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In a lot of ways, my body has been slowly, slowly healing. I still have body aches and back/shoulder pains, but they don't prevent me from sleeping anymore. And I still have hot flashes, but they don't always wake me up at 6 am anymore. My biggest nemesis, my stomach, is nowhere near fixed yet. I miraculously had a few days break in the pain. I got so excited to eat that I overdid it. I need to nurture my poor tummy like a fragile flower, and instead I ate Arby's and pizza. Now it's back to hurting again daily. I'm so tired of it, so tired of eating rice and soup. So tired of being confined to the house or at least close by so I can come home and crawl in bed with my heating pad. I'm also so frustrated with the gastroenterologist. He has not called me with the CT-abdomen results, and it was 3 weeks ago!!! I found out from an unrelated doctor that the scan was fine. I guess the ugly truth is that most doctors simply don't care about you, as long as they make money and avoid lawsuits.
One doctor/medical group that does care is Dr. Singh at One Medical Group. Finally, I have found someone/someplace that cares. Too bad they don't have an oncologist...
I've been so tired of being cooped up at and around the house. Today we went to watch the sun rise at Mt. Tam. Then we stopped to take a walk on the beach until my stomach ruined the lovely morning. But we saw this dude!!!!!!!!!!!
He was with a bunch of other dude friends!
He came over to me on the beach and I pet him. Then he whipped around, put his front paws in the water and barked at the ocean. He was so awesome. I love him!
My hair is growing! It's already weird to look at my bald pictures and remember I was completely bald for 6+ months. I really love my hair right now, I think I'll stick with the shaved head for a while. Hah, along with my new head of hair, I've also been blessed with some unwanted facial hair! I think it's the fact that I'm still in menopause and my hormones are all messed up, combined with the fact that all this new hair on my body has never been bleached by the sun. It's not my favorite. But I'll take a mustache over cancer any day!
The weekend after my last post I was really sick. My migraine developed a new symptom: every time I moved my eyes around I had a flash of white light and pain in my head. I also had a fever of 102 with chills. On Monday I called my GP for an appointment but they told me to go to the ER instead. I spent 7 hours at the ER. They put me on IV fluids and gave me morphine for the head pain. The ER doctor told us he was afraid it could be a breast cancer recurrence in my brain, and he didn't want me to leave til I had a brain MRI. He also went on to say that if it was brain mets, they would check me into the hospital that night. Miles and I spent the next few hours waiting and thinking there was a good chance I now had Stage IV cancer... that was a lot of fun. But I finally got the MRI and it was normal!!!!!! The ER sent me home with a prescription for Percocet and that was that.
It's 4:40 am and I'm up because I had a caffeine-induced panic attack and couldn't sleep. I took Excedrin+caffeine twice today for a migraine, and didn't consider beforehand that I'm 15 pounds lighter and haven't drank caffeine in months. It obliterated my migraine pain, but made me terribly dizzy and made me freak out.
I've had a difficult many weeks. My abdominal pain started on June 9. It's July 15 and I've had no relief. I've seen my oncologist twice, two GPs, a gastroenterologist, an acupuncturist, and a naturopath. I've done all kinds of tests: blood test, urine test, abdominal ultrasound, an endo/colonoscopy, and right now I'm finishing up poo samples so they can test for parasites. It's been suggested that the pain is anything from gastritis to excess bile to gallbladder disease to post-chemo damage to hypersensitivity reaction. Every doctor has their own opinion, and every doctor says something different. Through trial and error, I've finally found some relatively nutritious things that my stomach can hack, and I limit myself to those things. I'm gonna start some vitamins and supplements suggested by the naturopath to help build up my digestive system. Crossing my fingers...
The last few weeks were full of disappointment with doctors and feelings of being neglected. It culminated this week in a cancer scare...
I've wanted to switch oncologists for a while, especially being post-treatment and now depending on follow-up care for the rest of my life. My current oncologist gives me no guidance at all. For example, when he referred me to a GI doctor for my abdominal pain, he literally said "I'm happy to wash my hands of this..." [insert hand-wiping motion here].
I recently got copies of my records from his office. I saw a letter in my file from my 2nd opinion oncologist to my 2nd opinion surgeon. In the letter from 7 months ago she wrote: "Of note, the bilateral MRI of October 2, 2008, showed a right sided lesion of 1.3 x 2 x 1.8 cm ... an MRI suggesting an unclear abnormality on the right side which will require further follow up ... The right breast should be followed by MRI and mammogram in 3 to 6 months by her local physician."
What!!!! No one ever mentioned something abnormal on my right side, and I haven't had any follow-up!
The puzzling thing was she mentioned my October 2nd MRI ... yet, my MRI was on October 16th. I immediately hoped she'd made an error, but it seemed weird that she mentioned the abnormality multiple times in the letter.
I contacted my onc who didn't even know I'd had an MRI. My surgeon was supposed to have forwarded my whole file. So I contacted my surgeon, and though he told me early on that he reviewed my MRI images with his radiology department, my file didn't have any report or printouts confirming the right side was clean. He was also supposed to have received the original MRI report, but never followed up. So my onc called the hospital and they couldn't find my MRI in their system! Aaauugggh!!
