Friday, September 16, 2011

What to Expect When You're Recurring

It seems these days all of my friends either have a new bundle of joy or are expecting a new baby. That's what happens. First comes a slew of weddings, and then the babies follow! In contrast, with my crazy cancer roller coaster, it's looking more and more like Daisy is the closest the Big Man and I will get to having a baby for the foreseeable future. A puppy that can go into her crate for 4 hours while I'm away at chemo is about all the responsibility I can take on right at this moment.

So...instead of the What to Expect When you're Expecting that all my friends now seem to own...I've decided to introduce to the world an alternative: What to Expect When You're Recurring: Tips from one metastatic cancer patient to another!

It's hard to believe, but I've now been on my latest Gemzar/Herceptin drug cocktail for almost 2 months. I've learned that it takes two full months to get into the swing of any new cancer journey. Most chemo drugs, for whatever mysterious reason, seem to be given in "cycles" that typically are 3 weeks in duration. I have now had 2 full cycles, so I am a bit more knowledgeable about this latest drug. In doing the math, this regimen is my 8th chemo cocktail. In 6 years, I've been on 15 different drugs by my count, all of which have been added, subtracted, tweaked, shaken and not stirred to create a special little cocktail that is just my own. It's been a whirlwind of changes and through it all I've learned a lot about how to deal with these cancer obstacles practically and with a little touch of grace. This latest cocktail has confirmed my previous observations, so allow me to share my hardearned tips and tricks with all of you here.

If you don't have cancer, I hope you never have to reference this list of tips. Alternatively, if someone you love is staring cancer in the face, or if you are dealing with this scary journey first hand, I hope my experience can shed some light on what happens after the doctor tells you "it's back." If any of you have any additional tips that I should add, please make good use of the comments section!

What to Expect When You're Recurring

1) Life Goes On:
In the immediate aftermath of a cancer recurrence, you are going to be a ball of emotions, and rightfully so! I believe you run the gamut: from fear to anger to self-doubt to worry about your loved ones, and finally, to acceptance. You will reach acceptance. And once you've reached acceptance, you will find that life really goes on. The dog still needs to go out each morning. The house gets dirty. Dinner needs to be made. Laundry needs doing. The kids have to get to school and soccer practice. Things break. You will find solace in these day to day activities, and you will find their constancy both helpful and eery.

I was reminded of this last month. I had gotten one infusion of Herceptin and Gemzar, and was gearing up for infusion number 2, when it came to my attention that our water heater was leaking. The water heater didn't get the memo that I really couldn't deal with a plumber right at this moment in time. I simply couldn't believe it. After 15 years and countless condo owners, our water heater chose this moment to start dripping. Luckily, it was only a drip. Nothing was exploding yet, so I put on my big girl pants and decided to deal with it immediately before the situation got any worse.

Well, the situation got worse. It turns out we have to have our whole second bedroom built-in closet ripped out in order to get the water heaters out of our back door. I have to enlist carpenters, painters, plumbers, and delivery men. I have taken phone calls from contractors from the chemo chair, and I've at times wanted to both laugh and cry and come clean to my plumber that I really can't deal with him right now because I have just had a recurrence! But I don't. I don't want to make him feel uncomfortable. So instead, I pick up the phone, I collect dozens of estimates, I navigate the politics of my condo association, and I get out my checkbook.

Stuff like this happens all the time. The week after my double mastectomy, a water main broke right outside of our building and threatened to flood our condo and suck my car right into the sink hole that I had inadvertently parked on. Electricity goes out. Holidays and long standing travel plans are disrupted by your cancer recurrence. Try not to cry. Try instead to find some solace in the rhythms of everyday life. Take out all your frustration from your diagnosis on your trash men who missed your weekly pick up. Make a To Do list while you're sitting in the chemo chair. After that initial onslaught of tears, the day to day stresses actually help.

