Friday, December 13, 2013
Chemo pretty much sucks. I found out I might even lose my hair for these three silly treatments I'm having over the next six weeks, which makes this suck even more. If I was doing six months of chemo, I get it, the hair might have to go, but I'm doing THREE treatments!! Because I'm not working, I don't plan on wearing a wig this time. Oh well, I do love a cute winter hat. :)
But there is one side effect of chemo that I (and now you), can enjoy: the steroid high! Before they give you your IV meds, they give you some pre-meds, one of which is a steroid, which gives you about a 24-hour-high. My high kicked in last night around 10:00pm. At 10pm I am usually asleep on a couch. Here is my re-enactment of what I was doing at 10pm last night while Jason was watching American Horror Story Asylum (NOT my genre).
And right now, it is 5:51am. Usually I drag my butt out of bed at 7:30am these days, blindly hunting for the coffee pot. Today, I have kissed my child (who is, of course, up already and reading in her cozy bed) and headed out here to write. When she asked where I was going I told her I had some writing to do and she said, "But it's 5:44!"
So, today should be an interesting day. Hopefully I will finish my Christmas decorations, clean my house up, wrap some gifts to put under the tree, and be ready to pick up Rory at 1:15 for her early dismissal day. Tonight, the crash will come. In the meantime, I'll enjoy the energy surge and shopping for hats.
Ready, set, GO!
Monday, December 9, 2013
For people like me, when one medication stops working, it's time to try another one. This transition is never fun. New reading about a new drug and its potential side effects. New scheduling. New plans. Always a transition that uses a lot of your brain energy thinking, planning, evaluating, watching for signs and symptoms (good and bad), etc. And when one medication stops working, it's kind of like taking a link off the paper chain, if each link is a possible medication to try. I don't know how long the chain is, which is good for me psychologically. I like to think it's a lengthy chain, so removing one link isn't such a big deal. Recently though, I've gotten to do something we don't often get to do - ADD a link to the chain. With this new drug (Palbociclib) that I'll be starting in the near future, I get to add a link! It's a drug that simply wasn't available six months ago, and now is available to me. Yay for adding a link! In reality, I've also removed a link, since my current oral chemo has stopped doing its job, but I'm happy that my chain is staying the same length! Thank you modern science, truly.
Update as of about an hour ago: Before starting the new Palbo drug, we are going to try a different chemo for about six weeks so the cancer in my liver can get tamed a bit. The best case scenario for the Palbociclib is that it freezes the cancer where it is - it's not intended to shrink it, just keep it from spreading more. So, my wonderful doc called me from an airport in TX this morning to tell me he's been thinking about it and would rather shrink it before trying to freeze it. I'm totally on board for this plan, so will start an IV chemo later this week. Side effects should be minimal and manageable. I'll get the chemo every two weeks for 3 rounds, then possibly start the Palbo. I like this plan very much.
So, for now, I'm off to work on my Christmas plans. Gifts to wrap, decorations to hang, songs to sing. There is snow on the ground here in STL, and I have a fireplace all to myself. By the way, those Christmas paper chains have gotten much fancier since I was a kid (evidence below), but somehow I still like the red and green construction paper ones! Happy day, all! Love, Jill
Wednesday, November 20, 2013
Thursday, October 17, 2013
We saw my doc yesterday after having a CT scan. Basically we were going to find out if the cancer flare up was just in my hip, or if it was flaring up overall and getting worse. Apparently it's not an easy Better or Worse answer.
The Better: My hip is looking good. Still on crutches to aid healing, but hopefully I will be off of them in about 10 days. No more pain at all with it. My liver is looking better than ever! My bones all look stable.
The Worse: I have some newly-enlarged lymph nodes in my abdominal area. Not huge, but with my tumor markers creeping up, this is not to be ignored.
The Complicated: The cancer in the lymph nodes seem to be a mutation of the original cancer, so they
will need to be treated differently. The doc used a farming analogy (which, as a newly-addicted player of Hay Day, I appreciated). A brown-spotted cow jumped the fence and now is creating cows with long horns. Both sets of cows want different food and can move in different directions, so we no longer have a herd all moving in one direction.
I was concerned that we were going to hear that the chemo wasn't working, but that's not the case at all. He's thrilled with how well it is working on my liver. We are just adding a hormone blocker to my meds in hopes that it will handle the lymph nodes, and we don't expect any side effects from the hormone blocker. We had a long talk about drugs that are in clinical trial phases right now that aren't available to me yet, but look promising should we need something new down the road. In fact, he was VERY impressed that I brought drug ideas with me and that they were GOOD choices for me. (Thanks for the tip, Grandma Annette!!!) I always like to be able to impress that man - he's damn smart.
