People call me brave and strong and inspirational. Generally speaking, I don't believe these compliments. I am simply trying my best to live a normal life in the face of great adversity, and there are tens of thousands of other patients and caregivers doing the exact same thing every day all around the world. There are hundreds of my blog readers who are just as brave, strong, and inspirational - they simply choose to battle quietly.
Furthermore, I know that all of you who've not been touched by tragedy, when challenged, would behave much the same as I have done.
That said, this week I do feel awfully brave. I am proud of myself. This week I feel like a grown up. I am wearing my big girl pants.
It all started Labor Day weekend. I was having some girlfriends over for brunch and, like any hostess, was rushing around trying to get things in order. Everything had to be perfect, and I was down to the wire. I was rushing around hiding dog toys, putting away laundry, finishing a quiche, arranging flowers. Running these last minute errands, I was running up and down the stairs a lot, and I noticed I had to sit down and catch my breath after each trip upstairs. I felt weak and short of breath. I thought I was perhaps coming down with a flu.
Over the course of the next several weeks, the breathlessness got worse. Lying in bed at night, I would cough uncontrollably. Coughing would wake me up in the middle of the night and I could hear wheezing in my throat. I sounded like I was 90 years old. My dog looked at me with concern and sniffed my face after my coughing fits. Something was wrong.
Monday, September 17th I was due for my third infusion of this new drug cocktail - Herceptin, Docetaxol, and Pertuzumab, and we were getting wonderful news so far. This drug cocktail was working! Over the course of several weeks my tumor markers had fallen from 1,133 to 387 and from 8,813 to 2,762! I was optimistic and encouraged. I was losing my hair, I was coughing and wheezing and feeling sick, but all of this was totally worth it if it meant I was winning!
I expressed concern about my breathlessness to my doctor in the hopes that she would have some prescription medication she could give me to quell the cough. I had tried Vick's Vapo Rub, I had stood in a steaming shower and had taken eucalyptus baths. I was thinking of investing in a humidifier. Nothing had worked so far.
The cough that I thought was not a big deal, apparently could be a big deal, because the doctor got very serious, cancelled my Monday infusion, and booked me for a series of tests on my heart and lungs instead.
The next morning at 7am, I showed up for an Echo cardiogram (read ultrasound) of my heart. I have had Echos before and always passed with flying colors. I saw this as a precaution and was looking forward to receiving my miracle drug on Wednesday after passing this silly test. I drove myself to the appointment. I don't even think I told Big Man or mom about the appointment because I simply assumed it was a precaution. Boy, was I wrong.
Two hours later, I was in an ambulance being rushed to Brigham and Women's Hospital for emergency heart surgery.
The Echo technician told me I had fluid around my heart, also called a pericardial effusion. The fluid was pressing on my heart, making it difficult for my heart to beat, which explained my breathlessness and general fatigue. I was in a daze, more concerned about what was going to happen to my car that had been left at the Echo location than what was going on in my chest. I was strapped onto a guerney, and reluctantly asked the EMT to pass me my cell phone. I said to the EMT, "I suppose I should call my husband and my mom, huh? This pericardial whatever is going to take probably a few hours to handle, right?"
He looked at me like I had three heads and responded, "Yeah it's going to take at least all day today, ma'am."
"Really, all day? Are you sure? Because I really don't want to have to call in sick to work? I had a really full day."
The EMT looked around the back of the ambulance in the hopes of finding some help dealing with the insane cardiac patient. "Ma'am, you are being rushed to the hospital for emergency heart surgery. I think you need to take a day off work. You should probably call....everyone."
Emergency heart surgery? What in the world? I'm 29! I feel fine, I swear!
It wasn't until I started making phone calls that reality set in. As I spoke to Big Man and said, "You need to come to the Brigham. I have fluid around my heart." That was the moment when my voice cracked and I broke down. The EMT looked relieved.
Big Man fled from work, his boss agreed to dog sit (we love you, Bee!), my mom was booked on the next flight from Baltimore to Boston.
