Tuesday, January 11, 2011
a quick New Year update
I am trying to decide what the next move is. Getting input from other docs and comrades. I'm pretty dang tired of chemotherapy.
I'll know more next week, so I'll post a compete update then. Thanks for being there, dear readers.
Monday, November 15, 2010
When the dog bites, when the bee stings, when I'm feeling sad
We are organizing a group trip to the famous (maybe just in San Francisco) Sound of Music Sing-along on December 5th. I'm working on costumes.
What should I go as a Von Trapp child, a nun or a lonely goatherd?
Got my tumor markers, and they continue to decrease a little, which is a relief- although they'll never be at zero. I've been on chemotherapy now for 8 rounds, over 6 months. Frankly, I'm sick of it. Next wednesday is my third round of Doxil. I have a PET CT scheduled for December 15th and then I will talk to Dr. C about whether we can take a vacation from chemo.
Starting a writing class tonight, I'll post the first few pages of my story later in the week.
Auf wiedersehen
Wednesday, November 3, 2010
Zigzags of Treachery
I've been working hard on my writing, I'll share a chapter soon, I'd love some input, it's a mystery novel, and my hero is living with cancer. I've been obsessively reading Dashiell Hammett. Wow his detective fiction is the cat's pajamas!
Things are OK here in san francisco, the sun is out, and I'm trying to stay positive.
My emotions zigzag every day.
One minute you feel like a normal, average person and the next, someone at your HMO talks to you as if you're dead man walking. A punch in the gut from a suit, as Hammett might put it.
This is a close up of one of my Egyptian collages, all those sexy hieroglyphic gals are Barbie.
Thursday, October 28, 2010
Spooky Halloween Chemotherapy
I'm feeling it today. I'm ringy, I can't sleep, even after ingesting ambien and lorazapans. It's how I imagine a crystal meth tweaker goes through her day.
I'm very flushed, my whole body looks like I spent 5 hours in a steam room, I'm orange, maybe from this spooky chemo?
The good news -- my hair is creeping back on my head, with an almost covered scalp. Still about two months away from revealing it as my new gamine hairdo. my neuro-apathy has subsided a little (pain and numbness in my feet and hands).
Also, the last week or so I've been feeling so much less tired. My bone marrow must be returning to normal. So I signed up with a personal trainer who works putting cancer survivors back together, -- I rightly feel like a hot mess. I start on Monday. Wish me luck. I'll write about it after.
I'm waiting on my tumor marker tests, the CEA, CA-15, and Circulating Tumor Cells blood. I've talked about them before, we do them every month as a loose, untrustworthy guide to what's going on in my body.
I've started writing (fiction!), so the blog's been neglected a bit, I kinda thought nobody was reading it. But there are a few of you hearty souls out there --that really pleases me!
Have a spooky and sweet Halloween!!
Sunday, October 17, 2010
Un Potluck Francais
Second, I decided to push for Dr. C's recommendation no matter what my local Onc. said.
It was a weird meeting with my local onc., I brought my hubby, because I have a kind of Stockholm Syndrome. I don't trust my local doc and believe she hasn't given the best advice (these things are so fuzzy in cancer treatment). but, I want to believe and trust her, we've been through so much together. So, she can effortlessly plant seeds of real doubt in my mind.
I walked out of the meeting in confusion and doubting my choice to follow Dr. C's plan. On the other hand, Ned thought she hadn't made a good case to follow her treatment plan, he was un-moved.
Amazing how we had two totally different pictures of how the meeting went down. And more personally how I'm not in the position of strength. I am a lawyer by training and have always been the calm, pragmatic person in a contentious meeting. But when it's about me, I only hear about 40 percent of what's being said and then I'm swept away in a panic wave. I hope I made the right decision, but I've gotta go with the world famous doctor.
So now I am getting Doxil monthly, for the next three months with a scan in December to see if we're holding my disease at bay. The drug is not as strong as the Ixempra/Zelota cocktail so I should start to feel better. And, joy!, my hair will start to come back in.
