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.