Just when we thought progress was being made in my fight against cancer, it turns out this sneaky beast had gotten right to the heart of the matter. My cancer has metastasized to my heart. Even though the drug cocktail was working on my liver so beautifully, it is possible for a drug to work on one organ and not on another. Doctors called this a "mixed response."I had been afraid of cancer for years, but never before had the fear struck so deeply, and felt so serious. I had cancer in my heart? I didn't even know that was possible!? My heart, the very thing that makes me this small, passionate, headstrong young lady. My heart, that beats so strongly when I get hugs from my husband. My heart that feels like its going to burst when I watch my niece Annabelle waking up from a nap. My heart....the door to my soul, my very essence, that thing that we just assume will always keep beating. My heart has cancer. Wow.
The doctors put a drain into my pericardium - the thin lining around my heart. They drained out 600 millileters of fluid. The young residents were in awe of me, "how were you doing yardwork and taking the dog for a walk with 600 mL around your heart? I'm surprised your still standing! Man, 600mL." The cardiac surgeons were more professional, "You had a 'rather large' pericardial effusion."
To make matters worse, during my heart surgery and the battery of tests before and after surgery, they saw a build up of fluid in the sac around my lungs - that would also need to be drained.
I had two surgeries and spent more than a week inpatient in the hospital. The whole week was a complete blur. I went into the hospital a "relatively" healthy 29 year old who had just spent Labor Day weekend sitting poolside in a bikini. I left the hospital with a clear plastic tube hanging from the right side of my abdomen. A permanent drain that was inserted into the lining of my lungs. It will clear out any more fluid from my heart and lungs that the cancer deposits there. I suppose I should load up on one-piece suits and finally part with those midriff baring cut-off t-shirts I have held onto since college!
I also left the hospital with a new appreciation for how I do NOT want to spend my last few months of life. I want to fight this cancer with all that I have. I want to exhaust every possible clinical trial and FDA approved drug. As long as I can stay in fighting form, I will fight with all the might my impaired little heart can muster, but I do not want to end up saying goodbye to my family from a hospital room, in a strange itchy bed with lots of beeping machines, fluorescent lighting, and no view from the window to speak of, where the only company is coming from Dr. Phil on the small tv screen in the corner. No, I want to say goodbye in the comfort of my own home, the home that I have fought so long and so hard to establish with my Big Man. My home that is full of my smells and my love and my sweat and tears. There is really no place like home.
I am home now and am so happy and content. You all aren't going to be getting rid of me just yet. I am getting comfortable with this Pleurx drain. I can empty it myself now and it doesn't hurt as much as when they first inserted it. More importantly, now that I am actively draining this fluid, I no longer get breathless or cough uncontrollably. I am starting to cook and clean and play with the dog as before. Also, oddly enough, even though my heart and lungs almost gave out on me last week, my liver is functioning beautifully! I have been accepted into a clinical trial! We just started this week and I'm feeling really optimistic about the sounds of these drugs. More to come on that front as we learn more in the coming weeks, but just know that I am still fighting.
Next weekend is the 2012 Susan G. Komen Washington DC 3-Day. With the support of an incredible organization called Check Your Boobies, a non-profit organization I started working with last year that educates women about breast health in a frank, fun, and fear-free manner, I have reached my $2,300 fundraising goal! My mom, my younger brother, my uncle and cousins, my dear friends from Concord, MA, from Baltimore, MD, and from Florida, we are all walking together on team Million Dollar Babies, and come hell, high water, or even heart surgery, I will be walking with them! I leave this Wednesday evening for the DC walk. I get tired really easily as I am still recovering from the surgery, so I'll probably only walk a little bit each day, but I plan on crossing the starting line Friday and crossing the finish line every single afternoon, hand in hand with my family and friends. I'm still here, still fighting, still loving, laughing, and, above all, I am still living... fully.... with cancer.
As October begins, a new chapter in my cancer journey has also begun. Yet again I am humbled by this disease. Yet again, my journey has gotten even harder, and yet I've come through it and found myself back at home surrounded by love and comfort and I'm feeling good when I wake up in the morning. I don't know how or when this story will end, for a minute there in September I thought my story was over, but because of Pleaurx catheters and good doctors and clinical trials that all of you have made possible, I'm still hopeful. I still have a little more time. I'm not giving up.
I hope none of you give up either. If I can continue to cook dinner, work full time, and strive for a personal best on the Susan G. Komen 3-Day, surely each of you can do something with your day or with this month, or with the rest of this year that will positively impact the fight against cancer.
