September 13th, 2013 §
It’s always right when they pull the bar down over my head and jam it into my lap on the rollercoaster that I silently start screaming, “Wait! I changed my mind! Let me off!”
By then, however, it’s too late.
With a jerk the car moves forward, its underbelly grabbing the hooks to lift it skyward.
By the time we are moving, climbing, the car is making a clicking sound and I am sure this was a mistake. I wedge my knees against the back of the seat in front of me to minimize my movement.
I steel myself, knowing the drop will come whether I like it or not.
And then there is that moment, that nauseating violent moment before the floating…
For a brief portion of a second I’m airborne, held in by that suffocating bar. Down we go and I slam back into the seat. I tell myself it will be over soon. I just need to ride it out. It will end.
These days I’m on a roller coaster ride that doesn’t end — well, not anywhere good, anyway.
When we last met here for an update, I said the increased dose of chemo had shown a response. That response is proving to be short-lived. Yesterday my tumor markers were up again, back in the range where we need to discuss changing chemo again. It’s been about four and a half months on this chemo combination of Aromasin and Afinitor (I continue with monthly Xgeva injections).
This is the cycle of metastatic breast cancer: chemos inevitably fail. The cancer becomes resistant, mutates, signals a new pathway to drive its survival. We have no way to know how long each will last. When you read studies and “success” is deemed an extra two months of progression-free survival you know you’re dealing with heavy realities.
The immediate plan is to increase the Afinitor one more time, to the maximum. I’m told no one tolerates this dose regimen for long because of the side effects. But I’m almost at that dose now anyway, so let’s give that a go. Even if I can get a response for one month, that will allow me time to figure out what will come next. The two options are to continue with a targeted, anti-hormonal therapy of some kind or begin IV chemo after having a port put in. There are pros and cons to each, I won’t go into them here. Once I’ve made a choice I’ll fully explain it, of course.
And so, for now, I increase the dose. I wait. I retest again one week from now, and two. By then we’ll have a plan, and likely be moving on. Another tally mark of treatments tried to buy me time.
It’s too soon:
I fear the safety bar is not locked.
I fear that each time I reach the top of the hill again I’ll be ejected from the ride, skyward, only to plummet to the ground.
Two housekeeping notes:
1. If you only want to read updates on my chemo status and current health, I make it easy for you by titling these posts “Update” + the date as the title.
2. I’m pleased to report that this website is now optimized for mobile device reading. If you read the posts on your smartphone or tablet you will note that you no longer have to scroll left and right to read; the posts are nicely contained in columns. There is a menu at the top to navigate the site and a clean layout. To comment on posts on your device, look at the end of each post for the “replies” link to click. This should make it easier for those of you on the go to leave a comment.
August 29th, 2013 §
Remember me pretty,
Remember me whole.
Remember me the way I am today
While friends still honestly say, “You’d never know.”
Let me tell you:
It’s not what it looks like,
It’s not what it seems.
Those times are long over,
Now I am on my own.
The beggars have all ridden.
My wishes: horses gone.
I float above it all,
Watching as I do.
Surrounded by people,
Feeling so alone.
At the stoplight tears come,
A young man pulls up next to me
Glances once… twice…
With an engine rev, he’s gone.
I hide it pretty well, you see.
They say, “You look so good,”
“You are so strong,”
But in the space that’s in between
I fall apart
I kick and scream
I claw and grab on for dear life.
What is happening here:
Choice is gone,
Chance is Queen,
Luck will run right out.
Everyone placed their bets?
Let’s see how far we can go.
June 8th, 2013 §
Two weeks ago we had a family photo session with my friend Julia Arstorp. Julia has taken numerous series of photos of us through the years and I really wanted to have updated photos of all of us. The children have changed so much in the past two years! I will share some of them throughout the next few months. I have updated my Welcome page of the blog with a few of them too. I know some of you only read these posts by email so you can always take a peek at the home page to see what’s new.
One of the photos I love most is this black and white one with our new dog Lucy, a Pembroke Welsh Corgi that we got in January. If you follow me on Twitter you know how much I love her. She is my first dog ever… the kids always wanted a dog but I wasn’t sure about the commitment. Clarke had a great Corgi named Pearl when we met so I knew the breed and loved their personalities. Lucy is two now and she has brought such joy to our lives.
