Today seemed like a day from a past era. Faithfully avoided shopping anywhere. Also, continued the mood from yesterday: slow, blissfully avoiding you know what, reading about all things else. Writing some letters. Still looking for some good pink fountain pen ink.
If you haven’t seen Top Gear, you ought to treat yourself. If you’re into cars, you’ll love it. Even if you’re not, however, you may still enjoy it if you appreciate British humor.
I am thinking only of all those wonderful parts of my life and all that give me reasons for being thankful. Family is my number one thought today, and here’s today’s favorite video: family, having fun together, a little dance . . .
My dad, my two sisters and their families, and my niece/goddaughter are celebrating at my sister’s place in Michigan, who will be hosting a fabulously wonderful dinner. All across the miles here in Long Beach, California, I can feel the love and smell the aromas. I miss them and wish we were together, but Marvin and I will be thinking of them throughout the day and knowing we’re all still together in heart and soul. And, always, my mom, who danced into the light in 1997, is here in my heart; she’s the one who taught my sisters and me how to celebrate Thanksgiving . Thank you, Mom.
And, here are the lyrics so you can sing along, courtesy of http://www.lyricsreg.com
Lift up your hearts with a smile
lift up your feet with a dance
lift up your spirits with a song
its family time its family time its family time
hi how you doing
hi how you been
its really good to know we still got this thing
when we get together its so much fun
everyone’s happy no ones gotta run
lift up your hearts with a smile
lift up your feet with a dance
lift up your spirits with a song
its family time its family time its family time
now the world gets busy but its not hard to see
family means the most to me
i’m so happy we found this time
we can all share whats on our minds
lift up your hearts with a smile
lift up your feet with a dance
lift up your spirits with a song
its family time its family time its family time
now we get together that’s how we get along
now we get to work to sing a peace song
everyone can see we all are family
everyone can see its time to be free
lift up your hearts with a smile
lift up your feet with a dance
lift up your spirits with a song
its family time its family time its family time
yeah….yeah….yeah
This was an extra long day, and somehow, despite, the way I have been feeling, I think I fared pretty well. I woke up feeling quite sick, again, but got ready to go to the office. I had chemo scheduled at 3:00 pm, so I worked until then, and one of my coworkers drove me across to Chao.
Buster was with me for the first time at chemo and was very good. After checking in with Michele and Gema, I went to my assigned room 6. Chantal was my nurse today, and she immediately came by to get things started, while Buster stayed put on the side of the bed away from all the activity. Jessica popped in to take my vitals (blood pressure still high though lower than the crisis readings), and Chantal started the saline and gave me my dose of Zofran® and Benadryl® and soon thereafter my saline drip, Decadron® and Zantac®–I guess I’ve forgotten to list Zantac here previously. Anyway, another chemo nurse (I haven’t seen her before) came to do the verification with Chantal for my Taxol® 126 mg. All went well and quickly, finishing in about three hours.
Marvin had to work late, so I ended up staying in the room as long as the infusion center was open. I dozed on and off, and finally around 8:00 pm headed downstairs to sit in the waiting room until Marvin came to pick me up after 9:00 pm. I played with Buster in the empty waiting area, tossing treats and giving him commands until I was worn out. Then, we both relaxed, a rather simple feat for me with all of the lingering prep drugs for the chemo. I should sleep well tonight, dreaming about watching the Macy’s Thanksgiving Parade and eating well.
Yuck. My side effects are all engaged so that I was sick again all day and ended up sleeping. I’m fighting it with ginger ale and my watered-down cranberry juice as well as eating little bits here and there to avert the gross metallic taste that haunts my mouth.
Have you seen this video tribute to breast cancer awareness?
Kudos to Providence St. Vincent Medical Center, Portland, Oregon, where the staff donned pink gloves from Medline and put their moves to Jay Sean’s Down.
Spent some time writing cards and letters and going out for coffee with a friend–trying to take my mind off of the negative thoughts that keep tugging at me. Just enjoying today’s conversation made me breathless. After the hour and a half I came home and napped.
