Aurelia dropped off at sitter? Check. Lena dropped off at school? Check. Make it to my chemo appointment in time? Check. Blood drawn? Check. Proceed with chemo? No.
My white blood cell count was too low to proceed and they can’t risk it because if I got sick, I wouldn’t be able to fight an infection. My WBC needed to be 1200 and I am only at 800. My oncologist in Seattle doesn’t want me to have the Neulasta shot which would boost my cell count up, instead he wants me to wait a week and let my body do it on its own. He did allow me to have a shot of Neupogen which will work with my body to create new white blood cells. I took one dose today and will take another tomorrow. The nurse had Addison give it to me and he will do it tomorrow too. Addison doesn’t like needles and I don’t like the idea of getting a shot from someone who doesn’t regularly administer shots, but he actually did quite well.
To top things off, my port-a-cath is infected so next week they are going to remove it and put another one in. This will be my 5th surgical procedure since November. My infected port-a-cath has me worried most of all, the idea of having an infection from a surgery does not sit well with me. Especially since my WBC count is so low I can’t fight off an infection at this time.
My chemo being thrown off a week has fouled lots of things up. I was supposed to get my next round on the 12th here in Juneau and then we were headed out to Arizona. On the way back through I was going to stop in Seattle and get my fourth dose there. Now, I am behind a week which means I need to set up to receive chemo in Arizona, cancel my hotel and flight reservations for Seattle, and make new arrangements to go back to Seattle a week after I return from Arizona. It’s kind of a headache because everyone wants doctor notes and some have cancellation penalty fees. It’s just a bunch of extra steps I don’t feel like dealing with.
Also, I called my oncologist today because I got tired of waiting for the letter that has yet to arrive. I wanted to confirm that the tumor board suggested radiology and what that meant. I was told at one time that if I had to undergo radiology, that my chemo would be shortened from 6 months to 3 months. However, after talking with my oncologist, such is not the case. I still have to do the full 6 months and then I will do the radiation after all is said and done. Not the news I wanted to hear….sigh.
The one thing I am learning with this disease is that you can’t plan very well in advance. Not only do you not have a choice in whether or not you get it, you don’t have a choice on when you get to fight it, how long you have to fight it, or if your body is even strong enough to take the drugs to fight it. Flexibility is key and I’m slowly learning to just go with the flow. And now, I have to allow Addison to squeeze my belly fat and give me a shot in the stomach- now that is flexibility!
Friday, January 29, 2010
Thursday, January 28, 2010
We Didn’t Start the Fire (Okay, so maybe I did.)
I have chemo tomorrow. It will be my first round in Juneau and I’m a little nervous. I’ve been preparing for it the past few days. When I get nervous, I clean and I cook. As Addison would say, I have a case of the Monica’s. (Monica was the super clean neat freak on the sitcom Friends.) I did all the laundry, cleaned the house from top to bottom, crossed most everything off my “To Do” list (including the Christmas thank you letters that I’ve been procrastinating for over a month) and I made one of my favorite dinners tonight, My great Aunt Frankie’s Tortellini Soup, and I even tackled garlic knots inspired by my friend Ali whom I chatted with earlier today.
Tackling the dinner was kind of over the edge as Lena didn’t take a nap today and instead chose to watch Annie while singing all the songs at the top of her lungs while simultaneously bouncing on the couch like one of the orphans. This soon prompted poor Aurelia to start to scream in frustration. While the chaos was reaching a peak, I carelessly placed the paper towel roll too close to the burner hence starting a fire. The fire then spread into the pot where there was grease and yes, it got ugly. This was my first kitchen fire and I managed to get it out very quickly without destroying dinner or my kitchen, but I did manage to singe my hair in the process (good thing I’m going to lose it anyway.) The commotion in the kitchen stopped Lena in a rousing rendition of “Tomorrow” and led her to gasp, “What happened mommy?” I told her I had a small fire, but it’s okay now because it’s out. Her response was classic, “It happens.” Then she went back to singing “Tomorrow.”
