Monthly Archives: April 2013
Team Perfect Match is being hosted by Wedgewood Pizza for a fundraiser on Wednesday, May 15th. We are raising money for Be The Match Walk+Run. Participants raise critical funds throughout the year to help patients with blood cancers, like leukemia and lymphoma, take the next step toward a life-saving marrow transplant.
At this fundraising event 15% of sales will go to Team Perfect Match on behalf of the Be The Match foundation.
Does anyone want to play, “Is this Skittles stasis or blood in my coughed up phlegm”? No, I won’t really post that picture. Unless requested. I might be a little tweaked right now on my combination of rx prescribed appetite enhancing medication (yea, that) and cough syrup. I know I should eat only all healthy things but I might have gotten into Amira’s Easter candy.
I started a little cough on Tuesday. It wasn’t enough to mention until Wednesday. It didn’t require a visit to the hospital until Friday. The doctor started me on a z-pak “just for fun” and I laid low all weekend. Monday, I went to physical therapy and the grocery store with help and a driver. Monday night I was miserable. Still no fever so I waited it out. One of the hardest things about this illness, you know, other than the fact that it could kill me, is that every little regular human symptom needs attention. Stomach ache? CT scan! Headache? Narcotics! Sniffles? Brain swab! Cough? Chest X-ray and CT scan! Every time I am a little bit sick it is taken seriously because an infection in my body can go from nothing to critical in a matter of hours. They tell me this all the time. I think partly to scare me and it works. It also makes me not want to say anything until I have to. Today, Tuesday, I went back to the hospital because my cough is worse and not better. I was supposed to give a sample of sputum (lung mucous) but I have never learned to “hork” and instead was only able to give them a little cup of saliva. Turns out that I tested positive for Metapneumo Virus from my brain swab on Friday. They don’t actually swab my brain but they push the q-tip in until it stops and swirl it around (see picture). I have a narrow nasal cavity and it hurts! If something comes back on the CT scan there will be a procedure called a Bronchoscopy that will rinse my lungs with saline to pull out samples of all the bugs.
Amira had this croupy cough first and I was quarantined from her for 2 days then gradually came out of my room. I got sick anyway. Amira also coughed directly in a family friend’s face and he got it too and required a trip to the doctor. The big killer of patients post transplant are GVHD and infections. Short of moving into a hotel by myself for the next few months I don’t know what else I can do to prevent illness. My kids are needy. Maybe more so now than they were before. They need supervision and attention. When I get too tired and stop watching Amira does things like use her brother’s dirty sock that he left on the bathroom floor to wipe her mouth after brushing her teeth. Yes, this happened. The kids are a germfest. They are trained to wash their hands immediately when coming home but then I’ll see one of them with their fingers in their mouths. I would like to have two straight weeks where I do not have to go to the hospital at all. That hasn’t happened in close to a year. I need to stop getting sick.
Today is day 98 post transplant. My last bone marrow biopsy showed no signs of leukemia. My ALL is gone. My blood numbers are within the normal range. I’m still weak and shaky but my muscles are slowly coming back. My setbacks have all been infections because I’m still on my anti-rejection medication that inhibits my immune system. Today the doctor lowered my does to give my T-cells a fighting chance against my Metapneumo Virus infection of the lungs. Lowering this drug will also reduce my tremors and weakness. I have finished my antibiotics for C Diff so hopefully my appetite will return and my lower GI infection won’t. I was sent home with a stool sample kit just in case.
It’s hard not to get discouraged at this point. I thought I would be better than this by day 100. I know it’s all been small setbacks and everything else is going well but I’m disappointed that I still have my central line and I’m still so tired and I keep getting sick. But the nicer weather is helping and I still have time.
Team Perfect Match is ready to accept participants for this year’s Columbus run on August 17, 2013! See our team profile and register through this link. Code Earlybird is good for $5 off registration costs until May 10.
We are also looking for sponsors. Last year we raised $1,125 to support the costs of registering donors. $100 covers the cost to add one potential marrow donor to the Be The Match Registry, giving more searching patients hope for a cure. Be The Match also gives grants to patients undergoing transplant to help with medical expenses. When I received my check I was told it was not for buying boots even though I really like buying boots.