I can't wait to update you at the end of this month with good clinical trial news, because I know my heart is strong enough to fight the cancer that has taken up residence there.
Showing posts with label side effects. Show all posts
Showing posts with label side effects. Show all posts
Sunday, October 7, 2012
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!
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.
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!
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! |
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!
Friday, March 25, 2011
This is not your fault
I know I often put on a brave face here on this blog, but I'm going to be honest for a moment. This Xeloda and Tykerb drug combo is no joke, my friends. I am struggling these days with feeling old - much older than my 27 years. My Xeloda- Tykerb combo is doing some serious damage to my feet. There is nothing quite like literally hobbling around the house to make one feel like a 90 year-old.
Every girl will agree, a great pair of pumps can make even the most tired girl stand taller, look thinner, and feel beautiful. Sadly, I can't even get my aching, throbbing, red, peeling feet into a pair of flats let alone a pair of pumps! I've taken to watching E! news obsessively for hours. I stare enviously at the beautiful starlets in Christian Louboutins on the red carpet. You never see Angelina Jolie hobbling, or wincing in pain, or even stumbling in her heels. I want to throw my slippers at the tv when the latest hot young thing from Hollywood says "Oh yes, I'm wearing Dior and Jimmy Choo!" You know what? I'm wearing Target Fuzzy Socks, thank you very much.
I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.
The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".
For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?
From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.
This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.
I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.
The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"
Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.
I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."
I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.
Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.
My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.
That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"
I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.
We've come a long way, baby! That doesn't sound anything at all like what I'm doing!
My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.
There is no single moment in time that we can point to and say, "That right there, that did it."
So let that question go. Let the guilt go.
You did not cause your cancer.
The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.
Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.
By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.
When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"
It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.
The same is true with yoga. About four years ago I was in the best shape of my life. I discovered yoga and I loved it - still do. I was training for two 3-Day events, and when I wasn't walking I was at yoga class. I felt strong and I felt for sure I would beat this disease because I was "in the best shape of my life." And then one day, I got a phone call. They saw a new spot.
I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.
I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?
I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?
Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.
The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".
For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?
From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.
This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.
I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.
The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"
Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.
I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."
I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.
Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.
My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.
That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"
I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.
We've come a long way, baby! That doesn't sound anything at all like what I'm doing!
My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.
There is no single moment in time that we can point to and say, "That right there, that did it."
So let that question go. Let the guilt go.
You did not cause your cancer.
The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.
Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.
By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.
When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"
It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.
I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.
I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?
I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?
Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
Tuesday, February 1, 2011
Cancer-Meltdown
So the Spence household has had a crazy couple of weeks, but the last three or four days have felt really normal! Last we spoke, I was digesting some awful, awful news and facing some new chemo treatments. First off, thank you so much for the incredible outpouring of support everyone shared via email and comments. To hear so many of you who have had Xeloda experience, it was just what the Big Man and I needed to hear. Entering this new chapter was so much less scary. Thank you!
With all of my readers and supporters by my side, I wasn't afraid of a single thing... until....
Saturday January 15th, I was one week into my new Tykerb regimen. The Good Doctor started me on Tykerb alone because I have my Swap Surgery scheduled in February. My swap surgery, for my non-cancer friends, is my final reconstructive surgery. My plastic surgeon opens up my old mastectomy scars, removes my tissue expanders, and puts in my permanent implants. While it may seem crazy to have a surgery in the midst of new chemo, the expanders are uncomfortable and I have been asking to have them removed for about five months now. Nothing is standing in between me and Swap Surgery. Come hell or high water, these things are coming out February 9th! The doctors wanted to hold off on giving me the full dose of my treatment until about a week after surgery because we don't want to compromise the ol' immune system.
So the point is, on Saturday January 15th, I am not afraid or worried at all. I have my biggest pair of Big Girl Pants on and I am being a brave little girl. Life is good. For now, I only have to take 5 pills a day as opposed to 11. The 5 I have to take aren't even chemo, they are "targetted therapy." Thousands of women have handled this very same regimen with no problem. I have the support of my family, friends, and blogger buddies. This whole Stage IV cancer thing is a bummer, but really its a cake walk. I was getting ready to blog about just how easy this whole new cancer chapter was shaping up to be.