We had to cancel a trip to paris this month, I was too exhausted go and my neurapthy was increasing -- numbness and pain in the hands and feet. A side effect of the Ixempra. It made me very sad to cancel, Ned and I were so looking forward to it.
To cheer us up, I threw a little French dinner party last night. Beaucoup des fromages, vins, et Absinthe. I baked madeleines, Ned made Coq au Vin. C'etait superb. Merci mes amis.
Sunday, September 19, 2010
Mad Scientists and Scan results
So now begins my negotiation to follow Dr. C's opinion. Contrary to what you would think, my local treating onc, is not open to a specialist's advice, she often says she has no idea who he is -- let me tell you he is the most famous doctor working with inflammatory breast cancer patients and recently got a 7 million grant from the Susan Komen fund for an IBC clinic -- it seems like a real ego reaction. Yes, can you frackin' believe it, dear readers???? Her ego, my health.
So I need to fight for this switch. I have to put my trust in Dr. C, he says he wants to manage my cancer like a chronic disease. Nobody ever says this to me. I look at his bio over and over and some of his writings. This guy is not a mad scientist as far as I can tell. But it's easy to be filled with doubt about who to trust. And harder than you would think for me advocate for my own treatment. I'm meeting my local, skeptical doc on thursday.
I have blood draw tomorrow and a heart test, to see if the chemo has damaged my hear, since I've put on so much weight. Fun stuff. Deep breath, exhale.
Wednesday, September 8, 2010
sputnik is active
It's been a bit of a gap since my last post. I didn't forget about you, dear readers, I came down with a terrible flu between my 5th and 6th doses. Fever, sore throat, cough and still clogged ears -- something delightfully called otitis media. The nasty little ENT doc told me it could be 1,2 or 3 months before I get my hearing back.
I was on the couch for almost 2 weeks. They cleared me for pneumonia and low blood cell count, and sent me back home to get over it. I was really sick, haven't been like that since I was a kid. My mom came into town and helped take care of me (thanks mom) while hubby Ned worked like mad to get his solo show open last Friday.
I checked with Dr. C in philly and he recommended I take the 6th dose without delay since my blood cell count was fine. My local onc said to put it off (of course). I put my trust again in Dr. C and took my 6th Ixempra dose last Wednesday.
It's been so busy, mom here, my good friend Yoon from law school came into town. She's super fun like a delectable cocktail on a summer night. Ned's awesome opening, and, of course the neverending story of my treatment.
I've been tired and super cranky the last 2 days. The PET CT didn't help. I need to pull it together and feel the small joys. Das-vi-dania!
Wednesday, August 18, 2010
Yield
Sunday, July 25, 2010
Am I a Cyborg, Cylon or just a bionic woman?
I am now part machine, I alternate terms for myself, am I now bionic, a cyborg (too dated) or a cylon? I had surgery in Interventional Radiology on Tuesday to have a port put in. I was very scared, although it's a simple surgery where they put you into twilight, awake and aware. My head was under a tent so I couldn't see the actual carving. I talked with the surgeon about recessing it so it didn't bulge out of the skin, he was kinda jerky about it, but he did a good job. I went in at 7 and left at around 1030. The port is a plug under my skin in my left breast, which allows easy access to a major artery for chemo, blood draw and some injections. It still hurts when they plug in, i was especially sore on Wednesday when they fired it up. On the bright side, my left arm which was so painful from damage is feeling better, it was almost immediate, like my arm took a deep breath and exhaled the pain. I brought my dose back up 25%, per Dr. C's instructions. My local onc was against it, but I have to remind myself that I can't trust her, not because she has bad intentions (I hope) but she doesn't practice the same medicine as Dr. C. I'll leave it at that for now. I'm fatigued and achy, my legs hurt, an stiff bone pain, but I haven't needed the aid of serious painkillers. which is better than I expected. Sorry about the lame picture along with this post, I haven't gotten back to my studio. So any opinions? Cyborg, Cylon or bionic?