2) Clear your Calendar for Two Months:
As I implied earlier, it takes a good two cycles of a drug, a full two months, to really know how you will feel and what your good days will be. You will have good days. But every week will now be a 3 or 4 day week instead of the usual 7. Or you might miss one week or two weeks entirely every month. Your "month" will now be two weeks long. You're going to have to get used to stuffing a month or a week's worth of activity in 3 or 4 days. Until you know what you can handle, clear the books. Pull the cancer card. Cancel everything. After month two, you'll find you are ready to start piling things back on. Time and time again I've wondered how long it will take to get used to a drug regimen. 8 regimens into this journey, I've finally found the magic number, 2 months.

This two month schedule is also a good rule of thumb for most surgeries that I've had, barring any major complications.

3) Accept Help
For those first 2 months, embrace help. You can rely on the kindness of strangers, or you can pay someone. Landscapers and cleaning ladies are your best friends. Most grocery stores have some kind of delivery service these days (www.peapod.com) and swallow your pride and have your dry cleaners pick up and drop off all the laundry. There is no sweeter feeling than coming home from chemo, opening the front door to the smell of pine sol, looking out the window at your freshly mowed lawn, and climbing into your newly laundered and folded pj's and taking a good 12 hour rest! Embrace the help!

4) Embrace Drugs
Every chemo cocktail comes with its own set of side effects. Sadly, the usual way to deal with these side effects is with more drugs. I've struggled to come to terms with the sick, twisted logic of taking drugs to combat the side effects of other drugs. It seems like a real catch 22 to me, especially since my poor liver has cancer in it and also has to digest all of these crazy cocktails, but I have finally come to realization that a life in pain or a life of nausea is no life at all. I live a much fuller life when I throw up my arms and embrace the drugs my doctor recommends.

So far, I love my Gemzar/Herceptin cocktail, but at first, before I embraced drugs, I didn't love it at all. I was running fevers. I had night sweats and chills. I had awful stomach pains and bloating. I wasn't eating. Now my doctors have added some steroids to the IV drip I get every week to combat the stomach pain and inflammation. I also take some prescription pills to combat the night sweats, and I pop Tylenols before, during, and after my infusions each week to keep the fevers from even developing. I feel like a total crackhead. I still feel sorry for my liver, but I'm not rolling around in pain every night. I'm able to get a good night's rest, which leaves me ready for each morning. I am living a full life on this chemo, and that to me is the definition of a chemo cocktail worth loving!

I have, however, drawn a line in the sand with this rule. I hate painkillers. I don't like the way they make me feel. Prescription painkillers scare me and leave me exhausted in bed and not feeling like my perky self. I try to combat pain with Tylenol. I've decided in the past that, if the chemo pain is bad enough to warrant prescription painkillers on a regular basis, I'm going to have to say no to that particular regimen. That is my personal limit. You are going to have to discover your personal limits through trial and error. Be open and honest with your doctor and nurses. No side effect is too small to ignore. Speak up, and chances are good that together your team can come up with a good plan for living a full and happy drugged up life.

5) Stop Embracing Help at Some Point
Eventually, you are going to find that changing out of the PJs and taking a trip to the store is a good thing. Having a pile of laundry and a needy child or dog is the only thing that's going to force you to get out of bed. Chemo makes you want to sleep. Your blood counts are going to be all over the place, and your body deals with that side effect by getting tired. By all means, give your body a rest, but it isn't healthy to live in bed either. So, by month 2, by the time you know your schedule, you should start cutting back on all the assistance a bit. That said, I still embrace the cleaning lady. Her help every other week allows me to focus on other tasks that I've always been meaning to get to. If she can vaccuum and dust, I can finally get around to cleaning out my fridge!

6) Don't Over Commit
Even after the 2 month window, you still need to listen to your body and stick to a strict sleeping/resting schedule. For me, I get Gemzar/Herceptin every Wednesday. I have timed the infusion for 5pm. The infusion department is open until 8pm everyday so I can get a full day of work in before heading to the doctor around 4. I'm home by 8pm. It is understood that Big Man is responsible for preparing dinner/ordering take out every Wednesday. I am asleep by 8:30. A full 12 hours is more than enough for me before I get back to work on Thursday morning.