Most people who know me are shocked I not only let Lucy on the bed and throughout the house. My attitude is she is a part of our family so she gets to share. She’s not a big snuggler (prefers to lay next to you or under the bed) but we have had some great naps together over the past few months. She is great at fetch which is a lot of fun to watch as her little legs run so fast and her big ears get pinned back to her head as she scurries… she is fast on those little legs!
The end of the year is very busy now with school ending for all of the kids. Colin will graduate from elementary school and start at the middle school in 6th grade in the fall. Tristan will be going into second grade and Paige will be a high school sophomore (eek!). Right now we have baseball playoffs, karate belt testing, and some upcoming visits from family.
I’ve been managing the side effects from the new Aromasin/Afinitor regimen pretty well. Right now I’m still on 7.5 mg of Afinitor a day, my biggest problems from the drug combo are severe muscle and joint pain, thyroiditis (I also have Hashimoto’s Disease), loss of appetite with weight loss, and migraines. The mouth sores and head irritation have improved.
Bloodwork yesterday showed a drop in my tumor markers, an indication that it is still working now after about 2 months. This gives me a two week reprieve in worry. I really do live in two week increments right now. I’ve been able to do all of the things I need to do and most of the things I want to do. I am learning more and more the difference between these two things.
I’ve attended every single one of Colin’s baseball games. I got all three of them to the dentist for checkups and their regular doctors’ appointments. I keep a regular schedule right now but try to rest more on weekends when I can. I am glad for the normalcy that my days mean to them and to me. We all know it’s not truly normal, of course, but the comfort of routine is real, especially to them. I find it hard to believe the last 8 months have been since my diagnosis of metastatic breast cancer.
I gave an interview to the Daily Beast this week about Komen’s cancellation of many of their walks this year because of drops in funding despite Nancy Brinker giving herself a pay raise to $685,000 a year. I wish the piece had gone into more depth about the lack of funding for metastatic research, but I still think some good points were used from the interview. You can read it here.
If you are looking for a place to donate money for breast cancer research, I do have a donation page at Sloan-Kettering which funnels money to metastatic breast cancer research. You can see the page here. It has raised about $17,000 since last fall.
I hope you all have a good weekend.
Find a bit of joy in the world. Share it. If you can’t find it, create it…
March 28th, 2013 §
Limboland is part of stage 4 cancer. On a daily basis I don’t know what’s happening inside my body. I often think about the cancer cells and wonder what they’re doing. Are they dying? Multiplying? It would be so nice to have a reliable blood test to easily and accurately measure how many of them there are at any given time. But these tests do not yet exist for us.
My CA 15-3 test again showed a slight elevation from two weeks ago. The numbers have been bouncing around over the last few months (expected) with a slight upward trend (undesirable). It’s hard to know what this means. A few points here and there are not cause for alarm. This volatibility is inherent in this test (which is why some oncologists don’t do this test at all, and why it can’t be used as a screening device. Also, in some people the test doesn’t reflect changes in the amount of cancer present at all). So… it’s a bit to me like trying to juggle Jello.
Of course I want to walk in and have my number be lower than the previous time. But that’s not always possible. With the exception of my hands I’ve felt good for the last two weeks. I’ve been in a frenzy of activity this week with Tristan’s 7th birthday this weekend (more about that in the next few days) and lots of activities with the kids. How I feel is important; while blood tests can show how my counts are, lack of pain in new areas is good too. I received my monthly injection of Xgeva today as well.
I’m back at Sloan Kettering next week and Dr. Dang and I will huddle and strategize. Today my local oncologist and I talked about some ideas about how to treat this test result and what it potentially really means. Right now it seems we are in watchful waiting (not that there is anything new about that). As of today no repeat PET scan is scheduled. We will see if that decision changes next week. My prediction is we wait two more weeks to see where the levels are then and re-evaluate at that time.
Chemo starts this Sunday. I’ve been doing the maximum recommended dose for 5 days, and a slight decreased dose for 2 days. I think this time I’ll be pushing to the maximum dose for all 7 days. It’s hard to know what price I’ll pay for doing so, especially during a very busy week next week (Sloan appointment and then another gig on the Doctor Radio Oncology Show on Wednesday at 1 PM which I hope to attend in person). My hands are my biggest issue, this is just what happens with Hand/Foot Syndrome. I continue to treat my hands with all sorts of products and care, but the truth of the matter is that this is what Xeloda does when it is taken and leaches out of the capillaries. The only true remedy is a decreased dose or discontinuing it altogether. That’s not in the cards right now (thankfully).