Wikipedia
Cyborg so known as a cybernetic organism, is a being with both biological and artificial values (e.g. electronic, mechanical or robotic) parts. The term was coined in 1960 (which I like)
Cylon are a cybernetic civilization at war with the Twelve Colonies of humanity in the Battlestar Galactica science fiction franchise, in the original 1978 and 1980 series, the 2004 reimagining, as well as the spin-off prequel series, Caprica. In the 1978 series, the Cylons is also the name of the race who created the robot Cylons. (Nerd Alert)
Bionic - Jaimie Summers, biology + electronics.
Saturday, July 17, 2010
To Philly and Back Again
Philadelphia was hot and steamy. And dull. Fox Chase is in the northern suburbs, which seems to be frozen in time, but not a charming era. So I've posted a Paris picture -- Notre Dame Cathedral.
Dr. C was not happy with my blood and PET Scan results, only minimal improvement after 3 doses. He was annoyed that my local doctor encouraged me to take a reduced dose of chemo again, so we are going back up to the higher one on Wednesday. I was depressed about the lack of improvement, but I know in my heart it's working. Now I just have to convince my cells. He wants me back in 6 weeks, total drag. I did get his personal email which will make communication better. My veins have said uncle-- we can barely eek out blood from them, one is black from my elbow to hand, I feel like a Frankenstein. I am having surgery on Tuesday and getting a port put in, defeated after 2 years of putting it off. I was very sad about this, I'll write about it after. My nurse swears I'll be be happier with my port than a new car, because of all the pain it will save me.
Today at the lab I had a very intense encounter. The phlebotomist was having a hard time drawing blood since my arm is kaput, we started talking about how unfair life is. She survived the killing fields of Cambodia. She lost her husband, sister, mom and baby. They took her husband out and shot him. They took her sister and enslaved her. We cried together as she described the fear she felt every day, the cruelty of the regime and starving as she escaped to Thailand. Seriously, I'm weeping now as I think about our conversation. She is one tough motherfucker. And so am I.
Sunday, July 4, 2010
Back from Paris
We had quite a wonderful trip, despite some nasty side effects from the Zeloda. I soldiered through.
We went to england first, visited my hubby's parents. Then on to the beautiful apartment of Colette and JP in the St. Germain neighborhood. MERCI Colette and JP! We went to churches, flea markets, a visit to the city hospital, Hotel Dieu, a dog bite (two different incidents!) AMENDMENT -- one dog bite and one hospital visit only, sorry!)
rode the metro and the bus, had a cooking class in the Marais, a canal cruise and enjoyed the delights of the marches. The Zeloda side effects hit me as soon as we got there. Hand and Foot Syndrome it's called. Developed an infection and had to see a doc, so we picked the hospital in the city center, thought they would speak the most English. They did and were very kind and efficient. My entire visit and treatment cost me 68 Euro - with no health insurance!
Paris is really a delightful city, I think better suited for adults. When I went as a jeune fille, I was more intimidated than charmed and was dragged through all the long lines for the big sights. We found lovely small, unique museums to visit. It's a grand, glorious city, steeped in vintage charm, which of course LOVE. I missed the vintage paper market because of my illness, so it's top of my list when I make it back there.
I've had my third dose of Ixempra since we got back, and am getting my first PET/CT scan on friday to see how the chemo is working. Then I fly to the east coast to see Dr. C. the last thing I feel like doing.
This is us on the Canal St. Martin boat tour, a great step into the rest of Paris. I am now, unfortunately for everyone around me, peppering my sentences with french phases, and looking forward to going back
A bientot!
Wednesday, June 9, 2010
Managed Care
This is the third collage in my cell series. I finally think I was successful at using the ancient Egyptian pieces with my mid-century imagery. Again, this is about treatment. I'll post a better image when I get back.
je vais a paris
This is another in the cell series of collages, this time I've gone back to my early 1950's Mademoiselle magazines. A bientot!