I see women on the discussion boards that I visit who are struggling and hurting and are more frightened than anyone could imagine, and I visualize this monster terrorizing us. Looking at yourself in the mirror–the swollen, red face from steroids, the bald head, the lashless, browless cue ball of a face staring back at you–you wonder what happened to that other woman who used to live here. That’s the most visible, so it’s the biggest reminder of the changes violating your sacred body. You have numbness in so many places you wonder that maybe you have fewer places that feel than are numb. I can barely get shoes or sandals on my feet right now because they are so puffy from the drugs I’m taking to lower the blood pressure that increased from the Avastin® that I can’t take any longer to fight this stupid cancer. I hate it that I can’t take that drug any longer because my body stopped tolerating it. I hate it that so many young women are dealing with this disease that terrorizes them and destroys so many lives.
I hate it that the holidays are here, and I can barely raise my exhausted body off the sofa to walk to another room let alone cook or help my husband with the myriad chores that he is working on every free minute of the weekend. Everyone is shopping, baking, cooking, decorating and getting ready for Thanksgiving. Me? I feel useless, guilty that I’m not running around contributing to the festivities.
But, I need to fight the negativity. I cannot let it get the better part of me. I cannot let that happen. Maybe I can’t make a whole meal, but, hey, maybe I’ll mix up some muffins
The common theme here: fatigue. Relentless, pervasive, unending fatigue. Despite my extensive experience with this topic, I am still shocked at the degree to which this feature of cancer invades my life. That’s right. It invades. It permeates every part of my life.
I have moments when I want to hate all of this, but I know I need to avoid that kind of thinking. It’s just unhealthy.
Instead, I tried to enjoy my favorite sedentary pastimes: reading, online researching and writing. In between, Marvin and I watched some TV with Buster. Yup, Buster seemed to be watching the show about dogs on Animal Planet. We haven’t seen him do that before, so that was pretty cute. Add to that some sleep time, and that’s my Saturday. I am practicing the art of R&R, and I would rate myself a decent grade for performance today. No cooking today; just ordered spinach, artichoke pizza for me, the works for Marvin and, for both of us, Mrs. Prindable’s granny smith caramel apples with sprinkles, which my dear sister sent us for the holidays. They are OMG good.
Relaxing during the times that require it is something that still comes with difficulty, but I know I need to do it and to avoid fretting over it. I’m getting better, as today would certainly prove, and I’ll continue working on it till I perfect it.
Changing chemo gears. Dr. Mehta, my oncologist, has discontinued my Avastin® since it has increasingly elevated my blood pressure, causing my shortness of breath and dizziness, and raised my urine protein to 600 per tests during my recent hospital day.
I started the day with my PCP as a follow-up to Tuesday’s appointment with her. Today she added more diuretic since my feet have inflated like balloons from one of the two beta blockers. Both start with A–LOL that’s as good as my memory is. Sheesh, I can’t keep up with all of the medication info. Thank goodness I have an iPhone application into which I input all of my medications and their dosages and other pertinent information. I mentioned that I’ve been so totally tired and wondered about it. She explained that this kind of fatigue occurs with changes in blood pressure because the body needs to adjust.
Following that we headed over to the infusion center at Chao right around the corner but seeming miles in the chilly 50-degrees and I have to stop frequently to rest. After Gema signed me in and sent me down for blood tests with Scott today since Karen was out, I settled in to wait for my room assignment. Toni stopped by while I was waiting to let me know Dr. Mehta’s plans for me. She reset the schedule with today being the first of the three in this cycle (this change also affects my planned long-term chemo break in January) and wants to see me soon. She wants tumor markers read (C15-3), so we added that to the schedule of my chemo nurse Jennifer’s tasks for today. I passed along my PCP’s note about the suspicious lymph node in my lung. Marvin returned from his traditional trip with our favorite breakfast burritos and his surprise scarf for me–photo on the way –today a crinkly, cozy pashmina with autumn’s orange, red and dark brown.