It is always hard to hear news that’s not what you want. I’m sure some people would be filled with anxiety and upset after this type of news. I like to give myself a ten minute pity party and then get on with life. If I give myself up to worry and dread for the next two weeks, what have I accomplished besides ruining two precious weeks of my life? Instead I went to the grocery store and stocked my house with food for the long weekend. I came home and played with my new dog (sweet Lucy is especially lovable in times like this).
I am a role model: my children are watching how I handle all of this. Raising polite and kind children is not enough. My children’s mastery of resilience is as important as any other life skill I can teach them. If I become debilitated by anxiety, don’t pick myself up and press forward, I am teaching them a lesson they do not need.
It’s okay to be emotional or upset at bad news. Complete denial serves no one. Acknowledging emotions of anger, sadness and fear but still displaying strength, stamina and persistence is what I try to do.
I hate the turn my life has taken. I hate that this is what is happening to my family and to me. For now, though, I continue to focus on all of the things I can do, and am doing. I pour my heart out on this screen. Some people think I must be depressed all of the time if I have these dark emotions evident in my posts. I can assure you that this is not what I am like all the time. Those feelings exist, and are important. I wouldn’t be human if I didn’t have them. It’s important to get them out not only for my own well-being but also because I know many readers with cancer tell me I’m speaking for them.
So, it’s not what I wanted, but I’m not sounding the alarms. We watch, we wait, we treat. I consciously do the best I can every day. Some days I do better than others. Some days I have a short temper and take my anger at cancer out on my husband or my kids. I’m not perfect. I apologize to them. I tell them I’m trying my best but sometimes it just breaks through. They see that I am human too. I make mistakes.
I draw strength from you all every day. Thank you for your support.
January 31st, 2013 §
I always think these updates must be boring to read. I know they’re necessary, and important. I know this is how most of you get the nitty gritty details on my treatment. Somehow, though, I always wonder if they are actually educational or if they are too technical. So, that’s why I try to limit them to about once a week or when there are changes. My goal is to show you how these decisions get made (in my case only). Some cancers have very specific and formulaic treatment schedules. Metastatic disease often does not. It’s unclear which drug(s) will work and for how long. It’s never known how a patient will tolerate the drug initially and cumulatively as time goes on. The patient has a lot of leeway in many of these cases. There is no blueprint. A good team has communication about options and constantly revises their strategy.
I had this week “off” from chemo. The last few days I’ve felt very good. I have been spending lots of time with our new dog, Lucy, who has brought joy into our home in so many ways. We just adore her.
I was at Sloan Kettering last week and today I met with my local oncologist. Fortunately everyone in agreement after a review of all of the options. One of the things that’s always a concern is quality of life. My doctors are very keen on making sure I am comfortable and able to do things I enjoy. The balancing act of aggressive treatment to extend life without sacrificing too much quality of life is an integral part of treating metastatic cancer. There is no cure. But the goal is holding off the inevitable as long as possible.
I’ve had lingering trouble with the monthly IV bone drug Zometa. Some readers suggested I ask about the other available drug Xgeva, a subcutaneous injection also given once a month. They anecdotally reported fewer side effects. Both of my doctors do not believe Xgeva actually is better for my needs cancer-wise than Zometa, but also agree it’s not worse. One option was to try an IV steroid infusion of Decadron immediately prior to the Zometa to see if it helped with side effects. The other option was to try to the Xgeva and see if I had any side effects from that (most people report fewer to no problems with it, though most also do not have problems with Zometa after the first one or two times). I’ve opted to try the Xgeva. I would usually have gotten it today (28 day interval) but I have plans this weekend that are very important to me. I don’t want to risk being ill and having to cancel. It will not be a problem to get the injection on Monday, so I will postpone it for a few days. We’ll see how I tolerate the Xgeva shot and go from there.
My tumor marker number stayed relatively constant after that small increase two weeks ago. This is good, but leaves us in a bit of a quandary. We aren’t yet at the point of doing a repeat PET scan. The rise is not enough to warrant that, though we will do it soon. Neither is the increase enough to assume the chemo has stopped working after initially being responsive. We don’t know, as I said in the last update, if it’s an anomaly or a trend. The only things that can show us are more data points. I happen to like data points. I like seeing what happens every 2 weeks even if it means more of an emotional rollercoaster. We are only 4 months into this and I don’t feel that we have a handle on how I’m responding yet. Only time can shed light on that. I did have a good initial reaction to the drug which was encouraging.
