Tuesday, November 25, 2008
I'm writing this from the hospital ICU. We admitted Tracy a few days ago and they are doing everything they can for her. She has some wonderful doctors and tons of family and friends here with her. She's the strongest person I know and she's still fighting for her life. Please keep her in your prayers.
Thank you all,
Wednesday, September 3, 2008
- non-evident in my bones and liver,
- regressing in my brain -- with no new involvement,
- regressing around my collar bone where I had CyberKnife,
- previously identified met in left lung is stable,
- and effusions in my lungs are regressing --
I ran up to My Oncologist yesterday, he sent me to a specialist in tomotherapy today, and I start a 15-day course of treatment to some highly irritating nodes tomorrow. Unbelievable! I am thrilled (but still terribly winded) and so blessed to have this physician on my side. He knows me so well and the depth of my commitment to this fight. So while My Love and I drove home from the tomotherapy center, all I could do is smile and think of this (which you can jump 45 seconds into to finally get to the meat):
Thursday, August 21, 2008
I had an 8:30 a.m. appointment. I didn't get my treatment until 11:30 a.m. Figure that one out. I didn't get into work and I am going to be contacting the director of the cancer center about this. Ridiculous. Also, this chemo really doesn't like me as much as past chemos have. I definitely feel icky on Ixempra. Oh well, I'll work on sucking it up. Oh, there is good news: 192 platelets!
All went according to plan. I was in at 8:00 a.m. and was done by 2:00 p.m. Now, I wait. I hate waiting.
Monday, August 18, 2008
Sunday, August 17, 2008
Thursday, August 14, 2008
Guess I’ll go straight for the clinical. Can’t get too mired in straight forward facts, right? Monday’s CBC said I have 169 platelets. That, as we all better know by now, is awesome. I am scheduled for chemo next Tuesday. Please note that this makes three scheduled chemos in a row. What, a routine falling into place? Hush yourself. I don’t need you jinxing me.
Mutual Detestation Society
Based on my platelet count, New Doctor has dropped my prednisone by 10 mg. Praise be! She also said that if my counts are still looking good on Tuesday, she’ll drop me another 10 mg. You cannot imagine the sheer relief and pleasure this possibility brings me. I’m tired of feeling like a perpetually humming tuning fork. It’s exhausting. And yet, I cannot sleep. I hate my big, fat, prednisone face and belly. Then there are the cramps in my fingers and jaw. Now, if you’re tired of my relentless jabbering and writing, these little side effects may not sound like such bad things. But, they are painful and they slow my work. You know, my real work. Typing gets challenging.
The physical fatigue is maddening, too. I climb stairs like I’m trying to summit Everest with a 175 pound pack on my back. My quads burn and I have to put two feet on each step before I take on the next. I really hate physical manifestations of what I’m dealing with. F-ing annoying. I’m strong and independent. Huffing and puffing my way around does NOT jive with that view of me.
A Rising Star in the Category of Comorbidities
The radiation damage to my shoulder, which for years existed as deeply burned, reddened and hardened tissue, has now become a gaping, oozing, wound. It requires twice daily dressing changes, antibiotic ointment and over the past two weeks has continued to widen. There are (no kidding) two holes on the top of my right shoulder. I now have a wound care specialist. An x-ray shows that the bone in the area is intact and there is no infection in my bone. That’s the good news. The bad news is that I have a lot of calcifications that are working their way to the surface and destroying any semi-viable tissue in their paths. Hence, the gaping wounds. I'm fighting a strong urge to post a photo of the wounds because it's just that freaky looking.
I saw the wound care specialist yesterday, and he debrided the wounds (again). He said the wounds will probably get bigger. Lovely. Right now, the plan is to get the area cleaned up and as healthy as possible before we consider our next step – how to close the wound up, if that is even possible. I see him again in a month.
But here is the best part: since this wound has opened up, I have developed lymphedema. My arm is swollen with lymphatic fluid that cannot drain properly because I had lymph nodes removed during my mastectomy and the oozy stuff in my wound is over-taxing my body’s sewer system. New Doctor is working on getting me a lymphedema pump and sleeve. I am going with notion that this is a transient thing that will subside once we get my shoulder under control. I need to go with this notion otherwise I’m going to get royally ticked off at the possibility of having to wear a sleeve for the rest of my life.
To be done this month. I need to schedule.
Donations for Andrea
Assertive Cancer Patient says she has received over $390 in donations for Andrea. That should ease her mind and grocery bill, if only for a little bit. I’ll bet it made her smile at the generosity of those unknown to us but whom we touch. Thank you so much if you contributed.
Friday, August 8, 2008
Happiness shining in their eyes; both eager to start a life together.
Best friends, lovers and true, comfortable companions.
In each the other found a soul who shared the same goals and dreams for their futures.
They smiled as they took their vow to be true to each other in sickness and in health, and promised to love each other all the days of their lives. It wasn’t all that long until they were challenged to do so.
Resilience. Devotion. Trust. Boundless capacities for forgiveness. Fathomless, near indefinable love.
My Love. My Everything.
Wednesday, August 6, 2008
BUT, I also acknowledged that I am among the lucky ones who can work, and have benefits. If it comes to it, I can sell my house and move into a condo to continue paying for co-pays, prescriptions and, oh, more co-pays and prescriptions. That's life, right? I know many others fare far worse monetarily than I because of their cancer. THIS is about one of them.
Assertive Cancer Patient posted the other day about Andrea, a woman she recently met who is facing Stage IV breast cancer as a single mother of a three-year-old. She is on disability and struggling very badly to make ends meet. She posts about it here and has set up a fundraiser to help Andrea out. She is hoping to collect enough money for Andrea to buy enough groceries for the next month. If you can, please consider making a donation.
Teri, The Cheeky Librarian, has also entered the scene to get some assistance behind Andrea. She shares her opinions on the topic the costs of cancer to the individual patient and helpfully includes links to possible sources of funds, for those of you who need financial assistance.