It was Saturday night and I was in the bathroom preparing for a nice dinner out with the hubby and my in-laws. Earlier that week was when I first noticed a little breakout on my face. Not attractive. I looked like a prime candidate for one of those Proactive commercials.
By Friday, the breakout had extended to my fake chest. Not attractive, but still not cause for alarm. I had maybe 15 small zits. Nothing that a heavy dose of foundation and a turtleneck couldn't remedy.
But that Saturday evening, January 15th, the rash started growing a rash of it's very own. I had hives on my back. I had hives on my bottom. I had hives on my scalp.
I itched. And when I itched my itch, the itch hurt. When the itch hurt I put on this soothing ointment my doctor prescribed. But to put on the ointment, I had to look in the mirror, and every time I looked in the mirror, I didn't see the allergic reaction for what it was. Instead, I saw Cancer staring me right in the face. I saw Cancer all over me like "stink on a skunk," as my grandmother would say.
My mind was going crazy focusing on these hives and on this cancer. For once I felt truly "stricken" with cancer.
I had it in my mind that the only thing that would make the itching stop was a nice, warm bath. I had visions of Mommy drawing an oatmeal bath when my baby brother and I both had chicken pox the same week. The vision of a homemade remedy empowered me. If I could just draw a bath, this whole rash situation would clear right up. Oatmeal would easily conquer a powerful chemo drug! I had my oatmeal in hand and was ready to take a long bath before my in-laws arrived. The Oatmeal would fix everything just in time for their arrival. I had two hours. Plenty of time.
I had visions of me opening the door wearing my best cashmere turtleneck sweater and a smile. I would hide the rash on my face with multiple layers of perfectly applied foundation. I would hand them a nice glass of Cabernet. I would have white wine and beer chilled. A tray of fine cheese would be waiting on the coffee table. Candles would be burning. Jazz music would be playing in the background. Our Christmas decorations were still up. "Please, come in! Yes, mother-in-law, see how well your son chose? I am taking care of him. Cancer? What do you mean cancer? Cancer hasn't got me down! No way, no how. I'm taking care of him ya see? He isn't a caregiver! Who needs a caregiver?" I was going to be like a duck when I opened the door for the in-laws, calm on top but paddling like the dickens underneath.
And then, I turned on the bath and found to my dismay....
We were out of hot water.
No big deal, perhaps a slightly chilly bath would be just fine for my hives.
No, an ice cold bath actually makes the hives worse. It turned on every nerve in my entire body.
That was when the crazy came out.
In an attempt to "help" in my time of need, the Big Man had apparently thrown in a load of laundry and had also loaded the dishwasher inadvertently draining our condo of hot water. In a normal state, I would thank the Big Man for helping me clean up before his parents' arrival. I should have just shrugged my shoulders at the inconvenience of not being able to prep appropriately for their arrival, but I was not in a normal state of mind. The hives were talking here.
In one of those blind rages that happen when you are frustrated and need to lash out, you can only lash out at the people you love the most because those are the people who won't ever leave you. I flew into a rage and cursed the Big Man and his helpfulness.
How dare he do the laundry!
How thoughtless of him to reload the dishwasher!
Doesn't he know that I run the show around here?
Doesn't he know I need a tub full of warm water!
Now it will be an hour before the water's warm again, and his parents are coming.
Your parents are coming!
What am I going to do?
IT ITCHES!
The wheels came off. I cried. I screamed. I threw some pillows around. I may have thrown other things, I can't remember.
My in-laws did come, God love them, in the middle of this whole fiasco. I was running around in my robe (the only piece of clothing that didn't itch) and screaming bloody murder about:
our stupid water heater needs to be replaced. Maybe tonight. You think a plumber can come tonight?
Why on earth did we buy this hole in the wall condo in the first place? Huh?
YOU, Big Man, YOU were the one who first came to the stupid Open House.
YOU were the one who found this condo and it's stupid broken water heater.
We never should have bought this place.
What a waste!
Nice job you house-buying, laundry and dish-cleaning, worthless excuse for a husband!
YOU!