That said, Thursdays I try to keep my schedule at work pretty light. Thursdays are an answer email, keep the lid on things kind of day. I try not to lead any major conference calls or meetings. I'm simply not in a good spot and probably wouldn't be sealing any major deals on Thursdays. Instead I try to close out projects Monday through Wednesday.

I've noticed I am ready to take on the world on Fridays, but I get pretty tired again by Friday evening. I think that might be my blood counts dropping or something, so I leave weekend plans for Saturdays.

You will find your own schedule. That's what the 2 month window is for, but make sure once you know your schedule that you stick to it. I have found it is better to underpromise and overdeliver with cancer. Otherwise, you will be letting people down. I hate having to cancel long standing plans. I hate dropping the ball. I have dropped too many balls in these past six years, so instead, I stick to my schedule.

7) Don't Bring Friends to Chemo
This rule is a tough one for many people to understand. Allow me to explain. At chemo, various people come in and out to check on you. You might end up chatting with your doctor about your menstrual cycle, menopause, constipation, nausea, any number of embarrassing side effects. Your doctor might want to do a physical exam that requires your friend leave the room. You might get sick to your stomach while stuck in your chemo chair and need a bucket. Long story short, your chemo visits are a down and dirty affair. Through trial and error, I have found it is best to limit visitors to your most intimate circle of friends and family. Don't have more than one visitor per appointment because, frankly, the doctor's clinic rooms are small and chairs at chemo are a precious commodity. If your doctor comes to speak with you and you have a posse of 10 standing around, it's just an awkward and graceless affair. It's best to keep the friends at bay and ask them to help in other ways. "Keeping you company" at chemo is simply not the best use of their time. Instead, I bring my to do list with me and start checking things off. Chemo is your chance to keep up with your emails. I have written many a thank you note for a gift while sitting in the chemo chair. Bring a good magazine, a good book, or a good movie. Don't bring a posse of good friends!

8) Enjoy Your Next Three Months!
Any doctor worth his salt is going to tell you that we can't know if a drug regimen is working unless you've given it time to work. When you first receive news of a recurrence and you go onto a new cocktail, you're going to immediately look for signs of effectiveness. Are your tumor markers going down? Are you still jaundiced? Is the pain improving? If you have a palpable lump, has it decreased in size?

These are all great questions to ask and your desire to know is understandable. I'm sorry to say, though, that you need to simply hurry up and wait. Give your body the time it needs to navigate this new drug. Give the drug the time it needs to work. In most cases, you won't receive any news or know if anything is working for 3 months, until your next set of scans. There are sometimes exceptions to this 3 month rule, but that's the general time frame.

This delay might stress you out, but I'm begging you to take advantage of this time. Once you know your new chemo routine, plan some trips. Take a look at your life, take a look at what in your life you want to improve or things on that bucket list you'd like to check off. Get started living. You can live a lot of life in 3 months.

Daisy and Me....enjoying our cocktail..
and enjoying our  Next Three Months!
Big Man and I did this together after my most recent setback. I realized that, while most of my peers were having babies and going back to graduate school, I needed to set more attainable goals for my next chunk of free time. I couldn't get a law degree in 3 months, and I didn't want to start something and then have to stop it and disappoint myself if this Gemzar fails to work. So instead, I signed up for tennis lessons. I set a goal of 50 more good pages in my manuscript, rather than set a goal of finishing the whole thing, and I signed Daisy up for obedience classes. My goal is to get Daisy on board as a "therapy dog" to help sick kids in hospitals or people stuck in nursing homes. These are all short term goals that can easily be attained in the 3 months God has given me.