So, we are good here. I feel really good. I'm ready to quit using these dumb crutches. I'm ready to dance. I just have more than one partner now. :)
Oh and by the way, if any of you play Hay Day, my farm name is Jillschmill's Farm. Find me!
Thursday, October 10, 2013
We're in gray area again.
I saw my doc yesterday and had my usual tests done. My lab work, including my liver enzyme levels and white blood counts, all look excellent! However, I just got the call that my tumor markers are up a bit again for the second month in a row. They aren't up by huge amounts, but enough to warrant a peek, so on Tuesday I'll have a CT and then see the doc on Wednesday.
What can cause tumor markers to go up? A few things:
1) Progression. Euphemism/Definition of the Day: progression
A progression is a nice word for "it's gotten worse". We are always wanting to hear that there are no signs of progression of my disease.
2) Radiation. I had a shot of radiation three weeks ago (but my tumor markers had started to elevate before I had the radiation).
3) Oddly enough, the HEALING of bone metastases can cause markers to raise.
This means they don't know if my markers are up because of a progression or due to treatment, so the CT scan will tell us.
I also will be seeing the orthopedist tomorrow to follow up on my hip. I'm still on crutches and my hip still bothers me daily a bit, but it is WAY better than a few weeks ago. I'm on no pain meds - not even ibuprofen - and Jason has to remind me to use my crutches around the house instead of limping.
Hopefully by next week we'll have a plan and be out of the gray area. The gray area is never easy for my psychologically. It's like when we were in college and you didn't know about what your boyfriend was doing/thinking. It is easy for your imagination to go places it shouldn't because you don't have hard facts to hold onto! Of course, in college I would always just tell friends, "JUST ASK HIM! YOU'RE MAKING YOURSELF NUTS!" Oh, if only it were that easy now. :)
On another emotional note, I've lost two cancer-colleagues recently, which has also been a bit rough. Jen Smith was my guide through all this, my attitude-twin in this metastatic world, out to conquer everything! She passed away last week in her hometown of Champagne, IL. This pic is with her son, who just started first grade. Jen is the person who introduced me to the idea of long-term disability, for which I am forever grateful. She also is the one who suggested we apply for a retreat from Little Pink Houses of Hope, a trip we received and loved. Jen wrote two books about living life to the fullest through this disease. She was a glorious ball of energy and love.
Michelle White was one of the women who joined us on our Little Pink Houses of Hope retreat last fall in Delaware. She and her daughter, Emily, were so lovely to be around! We had a great secret sailing trip with just our family, Michelle and Emily that was very special. Michelle passed away recently in New York.
On the other hand, I have to say that I still know I am incredibly lucky. I am in contact all the time with women who are in my shoes but still have to work to keep their insurance; women who don't have amazing husbands like mine; women who don't have financial means to hire a housekeeper when they are tired; women who don't have friends and family running to help with anything and everything; women who just don't have the enjoyable and BLESSED life I have. I am thankful for all of it still every day, even if I have to really remind myself of it a bit more some days than others.
Thursday, October 3, 2013
1) Some survivors feel the decorating of all things pink trivializes what is definitely NOT a cute, friendly disease.
2) Some companies who put a pink ribbon on their product to sell in October actually give NOTHING to any breast cancer organizations for your purchase. The pink ribbon is not owned by anyone, so any company can put it on anything to get you to buy it in October. Please read packages to see if they say what charity they support. Also, some products that get a pink ribbon on them actually have ingredients that may CAUSE breast cancer! Want to see a list? Please purchase wisely.
|Metastatic Breast Cancer Ribbon|
important to those of us who have been told that there is NOT a cure for our metastatic cancer. Yet, the funding in cancer research doesn't seem to match up. They don't put their money where their mouth is. Here is an excerpt from an article from last year's Ann Arbor News that I think sums up the issue very well.
"Says Dr. Max Wicha, director of the University of Michigan Comprehensive Cancer Center and a breast cancer specialist, "Despite considerable progress we have made in fighting breast cancer, unfortunately, metastatic breast cancer is still not curable and accounts for virtually all of the deaths from this disease."