Team Page URL: http://www.bethematchfoundation.org/goto/perfectmatch
There are some things you should not say to a cancer patient. Some of them are obvious like, “your bald head makes your ears look bigger” or “How long do you have to live?” and the one people blurt out trying to appear compassionate without thinking “My aunt (dad, grandma, coworker) died from that illness.” But one thing is done that should not be. Congratulating a cancer patient on her weight loss. Exclamations of “You’re so thin, here eat something!” is fine. I am thin and I do need to eat. I’ve been able to maintain a semblance of my prior body shape so I don’t look anorexic but I went from a size 8 which is a healthy size for a mom with two kids down to a 4. This is a fine size too and I do like my jeans but I was healthier and stronger 20 lbs ago. Of course my illness contributes to my weakness not the weight but I associate the thinness with being ill. I’m trying but I cannot gain. Bowls of ice cream melt on my nightstand. I eat the center of a sandwich but not the bread. I pick at my food like a person with an eating disorder. My intake of food and fluids is a struggle everyday. I have to constantly have something in front of me just to get in basic nutrition and fluids.
I usually shut down the compliments on my weight by saying, “Yea, it’s the leukemia diet”. I only eat three bites of food at a time. And times when I do get in more quantity I feel sick for hours. It’s probably going to be like this until I can start going off some of my meds and I get more energy and start real exercise instead of just physical therapy and having my handsome son walk me around the block with my hand on his shoulder. (I won’t go into now how being a caregiver to his mother will affect his future self).
I know that the ideology of thinness is in the culture but I hope we can move toward regarding healthy as the ideal. And you can’t tell a person’s health by looking at them. Super thin or seemingly overweight is sometimes just a person’s natural state and not caused by an eating disorder or a lack of willpower. Even with the almost 3 lbs (2.81, I calculated) of silicone in my chest I weigh a little less now than I did in high school when I was considered to be a “big girl”. I lettered in cross country and played basketball but I was tall and thick compared to the other girls. I felt healthy so I’ve gotten over the numbers on the scale long ago. The leukemia is bringing me back to the “weighing machine” as my non-native speaking physician calls it. The numbers tell her what is happening in my body and a trend downward is not good.
I will admit to hyper-focusing on my appearance as an escape and a way to maintain control. If I don’t look sick then I am well, right? For me the slogan, “Look good, feel better” is true. I do it for my daughter too. The boys never notice but for the first time since my transplant I played around with makeup a couple weeks ago. Amira noticed right away and told me that I look cute and that she can tell I’m getting better because I put makeup on. She didn’t mean that I look so much better with makeup or that she prefers me with makeup but she took my effort on my appearance as a sign that I’m recovering. It’s hard to find a way to teach her feminism and not basing your self-worth on your appearance while at the same time not discouraging her forays into makeup.
My daughter doesn’t eat. She is extremely picky. She wants to argue and negotiate. I don’t make her eat but if she doesn’t there are no snacks. Afraid that she will starve I will let her eat an apple if she sits and stares at her plate and refuses to take even a bite. Many nights of the week she will eat just an apple for dinner or nothing at all. She doesn’t seem to register hunger like a normal person. She will eat something if she likes the taste of it but if not she would rather just not eat anything. The thing about how kids will eat what they are served if they are hungry enough doesn’t work with her. I completely understand now. We both sit and look at our plates of homemade meat and vegetables (generously delivered weekly by Jeffrey’s coworkers) and for my sake and hers I eat it. Not all of it but enough.
The hospital wants me to gain. If I’m not able to eat and my weight trends downward they will suspect a possible outbreak of GVHD of the GI tract. An endoscopy and colonoscopy are needed to rule this out. To avoid these procedures I want to eliminate cause for concern by maintaining my weight. With an appointment looming tomorrow for a bone marrow biopsy I weighed myself today and came up 3 lbs short. I attempted to bloat my way up but it was a massive fail. I will wear heavy clothes tomorrow and hope they don’t notice.
My afternoon snack. The nutritional information said the total on these is 1000 calories. I was able to eat a few bites of each.
I traded in my knee high boots for my gold Sperry’s for this spring day trip to the hospital for a check-up. I wore a funny mask and my new hair and got several compliments. I’m doing well. White counts are a little down but it could be from meds and my platelets are as good as a normal person’s. I continue to have orthostatic hypotension and tachycardia which is a concern but I was assured that they do not need to crack my chest and get a look at my heart. We just stopped by radiology for a quick chest x-ray on the way out. No biggie. People do that all the time, right? I have to go to a gyno for the rest of my issues.