Tuesday, August 5, 2008
Laura has just launched a Web site specifically for people living with metastatic disease. It provides resources, information and a call to action to drive more awareness of living with advanced cancer. It is also a work in progress, so I'm betting you are going to see more on this site soon. If you are someone living with advanced cancer or happen to love one of them, please check out: http://www.livingwithstageiv.com/
Monday, August 4, 2008
We all know about Facebook, the social networking site that brings people together. Well, long story short, Tracy Pleva-Hill is one of my Facebook friends. When I saw that picture of Tracy standing next to her motorcycle, I was so taken by her spirit that I reached out to her. I've rarely done that with my Facebook friends or most people for that matter. And I must say my instincts were right.
I later found out that Tracy, who lives in Flemington, New Jersey with her husband and son, is one of the bravest, most spirited women on the planet. At the age of 32, Tracy was diagnosed with Stage IIb, triple negative breast cancer - one year after her son's birth. Since then, for eight years now, she has been fighting for her life and winning the battle.
Tracy is a true survivor, mother, wife, PR professional at the MCS agency, and heroine of her own courageous, passionate life story. Her attitude about life is incredible. Normally, I do a Q&A with my interview subjects, but I received an e-mail from Tracy that so touched and moved me, that I am including it in its entirety below. Tracy is an inspirational gift to us all - and I urge you to support her and to continue following her story at her blog: http://fstage4.blogspot.com/
The Damn Disease
I was diagnosed with Stage IIb, triple negative breast cancer in 2000 at the age of 32. For a full account of this experience, you can go Here. Ten months after completing my treatment (mastectomy, reconstruction and 8 rounds of chemo) I discovered enlarged lymph nodes around my collar bone. My disease had progressed to Stage IV. Since then, I have been on some form of chemotherapy to try and manage my disease. In that time, I've experienced other progressions and have had to change treatments several times. I have had mets to my brain three times (most recently identified in April and obliterated in May via Gamma Knife, a radiation therapy), and this crap loves my lymph nodes. I have had CyberKnife therapy, another form of radiation, to pulmonary nodes in my chest, and just this week, nodes around my opposite collar bone. I also apparently have a lung nodule. This is a new and scary involvement for me.
In addition to dealing with my cancer, in late 2006 I developed an ITP -- idiopathic thombocytic pupura. Which essentially means, your platelets are disappearing and we don't know why. I've developed some sort of antibody against my own platelets. My bone marrow makes them, the antibody eats them. If your platelets are too low, you cannot get chemotherapy. Chemotherapy is all I have. So, this has been a very distressing ride for me as I have spent the better part of the past year NOT getting treated for my disease.Things are looking up right now. Thanks to steroids (UGH) and a new ITP drug, my platelets have rebounded and I started chemo again last week. I was VERY excited! My doctors and I are working very hard to find a balance so we can continue to treat my disease as appropriate while not killing my platelets. It's been a challenge.
My Family and Friends
My husband and son are my life. I live for them. I want them to have as normal an existence as possible. Hell, I want to have as normal an existence as possible. My son has never known me as anyone but a person with cancer. He's sat on my lap as a toddler while I've received infusions and now that he is older, he is friendly with my doctors and nurses. Cancer and marriage? That's a hard one. I am blessed in that my husband is my best friend and our love is solid. But this disease has ravaged our relationship in many ways and I feel very, very cheated by it. After all this time... I still feel ripped off. However, there is love, support and happiness in our home. It's the best gift I have.I am also lucky to have fantastic parents and sisters. There has never been any question about support from my family. It's there. It always has been. My friends, as well, are terrific. I have never gone through the negative experience of having someone drop by the wayside because of my disease. Blessed, blessed, blessed.
I have been a public relations professional for nearly 20 years. While always an account person, the complications of my disease over the past years have made it very difficult for me to be a reliable contact for clients. My agency, MCS, has been enormously supportive and accommodating of me throughout all of it. Although I can no longer manage account teams my skills have been transferred to an HR roll, which is something that our agency needed but was not fully addressed. In my new role, I have more flexibility with my time and can still help the agency and the fabulous people who work there achieve their best.
MCS is a privately held company that focuses solely on health care. Considering how much of my life is tied up in health care, you can imagine my happiness at being able to work at a shop like this. And, yes, I work full time. In fact, I have never not worked full time during this experience except for when I had my mastectomy, and this past Dec - Mar when I took disability to focus on getting my ITP under control.
Early in my cancer experience, I was heavily involved with the Young Survival Coalition http://www.youngsurvival.org. In fact, I appear in a few of their support views: Fighting for Our Future and The Beautiful 8 (about living with metastatic disease). After my metastatic dx, I found I needed to pull back from my volunteer and advocacy work. But, I am still very much in touch with them and the founders of this fantastic organization. They paved the way for building awareness about young women and breast cancer as well as living with metastatic disease.
Last year, I participated in Amazon Heart Thunder UK. It was a 10-day motorcycle ride through Scotland and England with 20 other women breast cancer survivors. It was truly a life changing experience for me and I would go on for pages about it if you give me a chance. You can find Amazon Heart here: http://www.amazonheart.org.
What Do I Like?
Being with my family. Working. Being independent. Motorcycles (although I just sold mine this year and miss it TERRIBLY. But, since I am having problems with my platelets, it's probably not a good idea for me to be ripping around on a sport bike with no ability to clot), reading when I can. Being with friends. The ocean. The simple pleasures, with some special luxuries thrown in because I deserve them!
Why Do I feel that I am a Spirited Woman?
I am a Spirited Woman because I draw upon the power that I have within me to live the best life that I possibly can with metastatic breast cancer. I acknowledge the challenge I face and the difficulties that breast cancer places in my life. But I work very hard not to allow it to consume me. And for each attack it launches upon me, I retaliate. I reassess my strategy and develop a new plan. I make cancer fight for every little thing it takes from me. I do not give cancer any credit for bringing positive things to my life. I create the good in my life. Any strength or courage that people might see in me is mine.
THANK YOU TRACY FOR GIFTING US ALL WITH YOUR LIFE
Tracy welcomes hearing from you. She invites you to follow her continuing story at http://fstage4.blogspot.com/.
Friday, August 1, 2008
Wednesday, July 30, 2008
Know what could help me out? If you all felt welcome to comment and ask questions. Not just of me, but each other, too. I'd like this blog to be a comfortable and safe place to ask the questions about living with metastatic cancer that seem to be unaskable, and discuss the issues that seem taboo. It doesn't matter if you are a person living with this crap, a care-giver, or a family or friend who just wants to help someone they love deal with this crap. Rule #1: Only judgement-free, respectful commentary allowed.