To make a long story short... both my surgeon and onc finally got my original MRI report and confirmed my right side was clean. The 1.3 x 2 x 1.8 cm lesion the dumb other onc mentioned in the letter was the size of my left cancer. She must have been high when she dictated the letter talking all about my left side cancer and the right side abnormality.
Thank goodness I was on the side of her error that didn't affect my treatment. But it makes me wonder what other mistakes she's made that may have caused someone real grief, rather than just this awesome stress-induced migraine.
Monday I finally saw a Gastroenterologist. My abdominal pain stumped him, and he scheduled me quickly for an endoscopy/colonoscopy on Thursday. I took this stuff called Osmoprep the evening before to prep for the colonoscopy. I took 20 pills with 5 glasses of water in one hour, and then waited for the onslaught. I pooped 15 times that night!!! The next morning I took the remaining 12 pills with 3 glasses of water and the festivities continued.
On Thursday, I arrived at the Endoscopy Center and they prepped me with my IV. The doc sprayed some kind of anaesthetic in my throat and told me to swallow. It was the grossest-tasting liquid ever, and it instantly made my throat numb. It felt so weird, and I thought I couldn't breathe because I couldn't feel my throat. But two breaths later, I was already falling asleep from the sedation. I guess I woke up an hour later, but I don't remember anything -- not the doctor talking to me and Miles, not getting dressed, not leaving the Center, not stopping at Walgreen's, not telling Miles if the doc asked if I was mad at him for the Osmoprep. LOL. When I got home I passed out for four hours, and woke up with a sore throat. I discovered the doc had given us color printout pictures of my stomach and colon, that was pretty cool. Looks like I have erosive gastritis (inflammation of the stomach), possibly caused by bile reflux. He gave me some pills to take. I'm so thankful he didn't see anything worse, yet at the same time I'm thankful that he saw something so maybe I can finally get some relief...
Treatment is done (yay!) and I've been off work for 2 weeks (yay!). But alas, I haven't started relaxing yet. :( For 18 days straight now, every time I eat solid food I have severe abdominal pain for hours. My diet has been reduced to the following items that don't hurt me: soup, fruit smoothies, yogurt, raisin bran and milk, and plain rice. Consequently, I've lost 10 pounds. Though I've been wanting to lose a little weight, I'm not happy it happened this way with the forced diet.
My oncologist tested my blood and I had an abdominal ultrasound, and everything came back normal (whew!). He put me on Prilosec and said it could take 7 days to work, and then pretty much washed his hands of it. 7 days of torture later I saw my GP. She was very kind and understanding, but couldn't really help me and referred me to see a Gastroenterologist. Then came the sucky part where I called a bunch of docs and no one could see me sooner than 2-5 weeks from now. I cried in the middle of the night because I was in pain for the umpteenth time and was so frustrated that no one was taking it seriously enough to want to help me NOW. Luckily, this morning one of the docs called back and squeezed me in for Monday afternoon. I'm so ready to be fixed. I haven't been able to live my normal life! Other than short walks, I haven't left the house for fear of being away from my heating pad and bed if the pain starts. I haven't been able to enjoy a nice outdoor weekday lunch. And though this time off work is for "recovery," I certainly don't feel like that has started yet.
Ok, I'll stop complaining now.
Despite the downer pain... not having to think about work has been amazing. Miles and I have been going on short walks to help with my energy. Our favorite thing is to walk to get a Jamber and drink it in Duboce Dog Park watching all the dudes! Yesterday I saw the most beautiful youngish golden with the silkiest flowy hair. No bulldog, basset or G-Dane sightings yet though. I am hopeful...
Happy birthday to me, happy last day of treatment, and happy 6 weeks off work to recover!!!!
My hair and eyebrows are on the mend!
I only have 8 rads left and then treatment is done. This is a good thing. There are some downsides though. I'm worried that when I'm done, work has this expectation that I'm ready to TCB. But in fact, for the 8 months of treatment I've had I'll probably need 8 months to really recover. I'm so tired all the time and achey everywhere and always in some kind of pain or distress. Also, without treatment to distract me, now comes the time to deal with everything on a mental and emotional level. I have felt really wrecked lately. I'm scared to death that I'll recur with mets and life will be cut short. Some days I don't acknowledge that fear, but it doesn't mean it's not there. I guess it's gonna take some time. But how can one not worry when the doc says your aggressive cancer is likely to recur in the first 5 years if it's gonna happen, or when the doc says to wait at least 2 years to have kids in case you do recur? I sure am looking forward to that carefree feeling again someday...
In good news, my eyebrows are growing back. It was not a big deal without them because I'm not particularly vain... but man, seeing them again makes me realize how weird I looked and I'm happy to have them back.
I started radiation treatment last week. Today was 7 of 19 treatments. I go in five days a week for a month. It sounds like a lot to get up and go everyday, but it's really not that bad. It's weird to think about getting that much radiation to my body, even if it's just localized to one area... but I've mostly gotten past the weirdness.