Wednesday, October 2, 2013
I don't know anyone who has mesothelioma, but was contacted by someone from the Mesothelioma Cancer Alliance, who are still trying to get asbestos banned. Mesothelioma Awareness Day was last Thursday. What? You didn't hear the big splash in the news?? Me either. So, consider this a Public Service Announcement from me. Here are some facts about asbestos, the ONLY cause of Mesothelioma. Be aware.
Thursday, September 19, 2013
|I chose this picture after I googled "spot welding" because it was so sparkly!|
The MRIs of my hip and spine came back and show some edema in my left hip. Edema is basically swelling. The report says that the swelling could be either cancer or stress, and the only way to find out which it is for sure is to basically drill into my hip. No thanks. So, we're going to assume its a little bit of rogue cancer that doesn't want to respond to my chemotherapy as well as the other pieces of cancer have been.
Today I had a CT scan to plan for one treatment of radiation to my hip, which I'll have tomorrow (Friday) morning. One shot and done. The nurse referred to it as "spot welding". They find a little spot in the bones that is causing pain, they shoot it with some radiation, and hopefully it's all good after that. If it works, the pain should be gone fully in about 2-3 weeks. In the meantime, I'm on crutches to take the weight off of my hip when I walk so I don't cause a fracture.
I'm always more relieved to have a plan than to be in the investigational phase, so I'm feeling some relief. I can't help but feel, however, that we've started a new phase of my disease, where we are dealing with complications as they come up. Up to now, it seems like it's been an all-or-nothing package. Either everything was responding or nothing was. I'm not sure yet what to make of this new dynamic, but overall I don't like it very much. It's really the first time I feel "disabled" by cancer and I'm not very happy about it. However, I'm trying to focus on this hopefully being short-term and sorted out in a month or so.
In the meantime, I might start taking some of you up on those offers for help. It's hard to make dinner on crutches and I feel bad waiting for Jason to get home to have him start dinner. For those of you who have a vegan dish or two up your sleeve and feel like cooking, I'm sure I can find a week night where it would be greatly appreciated.
Thanks for all your hugs, texts, emails, calls, etc! And thank you to those of you who have been taking Rory to/from school when we have doctor appointments and walking our dog for me. We have an AMAZING support network of people we love!!
Sunday, September 15, 2013
|Not my spine. Not my finger.|
When you have bone mets (cancer that has spread into the bone, which I have), everything gets a little worrisome. Of anything that has been going on in my cancer world, the bone mets have been a minor blip on the screen. They were there from the start of the metastatic realization, in my lower spine, but have seemed to be very very responsive to chemo drugs and have shown indications of healing right from the beginning, so I didn't think much of them. Honestly, in my mind I kind of thought of them as "taken care of". And maybe they still are. I may just have a slipped disk like any other 40-something, which can hurt like hell and be quite debilitating. I mean, on-the-floor-unable-to-move-thinking-I-am-going-to-throw-up-from-pain-get-me-to-the-ER kind of pain (thank you for letting my kid see me like that a few days ago). Being over 40 can have its moments.
BUT, there's a chance that things are more complicated than that. There's a chance I've got a hairline fracture in my hip due to either cancer or the (ironically) bone strengthener I get via IV every month. There's a chance new tumors have developed in my bones. There's a chance this pain is permanent, which is what really scares me. My onc said the x-rays didn't show signs of new tumors, which is good, but my tumor markers (a blood test they run monthly) are up just a hair, where they had been going down steadily for the past six months on this new chemo until this week. They are still at a good number, but I don't like even the tiniest change in direction.
|Woman who has clearly been well-medicated for her hip surgery!|
So, now that it's 5:30am, I'm heading back to my happy land of Hydrocodone and Candy Crush, and hoping sleep comes soon. Good night everyone!
Friday, August 30, 2013
looking back on maternity leave. In both cases I thought I would have accomplished so much more, gotten so many projects done, and have my world so much more pulled together! But looking at it with that lens is just my nature, I guess. Shifting lenses, I see much more that has changed in six months.
I am less stressed. I didn't realize the constant pull of stress that I was feeling when I worked until it was no longer there. I had run at that pace my whole adult life, so it felt like it was normal, just what life is supposed to feel like, what all working parents are dealing with. I'm so thankful to have the ability to slow down on disability. I can relax, take things at a slower pace, pay more attention to what I'm doing. I can think more. Breathe more. I still have a To Do list each day, but it's not overwhelming or rushed usually. When I have to schedule doctor appointments or PT appointments, I don't have to think about what's on my plate at work and what I might have to ask someone else to cover for me. Are there still things I'm way behind on? Yes. Does it get me worked up? Not very often. It's nice.
|Rory and I at Purina Farms dog show recently. AWESOME!|
Is Jason less stressed? I am not sure. He has taken on more responsibility at work and has traveled a lot this summer. But, it's nice that I can manage so many things at home so he doesn't have to worry about them. If Rory gets sick and has to stay home, No worries, I've got it. If the car has to go to the shop, No worries, I've got it. That kind of luxury is hopefully helping us all.