A case in point: I've been contacted by a couple women who are not metastatic but live in fear of recurrence. When they have expressed those fears to others, they are told not to worry; that it's gone. But really, it's never gone. It will be with them for the rest of their lives even if they are blessed enough not to face down another diagnosis. I offered myself to them, and they took me up on my invitation. I am carrying on private conversations with them because they feel isolated and frustrated by the reactions they receive from those that are closest to them when they need to explore their feelings and issues about breast cancer and the possibility of advancing disease.
I believe that such dismissive comments come from a place of personal fear. People want to deny the possibility that not only could it could happen again, it could also happen to them. But, those who has fought the battle are quite cognizant of the potential realities. Some will try to repress those emotions and thoughts and go forward to reclaim their lives as best they can. But others, those who are more direct in their approach to life, they have valid concerns that deserve respect and attention. Those who have not fought the disease cannot truly appreciate this direct approach and the need for more knowledge or, at the very least, reassurance that the cancer survivor is indeed reacting normally to a traumatic experience. Dismissal, or avoidance of this survivors emotions to protect your own is not fair. Furthermore, encouragement gleaned from the experiences of others can help arm cancer survivors, preparing them for what could lay ahead. It presents an opportunity to plan for those damned "what ifs." And, that, in itself, can provide peace of mind.
What do you think?
So, after all that soapbox crap, I would like to say, "Everybody, meet everybody." You are my family, you are old friends, and you are new friends. You are people with breast cancer who have questions, fears and daunting thoughts that seem to be held only by you. You are people who love people with breast cancer and want to be the best support person you can be. You are my mother, who drives me up the freaking wall but I could never do without.
Tell me if there is something you want to know more about, or if something needs to be expounded upon. I am clearly not a doctor and cannot provide medical advice. I can only share what I have experienced and the things I have learned as I've scrambled, crawled and fought my way through cancerland. For what it's worth, I hope it's helpful. Maybe, together, we can make this blog even more helpful.
Sunday, July 27, 2008
Monday: 1 p.m. appointment with oncologist -- routine
6 p.m. appointment for WinRho at hospital
Tuesday & Thursday: 6:15 p.m. PT for the shoulder
Friday: 6 p.m. Happy Hour at my house for my friends at work
Actual course of events:
Routine appointment with New Oncologist goes well. Following review of a recent CBC, we decide I should get an infusion of WinRho before my next chemo. Prior to showing up at her office, I had started taking some Neupogen injections because my white count was down to 1-point-next-to-nothing. I was now up to around 8. So, reconfirming here: WinRho, 6 p.m., hospital oncology wing. Then, I get to head home where I know My Love is making us a dinner of scallops, clams and steak.
I show up at the oncology wing as scheduled only to be told that my appointment had been cancelled and I am to come back the next day. I told them that my appointment had not been cancelled, showed them that there was no call in my cell phone archive and asked that they check again. They tell me my chart has been returned to the cancer center. I suggest a call to New Doctor. I am offered a seat. Thank you.
Twenty minutes later, I am in a room and waiting for a delivery of WinRho. So much for sitting down to a nice dinner with my boys when I got back from my 10-minute infusion. I call My Love and tell him not to hold dinner for me. About 20 minutes later, the WinRho arrives. A nurse administers the med then observes me for adverse reactions for 20 minutes and then sets me free to go home. Yippee!
I get home. My Love is ready to jump on the grill and prepare me my dinner. I go upstairs and change into more comfy attire. I come down the stairs and as I hit the last three steps, I am overcome with a sudden attack of shivers. I am freezing. I feel as if I have suddenly spiked a tremendous fever and start digging in my bag for my ever-handy thermometer. I pop it into my mouth, teeth chattering away so hard I'm afraid that I am about to bite right through it. I am expecting to see 104 degrees when it finally beeps that it has finished its assessment. It reads: 97.8.
By this time, I am on the couch with three blankets on me. I am hyperventilating. And I don't know why. I try to relax and give my body a chance to recover. My Love is unaware of my situation out at the grill. The kid is trying to finish his dinner while I am practically in convulsions and trying to slow my breathing.
When My Love comes in the house with my dinner, I tell him I can't eat it right now. He's confused and asks, "What, you're not hungry now?" I scream, "I don't feel well and I need five minutes!" This, seriously, is a lie. I don't know what I need. I'm freezing, and breathing raggedly and trying not to freak out The Kid. Good thing I screamed.
My Love is standing there. He asks what he can do. Should he call the doctor?
Yes. Call the doctor. This seems to be one of those times when it's ok to call the doctor after hours. So he does. Somehow, The Kid has been dismissed from the room and is apparently upstairs in his room. I don't know this for sure because I am buried on the couch, but The Kid and his whereabouts are what I am most concerned with right now.
My Love gets New Oncologist on the phone and describes our situation. New Oncologist asks to speak with me and after a few minutes of further discussion, she says she suspects that I am reacting to the WinRho and that I should go to the ER. I (don't be shocked, here) refuse. I ask her what on earth they can possibly offer me at the ER to get through this. She says Benadryl. I say, I have Benadryl in my house. How much do I take? She also advises Tylenol and an antibiotic. She asks if I have any antibiotics in the house. Please.
I send My Love to the cabinet with the phone and have him start reading off medicine labels to New Oncologist. They find an appropriate antibiotic which I take with Benadryl and Tylenol. I promise New Oncologist that if things do not improve, I will, indeed, go to the ER.
Within minutes, the shivering begins to lose intensity. I sit up and ask My Love where The Kid is. He tells me that he is upstairs. But, when I look toward the kitchen, I see him standing at the entrance to the dining room looking absolutely terrified.
I call him to me and he runs, tears pouring down his face into my arms. He is hysterical. I am still shivering uncontrollably and my breathing is rough. I hold him and tell him not to be scared. That I am having an allergic reaction to some medicine and just like when you get a big welt from a bee sting, my body is reacting. I tell him that I have taken medicine to fix the reaction and that I am already getting better. I am trying to ease his fears as best I can. And I am feeling awful that I have allowed this to happen in front of him. I tell him to sit on Daddy's lap and he does.