After the fire, I started working on the garlic knots. I thought of Ali and the conversation I had with her earlier in the day. Ali and I met in graduate school in DC back in 2000. She was my first friend in DC and I made a point of making friends with her quickly because she was the only girl in my orientation class besides me wearing jeans, a fleece jacket and no makeup. Some things are just meant to be. Ali and her mom introduced me to garlic knots when I went home with her to New Jersey one weekend. They are served at most pizzerias in NJ and they are quite tasty. Ali told me that a pizza place isn’t a pizza place without them. I remember that weekend well as it was the first and last time I met her mom as she died of lung cancer a few months later (she was never a smoker.) Ali had lost her dad a few years earlier so when her mom passed, it left only her and her sister. Ali remained strong throughout her mom’s illness and even after her death. She kept her strong sense of wit and even managed to study for and take her comprehensive graduate exams. I was so impressed that she was able to just keep moving forward. I can’t even imagine being that strong. I probably would have dropped out of grad school if I had gone through what she had.
Today Ali told me I was her hero and I had to laugh that it came out of her mouth. I haven’t done anything that is hero worthy when compared to someone like Ali. When I need to be strong, I channel my strength from my friends and family. I think of Ali and how she lost both her parents before she was 30. I think of my Aunt Pat who is on her third round of chemo fighting ovarian cancer. I think of my brother who has overcome addictions. I think of Addison’s mom who is a breast cancer survivor. I think of my friend Brock who in his early 30s started having serious heart problems, but now he is an avid marathon runner. I think of Aurelia who at three weeks old fought for her life to shake a virus. The list could go on. There are so many people in my life who demonstrate enormous amounts of strength and courage, and I feel fortunate to have them as models. If I can have a tenth of the strength and courage of what my family and friends posses, I’ll be fine. I draw my strength from them. I’ll be fine- even if I do set my dinner on fire every now and then.
Tackling the dinner was kind of over the edge as Lena didn’t take a nap today and instead chose to watch Annie while singing all the songs at the top of her lungs while simultaneously bouncing on the couch like one of the orphans. This soon prompted poor Aurelia to start to scream in frustration. While the chaos was reaching a peak, I carelessly placed the paper towel roll too close to the burner hence starting a fire. The fire then spread into the pot where there was grease and yes, it got ugly. This was my first kitchen fire and I managed to get it out very quickly without destroying dinner or my kitchen, but I did manage to singe my hair in the process (good thing I’m going to lose it anyway.) The commotion in the kitchen stopped Lena in a rousing rendition of “Tomorrow” and led her to gasp, “What happened mommy?” I told her I had a small fire, but it’s okay now because it’s out. Her response was classic, “It happens.” Then she went back to singing “Tomorrow.”
After the fire, I started working on the garlic knots. I thought of Ali and the conversation I had with her earlier in the day. Ali and I met in graduate school in DC back in 2000. She was my first friend in DC and I made a point of making friends with her quickly because she was the only girl in my orientation class besides me wearing jeans, a fleece jacket and no makeup. Some things are just meant to be. Ali and her mom introduced me to garlic knots when I went home with her to New Jersey one weekend. They are served at most pizzerias in NJ and they are quite tasty. Ali told me that a pizza place isn’t a pizza place without them. I remember that weekend well as it was the first and last time I met her mom as she died of lung cancer a few months later (she was never a smoker.) Ali had lost her dad a few years earlier so when her mom passed, it left only her and her sister. Ali remained strong throughout her mom’s illness and even after her death. She kept her strong sense of wit and even managed to study for and take her comprehensive graduate exams. I was so impressed that she was able to just keep moving forward. I can’t even imagine being that strong. I probably would have dropped out of grad school if I had gone through what she had.
Today Ali told me I was her hero and I had to laugh that it came out of her mouth. I haven’t done anything that is hero worthy when compared to someone like Ali. When I need to be strong, I channel my strength from my friends and family. I think of Ali and how she lost both her parents before she was 30. I think of my Aunt Pat who is on her third round of chemo fighting ovarian cancer. I think of my brother who has overcome addictions. I think of Addison’s mom who is a breast cancer survivor. I think of my friend Brock who in his early 30s started having serious heart problems, but now he is an avid marathon runner. I think of Aurelia who at three weeks old fought for her life to shake a virus. The list could go on. There are so many people in my life who demonstrate enormous amounts of strength and courage, and I feel fortunate to have them as models. If I can have a tenth of the strength and courage of what my family and friends posses, I’ll be fine. I draw my strength from them. I’ll be fine- even if I do set my dinner on fire every now and then.
Who Needs Sleep?
It’s shortly before 3 am and I can’t sleep. Aurelia needed a bottle at 2:00 so Addi made it and I fed it to her. While feeding her, I was a zombie, hardly able to keep my eyes open, but as soon as she finished and fell asleep, PING! I am wide awake. Insomnia has been creeping in the past few weeks. It’s a combination of the steroids I’m on as well as a gene I inherited from my father- restlessness. Dad always has said if he could be granted one wish it would be to be as tired at night as he feels in the morning. I full heartedly agree.