So I go in and lay in a mold created for my upper torso. These green laser lights shine on my body like crosshairs, and the techs push and pull me to line the machine up with the two tiny tattoos on my chest. When it's perfect, they leave the room and talk to me through speakers. A screen in front of me shows my breathing patterns in the form of a wave, and when they tell me to I take a deep breath and hold it between two lines on the screen. That's when the magic happens, and it lasts 10-20 seconds each time. I get one zap from the right and two from the left. It's totally painless, but I'll get some skin irritation soon, like a super intense sunburn.
The first couple days of radiation really bummed me out just like the start of chemo did. Being in a new place getting normally toxic stuff done to my body that I don't totally understand, ugh. Looking around and seeing that I'm surrounded by people over twice my age, ugh. It feels like the other patients look at me like I'm out of place ... but maybe I'm just projecting? I feel I've mostly upbeat so far, with only a few "bad days" throughout this ordeal. I tend to feel like I'm selfish by feeling sorry for myself and wondering "Why me?" I try to remind myself that I have so many things to be grateful for. But sometimes it's really really hard to stay positive. I think I'm allowed those days. But still it kind of makes me feel bad in a different way like I'm being really ungrateful for the great things I do have. So maybe what I'm trying to say is ... maybe I haven't been honest with myself about how hard this has been to come to terms with??
I miss Cat Party terribly...
I'm finally done with chemo!!!!! My last treatment was on April 23. Here I am celebrating the last 15 minutes of my last infusion:
After my last chemo I still felt pretty awful for a week, had my weekly migraine, etc. Miles and I managed to get away for a one-night mini-celebration in the woods. We had an awesome time! We drank rootbeer and orange soda floats in the jacuzzi bathtub, with a fire going. We ate steaks at the Buckeye, where our waitress asked us "gentleman" if we were ready to order, LOL. We took lots of PHOTOS for our polaroid memoirs album. We enjoyed lots of rejuvenating fresh air, sunshine, and trees. This is one of my favorite photos from the mini-trip, and this might now be my favorite spot in the Bay Area now:
So wowow, I am finally done with chemotherapy! Four and a half months! What a great feeling! My gross, ouchy rash is still hanging on, but getting slowly better. All of my fingernails are still red and purple and yellow, but they'll eventually get better. My head still looks like either a baby elephant, really old man, or Linus, but I'll have hair again soon. My energy level is still at 50%, but I'm hoping someday I'll be 100% again. Chemo was hard, but I'm happy I did it.
I now only have 1/3 left of my treatment plan. The last step is radiation, which starts in two weeks. I'll go in Monday thru Friday for four weeks, for a daily zap of radiation to my left breast. I've already done my planning appointment. They made a mold of my body so that I stay perfectly still each time. They also tattooed two tiny dots on my breast so they know precisely where to point the x-rays. My radiation oncologist is pretty great, we like him very much. I was nervous about radiation and was worried about long-term effects of that much radiation to my body... and he really sat down with us, took his time, and made us feel very comfortable with everything.
My parents were just here for three days, and it was great! I wish we weren't so far away from each other. Though three days went by quickly, we made the best of it. We adventured in Marin and Sonoma, and drove a backroad through redwoods and fog where we were the only people on earth. We had a three-way celebration at Outback in honor of end of chemo, my Dad's birthday, and Mother's Day. I forgive Outback for not having potato soup. We played lots of Liverpool Rummy. I love my parents so much, I'm so thankful to have such amazing and kind and loving parents!So my treatment will be finally finished mid-June just in time for my 29th birthday. Then what? Then things go back to "normal"? To some extent, I suppose. I'm scared of a few particular things happening post-treatment. First, I'm nervous that since I won't be seeing doctors every week, I'll be constantly worried about the cancer coming back. I feel like I might worry incessantly about every little bump or pain or ache in my body. To overcome this, I feel like I need to become more in tune with my body to learn what warrants worry and what doesn't. But, in absence of any bumps, pains or aches, I'm nervous that I'll still worry myself sick with the "what if"s of a future recurrence or metastasis. To overcome that, I'll just need to try to be more mindful of the present, rather than worry about the future. I don't think that's impossible, just difficult. The last big thing I'm worried about is I'm afraid of settling back into pre-cancer "normal" life. I honestly don't want that back. Well, one thing I've lost is my feeling of carefree-ness. I would like to have that back, and I think the way to do it is through mindfulness. But that's not what I'm talking about. Cancer has changed me a lot. It's made me better at prioritizing life and the things in it. It's helped me not sweat the small stuff and has helped me to de-stress my life a lot ... stuff like traffic, petty work issues, inconsiderate people, paying for expensive haircuts, silly disagreements or arguments with Miles ... it's easy to avoid getting wrapped up in those things now and focus on more important stuff. I also see that work doesn't have to be "just work," and I'm interested in finding something I'm passionate about, and making it happen. Cancer has affected me positively in that I see life with clear eyes, and I'm grateful for that. I'm worried that after active treatment, it could be easy to slip back into old ways and feelings, and I don't want that.