The three of us sit on the couch as I recover from my reaction. Now I am trying to figure out why I had the reaction. And I figure it out. My one and only previous infusion of WinRho occurred when I received two units of platelets and was already pre-medicated with Benadryl, Tylenol and whatever other premeds are typically prescribed. This infusion was straight up. Next time... premeds. In the meantime, once I have settled down enough, I enjoy a late, but lovingly prepared dinner of scallops, clams and steak with my boys watching over me.
The next morning, I feel just fine and go off to work. My throat's a bit sore, but I attribute that to the hyperventilating I experienced the night before. As I go about my day, I realize that I should give myself a break and cancel my PT. This irks me, but I do it anyway. Another change of plans.
Wednesday my throat seems fine. Some yogurt and Kashi for breakfast and no pain or trouble swallowing. Then comes lunch. I pick up a sandwich: French roll with pesto, fresh mozzarella, and chicken. Yum! I eat about half my sandwich, realizing with each bite that something is not happy in my throat. Swallowing is difficult and I feel as though a hunk of bread has lodged itself in my chest. I can't clear it. Swallowing hurts a lot. So I call it lunch. In my office, I sit at my desk and try to will the pain away. I'm afraid to swallow and my mouth keeps watering. And even though I have mentioned pain as I write this, the concept hasn't entered my mind yet. Until I feel like I'm going to vomit. There's my flag! I need to be at the point of hurling to realize that I am, in fact, in pain.
So, off to the ladies room where I assault my throat a second time by bringing my lunch back up. This time with stomach acids! I notice that there are some rather large chunks of bread in the toilet and wonder if I even chew when I'm on prednisone.
I assess my situation standing over a toilet in the ladies room. I decide that this is probably a reaction to the CyberKnife therapy I just finished. I decide to call the CyberKnife folks so I tidy myself up and go back to my office to call them.
When I get them on the phone, I identify myself, my disease and the fact that I recently finished therapy with them, and tell them that I believe I am experiencing some adverse reactions and need to speak with a physician or nurse. I am placed on hold and then, in moments, am on the phone with the nurse. I explain all again and go into detail on my symptoms. I ask if what I am experiencing is consistent with CyberKnife therapy to my collar bone and neck. I am told -- no kidding -- we'd need to see you to assess you. I tell the nurse that that isn't possible as I am two hours away from her. I ask about side effects again and ask to speak to my physician. She tells me that my physician is not in today, but Other Doctor is covering. I suggest that perhaps I should be speaking with Other Doctor. She suggests I go to the ER.
I am tired of the nurse and tell her that that is precisely what I am going to do. And when I get there, a doctor will be calling her to ask her the very same questions I just asked and if she doesn't have any answers for said questions now, she'd better come up with them pretty fast.
I hang up the phone and find one of my good friends and confidantes to take me to the ER. This particular good friend turns out to be a great choice because he spent many years in hospital pr. I've got a pro on my side. So, despite protestations on my part to be dropped at the door, he parks, walks me in and tells them that I am having trouble breathing (true!). I am in triage in seconds and in a room in minutes.
I am given an EKG (normal), reiterate my symptoms, provide relevant history (oy), and am hooked up to a heart monitor. The doctor comes in and she is awesome. She listens respectfully and attentively to my relevant history and symptoms. She asks me questions and she lets me chime in with additional details that could help her suss out the problem.
For instance, she notes that my white count is now 16. That is high. She is looking at my oozing shoulder and wondering if I have some sort of infection going on. I tell her that I recently injected three Neupogens and suggest that I may be over-manufacturing. She considers the possibility. I'm being respected as a knowledgeable patient. I love her.
She is off to contact the Cyberknife folks and get me some pain relief. The latter comes in the form of a vile concoction of Maalox, Benadryl and, honest to goodness, lidocaine. Mouth-numbing, caustic-tasting (but pain killing) lidocaine. Relief lasts about an hour. Maybe I shouldn't have been drinking water, too.
My friend and I overhear the doctor speaking with the covering doctor at the CyberKnife facility. It's a bit of work, but we can hear her say, "She tried to call you." and "Is this consistent with potential side effects from the treatment?" (Hee Hee.)
This is really the end of the drama. I had called My Love after I got to my room and he left work to get The Kid from camp, up north and west of our home. That was supposed to be my job that day (another plan shot). He then headed back past our house south and east to relieve my friend from babysitting duty so he could get home for the evening. I think I got to the ER at 2:00 p.m. By the time My Love got there, it was after 6:00 p.m. I was still waiting around to get some update on my situation or discharge orders.
About 7:00 p.m., the doctor came back, told me she had spoken with the CyberKnife folks and that this, indeed, is likely a reaction to the therapy. Pain management is in order. She tells me the recipe for the vile concoction and writes me two scripts. One is for lidocaine, the other for a narcotic. Thank goodness because the vile concoction can only be consumed four times a day and provides limited relief. I take the narcotic that night when I get home after 9:00 p.m. I think I got four hours of sleep.
Come Thursday morning, things are much improved but still painful. I make myself a vile concoction at my desk. It works. I throw myself into work and love it. I also look at my Filo and see that I have PT scheduled for that evening. Sigh. I cancel PT for the second time that week. The week's plan lay before me tattered. Utterly shredded.
Except, there was Happy Hour on Friday. That, I can tell you all, came off splendidly.
Friday, July 25, 2008
Wednesday, July 23, 2008
Monday, July 21, 2008
Today I decided that cancer is my hobby. It fills my time. Lots of my time. For instance, having CyberKnife to the nodes in my left collar bone has required multiple visits to the CyberKnife facility for consult, simulation, CT and then three days of treatment. No treatment lasted more than an hour or so, and the only reason one lasted that long is because they had problems positioning me correctly and that took some time.
With cancer ever on my mind, last week pretty much had me immersed in my disease. But I've learned a few things through this ordeal, so listen and learn folks. You can do this if you have to. Today's lesson: If you have to do something miserable, find good things to balance it out. Don't let the F-ing disease drag you down. Thus, I bring you: Two Fabulous Days Spent with Sister #2.