I'm exercising more. Not as much as I want yet, but I'm getting our dog, Maybe, out for a walk twice/day, so that helps. I've also gotten a nice relaxed tan this summer from time in the yard, the garden, and out for walks. I've earned that tan during my retirement! :)
And now I'm starting to explore more classes to take to help me take care of myself. For example, I recently went to a class on meditation. Soon I think I'll try a class on hula hooping (I've never ever been able to hula hoop!). Yoga is next on my list, too.
Overall, I'm giving my six months of retirement two thumbs up! I am SO THANKFUL to Washington University for this amazing benefit that is allowing me to take care of myself and be home.
Thursday, June 20, 2013
They look a bit like magic beans, don't they? Well, boys and girls, they just might be. The doc told me today that my CT scan looks great! No new lesions. The lesions I had have all either gotten smaller or gone away. One of the largest ones was about 4 cm before I started this chemo a few months ago and it is now about 1 cm. There are signs of scarring in my spine, which means lesions are healing. All good news!
My labs show that my white blood cell counts again are down a bit, but not enough to halt my next week of chemo, which starts tomorrow. So, we stay the course!
Beans, beans, the magical fruit...
Monday, June 17, 2013
Osteoporosis drug stops growth of breast cancer cells, even in resistant tumors, study suggests
I'll be seeing my doc on Wednesday so will definitely be talking with him about this. Also, since we are now 3-4 months into me taking my current chemo drug (Xeloda), it's time for a CT scan. I'm having my scan tomorrow (Tues) and will get the results Wednesday. Looking at my labs over the past month, we have no reason to think we won't have happy results, so please keep your fingers crossed for me. I'll write an update tomorrow night with results.
I'm feeling good. Hormones swings happen some days that put me in a little bit of an edgy/grumpy/tired mood, but I'm not sure that didn't happen before cancer, too! Ha! Since retirement my stress levels are definitely lower and that can't be anything but positive.
Thursday, May 9, 2013
This cute penguin has happy feet. (1:15)
I do not have happy feet.
One of the possible side effects of the chemo I'm taking is something called Hand-Food Syndrome (not the same as hand and mouth disease). It causes the capillaries in the palms of your hands and the soles of your feet to kick into overdrive. They get hot, red, possibly swollen and can cause your skin to peel. Not comfortable. Well, after two months on my chemo, it has kicked in on my feet.
I took the dog for a walk yesterday morning and when I got back my feet hurt. Sensitive, like walking on a sunburn. I ended up spending most of the day sitting with my feet up, putting frozen vegetables on them to cool them down. I found that one of Rory's aprons was very useful for tying the veggies in place!
This did mean, however, that I got to go buy new shoes. I needed shoes with really soft, comfy insides. Like my new kickers? Dr. Scholl's, baby!
Limiting my time on my feet is not fun, but I'm adding in strategies to keep them cool and comfortable and hopefully we'll get this to go away. I have a lot of yard and garden plans, but I'm pacing myself. Work in the yard, then watch some West Wing and put up my feet. Yesterday I told Jason via IM that I wanted a muffin while I propped up my feet. I told him that if this trouble with my feet continues, I'm buying an Easy Bake Oven so I can sit in the living room, watch West Wing on Netflix and churn out little chocolate cakes without leaving the couch. His response, "I'm so proud of that image." :)
My sleep patterns have changed, and I'm thinking many people might be able to identify with me for a number of reasons.
I remember being able to sleep soundly. I remember being able to sleep through the night. Back then, on the rare occasion I did wake up to go to the bathroom, I walked back and forth in a bit of a sleep coma, a fog of being half asleep. This may sound strange, but I miss being half asleep.
I would fall back into bed and fall back to sleep after one deep breath. In the morning, I had hardly any memory of getting up.
Now I lay awake for roughly two hours every time I get up, which is most nights. I lay in bed arguing with my own brain, which seems at that hour to have a case of ADD.
"Focus on your breathing. It will help you relax."