This last tip goes for all of you, dear Readers. What will you do with the next three months of your lives? Think long and hard. Make it a good goal, and see if you can't find a goal that you'll actually finish in three months!

So many of our lifelong goals are long term and focused on a point way in the future. Try to find a goal that can actually be started AND finished in the next three months! It feels really good to accomplish something, and we so often don't get that satisfaction in our busy, multi-tasking world!

13 comments:

Claudia said...

Oh Bridget, you are an inspiration. Your strength and determination are so admirable. I was "introduced" to you on Gini Dietrich's blog Spin Sucks and I am delighted to read your post. Your list of things to expect and how to handle the recurrence is well thought out and useful. I have been in the healthcare industry for all of my adult life as a nurse and then as a dentist and these "tips" are something that should be talked about with not only people experiencing recurrence but newly diagnosed people as well.
I continue to wish you well on your journey and keep you in my thoughts.
Claudia

Patty said...

Dear Bridget, your generosity of spirit is both inspiring and overwhelming. Even at a time when you could be saying "poor me" and feeling sorry for what is going on in your life, you decide to share the benefits of your experience with all of this so that someone else's journey might be a bit easier. You are an amazing woman and an inspiration to me every day. Here's hoping that this is a magic bullet for you and that the 3 months turns into decades of life for you to share with Big Man and Lil' puppy. Sending you much good energy!
Patty

Karen said...

Hi Bridget,

I have been following your blog for well over a year after my daughter (and owner of the 3 Day Mug) Kristen Cincotta provided a link to it in her blog Kristen Walks. It has been uncanny how in sync our last 18 months have been since I was diagnosed with the dreaded recurrence in 2010 after 22 months of cured. But more importantly, I am struck by how you seem to be expressing exactly what I'm saying/thinking at different points in this journey. I've frequently thought about emailing you but after today I absolutely had to. I've been undergoing an unusual regimen of Herceptin plus Tykerb because the bone marrow in my hips was fried by radiation for pain in April. My counts are too low for the 'traditional' cocktails but going without treatment was also not an option so... I had my 3 month hold your breath scan last week and hip, hip hooray, spots actually shrank instead of multiplying like they had the last scan. I found myself elated and while attending a national conference where I saw many long time friends I found myself saying I now plan my life in 3 month increments. And for this particular 3 months I'm thrilled because I don't have to eat up 2 months 'adjusting' to a new regimen. I actually told Kristen that earlier today and then she saw your blog. Like I said uncanny. So I signed on and read it as well and there you were talking about not having people go with you to chemo. I am so with you there! It's become my time to be away from the demands of work, family, volunteer stuff and just be. I work as a consultant with a national practice and on some days live on the phone, so it almost becomes a welcome break where I don't have to BE POSITIVE for someone or explain anything or figure anything out. Like I said just be and read a book in the quiet and acknowledge to myself - yup, I have cancer but I'm dealing with it and living my life and this is just part of it.

So thanks again for expressing this so well.

I did the Gemzar/Herceptin regimen from mid Fall last year to early Feb before its effectiveness faded. Another long time one like my current one. I hope you have similar results and get a long/forever without any more 2 month adjustment periods.

I think of you often in your fight and am rooting for you all the way!

Karen

Conquering Cancer By Living Well said...

Wow, I needed to read this. I'm currently waiting for tumor marker test results (the last one was up a small knotch and the oncologist has ordered more done, along with a CT which will be fairly soon). I'm worried, but not overly, as it really is only a "knotch". But I constantly wonder "what am I going to do, how would I get through it again", etc after being fine since January. Then I read this. "Oh ya, I'll just continue on with life - that's what I'll do". Thank you so much for this post - I needed this. I wish you the absolute best, and also want to say what a great writer you are! And your attitude is what is going to get you through this - it truly is.

Liliana Holtzman said...

Thank you, Bridget.

When I feel sorry for myself, I read your blog. You put things in perspective.

Daisy is too cute for words!

Mandi said...