She showed up at our home on Sunday evening. We left in the morning for what could have been (depending up New York metro area traffic) a two... or four hour drive. Sister #2 had the wheel. Having driven myself out for my last course of treatment in 2006, back and forth from the hotel and everything else, this was a fantastic luxury! I just sat. And chatted. And relaxed. It was wonderful! Thankfully, traffic was very light and we were able to go straight to our hotel to check in before heading to the hospital for my first treatment.
About the hotel: My sister-in-law and her husband (who need proper incognito names, I know) collect Marriott points. They kindly provided me points for my hotel stay for my first go-round with CyberKnife and they made the same offer to me this time.
However, I know how precious those points can be, especially when you do a lot of traveling with the kids up and down the Eastern seaboard because you happen to live in North Carolina and everyone else you know lives in Jersey or New York. So, I was a bit reluctant to take them up on it. Most particularly, because I wanted to get a bit more out of my hotel experience this time around. The first time it was just me, three days in a row, in October, and I brought work to keep me occupied. So, one of those business traveler inns did me just dandy. This time though, I was with Sister #2 and it's JULY and I want a pool to sit at when I'm not in treatment and I want a place to get food on-site. Food. Not Pizza Hut. Yeah, sometimes, I'm a diva.
I explained this to my SIL and BIL and told them that I understood that if this particular Marriott stay would consume too many of their valued points, and that if they would prefer to hang on to them for such a time when they could enjoy them properly themselves, no prob. I got it.
However, as I am explaining this to them, I hear BIL click-clacking away on his keyboard and bless his Marriott-point-filled heart, he tells me the room has been booked for the night. Joy!
And so it comes to pass that Sister #2 and I check into a lovely hotel with a pool, and a bar, and a restaurant and a convenience store and all the accoutrements an ailing, pathetic cancer patient like myself needs. With indebted thanks to My Love's sister and BIL.
We dropped our bags and headed off to the hospital. Grabbed a light lunch in the hospital cafe and then headed down to radiology. I was in my usual hospital battle armor: black yoga pants and cotton T-shirt. Full comfort.
I also came in with my preselected CDs to listen to while undergoing treatment. For my music selection, I am remembered by the staff. I do not want any mellow crap to serve as the score for the attack I am about to launch upon my cancer. I want to feel like a fighter pilot who hurtle determinedly into battle with nothing but confidence, energy, intimidation and winning on his mind before the starts dropping bombs on his enemy targets. I started with Godsmack (my favorite band) and kept it moving over the three days with AFI, Serj Tankian, Three Days Grace and Fair to Midland.
Each day, I let the music pound through me as I lay on the table and let General Grevious rotate his multi-pivoted head around my own, aiming his destructive light saber at my infected nodes. I imagined myself walking into an arena to take charge of the octagon in a UFC fight. My mind alternated between two healing phrases: "Die mother F-ers Die" and "Cancer Dies, I Live."
That is how I took control. This is how it looked:
Ol' Prednisone Face laying in her body mold.
Ol' Prednisone Face with her face and neck squishing through the Mask of Immobilization.
Ready for collar bone lymph node cancer obliteration
You're still waiting for the part about the great two days with Sister #2, aren't you? Well, after I put in my time at the CyberKnife facility, we went back to the hotel, changed into our swimwear, grab books, hit the bar to pick up a few pina coladas and then sat poolside for several hours. Perfect. Relaxing. Easy. We chatted. (We did lots of chatting.) Floated around the pool. Sat in the jacuzzi. That's right -- we hot tubbed. Allll afternoon. I also made a point of making sure how appreciative I was of Sister #2 to support me through this whole ordeal. Her selflessness, it was simply poignant.
After we tired of the pool we retired to our room where we lounged around until we decided we needed a fabulous seafood dinner. Being on Long Island, that wasn't hard to find. So, we prettied ourselves up and out we went. And we ate appropriately. I do believe I had the red snapper with shrimp over risotto. We split a steamed mussels appetizer. Yes, I had multiple glasses of red wine. I finished with a cappuccino and crisp apple tart with ice cream. I was well sated and had pretty much forgotten what this little trip was supposed to be about. On our way back to the car to head back to the hotel, we maneuvered into a jewelry store where we purchased silver anklets to remember our little holiday.
Back at the hotel, we fell asleep quickly and woke up still full. So after just relaxing around the room and reading the paper and eating a light breakfast, we packed up and checked out. We headed back to the hospital where I had my second session. In an hour, I was done and we were on the road again heading home. Light traffic again and a relaxing ride for me. As we got close to my house, we realized we needed Chipotle Grill for lunch. So we had it. Then, we cruised through the White House Black Market and Ann Taylor Loft across the street. I picked up a bargain pair of jeans that I will be able to wear properly once... you know... I am off prednisone for 15 minutes or so.
Speaking of: I have at least 77 platelets onboard and get WinRho this afternoon. I have be allowed to drop my prednisone intake by 10 mg/day. Yippee! Next chemo: July 29.
You didn't seriously just read all that, did you?
Monday, July 14, 2008
Thinking of you and what to write about when I get back. Extra thoughts for Angie, Charnelle and Stephanie. You know why!
Wednesday, July 2, 2008
I told New Doc that I wanted to get back on my chemo regimen but quick despite her recommendation to wait until after CyberKnife therapy. She confessed to being afraid to give it to me as I am likely to crash again. Well, duh. That's a given. We need to find a way to treat my disease and manage the ITP at the same time. It isn't going to be easy. But, if I am going to keep up my fighting weight, we have to experiment here and find a work around. Ultimately, we were co-conspirators on the same page, looking at the challenge and working together to suss out an action plan.
And I got my way. I will get my chemo with my Avastin next Tuesday. If you knew how I excited I am about this, you would have me committed. NO ONE should be this thrilled to know that they will soon spend the better part of an entire day getting infused with an indiscriminately toxic poison in hopes that it may, just may, slow down the progression of their cancer. Oh, but I am. I am!