So… since we’ve achieved a good decrease in the last 4 months with the Xeloda but now that is slowing down and I seem to have “bottomed out” on its efficacy, what now? We want to keep everything where it is. If we can get more of a decrease, that’s the best. If not, we need it to hold steady. We all agree it’s time to try again to increase the chemotherapy dose and see if I can both tolerate it and get a stronger marker response. I started at 8 pills a day in the beginning (for about 2 months) and had to decrease about two months ago to 7 pills a day when side effects became intolerable.
It’s time to walk into the fire again. There is no manual for how to do this. We all brainstorm, we talk about what my goals are, we talk about what makes scientific sense. The idea this time is to increase, but not go back to the 8 pills for the whole round. Instead, to try to get more chemo in my system, I will alternate 7 and 8 pills for the week. We’ll see how I do. Debilitating nausea, stomach pain, hand/foot syndrome, and migraines have been my issues with this drug in the last month.
Also, I will change my start day. Thursday night was my usual. Lately, however, I’ve felt rotten on the weekends (both weekends this time around, as effects often last into day 10 or 11 which technically are “off” days for me). I will now start chemo on Saturday night or Sunday morning and see if we can shift my “rotten days” to weekdays instead. I want more quality days with my family on weekends if I can get it.
This is all educated guesswork, a constant dance of drugs and schedules and side effects and efficacy.
There is no manual.
There is no “must.”
There is only me, floating away, trying to grasp the fingertips of treatment and hope.
November 30th, 2012 §
Good news first: I’ve been asked to be a blogger for the new Huffington Post section called Generation Why which focuses on young people and cancer. At first I had to look to my left and right and ask, “Me?” because I haven’t really thought of myself as young in a while. But certainly issues facing people like me with cancer can be unique. The necessary pushes and pulls of being social for my children with the always magnetic desire to just be alone will be one theme I will write about for sure. A friend commented that he was “impressed” I was writing for HuffPo… I will have to remind him that Jenny McCarthy does, too, so it might not be as impressive as he thinks!
That said, I’m very pleased to have a wider audience for my writing. I hope the readers and commenters will be as nice as you all have been. The first post should go up this week and I’ve decided to have them use this week’s post “Alone” as my inaugural piece because the response to that one was overwhelming. I might as well start with a bang! I hope that piece will be one that represents my perspective well.
So.. the bad news is not terrible, but here is the latest news. While I started with very good tolerance to the 4th round of chemo, the end of the round ended up bringing hand/foot syndrome (palmar-plantar erythrodysesthesia) from the Xeloda. Hand/foot syndrome is not the same as neuropathy (though it may include some of those symptoms), which many people on chemotherapy experience.
Hand/foot syndrome is associated with a few particular drugs, Xeloda is one. The capillaries in your hands and feet leak and/or rupture, causing the chemo to spill into the extremities. This causes them to be extremely red, swollen, painful, sensitive to touch, cracked, peeling, and potentially ulcerating. Numbness and tingling also accompany the condition.
For the past month I’ve been trying to keep these effects at bay, but eventually the toxicity builds up. Fine motor activities like tying shoes are hard at the moment, anything that touches/puts pressure on hands and feet. Thankfully I have some shoes with furry insides and cushioning. Socks must be worn 24/7 and slippers at all times. Holding the steering wheel is uncomfortable but doable, thankfully. So many people have suggested I should do something relaxing like go for a massage or manicure/pedicure. Unfortunately between the broken ribs and a “no touching” order for hands and feet these things will have to wait!
I had to skip my last dose (there are 14 in each round right now) of chemo yesterday to prevent a flare. The plan will be to reduce the chemo dose to 3 pills in the morning and 4 at night next round to see if that will be enough of a reduction to stop the progression of the syndrome. If it isn’t, we’ll reduce again. The reduction in dosage is not rare. My understanding is that tolerating 4/4 for 7 days on and 7 days off for more than a few months is pretty unheard of.
I’ll have bloodwork on Monday, December 3rd and then meet with my local oncologist on Tuesday the 4th for a strategy meeting and check on the hands and feet. I’ll also receive my monthly IV of Zometa for my bones at that time.
Tomorrow (Saturday) sometime between 7-8 AM I’ll be on Robin Kall’s radio show which streams at www.920whjj.com. Stay in your PJs and join us! I think it will be after 7:15 sometime as the 2nd segment.
Thanks for the continued support and I’ll have a more creative post this weekend.