"Why does the dog snore like that?
"I need to remember to organize my medicine in the morning."
"Did I start the dishwasher? Should I go check?"
"Stop thinking about things to do. Breathe. That's the only way you'll get back to sleep."
"Seriously, does the dog have a sinus problem? I might have to take her to the vet."
"Breathe. Why can I only focus on one breath before my brain starts running again?"
"I need to start meditating."
"Should I get up and read a book?"
This entire conversation takes about 15 seconds in my head. Two hours of that. I have no idea how I finally get back to sleep. CRAZY!!!
On our scheduled day, Jason and I showed up at the hospital to have the biopsy. They are incredibly specific about where they will stick the needle and they use ultrasound to guide them. They first use the ultrasound to scout out their location, looking for the best place to get a sample without causing a lot of bleeding, etc. Well, we were very patient while they scouted and scouted. Finally the radiologist came in and said that he was "having trouble finding a target". He was quite a serious guy so I had to guess at what that meant.
Me: "Um... isn't that good news for me? Doesn't that mean you are having trouble finding a tumor? That would seem to be good news for me and bad news for you, since your job is to find it. Am I right?"
He agreed it was. So, as I eloquently texted some people, "The doc can't biopsy what he can't find. Good news!" And of course the question "Your liver is missing?" came back from a couple people. :)
I was able to leave biopsy-less and let my husband take me out for breakfast!
I've seen my oncologist since then and he said that everything is looking good. My liver enzymes are completely normal. My tumor markers are getting lower every time we check them. I'm feeling great. I'm still taking my chemo orally every two weeks (daily pills I take one week on, one week off). I'm not due for another CT scan for a while yet, so for now, we are staying the course.
Tuesday, April 9, 2013
On Monday, I am volunteering to have a liver biopsy. There is a DNA screening for a mutation that can only be done with tiny little pieces of my cancer that are removed via biopsy. They keep the pieces for a very long time. In fact, they still had pieces from my liver biopsy last year when I was diagnosed (a little over a year ago already!), but they need more DNA than they had left. So, I'm volunteering to do it again.
It's not too bad of a procedure, but it's not something you typically want to volunteer for, either. I liken it to a root canal ... you don't feel much while they are doing it because they numb you up, but the next couple days can be a real bitch. I'm keeping my fingers crossed that the recovery from this one will be easier than the last one because my liver is in MUCH better shape than it was a year ago. They use only local anesthetic for the needle biopsy (basically they take a long needle, stick it in my liver through my abdomen, the needle then jabs me again and cuts out a tiny piece of tissue and keeps it). They will likely do it 2-3 times, and I will leave a few hours later with nothing more than a band-aid showing. [I almost wrote "with nothing but a band-aid on", but then realized that would be a VERY different image!]
This is one of those situations where the goal is to leave no stone unturned. If they find I have this mutation, there is a better treatment option out there for me. There is only a 10-20% chance I have it, but that's worth a band-aid to me. So, on Monday, bust out "Do They Know It's Christmas" in my honor, ok? Somewhere here there is a way to come back around to volunteering from Band-Aid, right?
Shout out to my '80s friends!
Wednesday, April 3, 2013
Elisha was beautiful. She had a smile that took over her entire face, lit up her eyes, and luckily, it was easy to catch that beauty with a camera, so you get to see it, too. God bless you, Elisha.
Tuesday, February 26, 2013
Retelling the story of falling on the ice when I was interviewing at Wash U and finding mocha in my hair still an hour later!
Very special earrings
"I'm a hot mess!"
Handing over the candy machine
Tulips when I got home
Wrapping up last things right as it was time to leave
Lots of Facebook love
Giving the team an Eliot bell!
Ringing the F*** out of that bell as I left at 3:00!
Sharing rainbow Sharpies with someone who loves them as much as I do
Hearing that the therapy-chocolate was busted out in my office as soon as aI left
One last cup of coffee from the DUC
An awesome apron
Plans for a massage soon
Knowing I will see them all again soon, as they are too dear to my heart to be away from for too long!
Wednesday, February 20, 2013
We saw the doc a week ago and left feeling much better than when we went in. I just don't deal well with the unknown. I need facts and a plan. My appointment gave me both of those things.
My scan showed a few new small tumors on my liver, but also showed that my old tumors hadn't flared back up; they were still dormant. It means the clinical trial was an epic failure. However, that gave us a new piece of information about my cancer, which is always helpful. The clinical trial was focused on blocking all estrogen pathways that the cancer might be using to grow. Since the clinical trial didn't work at all, that tells us that the cancer isn't using the estrogen to build, so we don't need to be worried about my estrogen levels, ovaries, etc. We are now going to look at how to block different pathways.