My Love, The Kid and I are among the many of Americans who are partaking in a gas-price-crisis born summer activity known as the "staycation." The week after The Fourth, we will be heading to the Delaware River for some tubing, the Statue of Liberty, the Jersey Shore, and possibly an amusement park. We will also enjoy a fine dinner that was originally scheduled for Father's Day and get spa treatments thanks to a gift from friends for My Love's and my 40th birthdays... last year. Also possibilities if we don't drop: Wall-E and horseback riding. Don't worry, I've got a spreadsheet going to keep us organized.
I've a Problem with This
I received an e-mail from the Metastatic Breast Cancer Network today that bothers me. A lot. It reads, in part:
Come October, there will be a sea of pink with marches, walks and rallies as thousands of women with primary breast cancer are feted and cheered and honored. Yet, one third of women diagnosed with breast cancer will not be seen or heard. Those of us living with breast cancer day in and day out, those of us with stage 4 disease, those of us with advanced breast cancer, will be hidden in the shadows - misunderstood, feared, isolated and ignored. Our reality is never discussed at these breast cancer events. There will be no outcry for programs for those of us with metastatic disease. There will be no one speaking up for research aimed at targeted treatments to prolong life.
The e-mail goes on to let me know that:
MBCN has prepared a packet of documents designed to make it easy for me to contact my mayor's office to get Metastatic Breast Cancer Awareness Day, October 13 proclaimed in my city.
All I need to do is respond to the e-mail.
Oh, I am going to respond, all right. But not how the organization is hoping. One, I hope this is a well-intentioned communication; but it is irresponsible and poorly thought out and written. Two, there is no disputing that greater awareness of metastatic disease needs to occur. But to say that we are invisible and outright ignored by the breast cancer community when so many are working on our behalf is destructive, disrespectful and wrong. Reinforcing this misinformation with such an e-mail to our vulnerable population will only serve to make some with metastatic disease feel more isolated and frightened. And it appears manipulative. But, perhaps that's the intention: Prompt this community to jump to the organization's chosen action. This is shameful. Finally, from a professional perspective, there are much better vehicles for driving awareness of metastatic breast cancer than having some dumb day named for it. I'm not even going to get into that one.
Tracy's Purely Subjective F Stage IV News Round Up
- Pre-clinical, but interesting. Demonstrates progress upon previous models. The news source, Reuters, gives it a little heft. A true news source found it worth reporting on.
- Again, pre-clinical, but this press release discusses a potential therapy that crosses the blood brain barrier. This is important because so few therapies are effective on brain metastases. That's why radiation is a go-to therapy. But, if you have a lot of brain involvement, your options can run out quick. Especially if you need to undergo whole brain radiation.
- This study is clinical, albeit very early. So, lots of time for things to go south here. The press release does note that Phase II studies are already underway in other solid tumors. But, that may mean nothing at all for breast cancer. Remember: hopeful but realistic, people.
- Is your p53 defective? This article is on a first-in-class gene therapy targeted to restore normal function to the p53 tumor suppressor gene. Things that jump out at me: "groundbreaking" is a loaded word whether you put it in quotes or not. If you're going to use it, you'd better be right. Also, the reference to direction on marketing the medication not arriving until early 2009: I think I can wait that long. Plus, I'm going to need some time to find out if my disease would benefit from this type of therapy.
Friday, June 27, 2008
I don't know what made me do it. Well, really, I do. It was all those posts about how cancer has been a "blessing," and "awakening," and "taught me so much." F that. So, I weighed in on the subject.
A few days later, I received an e-mail from Leroy's assistant letting those who had responded to the post know that they wanted to put together a photo gallery of the people who replied. Would I like to send a photo?
Sure! Why not?
Well, yesterday, Leroy posted his photo gallery. 390 replies to the blog, who knows how many photos submitted, 32 photos in the gallery. Guess who was selected? Swear. Scroll down to yesterday's post!
Thursday, June 26, 2008
Want to start with a status update? Ducky.
I remain at 60 mg of prednisone and the freaked out lady doesn't fit the profile. I'm doing OK on it. My biggest complaint: I feel really, really good; and it's artificial. It's because of the steroids that I'm content. And it ticks me off. See, there's the bipolar aspect, right there. I wonder what I really feel like. I haven't had any roid rages. I'm definitely a bit jittery. I see the weight, although no one else seems to. My appetite, while increased, is not ravenous. I'm not overeating. Although, my resveratrol intake has increased over what it was in the winter and spring. But, that's probably a good thing, right? (Indulge me here, would you?)
On Monday, my platelets were 103. Down from 166, but certainly respectable and treatable. I received my Avastin infusion. That made me feel a bit more secure, but I wanted my Ixempra, too. New Doctor says she wants to wait until after my CyberKnife treatment in mid-July as she is trying to reduce the risk of another platelet crash. This does not sit well with me. I want another course of chemo now. I'm already a month off my schedule. I have an appointment with her next Tuesday, at which I am going to lobby for an infusion prior to then.
I had my simulation and CTs done for mapping of my CyberKnife treatment. I'm scheduled for July 14, 15 and 18. They not only made a mold of my body, which I am to lay in during treatment, they also made a mask for my face because they don't know how far up my neck they are going to have to go. It's a flexible plastic thing and I can breathe just fine in it. But it gets strapped down. Tight. It's immobilizing and will be uncomfortable to have on for a couple of hours. Whatevs. I'll deal.
Sister #2 is going to drive up from Maryland to accompany me to the first two treatments. I'm really excited about it. Sick, this is. But, I'm looking forward to hanging out with her as I don't see her nearly enough and when I do, it's always when our enormous herd of family is around. Now I have her to myself!
I've added a new alternative therapy to my daily regimen. This always makes me nervous because there is never much, if any, clinical data behind supplements and herbs. I cannot know for sure whether something may truly be beneficial to my disease or possibly destructive to my treatment. However, I have found some loose information that indicates that EGCG may, at least, not hurt me. I intend to talk it over with both My Oncologist and New Doctor to confirm. I suggest anyone adding alternative treatments to their regular medical treatment do the same.
Metastatic Breast Cancer News Round Up
- From US News and World Report, information about a study of vaccine therapy in metastatic breast cancer. There were only 19 women in this study and vaccines have proven rather tricky to make work in this setting. Here is the abstract.