Friday, June 4, 2010
Round 2 of Chemo
Like clockwork, my hair fell out almost 3 weeks to the day of my first infusion. I have a few tiny tufts and some fringe of bangs. But not for long. I made the decision to go to a fancy custom wig maker today, to see what he can do for me. Stay tuned.
This is one of my new collage pieces. I made this one shortly after my liver biopsy, but I think is generally a reflection of my treatment. She is from a turn 1909 Ladies Home Journal -- an Ad for her extremely uncomfortable girdle. She looks so sad in it! It sure doesn't make me want to order a Warner's Rust-Proof Corset.
Friday, May 21, 2010
My Liver Biopsy
Well dear readers, the answer is a really long needle. The whole thing was mad with needles. They used 4 different needles to numb me. One for the skin, next the muscles, next the membrane around the liver and then the big kahuna. I was numb but I could clearly feel the guy actually in my body, in my organ, grabbing and shaking for tissue. I had taken 4-5 ativan for it and tried to visualize myself in a hammock in Hawaii. I was continually complemented for how calm I was during the whole ordeal, "high as a kite" I told them. They took 4 different samples to be certain they grabbed some of the tumor.
They were all very kind a professional, although I never got the pina colada I ordered.
I was left with a black and yellow bruise that looked like I had been kicked in the chest. And an unshakable feeling of being violated. A vivid physical self awareness of the layers of tissue that I would have loved to get through my life without. I hope I articulated this well enough. The experience haunts me. I'm making some collages about it and will post them soon.
Tuesday, May 18, 2010
Taking a breather
They stressed me out about the side effects of the drugs, I've doubled down this time. I took the advice of the Philadelphia specialist verses my local onc. and am getting twice the toxicity. The Ixempra makes your bones hurt. Like you have a high fever, without the fever. I imagine it's the crackling of my bone marrow cells being fried. The Ixempra will make my hair fall out. I have about 2 weeks left of my mane. The Zeloda gives you neuroapthy-- pins and needles in your hands and feet and worse. The pictures horrified me. And I live in fear of getting thrush, a common side effect of chemotherapy.
I've had to nap everyday since treatment started. I hope I'll adjust, but chemotherapy is cumulative, so you get more toxic as you go on. I'm feeling sad and overwhelmed. But I'm still not giving up. I'd eat live wasps in a glass shard gravy if they told me to. Crunch, crunch, crunch.
Sunday, May 16, 2010
Birthday week
Some friends have faded away since I got sick, while others have become bright stars in my sky. Ned really worked hard for my birthday to be special and I love him more than ever for it. Thanks guys.
Thursday, May 6, 2010
Quick Update
Saturday, May 1, 2010
The Space
More soon.
Sunday, April 25, 2010
Philadelphia - the good and bad news
We're going back to Philadelphia on Wednesday with all the results to get a new treatment plan from Dr. C. His associate Dr. D is going to try to talk my HMO Doc into accepting it. This isn't going to be easy. I will likely have to start paying for my treatment myself while I fight my HMO. A fight I've been told by other patients is almost impossible to win. You have to try to shame the HMO into doing the right thing
At first I was devastated, there is no doubt about my liver. They biopsied it to confirm it's the same cancer as my breast cancer. Now I'm also furious at my HMO.
Ah, dear readers, where's the good news? you ask. I'm not sure, but probably that I got this PET scan and put it in front of a serious oncologist. Otherwise who knows when my HMO would have caught the infiltration to my liver.
Thursday, April 15, 2010
Test Results
I had my brain scan last night at the hospital. Took quite a bit of Ativan to get through it. They brace your head in place in a sort of Silence of the Lambs headgear with sponges, put ear plugs in and then you're backed into a small windy tunnel -- and bombarded by noise for 45 minutes. With a break to inject you with contrast dye. They pump air through the machine, so it sounds like the tundra. I never opened my eyes once. I knew better. Once you see how close you are to the ceiling, you can't catch your breath.
The good news is that there is no sign of cancer in my brain. I was pretty worried. I know a few women dealing with brain mets and it's terrifying to hear about. So, pfew! cheers! It was worth the 45 minutes down the rabbit hole.