Here’s my funny bunny mask and a photo bomb from Jeff.
Some people might be uncomfortable with this post. I decided that I couldn’t NOT write about it because it’s an important part of my experience. If you have a misogynistic world view then please move along to foxnews.com. Or stay here and learn something and possibly read some Gloria Steinem for fuck’s sake. Some might call me the queen of overshare but I think it’s important to communicate. My career is built around this concept and I believe in it.
Hot flashes. I know. This is your mother’s complaint. This is what sends her into a shrieking banshee fit when she is trying to prepare Thanksgiving dinner for the ungrateful crew on the couch. Well, It’s happening to me. They happen several times in the day and at night. Last week I ripped off my wig in the middle of Target’s toy aisle permanently scarring some poor kid I’m sure because there was sweat dripping down my face from a hot flash. I wake up with my undies and tank (all I can stand to wear to bed) soaked with sweat and I’m shivering with cold. I’m guessing this is menopause. It could be permanent or not but they warned me it was coming. The Total Body Irradation (TBI) fried the one last ovary that I had left. Women my age say “Great! No more periods!” Women 20 years older than us know that we are losing something. We start our periods at age 12 and it’s a sign of impending adulthood. At menopause we are losing a piece of our youth. As annoying as it is there is something I miss about having a cycle. With all the surgery, chemo and septic shock etc it has been awhile. But there is something primal and dark about bleeding every month that tells you that your body is doing what it is supposed to do. With the change in hormones just before the sight of blood is often a relief. Especially if you been, ahem, less than careful that month.
And speaking of that, Jeffrey will probably hate me and sneak around at work for a few weeks avoiding the group of lovely ladies there who read this blog, but yes, I’m still allowed to have fun. Things have changed some over the months. I remember at the new BMT patient education class they got to the part that talks about side effects from the radiation. If you can recall, I received 3 days of twice daily TBI treatments last lasted about an hour each. I only have vague and delirious memories of those days. I wore just my blue dot boxer shorts and did what I was told only responding to questions with a nod of my head and possible mumbling if you were lucky. My skin was burnt, my body numb and my head foggy. I wasn’t thinking about anything except going back to my bed and going to sleep. The training class listed the immediate side effects:
- nausea and vomiting
- mouth and throat sores
- jaw pain
- swollen salivary glands
- dry mouth
- skin redness
- hair loss
- low blood counts
Yeah, yeah, I got it, that’s all normal. Long term side effects and risks?
- hormone problems
- vaginal atrophy
- lung, heart, and kidney problems
- secondary cancers
Wait… what? Go back. Can you tell which one is confounding me? As it turns out, vaginal atrophy is actually a thing. I asked the nurse to please define. She said that it gets smaller (her words). Jeffrey gave me a smirk and I knew what he was thinking but it didn’t stop him from saying it aloud. Then I asked if there was anything that could be done about that. She said there are dilators and medication. Jeffrey, still grinning, said something about finding my own treatment somewhere in my nightstand.
Turns out, that’s a part of the menopause bit. So are the migraines I’ve been getting. I didn’t make the connection before. You see, we are just women, and we are afraid to talk about the dark side except in hushed whispers to BFFs or co-workers. I’m piecing it all together from the internet and statements from nurses and doctors. I’m going to address it more directly tomorrow with the doctor. While I was inpatient the docs have attempted several times to put me on hormone therapy. I actually took estrogen for four days before I realized it and stopped. The next hospital stay another doctor mentioned started hormone replacement therapy. Did they just forget that I had breast cancer? My tumor was ER+ and PR+. This means that my tumor type feeds off of hormones. Medications with hormones including birth control and hormone replacement therapy are out for me.
So, ladies, please share. How do we deal with menopausal symptoms?
Here is a picture of my new pretty little eyebrows and lashes. My hair is growing in a dark ash color with unconfirmed grays. They might be blonde. Not sure. Either way the amazing Jon will fix it up in the next month or so. So get used to my new look because I can’t wear anything on my head right now because it’s too damn hot!