog writing delinquency. I know you are all hungry for updates but I’ve been trying to stay away from my computer lately because often when I sit in front of it, hours go by and I have no idea what I have been reading or looking at. Let’s just say it is not the ideal use of time and I’m sure you’ve all experienced this at some point. Anyhoo, I’ve been struggling with negativity, anxiety and fear these days. Tomorrow marks the two week countdown for my next scan and I’m pretty scared. I’ve been feeling weird pains in my pelvis that make me a big old worry wart. I’ve talked to my doc and nurses about it and they don’t think it’s anything to worry about but it’s SO HARD not to worry. It’s totally possible that what I feel is more tumor death/shrinkage or as the docs say just “treatment related” aches and pain that are normal. While progression isn’t likely based on how good my scans have been, it is not impossible so it’s hard not to obsess over it. I’m doing my best to manage my worries with Kundalini yoga and it has really helped me flip my negativity at moments. But when I feel the physical sensations in my pelvis, a lot of the effort flies right out the window into the cold New York air. Also, I’ve realized that I’ve definitely been researching cancer information way too much and that I need a break. Through my research, I’ve come to realize that the only way that my body will rid itself of cancer is through the immune system. Which is why I place a lot of hope in the new drugs out there like PD-1 and CD-47 which are designed to help the immune system identify the cancer cells and destroy them. I’d say that’s some integrative medicine right there!! But I’ve also decided that more specialized nutrition and chinese herbs are something I want to integrate with my healing regimen as they too can boost my body’s own defenses. Stress of course is a huge burden on the immune system so I’ve got to work on that too. I’m going to meet with this new acupuncturist/MD who specializes in herbs and nutrition next Saturday. Plus, she works in both LA and NY! Score! In my research I also found out about this woman Kelly Turner who offers Integrative Cancer Consulting but she is currently on maternity leave. She got her PhD at Berkeley in 2011 and wrote her dissertation on the Spontaneous Remission of Cancer and you can even download it and read the whole thing! I started reading it last night and was very inspired by importance of mind-body connection for healing.
But let me get away from all that because as I already said, I need a break from cancer-related information. Last night my friends Aurora and Sam came over and we made some amazing chili from the Crazy Sexy Kitchen cookbook. I added some seaweed I ordered to it too! Oh yeah, I ordered an obscene amount of seaweed from Maine because I read that it can help fight cancer (am I crazy?). And the night before, my mom and I went to some friends’ house who made lobster! So I’ve been eating well! Here’s a shot of the chili!
And you may have noticed in the first picture that I got some fancy new glasses from Warby Parker. They look a lot like the glasses my Dad wore when we were little.
Well, I suppose I will go read a book now. A book that has nothing to do with cancer! It should be like on Pee Wee’s Playhouse when someone says the secret word of the day and screams! Cancer! Ahhhhhhh!!! Hahaha. Oh yeah, on Tuesday my mom and I are going to Boston for the night so I can see the founder of Integrative Nutrition, Joshua Rosenthal, speak! He’s such an inspiring, comforting person so I can’t wait to see him in person. Well, I hope you are all warm and cozy out there! xoxo Lauren