Cutest dog ever! Cheers to you. I really think these tips are very applicable to the newly diagnosed also. My biggest challenge is not to over commit - I have been in treatment for 9 months and still struggle with the reality of whether or not I will make it to something. Bravo and *hugs*, you are awesome.

ihatebreastcancer said...

Hi Bridget
I have a low volume of bone mets. I thought this was such a helpful post--I have shared it with others.

Don't know if you are up for it but the 2011 Natl Metastatic Breast cancer conf is Oct 28-29 at Johns Hopkins.

All MBCN events are free and open to family, friends and health care professionals.

Speakers include: Stephen Baylin, MD ; Leisha Ann Emens, MD, PhD ); Carolyn Hendricks, MD; Robert S. Miller, MD (; Tanya Michelle Prowell, MD ; and Richard Cedric Zellars, MD.

Breakout sessions will include:
>Caregivers’ Roles
>A Patient’s Perspective on Navigating Social Security Disability
>Living with Uncertainty: An MBC Panel Discussion
>Role of Surgery in Soft Tissue Mets
>Managing Side Effects
>Nutrition and Wellness

For information on hotels, scholarship availability, parking, and directions see: http://mbcn.org/special-events/category/hotel-transportation-and-scholarship-information/.

Anonymous said...

Bridget,

I saw you on Sat. at the 3 - Day in DC. I wanted to talk to you but didn't want to freak you out. You are AMAZING. Just wanted to let you know your blog helped my raise the last of my money for the 3 - Day. You make people relieve this is not just our grandmothers disease. Please keep sharing. My hope is the money I raise will find the cure you and some many others need.
Dawn

Anonymous said...

bridget-

i'm a human genetics grad student at mcgill and i've been reading your blog for the last year or so. people like you are the reason many of us keep doing what we're doing. on that note, our cancer center recently made a silly youtube video to support the research at the center. for every hit the video gets, our sponsor will donate to cancer research at our facility. thought it might bring you a laugh, and please, pass it on. every hit means more research money!!

http://www.youtube.com/watch?v=Hg1yw8D3glE

Marsi White said...

I love your blog. My friend just sent it to me. I am curious as to what type of work you do. I am not sure that I can focus enough to go back to work...though I have a job waiting for me. Your blog makes me think that maybe I can? Hmm...

Alexis said...

Hello - I stumbled upon your blog from another blog? I've only read a few excerpts, but I love it so far.

I'll be honest that reading your blog made me a lil scared about a reccurrence of my own. However, I try not to live my life in fear & your tips are great. I wish you the best as you make your way through treatments. You're in my thoughts.

Alexis

Tequila Sepulveda said...

Hi, Bridget, I definitely enjoyed reading your 'what to expect' bullet points.

My problem always seems to be with number 4, Embrace Drugs. I hate painkillers, and they make me so sick, ... it's hard to embrace them, and I do try, but gads, we're already on so many meds.

One of my blog posts (http://fearnotwoman.blogspot.com/2011/05/ocular-migraine.html) talked about having to take one med to combat the side effects of a med, then one to combat that one, and etc, etc, etc.

This past month, during a hospital stay dealing with a pulmonary embolism, I made the choice; I will deal with the pain, but I cannot stomach the nausea. I'm going to check out accupuncture for the pain.

Good luck to you, Bridget, and thank you for sharing your experiences. Knowledge is power, baby, and boy, do we need all the power we can get!

Hugs,
Tequila Sepulveda

Susie in Knoxville said...

Hi Bridget--I've been following your blog since my sister-in-law was diagnosed with stage 4 last October. She is fighting the fight too. I just wanted you to know that inspired by YOU and Becky, I got a team together for the Komen Race in Knoxville. We just had six members and two are my daughters who didn't raise money... but we still reached our goal and raised over $2500. I plan to do this every year until there is a CURE or until I can't walk it any more... You are an inspiration to EVERYONE. I don't know you but I think about you all the time--and wish you all the best.