Needless to say, I looked not at all like a duck, I was nowhere close to looking like Martha Stewart. Jazz was not playing in the background. Cheese was not out on the coffee table. Frankly, if I had greeted the in-laws at the door with a glass of wine, it would have made me look even worse! With a glass of wine in my hand, they could have confused my hive-induced rage with the ravings of a drunk!
I looked not at all like a duck. I looked not at all like Martha Stewart. I looked instead like one of those Real Housewives. The ones who scream nonsense obscenenities at anything that moves for no real clear reason.
It was an ugly day in the Spence household, and I'm not talking about the zits on my face.
It was a good thing the in-laws showed up when they did. Even though I wanted to crawl into the hardwood floor and die of embarrassment right then and there, their arrival calmed me down long enough to catch my breath and allowed the Big Family to actually talk through the situation in a somewhat civilized manner.
Big Man suggested I call the doctor to see if we couldn't stop taking the Tykerb and get some stronger treatment for the hives. I refused. No way in hell was I going to call my doctor! What a crazy idea! It was a Saturday afternoon and Dr. P is a married woman with three little girls at home. How could the Big Man not realize this? I monopolize her time enough during the week. No way was I interrupting what was surely a beautiful Saturday with the family. I was going to wait this out until 9am on Monday!
I was being such a typical woman, or maybe I was just being exactly like my mother? My mother never wants to bother anyone. It is one of her most admirable, but also most infuriating qualities. Why are we so reluctant to ask for help? Are we confusing this trait with actual strength? In this case, my "strength" was more like stupidity.
Big Man ended up paging the doctor. He ripped the phone out of my shaking, hive covered hands and paged her.
Turns out, Dr. P was at the hospital doing rounds anyway. She said it was a pleasure to hear from me because she was wondering how I had been doing on the new treatment. When she heard about the hives arrival, she was mad I hadn't called sooner because apparently they "get worse before they get better." I was in for a long week. She told me to stop the Tykerb immediately. She faxed a strong antibiotic order to my pharmacy. She told me not to take a bath, I would only make the hives worse. So much for my oatmeal bath that had started this whole rampage.
To say I had a tail between my hive covered legs is an understatement.
Big Man had never been prouder of himself! Big Man was right, I was wrong. You heard it here first. I'm saying it publicly. He can save this blog post and refer to it forty years from now if the Real Housewives-style crazy ever makes another appearance in his house.
Two weeks worth of antibiotics later, the antibiotics are working wonders. I can take the Tykerb now and I don't break out anymore. I am feeling much more confident about this treatment plan.
More importantly,my face is my own again. I am no longer ashamed to leave the house, although I'm still wearing cashmere turtlenecks (but only because it's winter in Boston.) I no longer think of cancer every time I catch a glimpse of my reflection.
The wheels are back on. The train that is Bridget Kicking Cancer Butt shall continue
Although, I will never live down the in-law embarrassment and I promise my in-laws a more civilized visit next time (and every time thereafter).
Last night was our typical Sunday dinner of roast chicken and "60 Minutes," Big Man poured himself a glass of wine and smiled at me as I was sitting down to the dinner table. He said, "You look pretty. You look like yourself. We're so lucky. I'm so lucky. I love you, Little"
Wow, what a difference a week makes!
And even bigger wow:
Wow, I'm a lucky woman!
Please, kind reader, tell me: Has anyone else had a Cancer-meltdown? I hope I'm not the only person who has allowed Cancer to make her a little ugly to the ones she loves, if only for a moment?
With all of my readers and supporters by my side, I wasn't afraid of a single thing... until....
Saturday January 15th, I was one week into my new Tykerb regimen. The Good Doctor started me on Tykerb alone because I have my Swap Surgery scheduled in February. My swap surgery, for my non-cancer friends, is my final reconstructive surgery. My plastic surgeon opens up my old mastectomy scars, removes my tissue expanders, and puts in my permanent implants. While it may seem crazy to have a surgery in the midst of new chemo, the expanders are uncomfortable and I have been asking to have them removed for about five months now. Nothing is standing in between me and Swap Surgery. Come hell or high water, these things are coming out February 9th! The doctors wanted to hold off on giving me the full dose of my treatment until about a week after surgery because we don't want to compromise the ol' immune system.
