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 clinical trial. Show all posts
Showing posts with label clinical trial. Show all posts
Sunday, October 7, 2012
Tuesday, August 28, 2012
Moving Forward Past Heartbreak
This summer has officially been the hardest season of my cancer journey. After seven years battling, I thought I had seen it all. I thought I could handle anything thrown at me in that doctor's office with grace and power. I thought I had already dealt with and learned how to overcome disappointment and setbacks. I was wrong.
Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.
My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.
On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!
The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before. It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.
A month went by and no new trial opened up. That was heartbreak number 1.
Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.
Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!
Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.
Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.
I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.
She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.
After all this waiting, all this hoping, all this sitting by the phone.
I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.
I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.
I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.
I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier. I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger. I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.
But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.
I am starting to call friends. I am keeping engagements. I am trying.
Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%. It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.
I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.
But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.
I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.
So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!
I am going to start living life again.
Thanks for being patient with me as I struggle with this. I care about all of you very much.
Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.
My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.
On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!
The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before. It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.
A month went by and no new trial opened up. That was heartbreak number 1.
Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.
Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!
Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.
Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.
I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.
She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.
After all this waiting, all this hoping, all this sitting by the phone.
I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.
I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.
I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.
I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier. I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger. I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.
But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.
I am starting to call friends. I am keeping engagements. I am trying.
Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%. It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.
I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.
But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.
I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.
So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!
I am going to start living life again.
Thanks for being patient with me as I struggle with this. I care about all of you very much.
Friday, October 7, 2011
The Importance of October
October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
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!
Monday, May 31, 2010
Happy Memorial Day!
Happy Memorial Day weekend, everyone! I hope you are all entering this short week well rested and, ideally, with a nice tan. It turns out, the Big Man and I actually had a great weekend.
Last Wednesday, after I cried "uncle" to my oncologist, I went in for a physical and some blood tests. Turns out, the back pain wasn't my only problem. My platelets, which help with clotting if you get a bruise or cut, had fallen even further and were in dangerously low territory. Low platelet count is considered anything under 100,000. If you are 100,000 and above, you are OK for surgery. Below 100,000, you need to be careful because no one will operate on you if something goes wrong!
My platelet count on Wednesday was 15,000. Not good.
15,000 platelets + horrible back pain = my doctors were eager to get me off of the pill, GDC-0941.
My docs said they had never seen these sort of side effects so quickly in other patients. Another patient had complained of back pain, and others had had trouble with blood counts, but I was the first to complain of both at once and so severely. So I was ordered to stop taking the pills.
Apparently, doctors are good people and like to follow, not only side effects, but also a patient's recovery from those side effects in these Phase 1 trials. This means, I am still allowed to be in the clinical trial! YAY! I am going off of the pills, but I am still in the trial. I will keep visiting the doctors regularly and I will still be closely monitored, but my only drug regimen is a chemotherapy infusion through IV every 3 weeks. My next TDM1 infusion is scheduled for June 9th and Mamma has already made plane arrangements. The Family is back and ready to fight!
This past go-round, I did notice that I have a couple of sick days after getting the TDM1 infusion. I feel flu-ish, sleepy, and run a fever, but I can handle a couple of low key days easily; I've been doing that for years. Bring it on!
So, armed with that good news, the Big Man and I went to a fabulous wedding this weekend. We gave lots of hugs and kisses and sage advice to the beautiful couple. We have been married for eight months and already know everything! I had to be a bit of a hypochondriac because of my low platelet counts, so the Big Man drove everywhere (to his utter delight), I was limited to only one glass of wine all weekend, and I was not allowed to cook all week for fear of a knife accident when slicing potatoes. We ordered in, snuggled up, and enjoyed our friends and good weather. This week, I am looking forward to kicking off the summer in good spirits. My back pain is gone, my energy is back, and I am so happy.
I will leave you all with a few thoughts on Memorial Day.
Thank you, thank you, thank you to all of the men and women in uniform and to the veterans among you. I was a freshman in college on September 11th. Hamid Karzai, the President of Afghanistan, spoke at my college graduation four years later on May 25, 2005. President Karzai spoke to my classmates and me just two weeks before I was diagnosed with breast cancer. Perhaps because of that juxtaposition of our war on terror and my illness, I think often about the sacrifices of our brave men and women in the US Army. I extend to you all today a heartfelt, personal thank you. Because of the work you do at home and abroad, I am safe and able to visit my doctor for treatment. Our country is at war, but so far, we have taken the war overseas. If the war were here on US soil, I would not be able to get the five star treatment and attention that I so desperately needed this week. I complained of pain and was brought in to be seen the very next day. That prompt attention meant my doctors found out immediately about my low platelet count. For 48 hours last week, I was being monitored constantly in case I should need a blood transfusion.