First, though, I've started an oral chemo to shrink the tumors. This new chemo, which I get to take at home each morning/night, should be easier on my bone marrow while hopefully keeping this cancer contained and possibly even shrinking it a bit.
Today I've now been taking the new chemo for a week. My labs today showed that all my liver enzymes have either stabilized or lowered (yay!). My white blood cells are looking a little low, too, so my pattern of taking the chemo is being altered just a little, and I'll get my blood work checked again next week. Here is Jason entertaining me while waiting at the doctor's office today: "They shouldn't leave us in here with nothing but time to waste and expensive gadgets!"
I hope you all are having a great week! We are expecting a heck of an ice storm here in St. Louis tomorrow, so stay safe everyone!
Tuesday, February 12, 2013
It's a bit of an emotional ride here right now. There's a good chance they will throw me back into chemo, which isn't a big deal at all to handle day-to-day. However, chemo is a poison that not only kills cancer cells, but kills your bone marrow, and there are only so many hits your bone marrow can take from that stuff before it shuts down, which is NOT a good thing. So, it's not a long-term solution.
Jason reminded me today that our job, as I've said many times before, is just to keep fighting until some smart whipper-snapper doc figures out a long-term solution, so that's what we will focus on for now. I've re-energized my juicing (thanks, Scott V.) and am lowering my sugar intake. Doing whatever I can on my end.
Thanks for all the thoughts, wishes, hugs, love and happy energy! It is all felt and appreciated.
Friday, February 8, 2013
Today is Friday, and I'm scheduled to see my doc on Wednesday to check my liver enzyme numbers. As a reminder, these are the three enzymes that were elevated last year at this time that ended up being the lighthouse signal that something was wrong and the cancer had returned and spread.
At my last couple of appointments (10 days ago, and a week before that), my liver enzymes had begun to elevate a little, barely into the official "high" range, which of course, made me a little nervous. The doc told me he was clearly NOT nervous about it, because it was common on these meds. Whew. I asked how, in the future, if they continued to elevate, we would know whether it was a sign of cancer growth or just a side effect of the medicines. The answer was that we could always do a CT scan if needed to check.
Today the nurse called to talk about a shift in the doc's schedule for Wednesday. In talking, we decided maybe I should come in today to get my labs drawn so we could see if I still needed to be on the doc's schedule for Wednesday. I went in, and my enzymes have taken a bigger jump up. Still, hard to know what that means.
Another measurement that gets checked periodically are my tumor markers. This is a general "cancer measurement", but it has a lot of variability, so is only somewhat useful. Well, my tumor markers have gone up, too. The nurse told me, though, that when cancer cells are dying, tumor markers can jump up then come back down.
So... I have lots of data points and no idea what they are pointing at. The winds are changing. Either things are getting better, or they aren't. Either storms are coming or we'll see blue skies. For now, I'm holding on to the ship and trying to appreciate the ocean.
Thursday, February 7, 2013
Today is Rory's 7th birthday, she has a fever, and she wants Mommy to snuggle with her. AND I CAN'T.
Luckily, she is old enough to understand "the doctor says I have to really try not to get sick". Still, I WANT to snuggle with her and help her fall asleep. I want to let her curl up with me so I can read her a book.
One day when she and Jason were both sick last week, I had to go stay at Debbie and Harvey's for 24 hours and leave them to fend for themselves at home, for my own protection. For now, I'm sticking with my kid for her birthday. I'm washing my hands a lot. I'm keeping my distance. I'm only kissing the top of her hair. I'm not getting on her bed.
Sunday, January 27, 2013
Cashew Mushroom Risotto
Believe it or not, this photo is actually of the food I made, taken by Jason on his iPhone. To me, risotto is a pure creamy comfort food! And this one is awesome! Loads of mushrooms with cancer-fighting power, nutritional yeast (optional) for B12, and creaminess courtesy of ground cashews, believe it or not. I can eat this stuff for a meal, it's so good!
Good Morning Delight Juice
For the days when I want a break from green juice, this is a great treat with carrots, strawberries (I defrost frozen ones in the microwave) and apple.
Before I dive into soups, a word about broth...