So the point is, on Saturday January 15th, I am not afraid or worried at all. I have my biggest pair of Big Girl Pants on and I am being a brave little girl. Life is good. For now, I only have to take 5 pills a day as opposed to 11. The 5 I have to take aren't even chemo, they are "targetted therapy." Thousands of women have handled this very same regimen with no problem. I have the support of my family, friends, and blogger buddies. This whole Stage IV cancer thing is a bummer, but really its a cake walk. I was getting ready to blog about just how easy this whole new cancer chapter was shaping up to be.
It was Saturday night and I was in the bathroom preparing for a nice dinner out with the hubby and my in-laws. Earlier that week was when I first noticed a little breakout on my face. Not attractive. I looked like a prime candidate for one of those Proactive commercials.
By Friday, the breakout had extended to my fake chest. Not attractive, but still not cause for alarm. I had maybe 15 small zits. Nothing that a heavy dose of foundation and a turtleneck couldn't remedy.
But that Saturday evening, January 15th, the rash started growing a rash of it's very own. I had hives on my back. I had hives on my bottom. I had hives on my scalp.
I itched. And when I itched my itch, the itch hurt. When the itch hurt I put on this soothing ointment my doctor prescribed. But to put on the ointment, I had to look in the mirror, and every time I looked in the mirror, I didn't see the allergic reaction for what it was. Instead, I saw Cancer staring me right in the face. I saw Cancer all over me like "stink on a skunk," as my grandmother would say.
My mind was going crazy focusing on these hives and on this cancer. For once I felt truly "stricken" with cancer.
I had it in my mind that the only thing that would make the itching stop was a nice, warm bath. I had visions of Mommy drawing an oatmeal bath when my baby brother and I both had chicken pox the same week. The vision of a homemade remedy empowered me. If I could just draw a bath, this whole rash situation would clear right up. Oatmeal would easily conquer a powerful chemo drug! I had my oatmeal in hand and was ready to take a long bath before my in-laws arrived. The Oatmeal would fix everything just in time for their arrival. I had two hours. Plenty of time.
I had visions of me opening the door wearing my best cashmere turtleneck sweater and a smile. I would hide the rash on my face with multiple layers of perfectly applied foundation. I would hand them a nice glass of Cabernet. I would have white wine and beer chilled. A tray of fine cheese would be waiting on the coffee table. Candles would be burning. Jazz music would be playing in the background. Our Christmas decorations were still up. "Please, come in! Yes, mother-in-law, see how well your son chose? I am taking care of him. Cancer? What do you mean cancer? Cancer hasn't got me down! No way, no how. I'm taking care of him ya see? He isn't a caregiver! Who needs a caregiver?" I was going to be like a duck when I opened the door for the in-laws, calm on top but paddling like the dickens underneath.
And then, I turned on the bath and found to my dismay....
We were out of hot water.
No big deal, perhaps a slightly chilly bath would be just fine for my hives.
No, an ice cold bath actually makes the hives worse. It turned on every nerve in my entire body.
That was when the crazy came out.
In an attempt to "help" in my time of need, the Big Man had apparently thrown in a load of laundry and had also loaded the dishwasher inadvertently draining our condo of hot water. In a normal state, I would thank the Big Man for helping me clean up before his parents' arrival. I should have just shrugged my shoulders at the inconvenience of not being able to prep appropriately for their arrival, but I was not in a normal state of mind. The hives were talking here.
In one of those blind rages that happen when you are frustrated and need to lash out, you can only lash out at the people you love the most because those are the people who won't ever leave you. I flew into a rage and cursed the Big Man and his helpfulness.
How dare he do the laundry!
How thoughtless of him to reload the dishwasher!
Doesn't he know that I run the show around here?
Doesn't he know I need a tub full of warm water!
Now it will be an hour before the water's warm again, and his parents are coming.
Your parents are coming!
What am I going to do?
IT ITCHES!
The wheels came off. I cried. I screamed. I threw some pillows around. I may have thrown other things, I can't remember.
My in-laws did come, God love them, in the middle of this whole fiasco. I was running around in my robe (the only piece of clothing that didn't itch) and screaming bloody murder about:
our stupid water heater needs to be replaced. Maybe tonight. You think a plumber can come tonight?