- A press release on the initiation of a Phase II study of CR011-vcMMAE in advanced breast cancer, which targets a protein known as glycoprotein. Just a press release announcing the company with the molecule is continuing to study it. No news or analysis here. Just, hopefully, eventual progress.
- Business publication, Barron's has this article about the manufacturer of sorafenib. The company is currently enrolling metastatic breast cancer patients in a number of Phase II trials.
I forgot this last post, and it's too cute to pass up. After we ordered The Kid's birthday cake, The Kid and I were thinking about future birthday cakes and what they might say. The Kid decided that for his ninetieth birthday the cake should read: Wipe His Hiney, Jason's Ninety! What I wouldn't give to see that cake.
Saturday, June 21, 2008
Certainly, I do not place myself in their elevated realms of accomplishment or in their desperate depths of despair. But I do wonder if steroids inject not just a jittery, bi-polar, plumpness into me, but also a jolt of inspiration to my creativity and writing. Such as they are.
My head is brimming with thoughts and I need to siphon them off. I want to siphon them off. Figured I share them all with you.
Women Living with Cancer Study
Being at the advanced stage of disease that I am, after being so heavily treated with, what, nearly ten different chemos? Plus having brain involvement, I am not the ideal clinical trial candidate. More precisely, I am not the ideal Phase II or III study candidate. I would be limited to Phase I studies where the key objective is to see if the potential treatment in question does or does not kill the patient. (Pass.)
But I am eligible for other forms of studies and I just joined one that I am very intrigued with. It focuses on exactly what I asked every investigator I spoke with at the YSC Conference earlier this year: who is looking at long-term metastatic breast cancer survivors? How are they coping? What more can be done for them as they live longer without ever being cured?
UCLA's Jonnson Comprehensive Cancer Center is conducting an extension of the Women Living with Cancer study (no link to be found?!) under the direction of Dr. Annette L. Stanton. The purpose is to learn more about the experience of women who have been diagnosed with advanced breast cancer. The anticipated benefit: Information gained from the study may contribute to understanding how women live with and adjust to having Stage IV breast cancer and may guide the development of supportive interventions for women with metastatic cancer. Yippee!
As a potential participant, I filled out an initial questionnaire about my health history, mood, coping behaviors, social relationships, personality, sleep quality and physical symptoms. I also collect saliva samples twice a day over three days. Now that I've been accepted, I am being asked to think about my experiences living with breast cancer and write about the topic for 20 minutes on four separate occasions that I will schedule with the study coordinators. I received a packet with four sealed envelopes containing the topic I need to consider and write about. I cannot peek until I schedule. Three months after completing my writing assignments, I am going to complete another questionnaire, similar to my initial questionnaire and collect saliva samples again.
I'll be visiting this topic again once I start my writing sessions. Oh, I forgot to mention, I get $80 for completing the study. What do you think: shoes or shoes?
Please pass this information along to any other Stage IV breast cancer women who may be interested in participating. The project coordinator is Carissa Low and she can be reached at carissal at ucla dot edu.
As previously mentioned in this blog, The Kid turned nine last week. Every year for his birthday, I put a cute (to me, anyway) message on his cake. For example: "What Fun, The Kid is One!," and "Yahoo, The Kid is Two!" You get the picture.
This year, The Kid and I went to Coldstone to get his cake and when I was asked what to put on the cake, I paused. I hadn't even really thought about it. No worries, though. Without missing a beat, The Kid chirped up and said, "What a Time, The Kid is Nine!" I nearly shed a tear on the spot. My big boy. A small gift I'd been giving him his whole life, and now he is my accomplice in the project. I am still smiling.
My Love is a devout admirer of the day lily, the bright orange summer perennial that lines many of our rural roads. We had some at our previous home, but we also had a lot a deer. Deer are also devout admirers of day lilies and they never failed to eat the buds before we ever saw a bloom. Now that we are country gentry and the deer tend to stay away from our open yard, I gave a small gift to my Love. Last year, I dug out all the plantings and rocks around our mailbox and planted day lily seedlings there. Now when My Love leaves and returns home, he is greeted by his own garden of day lilies. It's a small gesture, but I know it makes him happy.
I leave you with this. Don't pay so much attention to the video. Just, you know, listen to the music and lyrics and go with the Universe. It's all good.
Wednesday, June 18, 2008
If so, I'm sorry if your hopes and dreams went awry today, but there was apparently some sort of clerical error in The Universe today and I somehow ended up with your day. I was unable to locate appropriate contact information to correct the mistake, so I had no choice but to take it. If it's any consolation, I did use it well.
- My drive to the CyberKnife facility was easy, without incident and completed in record time. While I did spend a little more time observing the structural details of the George Washington Bridge than I would have preferred, the traffic was mostly modest and flowed rather well.
- I arrived early for my simulation. So, I enjoyed a nice roast beef sandwich on cranberry bread and some hummus and pretzels in the hospital cafe. While dining leisurely, I IMed friends/colleagues and kept in touch with my daily routine.
- A call from one of my new nurses contained the ASTOUNDING information that I had 166 platelets on board. Nine hours later, I am still in shock and for much of the day had to fight the urge to call her back and ask her to re-run the test. Holy crap. I get Avastin on Monday!
- While being simulated -- getting a mold of my body and face made -- the technician asked what kind of music I liked. Anticipating that their music library contained only easy-listening fare intended to keep freaked out cancer patients from losing their S on the spot, I told her -- Harder rock. Not classic stuff. Now. She put on some Incubus for me!
- Before leaving the facility, I learned that my treatment had been scheduled. I kid you not, it starts on July 13th. Weeks earlier than anticipated, and during a time when The Kid is already planning to spend time with his grandparents. So, with The Kid with my folks, and me on Long Island, it looks like My Love gets a mini-vacation.
- I've been hoping for rain. My New Jersey countryside has been hot and parched lately. This afternoon, I enjoyed rain through my sunroof and later, my favorite nature show: a glorious thunderstorm.
- I ate half a sleeve of Thin Mints. (Is that bad?)
Tuesday, June 17, 2008
Personal Health Columnist Jane Brody has an article today that discusses the very form of therapy that has kept me relatively stable, able to maintain a mostly normal lifestyle with a good quality of life for as long as I have. I am apparently part of a small but growing number of patients who have chronic cancer. When one treatment ultimately fails, we move on to the next. And the next. Repeat as needed.