My life depends on the work of our military. My life depends on the amazing United States health care system, and my life would be in turmoil if we were not at peace here at home. Not a day goes by when I don't appreciate that. Thank you!
Last Wednesday, after I cried "uncle" to my oncologist, I went in for a physical and some blood tests. Turns out, the back pain wasn't my only problem. My platelets, which help with clotting if you get a bruise or cut, had fallen even further and were in dangerously low territory. Low platelet count is considered anything under 100,000. If you are 100,000 and above, you are OK for surgery. Below 100,000, you need to be careful because no one will operate on you if something goes wrong!
My platelet count on Wednesday was 15,000. Not good.
15,000 platelets + horrible back pain = my doctors were eager to get me off of the pill, GDC-0941.
My docs said they had never seen these sort of side effects so quickly in other patients. Another patient had complained of back pain, and others had had trouble with blood counts, but I was the first to complain of both at once and so severely. So I was ordered to stop taking the pills.
This past go-round, I did notice that I have a couple of sick days after getting the TDM1 infusion. I feel flu-ish, sleepy, and run a fever, but I can handle a couple of low key days easily; I've been doing that for years. Bring it on!
So, armed with that good news, the Big Man and I went to a fabulous wedding this weekend. We gave lots of hugs and kisses and sage advice to the beautiful couple. We have been married for eight months and already know everything! I had to be a bit of a hypochondriac because of my low platelet counts, so the Big Man drove everywhere (to his utter delight), I was limited to only one glass of wine all weekend, and I was not allowed to cook all week for fear of a knife accident when slicing potatoes. We ordered in, snuggled up, and enjoyed our friends and good weather. This week, I am looking forward to kicking off the summer in good spirits. My back pain is gone, my energy is back, and I am so happy.
I will leave you all with a few thoughts on Memorial Day.
My life depends on the work of our military. My life depends on the amazing United States health care system, and my life would be in turmoil if we were not at peace here at home. Not a day goes by when I don't appreciate that. Thank you!
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!
Wednesday, May 19, 2010
Back in the Saddle
Tomorrow I start my clinical trial. The Big Man is ready to go with me. We report at 8 o'clock and should finish around 5pm. I got my schedule via email earlier this week. The nurses actually fit in 20 minute bathroom breaks. The schedule reads "you may eat or go get fresh air now" in between scheduled tests, blood draws and drug infusions. Awesome! Then I get to go right on back on Friday morning for another full day.
Hopefully, everything will go smoothly and the side effects won't be too terrible.
I am a bit at a loss for words today. I just have my eyes on the prize. Since I am at a loss for words, which is quite the rare occurrence, I wanted to take this opportunity to lighten things up a bit here. I've noticed this blog is getting much too serious for my taste.
This is me 6 weeks after a mastectomy.
Now, I am not endorsing foolish behavior. That was foolish. And please don't tell my doctors. But no one got hurt and I felt damn good! Yes ma'am. I really truly know how to fall off a horse, or bull in this case, and just get right back up and try again. I did pretty darn well, thank you very much!
So tomorrow, I'm going to put on something cute, although probably not a skin tight dress, and I'm going to get right back up on the bull that is chemo and hang on for a little bit longer. Cancer has knocked me to the ground a few times, but it most certainly hasn't kept me from standing right back up and dusting myself off before trying again.
Have any of you ever ridden a bull? If not, I think everyone should try it at least once, but I would recommend wearing jeans!
Hopefully, everything will go smoothly and the side effects won't be too terrible.
I am a bit at a loss for words today. I just have my eyes on the prize. Since I am at a loss for words, which is quite the rare occurrence, I wanted to take this opportunity to lighten things up a bit here. I've noticed this blog is getting much too serious for my taste.
This is me 6 weeks after a mastectomy.
Now, I am not endorsing foolish behavior. That was foolish. And please don't tell my doctors. But no one got hurt and I felt damn good! Yes ma'am. I really truly know how to fall off a horse, or bull in this case, and just get right back up and try again. I did pretty darn well, thank you very much!
So tomorrow, I'm going to put on something cute, although probably not a skin tight dress, and I'm going to get right back up on the bull that is chemo and hang on for a little bit longer. Cancer has knocked me to the ground a few times, but it most certainly hasn't kept me from standing right back up and dusting myself off before trying again.
Have any of you ever ridden a bull? If not, I think everyone should try it at least once, but I would recommend wearing jeans!
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