I tend to let my mind wander and get off track. Right now I’m thinking about my nephew in Iraq, the orphans in Haiti, my friend Cristina and if she’ll find the right shoes to match her wedding dress. Should I wear a wig to her wedding in July or a scarf? Will I catch the cold that Lena and Addison are battling? When will the letter come from my oncologist? He mailed it on Friday from Seattle; shouldn’t it be here by now? I wish we could adopt an orphan from Haiti. Is the infusion therapist going to call me to set up my chemo on Friday or should I just call her? Will my port-a-cath ever heal? Is Lena going to ask for chocolate pudding for breakfast and when I refuse is she going to have a meltdown?
I mean seriously. Let it go Frances.
I try to meditate and just breathe, but things keep popping into my head. The “To Do” list is making its way into my thoughts now, there’s no turning back when the “To Do” list comes in.
Maybe it’s time to watch some Wings episodes. It’s my sick little obsession. Have you seen Wings? It’s a sitcom that was on in the 90s about a little airport on Nantucket. I used to fall asleep watching it when I was in high school on nights when my “To Do” lists and worries kept me awake. Addison can’t stand it (although he laughs harder than I do when it’s on) but I’ve had an ongoing relationship with the Hacket Brothers, Helen, Lowell, Roy, Fay and Antonio for nearly 20 years now. Addison has his WWII documentaries and I have Wings. I broke down and bought all seven seasons last year. There’s something about it that makes me completely forget everything and I can usually fall asleep before I finish one episode.
Chillcat the kitten is up and tearing through the house. He just did a sneak attack on a very sleeping Lena which didn’t go so well. Perhaps I should introduce him to Wings.
I tend to let my mind wander and get off track. Right now I’m thinking about my nephew in Iraq, the orphans in Haiti, my friend Cristina and if she’ll find the right shoes to match her wedding dress. Should I wear a wig to her wedding in July or a scarf? Will I catch the cold that Lena and Addison are battling? When will the letter come from my oncologist? He mailed it on Friday from Seattle; shouldn’t it be here by now? I wish we could adopt an orphan from Haiti. Is the infusion therapist going to call me to set up my chemo on Friday or should I just call her? Will my port-a-cath ever heal? Is Lena going to ask for chocolate pudding for breakfast and when I refuse is she going to have a meltdown?
I mean seriously. Let it go Frances.
I try to meditate and just breathe, but things keep popping into my head. The “To Do” list is making its way into my thoughts now, there’s no turning back when the “To Do” list comes in.
Maybe it’s time to watch some Wings episodes. It’s my sick little obsession. Have you seen Wings? It’s a sitcom that was on in the 90s about a little airport on Nantucket. I used to fall asleep watching it when I was in high school on nights when my “To Do” lists and worries kept me awake. Addison can’t stand it (although he laughs harder than I do when it’s on) but I’ve had an ongoing relationship with the Hacket Brothers, Helen, Lowell, Roy, Fay and Antonio for nearly 20 years now. Addison has his WWII documentaries and I have Wings. I broke down and bought all seven seasons last year. There’s something about it that makes me completely forget everything and I can usually fall asleep before I finish one episode.
Chillcat the kitten is up and tearing through the house. He just did a sneak attack on a very sleeping Lena which didn’t go so well. Perhaps I should introduce him to Wings.
Tuesday, January 26, 2010
Six months is really just a half of a year...
A little over two weeks ago I was told I had Hodgkin's Lymphoma. When I was told I had cancer, the doctor could have just as well said I was actually a Martian and would soon be sprouting antennas out of head. Basically, the notion was absolutely ridiculous, inside I was laughing hard at the absurdity of all that has happened in the last three months. Three months ago I had a baby. Two months ago that baby got really sick and gave me enough medical related stress to last a lifetime. In the past two months, I had two D&C’s to help with post delivery problems due to placenta accreta. And lastly, I was recently told I shouldn’t have more children due to the risks involved. Of course I have cancer, because life isn’t complicated enough at the moment. The phrase, “kick me when I’m down” has been floating through my head lately.