I miss chicken broth. And every veggie broth I've tried is awful. Therefore, I've been having some trouble with some soup recipes since going vegan. Recently, though, the clouds have parted, the light has glowed and the angels have sung! I share with you, BETTER THAN BOUILLON! I love this little product. It has made me love soups again! Any recipe that calls for veggie broth has now had broth made with this. And chicken broth? Oh yeah, there's a vegan version of that, too!
Uncle Bill's Vegetarian Minestrone
I don't know whose uncle he is, but he makes damn good minestrone. Throw in all the veggies you want, including tomatoes, which are a great source of lycopene (cancer-fighter). Whole grain pasta plus beans to round out your proteins equals one big bowl of healthy!
Chickpea and Rice Soup with a Little Kale
This is the mother load of comfort soups! My MIL, who does not like kale and does not like chickpeas, ate this two nights in a row and asked for the recipe! Anyone who has had a conversation of more than 15 seconds with her this week has heard about this soup. Full of chickpea protein, whatever rice you'd like, and superfood kale! Love love!
Enjoy some healthy yums from my kitchen to yours!
Thursday, January 24, 2013
There, I said it.
At 41 years old, I'm retiring.
My employer has been AMAZING through all this. I truly believe we came to St. Louis because it was the place for us to be as we went through this crazy cancer journey. A huge part of that "right place-ness" was for me to be working with the people I do and at a place that has taken care of me since Day One of my diagnosis four years ago, which happened to be only about three weeks after I started working for them. Last July/August, I decided to cut down my hours to about 18/week and they were very supportive. Technically I was on what's called "Intermittent FMLA", which means I had 12 weeks of job-protected leave,which I could use here and there to total 12 weeks, which lasted from March until Oct. My FMLA time ran out in Oct, but I wasn't ready to come back full time. I was headed into the clinical trial and didn't know what that would look like for me or what I would soon need. My employer offered me an extension of job-protected time of 12 calendar weeks, which I took, though any time I took off was now unpaid since I had used up my vacation and sick time. In the meantime, Jason and I started looking at our long-term plan.
Last year after my diagnosis I met a couple of other metsters (women with metastatic breast cancer) at a conference who said they had stopped working and were off on disability and were incredibly happy with this decision. I had no idea what they were talking about, but called one of them later to ask questions. I'm so thankful I did! (Thanks, Jen!) I had no idea that metastatic breast cancer pretty much automatically qualifies you for long term disability (LTD). I called my HR department and found out that my employer offers LTD with a much shorter application time (6 months) than Social Security (2 years!). Financially it's a no-brainer. I can take care of myself full time without the stress of work while trying to arrange doctor appointments, tired days, etc. and still get a % of my salary every month. We did the math and figured out that we could live on it. I might not get my daily Starbucks fix, but that would be OK.
Psychologically, I wasn't comfortable with this at all at first. I wasn't ready to not be working at 41. However, after talking with my boss and team about it, and giving it a week to grow as an idea in my head, I was really ok with this idea. In fact, I'm excited! Let's be honest... we are all replaceable at our jobs. I love what I do and the people I work with, but I will keep busy, and those people aren't going out of my life, even if they tried!!
I don't have a date yet for my retirement, but I'm expecting it will be in a handful of weeks, maybe around early- to mid-March. I'm waiting to hear some eligibility determination info from the LTD company, and then we will make plans within my team at work. The good news is that if I make a huge health leap and feel like going back part-time or full-time, LTD allows me that option if my employer and I want to give it a try.
When I retire, I'll be asking for some assistance keeping my feet to the fire to be using my time to take the BEST care of myself every day. But that's another entry for another day.
Now it's time for this near-retiree to be going to bed! Good night!
Just to clarify... the purpose of this clinical trial is to take the approximately 10% of the original cancer that is left and just KEEP IT WHERE IT IS. No playing. No leaving the yard. No inviting friends to join the party. You're grounded!
If it chooses to shrink, all the better, but a good outcome is to keep things stable. No news is good news here, people.
Every month I have to get an EKG, because it's required for the trial.
Oh, and here's the newest additional to my medicinal arsenal:
Thursday, January 17, 2013
"When you are ill or disabled, do not feel you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either. All that is resistance.
If you have a major illness, use it for enlightenment. Anything "bad" that happens in your life - use it for enlightenment.
Withdraw time from the illness. Do not give it any past or future. Let it force you into intense present-moment awareness - and see what happens."