Why on earth did we buy this hole in the wall condo in the first place? Huh?
YOU, Big Man, YOU were the one who first came to the stupid Open House.
YOU were the one who found this condo and it's stupid broken water heater.
We never should have bought this place.
What a waste!
Nice job you house-buying, laundry and dish-cleaning, worthless excuse for a husband!
YOU!
 |
| It was a Kelly Bensimon in the Virgin Islands kind of a night! |
I looked not at all like a duck. I looked not at all like Martha Stewart. I looked instead like one of those Real Housewives. The ones who scream nonsense obscenenities at anything that moves for no real clear reason.
It was an ugly day in the Spence household, and I'm not talking about the zits on my face.
It was a good thing the in-laws showed up when they did. Even though I wanted to crawl into the hardwood floor and die of embarrassment right then and there, their arrival calmed me down long enough to catch my breath and allowed the Big Family to actually talk through the situation in a somewhat civilized manner.
Big Man suggested I call the doctor to see if we couldn't stop taking the Tykerb and get some stronger treatment for the hives. I refused. No way in hell was I going to call my doctor! What a crazy idea! It was a Saturday afternoon and Dr. P is a married woman with three little girls at home. How could the Big Man not realize this? I monopolize her time enough during the week. No way was I interrupting what was surely a beautiful Saturday with the family. I was going to wait this out until 9am on Monday!
I was being such a typical woman, or maybe I was just being exactly like my mother? My mother never wants to bother anyone. It is one of her most admirable, but also most infuriating qualities. Why are we so reluctant to ask for help? Are we confusing this trait with actual strength? In this case, my "strength" was more like stupidity.
Big Man ended up paging the doctor. He ripped the phone out of my shaking, hive covered hands and paged her.
Turns out, Dr. P was at the hospital doing rounds anyway. She said it was a pleasure to hear from me because she was wondering how I had been doing on the new treatment. When she heard about the hives arrival, she was mad I hadn't called sooner because apparently they "get worse before they get better." I was in for a long week. She told me to stop the Tykerb immediately. She faxed a strong antibiotic order to my pharmacy. She told me not to take a bath, I would only make the hives worse. So much for my oatmeal bath that had started this whole rampage.
To say I had a tail between my hive covered legs is an understatement.
Big Man had never been prouder of himself! Big Man was right, I was wrong. You heard it here first. I'm saying it publicly. He can save this blog post and refer to it forty years from now if the Real Housewives-style crazy ever makes another appearance in his house.
Two weeks worth of antibiotics later, the antibiotics are working wonders. I can take the Tykerb now and I don't break out anymore. I am feeling much more confident about this treatment plan.
More importantly,my face is my own again. I am no longer ashamed to leave the house, although I'm still wearing cashmere turtlenecks (but only because it's winter in Boston.) I no longer think of cancer every time I catch a glimpse of my reflection.
The wheels are back on. The train that is Bridget Kicking Cancer Butt shall continue
Although, I will never live down the in-law embarrassment and I promise my in-laws a more civilized visit next time (and every time thereafter).
Last night was our typical Sunday dinner of roast chicken and "60 Minutes," Big Man poured himself a glass of wine and smiled at me as I was sitting down to the dinner table. He said, "You look pretty. You look like yourself. We're so lucky. I'm so lucky. I love you, Little"
Wow, what a difference a week makes!
And even bigger wow:
Wow, I'm a lucky woman!
Please, kind reader, tell me: Has anyone else had a Cancer-meltdown? I hope I'm not the only person who has allowed Cancer to make her a little ugly to the ones she loves, if only for a moment?
Tuesday, May 25, 2010
You May Have Won this Battle....
I did not post this past weekend because the past few days have been really difficult for me. The day of the clinical trial was long and I came home and collapsed. The Big Man and I were at Dana Farber from 7:45 am until 7:00pm. We got breaks for lunch and a break from 4:30 to 6 so we made some time for a little blue plate special. We have been married for 8 months, but it feels like 80 years. Big Man gave me his arm as he helped me out of the car. We went to a place we knew well so we didn't even look at the menu. I may have ordered for him, I can't remember! We had juice and water instead of cocktails. The only thing missing was a perm and a cane.