Ever since I was told, I’ve been in a bit of a fog, almost in denial. Outwardly, I’ve tried to be very positive and cheerful. Truth of the matter is, I’m not really sure how to react. Many emotions have gone through my head in the past two weeks: sad, grateful, pissed off, lucky, numb, thankful, and accepting. The fact of the matter is this is a very curable disease and I will make it through it- I don’t have a choice. I actually feel quite lucky. As my oncologist said, “If you’re going to get cancer, this is the one to get.” I also feel very fortunate my doctor noticed the lump on my neck while sitting across from me during my 6 week post delivery checkup. (Dr. Sharon Fisher, you are amazing!) But nonetheless, the past few weeks have been a roller coast of emotions of thoughts and scenarios. The hardest part for me has been weaning Aurelia at only three months. Because of the chemotherapy, I have no choice. For some this may be hard to understand why I’m making a big deal of it, but given the fact that she was so sick and that she is my last “baby”, it was and continues to be the hardest part for me about acquiring this disease.
I feel so very fortunate to have family and friends who are so incredibly supportive. My friend Cristina was there for me in Seattle when I found out I had cancer and continues to be a tremendous support system. My sister Trish drove up to Seattle for the day just to be with me after the news broke. My friends Anne and Jeremy put me up in their house for a few days. My mom flew up to Seattle and Juneau leaving my dad and new house in Arizona behind to get me through my first session of chemo. Addison and the girls continue to brighten my days with smile, hugs and love. Susan, Wendy, Doug and Kris for being my Lena support crew. My friend Steve in Haines started a Facebook fan page for me complete now with over 250 fans. I’ve always been a “fan” of Steve’s for his amazing swim from Skagway to Juneau to protest the road, and now feel like an absolute rock star as a result of the support system he set up for me. He even shaved his head! My friend Chuck shaved his head too, and lots of my friends are dying purple and green (lymphoma support colors) streaks in their hair to show support. My friend Hannah (who is in elementary school) dyed her light blonde hair with green streaks. When she got up to explain to the class why she did it, she told them, “When you love your friends and they are sick you do fun things to support then so they know you love them.” From the cards, flowers, e-mails, shaved and dyed hair, phone calls, meals on wheels, and special boxes of hats and goodies, I am feeling the love and support everyone. I am truly feeling the love.
My treatment will be chemotherapy, every two weeks for a total of six months. I will do most my treatments here in Juneau, but every third will be in Seattle. I was also informed today that I will indeed need radiation. This came as quite a blow to me and Addison. At first this was something my doctors thought I could avoid, but when a “bulky mass” (aka a swollen lymph node) is larger than 10 cm radiation is administered. I have one that is 9.7 cm. I like to think of my 15 swollen nodes as pieces of citrus fruit. They range from the size of a lime to a grapefruit. The medical board met and decided that they really want me to kick this (which is good that they are on my side) and determined the best approach is to give me the radiation. I don’t like this idea at all. Radiation can lead to lung cancer, heart disease and many other nasty things I’d like to avoid. But, I have been told I am not going to have to do as intense of radiation and they will only have me do it for a few days as opposed to several weeks. I want to beat this, and I’m going to do everything it takes (even radiation) to overcome it.
My next round of chemo is this coming Friday here in Juneau. I handled the first round okay and mostly had side effects from the drugs they gave me to prevent me from getting sick. I hope it continues to not treat me too badly. After my first treatment, I lopped off all my hair and put purple streaks in it. I have always wanted purple hair and I felt since I was going to lose it; I might as well do something fun. I was lucky enough to have enough hair that I was able to meet the requirement to donate it to
I am going to try to blog as much as possible about this experience. Why the name “I’m Just Here for the Piroshkies?” As most of you know, I’m a bona fide foodie. The name is about my favorite Russian Bakery in Seattle:
Piroshky, Piroshky. I’ve always said I’d go to Seattle just to get a Vatrushka or Vladimir roll from them as they are simply the best. Since I’ll be traveling to Seattle quite a bit for treatments, I’m looking at it as a chance to eat as many Vatrushka rolls as possible (although I’ve been warned about eating my favorite foods while on chemo.) Addi also supported the name because he said if I got bored of talking about my cancer, I could talk about food. He’s got a good point! The next six months are not going to be fun, but I am just going to look at each treatment as a hurdle I have to overcome. I’m also looking at it as a chance to learn to be more appreciative of my family and friends and life in general. I’ve been on auto pilot for awhile now, not really stopping to take time for things. I’m also going to try my best to keep my chin up and save my tears for tears of joy when I’m told I am cancer free in six months or when I cross the finish line of my first marathon which I plan on running in the summer of 2011. (It’s in print now Brock- you can hold me to it.)
Keep tuning in folks, I'll be here. XXOO Franny
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