Tuesday, April 13, 2010
the journey
Tuesday, March 16, 2010
sadness
Sunday, March 14, 2010
The Space Between Us
Monday, March 1, 2010
Scan Results
It felt so good to get out of my cancer life, I can't wait for my next trip. I've been a bit down since we've gotten home. It's been rainy and cold. I've been trying to exercise to improve my mood. Made it to my gym for the time since maybe July. I'm proud of myself. I'll try to go again soon. I still need some kind of mood enhancer.
Wednesday, February 24, 2010
Scanner darkly
After rescheduling several times, I had my two scans today-- a bone scan and a CT Scan with contrast. I get them every 3-4 months to monitor my disease. Let me be honest with you, dear readers, they totally suck! Today is the first time I scheduled them both on the same day and I think I will keep this my standard. The bone scan is done by the nuclear medicine department - (scary, right) something they get from nuclear reactors is injected into my arm. Then we have to wait 3 hours and then we scan. The scan itself takes 20-30 minutes. The worst one is the CT Scan with contrast. First you have to drink a few liters of a barium milkshake and then when you're naked except for the gown on the table, they inject some kind of blue dye into your arm. Except that for whatever reason, the CT techs can NEVER hit a vein. 3, 4 even a record 6 misses once left me sobbing on the table. What I learned to do is to go see my IV nurse before and get a pick put in. Problem solved. Except today the bone scan nurse was supposed to leave in a pick when she did my injection and oops she forgot. I had to go directly to my CT appointment and per usual the CT techs couldn't do it. My veins were "rolling" or "jumping away" they complained. I started crying out of the pain of the needles and frustration. Finally after 4th failed attempt they got a nurse to come in. She had to calm me down and get the pick in. I'm exhausted and feeling pretty nuclear reactive. Wasn't the Hulk created by exposure to radiation? I might like that.
Sunday, February 14, 2010
Cocoa Beach Party
Wednesday, February 3, 2010
Keep on Keeping on
A Deep Exhale blog reader asked me what I tell myself when I’m down or discouraged. I try to maintain hope. To paraphrase Martin Luther King – hope is the vitality that keeps life moving and gives you the courage to go on in spite of it all. This seems so true to me.
I also really love the small moments of being alive, being present, whether I spend hours watching Matchmaker Millionaire, reading or wandering through fleamarkets. I love being with my husband and our kitties. Since I got sick I noticed the fresh air tastes amazing, like a perfectly ripe fruit or peppermint tea.
Plus, crying all the time only seems to increase the burden of being seriously ill—although I’ve done my share. I try to recover and find the vitality. I tell myself over and over that I am healthy, vital and strong.
Tuesday, February 2, 2010
The Great Peel
This week ended with me feeling completely exhausted. I’m feeling much better than last week and every day I can do a bit more. My skin is now more sunburned pink than crimson and the great peel seems half way through.
But my mind is scattered and tired. Yesterday I withdrew from an MBA program I started on my last day of radiation. One of my dear friends who I went to law school with questioned my sanity for enrolling. All I can say is it seemed like a good idea at the time. But between my uncompleted accounting assignments and the painful team building exercises, I knew I had to put on the brakes. As you can imagine, as I was recovering B-school homework was the very last thing I wanted to do—right next to my taxes and a dental scraping. The school is one of those new “green” mba’s – people, planet, profits – but in practice it was hard to give a shit whether Wal-Mart uses energy efficient bulbs or how the carbon cap and trade market will work. The students were so enthused and I could hardly fake it. True to my overachieving self, I simultaneously signed up for some classes at City College. In art history, studio art classes and I’m debating a writing one. I really want to stay in bed for another week. I was supposed to have my scheduled scans this week—about every three months I need a bone scan and a CT scan. Yes, they’re as horrible as they sound. I can’t sugar coat it. But I so desperately need a breather from the hospital, I’ve put them off for another 2 weeks. Hopefully my sweet hubby and I can take a trip.