Alas, again, I get my room assignment, my favorite room #1; Dolly, the volunteer for the infusion center escorts us, and Marvin helps me settle in. Jessica takes my vitals, and Jennifer sets sets up my saline and pre-chemo meds: Zofran® and Benadryl®, then the Decadron® drip. Soon, one of the other chemo nurses comes in with Jennifer to verify my chemo for the day Taxol® 126 mg, and I settle down with Yilin, an intern from the social workers group; she’s been assigned to me and has some more questions. While we’re having a delightful chat, one of my coworkers popped in for a brief friendly visit. The time went by splendidly fast.
When we left, I was out of it but still functional today, as opposed to previous days. We headed back home but decided to go to Border’s and hang for a while reading and enjoying coffee and snacks. It’s hard to believe holiday trimmings are popping up everywhere.
Recently, I received in the mail a handwritten card from Breast Cancer Angels, to whom I was introduced by Chao’s counseling staff. Besides reaching out to patients in many ways, one thing they do every month is to send a handwritten card to each of us. Every time I receive their card, it’s an instant poof of joy.
It reminds me how much I enjoy sending and receiving snail mail. No matter how much e-mail I have, it’s still a thrill to receive a card or letter from a friend. In fact, I have never given up writing letters because it’s just something I love to do, something I’ve enjoyed since I was about ten years old and wrote weekly to my pen pals in Japan and Italy.
When I received the last card from Breast Cancer Angels, it reminded me that there may be some people within the breast cancer community who would enjoy being a pen pal or benefit from someone sending them support. Despite my research I don’t see any online services specifically dealing with this and suspect the large organizations are more intent on providing online support groups, which are fantastic in helping us all to connect easily when we need the support.
Still I wonder whether there are members of the breast cancer community who would enjoy or benefit from a pen pal relationship and wonder if there is a way to get those people in touch with each other. Maybe one of us could collect the info and then help to connect people who would like to participate. Ideas are welcome
With my days off this week I am trying to do what I need to relax, still not a fait accompli but improving. I am purposely avoiding watching too much news or getting too involved in the issues that usually gain my interest. Again, I’m guessing because of my taking so many pills, I was so sleepy I could barely keep my eyes open. I took what I expected to be an hour’s nap at most, but I surprised myself when I awoke three hours later.
I guess it wasn’t too bad to stay inside today; after all, in the words of SoCal natives, it was freezing with a high of only 67 degrees. In between sleeping and taking my blood pressure, I meditated, read the New York Times, played some games and listened to lots of music. Here are some of the places I visited.
Thinking about the times I used to go dancing at clubs, I visited YouTube to get my fix for dance music. I ended up watching and listening to compilations posted by GiorgioSST. Click on this link, and it will display the links to the other three compilations set against stunning settings (I haven’t watched all, but this one features the Greek Isles). Set your viewing on full screen and enjoy.
Firefox addons I spent some time updating Firefox, my current favorite browser. I love the addons. Also, I found Firefox personas: basically skins, and couldn’t resist trying on several before choosing one for the day. I’ll probably change tomorrow and the next day.
For combating chemo brain, I played a couple of quick games that I keep easily accessible on my Google page for breast cancer: the Memory Game, Brain Tuner and Sudoku.
ShutEye.com Another good site on sleep. Even though I’m not having trouble sleeping lately, this is a common problem for many of us from time to time.
@Pink omg nothing better than home made creamed spinach--yours sounds perfectly delish--thanks for sharing 23 hours ago
subtle moments shared / brief glances, kisses, touches / quietly loving #haiku1 day ago
After my original diagnosis in 2004 of breast cancer in the left breast, in January 2009 my doctors found my breast cancer had metastasized to my bone, specifically, to my spine. Next came major back surgery, leaving me in a TLSO brace and using a walker, followed by radiation, and then chemo. Distant metastases is a diagnosis of advanced, or metastatic, breast cancer, which is incurable. With Marvin's amazing support, dancing and writing I will continue to thrive. Click on Introducing Donna and Marvin at the top of the page to read more.
1 advanced breast cancer, metastatic breast cancer
Pelikan fountain pens, my absoute fav pen
Pelikan pens are sold at fine pen stores throughout the world. Joon is one of top distributors with an excellent Web site.
. Thank you, Mom.