By the way... I found a link today on YouTube that has the entire audiobook of "Practicing the Power of Now" (7 1/2 hours!). Here it is. http://www.youtube.com/
Thursday, January 3, 2013
To My Survivor Sisters,
Congratulations! You are a SURVIVOR. Whether or not you like that term, you have survived. You have gone through a very difficult ordeal, mentally and physically, and you made it through! The pats on the backs, hugs of congratulations, and looks of admiration from others at what you have survived have helped to heal a part of you that felt tired and vulnerable.
Now that you are healing, I have some advice I'd like to share. For I've been where you are. And I'm now where you don't want to be, ever.
Four years ago, at 37 years old, I had completed chemo, surgery and radiation. I had an entire bachelors-degree's worth of knowledge (it seemed) in Cancer 101. I learned about the benefits of exercise in warding off recurrence. I knew the effects of stress and sugar on the inflammation of these little rogue cancer cells. I kept up on the debate about soy. I shared my research with others in conversations about cancer, hoping others could benefit from my experience. I continually was reading more to learn about my body and about how this disease operated inside it.
It wasn't enough. Apparently, you also have to CHANGE in response to what you've learned.
Going through it all the first time is exhausting. You just want some sense of normal again. The last thing you want to do (or at least the last thing I wanted to do) was to figure out how to overhaul my lifestyle. I was still working full-time, still raising a little girl, still trying to find time for a date night here and there with my wonderful hubby! And even having gone through all that treatment, coming out on the other side can give you the feeling of being invincible. It had to be a fluke, right? There is comfort in thinking that this was the one time the odds were not on your side.
But that is NOT the truth. Getting cancer was not the flip of a coin or the roll of the dice. There is something in YOUR body that is built that way. Something in YOUR body likes to make cancer cells. It's in your physiology somehow. Science. And if you don't make changes in your life, there is a good chance that your body will do it again. Science is somewhat predictable like that. You might still be taking medications to help prevent recurrence, but please don't rely on them. They are not guaranteed. Years ago when I was taking birth control pills, I remember thinking how odd it was that I was taking them to be sure I wasn't going to get pregnant, and yet I didn't even know for certain that I COULD get pregnant. I'd never tried, of course. Failing to prevent recurrence is the same thing, in my eyes. By the time you find out that cancer was NOT a one-time thing for you, that the odds were against you, it's too late. Once you have a recurrence, or like me, once your disease comes back and has found multiple other new places to create homes in your body (metastatic), the stakes are different. Making changes at that point doesn't have the same effect.
If you receive a diagnosis of cancer, whether for the first time or not, mourn your mistakes or regrets only briefly. Don't get weighed down by the "should haves" or "could haves", as they can be very heavy. Guilt is natural, but unproductive. It does not create the healthy energy you need right now, right down to your cells. Find a way to focus on making changes in your lifestyle. The doctors will help you deal with the critical needs, but your health and wellness are in YOUR hands. Every day you feed your body with what you eat, how much oxygen you breathe, the positive energy you create and fill up your space and life with. THAT is your job. The hardest part, at least for me, is to FIND A WAY TO ACTUALLY DO IT. Our lives are busy and we are tired (who isn't, right??), but this is THE most important thing to do every day. More important than our schedule, piano practice, clean dishes, watching a TV show or returning something to a store. And if you find those things happening every day, and things like juicing, exercising and meditating happening less frequently, make some changes. WAY too much is at stake. Get friends and family to help you stay motivated. Find walking or yoga buddies. Get up (and this one is VERY tough for me) just 15 minutes before your family to start the day with some stretching and quiet. Whatever it takes to remember what your priority for the day is. Every day.
The state of science right now says that I can't win this game. But I can keep playing for a while. And as many of you have heard me say, right now my job is to do anything I can to stay here and play this game because the state of science when it comes to metastatic breast cancer is changing every day. There are young whipper-snappers out there discovering new things all the time, and I'm sticking around and hanging out with smart doctors who are keeping me engaged in this fight at cutting-edge levels.
To those of you who have fought this fight and won, I applaud you! Like everyone else, I give you hugs and admiration and wish you continued health and happiness! And with my arms around you in a big hug, I will then turn you around and give you a kick in the ass to get moving to continue to do everything you can to stay healthy. Please return the favor.
Your Sister Jill
Wednesday, January 2, 2013
My labs look great today so we are about to begin the full clinical trial! Just waiting for injection to arrive. Jason decided to nap on my bed. He asked me not to post a picture "because this won't look supportive", but how can I pass it up???
Awesome wishes for all of us to have a happy, healthy 2013!