Then we came home and I slept. I'm still sleeping, as I type this I am sleeping. It turns out "flu-like" symptoms can be code for really really killer. I have had excruciating back pain since Thursday. The oral chemo pills are causing the back pain, so unfortunately it is getting worse each passing day. I can handle one or two days of side effects, but to wake up each day and have the side effect get worse, with no end in sight, that is mentally and physically debilitating. To top it all off, I went in yesterday for blood work and was told my platelet count had fallen. I don't know what that means but the nurses asked if I've had nose bleeds. Now that is the one problem I don't have...and most certainly don't need! So today I did something I have never done before, I called my doctor and cried. I said, after only five days, enough!
I don't know what this means. I go in to see the doctor tomorrow. Perhaps I can stay on the trial and we can tailor the dosage? Perhaps I can stay on the trial and just get the one drug. Who knows? All I know is, I am emotionally and physically exhausted. My arms are weak. I am shaking. Just getting out of bed has been difficult. I can't sit up straight for long periods of time.
You know when people ask not to be kept alive on machines? This is what they mean. I don't want a life like this. Life like this isn't worth living. So, we're going to try something else. Cancer may have won this battle, it hasn't won the war!
So, I spent the past few days catching up on Grey's Anatomy's Season Finale. Ever since my diagnosis five years ago, I have become a huge fan of hospital dramas. I've never watched General Hospital, but it isn't below me. Grey's, ER, even Private Practice. I realize now more than ever that these are my people. This is my show. And it makes me feel good to watch people like me still manage to have love affairs and a spicy life. The hospital is my world. I'm a walking Grey's Anatomy, except I am not a surgeon, but that is a minor detail. And wouldn't you know that, yet again, Grey's manages to put it all into perspective for me. Not only was the season finale amazing television, but it made me feel better to boot!
My day could be worse. Even though I can't get out of bed without pain. Even though my husband cries watching me hurt. Even though I'm throwing in the towel after only five days. Things could be worse. There could be a crazed gunman out for revenge in my hospital. And there's not. So today is a good day, but tomorrow, when I am off these drugs, will be better!
Then we came home and I slept. I'm still sleeping, as I type this I am sleeping. It turns out "flu-like" symptoms can be code for really really killer. I have had excruciating back pain since Thursday. The oral chemo pills are causing the back pain, so unfortunately it is getting worse each passing day. I can handle one or two days of side effects, but to wake up each day and have the side effect get worse, with no end in sight, that is mentally and physically debilitating. To top it all off, I went in yesterday for blood work and was told my platelet count had fallen. I don't know what that means but the nurses asked if I've had nose bleeds. Now that is the one problem I don't have...and most certainly don't need! So today I did something I have never done before, I called my doctor and cried. I said, after only five days, enough!
I don't know what this means. I go in to see the doctor tomorrow. Perhaps I can stay on the trial and we can tailor the dosage? Perhaps I can stay on the trial and just get the one drug. Who knows? All I know is, I am emotionally and physically exhausted. My arms are weak. I am shaking. Just getting out of bed has been difficult. I can't sit up straight for long periods of time.
You know when people ask not to be kept alive on machines? This is what they mean. I don't want a life like this. Life like this isn't worth living. So, we're going to try something else. Cancer may have won this battle, it hasn't won the war!
So, I spent the past few days catching up on Grey's Anatomy's Season Finale. Ever since my diagnosis five years ago, I have become a huge fan of hospital dramas. I've never watched General Hospital, but it isn't below me. Grey's, ER, even Private Practice. I realize now more than ever that these are my people. This is my show. And it makes me feel good to watch people like me still manage to have love affairs and a spicy life. The hospital is my world. I'm a walking Grey's Anatomy, except I am not a surgeon, but that is a minor detail. And wouldn't you know that, yet again, Grey's manages to put it all into perspective for me. Not only was the season finale amazing television, but it made me feel better to boot!
My day could be worse. Even though I can't get out of bed without pain. Even though my husband cries watching me hurt. Even though I'm throwing in the towel after only five days. Things could be worse. There could be a crazed gunman out for revenge in my hospital. And there's not. So today is a good day, but tomorrow, when I am off these drugs, will be better!
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