Additionally, I would be remiss if I didn't pass along this information from Well Columnist and Blogger Tara Parker-Pope about my favorite recreational compound. Do its benefits never end?
So I start in a good place today. Say it with me: Hope is a powerful thing.
Monday, June 16, 2008
- We celebrated The Kid's ninth birthday this weekend. I got to see my son turn nine.
- My Love and The Kid ran a 5K on Father's Day morning. Not their best race, but The Kid came away a raffle winner and got four box tickets to our local baseball team. He's stoked.
- After infusing to 74 platelets on Friday, and starting a new ITP drug, I have no idea where I am now. I was supposed to get a CBC drawn yesterday, but never had time. I should have had one this morning, but am coordinating new employees and interviews, so I haven't made time for that yet, either. I'm also supposed to call my doctor to schedule an appointment. I guess I should get on that, too.
In the meantime, this just came across CNN and I thought the hundreds of readers who devour my incisive writing, thoughtful analysis and devotion to researching all things breast cancer would find it interesting. I hate to disappoint. I have a reputation to uphold.
Wednesday, June 11, 2008
It's a miserable situation for anyone to be in. But my heart breaks in a more delicate way for her. Like tiny bits of fine crystal that sing the moment they shatter and scatter. She, who is in a happy relationship but unmarried, who wants very much to have children of her own, and has slogged through some challenging personal matters over the past several years, is now facing a potential -- but not forgone -- breast cancer diagnosis. And she's closing in on my age at diagnosis.
She's now in the position of having to make some of the toughest decisions of her life in order to maybe save her life. Stay aggressively vigilant? Undergo prophylactic mastectomy? Reconstruction? What kind? What about her ovaries? Do they stay or go? What will she look like after surgery? How will she feel about her new body if she undergoes surgery? How will this affect her relationship? Bilateral mastectomy means no breastfeeding should she have children. That's a joy she'll never know. A miss. Lots of missing things.
The good news is that the chick is rather resourceful. She quickly found Bright Pink, an organization that provides support to young women who are at high risk for breast and ovarian cancer. They have been a phenomenal resource for her as she navigates this new and difficult path.
And she has made a decision. She will undergo bilateral mastectomy with reconstruction. It took my breath away when she told me. The enormity and finality of the decision... and she just stepped up and claimed it. Courageous, is the only word I can think of to describe her.
Saturday, June 7, 2008
My gamma knife procedure went smoothly. The team was on its game and I was in and out of the medical center in about six hours. I spent the rest of the afternoon and evening sleeping. The residual effects of fentanyl and ativan will do that to you.
I'm left with two small goose eggs on the back of my head and a couple scabs on either side of my forehead. And hopefully two fried up little tumors that are withering in anguished death throws as I type.
Friday was chemo. Or, more accurately, it was supposed to be chemo. Turns out I had two platelets. How I went from 119 platelets last week to two a week later is anyone's guess. I just love all the unanswerable questions of hematology and oncology. It's just one big fat guessing game. Keeps it interesting.
My guess, which we all know is based on nothing other than pure gut feeling and absolutely no medical expertise, is that the Ixempra is finally throwing its weight around. I'm hoping the new chemo is as good at decimating tumor cells as it is at platelets.
So, after an infusion of IV Ig, I was off to an infusion center where I was given platelets. I boosted nicely to 42 and am hoping that I hold onto them. In fact, I am hoping that I continue to build them. I don't know how I'd stand another go-round on steroids.
Wednesday, June 4, 2008
I feel really great. And that's strange to me. But, yeah. I feel kind of perky and happy and at ease with life. Oh, I know cancer is standing right behind me breathing down my neck. Jerk. But today, ignoring its threats seems as easy as a summer daydream. I am choosing not to question why I feel so... normal. Especially since I'm having gamma knife tomorrow.
Doo-too-doo! Ignoring cancer.
Today USA Today tells us about a study that replaced barium (which is just F-ing disgusting) with whole milk (which is yummy when mixed with Quik) as a contrast for X-rays. Turns out the radiologists couldn't tell who drank what by looking at the images. This article (scroll down) and a gallon of Quik-infused milk are coming with me to my next set of CTs.
During Memorial Day weekend, My Love catapulted me off the back of a jet ski. After skipping across the surface of the lake, rapidly decreasing my velocity from 40+ mph to zero mph in about three seconds, I bobbed gasping to the surface minus my eyeglasses.
So. I purchased a new pair yesterday. I think they are rather rock-and-roll. But, I fear that they may appear to some (who are less fashion forward than I) as belonging to a middle-aged woman who feels the need to make a statement with her eye wear as she feeds her many cats and curses men under her breath. Whatcha think?
Finally, thanks to Peter for this awesome little time waster. IT EVEN MAKEZ TALKIN BOUT CANCR KIND OV FUN AN SILLY.
Monday, June 2, 2008
I do it here, which is stupid frustrating and makes my writing weak and deceptive. It keeps me from posting.
It's not full on lying, really. But, if I crumble, it will scare people. People other than me. And I can't have that. I can't cause more pain than I already do. So, yeah, I'm doing just fine.
On the supraclavicular node front, an appointment for CyberKnife therapy remains out of reach. I had an appointment with the radiologist, who said we could definitely hit the nodes. Since then, it has been in the hands of a single insurance coordinator, who is allegedly working on getting approval from my insurance company. I spoke to her this morning and she says she expects approval before the end of the week. That's over two weeks from when I had my appointment! And, once it comes through, I am going to have to schedule a CT and then wait a few days after that for them to map the procedure. This is taking entirely way too long. Makes me feel like taking some people to task.
So, to kill time, I've been reading lots cancer news to try and find those nuggets of hope that keep me thinking that someday there will be something for me. I liked this and found this interesting.
Oh, and on the Good Things list, I am adding:
- Team Hill turning in another fantastic 5k team effort. The Kid handily defended his title as top 11-and-under runner at the Run of the Mill.
- Fabulous weather for hanging out with friends and family eating brunch
- Warm breezes and the scent of peonies that made napping on the couch following the 5K and brunch extra delightful.
- Summer. (sigh...)