Archive for June, 2010

Well, I talked a big game doing the art show and modeling in the bridal show (that benefits Komen) and I had a nasty cough that whole weekend. The oncologist office had suggested it was just sinus/allergy related and suggested Mucinex or Robitussin DM or something of the sort, so I took that. Kept coughing. Still felt like I got plenty of rest that weekend even though we had a lot going on, I probably didn’t though.

Monday the 7th wasn’t bad. Tuesday the 8th was. I called the oncologist’s office and they suggested an antibiotic. Keep in mind I was scheduled to have chemo on Wednesday. So I start Keflex and off I go for my monthly blood draw to check my kidney function to make sure I could get Zometa which I am given for my bones. Now the spot on my stomach still hurt from the Neulasta injection almost two weeks earlier, I don’t know what she hit but that spot was still tender, then during my blood draw, a nurse who does my blood draws all the time, hit a nerve so that hurt and I already felt yucky. Turns out I am running a temp off and on (and would all week) and of course, not eating much.

Wednesday morning I am dragging and off we go to chemo. They tell me “Hey no finger stick today, they drew for the cbc yesterday.” Cool. Then they come and get me and say, “Well… your hemoglobin (a red blood cell marker) is low, really low, we need to get a new reading”. Okay, the finger sticks are generally not bad even though I have had them hit a nerve on that too. Go in to see Doc Bhld. Red counts are too low, can’t have chemo, you sound terrible. I want you to go to the hospital and have a chest x-ray and get a blood draw for type and matching so you can have a transfusion tomorrow. So my friend Terri is awesome and takes me for all that, the whole time I can barely stand up let alone walk.

Back home finally and to bed thinking, okay, tomorrow I can run in first thing and get the blood draw and still make it to a funeral for the kid’s great-grandmother. Not so much, just the transfusion was going to be four hours long. My mom flies home early from Florida and while she didn’t have to, I was so glad to have her with me, I’m not sorry she came home – I was just sick and wanted my mommy. That night I remember laying in bed thinking, I am so hungry but standing up is just too much effort and with the air conditioning on I’ll be cold so I’ll just stay in bed. Thank goodness for my friends and husband and family who took care of my kids.

Thursday I get the transfusion, fortunately it was in a suite associated with the hospital, I had a bed, they brought me lunch, it was very nice as far as those things go. The only real problem was my blood pressure was so low, 89/46 at one point so they had to keep waking me up and making me move to make sure my bp would go back up. I’m thinking I’ll feel better by the time I’m finished. Nope. Back home, back to bed.

Friday was a bit better, not great but better. My daughter had stayed the night at a friend’s and my mom came and took my son for the afternoon. I did go out for about 2 hours that night but was so tired I was home and in bed by 10. Saturday showed more improvement and so did Sunday but it was Monday before I was really starting to feel myself and then I had to go to the chemo I had missed the previous week. I felt better during the next few days dealing with the after effects of Adriamycin than I did any day the week before, that was how sick I was.

I was really sick, I was scared at a few moments and I really started to get a better grasp on the comment “My faith got me through.” I talked to God and I talked to myself, this wasn’t the worst, it wasn’t even that bad by many standards and compared to many things others have had to deal with but it was my worst week so far.

The SILVER LINING – the doctor did tell me that the blood draw that Tuesday showed slightly improved liver numbers. Slightly was the word but improved is always good. So round 6 of the red devil is this Wednesday, I think I’ll have scans next week and we’ll figure out what is next. Maybe a trip to Houston (likely), maybe more chemo, maybe I can get these expander baseball feeling implants out soon. Who knows but I’m not going anywhere.


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That is our running joke about our city. If you meet someone new and talk to them long enough you’ll likely figure out someone you know in common. One time my now husband and I realized that we were talking to someone who was actually a distant cousin of his. I’ve been out of town, and I mean in the Caribbean, and ‘run into’ someone I knew from home on the beach. This is the only place I know of where when you ask someone where they went to school, they tell you their high school.

One of the survivors I know I had met online on a local moms site and we ‘ran into’ each other at chemo. I ‘met’ another survivor who I have been in phone contact with a few days ago at chemo. I even found that the founder of a local survivors/support group and I had a friend in common.

So pair those traits with the fact that I don’t keep my diagnosis a secret and I don’t insist that others do either and it probably isn’t a big surprise that people I don’t talk to often find out that I am ‘sick’ but every once in awhile I still get surprised. My mom got a note from an ex of mine. I loved this guy, we were together for several years, I thought I would marry him, better for both of us that we didn’t and we haven’t spoken in years. I don’t even know of any connections we still have but still he found out. I’m not bothered by it but I will admit I’m curious. My mom said the note was really nice and she sent one back and perhaps he’ll contact me himself at some point.

I guess the basic message of this is that if there is someone that you are considering reaching out to, for whatever reason, and you are maybe not sure if you should, it has been a long time, things ended badly, you have no idea how you would be received… Err on the side of trying. The notes and phone calls and emails and prayers and good thoughts all mean a lot to me and sometimes the timing is exactly what I needed. Some days it really helps to know that someone is thinking about you, even if it isn’t the person you were expecting.

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Admitting we need help
It is really easy for me to give other people the advice to ‘let your friends help, they want to and there are only so many things they can do, so let them’. It is much more difficult for me to heed that advice. My amazing mom and fabulous father have taken the brunt of taking care of the kids and helping with meals and things like that. I finally convinced my mom that she needs to take care of herself too, pair that with a friend telling me about a fabulous website called Lotsahelpinghands (thanks for the recommendation Eleanor) and we have a user friendly calendar that lets me and my mom add things we need help with and lets friends sign up to help.

Admittedly this is a huge blow to my ego and required swallowing some pride. I know it seems obvious, but it is really tough to admit that you are having problems doing the things that you have always done, or that you perceive as being expected of you. I think it took some courage for my mom too, she has been so involved in making meals and watching the kids and coming over and helping me out that I think she was a little hesitant to give up some of that responsibility. The nice thing about this set up is that if Mom has the ability to add things to the calendar then she can also ‘have dibs’ on the things she wants to do and can work with her schedule, giving her time to do other things and know that the kids and I are taken care of.

I broke down and got a handicapped tag for the car too. I cried when I asked. Again, it feels like admitting weakness and it is admitting that I am physically not as strong as I want to be and that chemo is taking a toll. I can’t wear my heels, I can’t even wear flip flops, thanks to the neuropathy in my right foot. I can still flex my left foot as much as I ever could but that right foot is just not cooperating. I know I am ‘lucky’ on some level, I don’t have it in my hands and so many others have so much more problem with it but it doesn’t make it less aggravating.

Keeping things for ourselves
This past weekend was Summerfair, a local fine arts and craft show that I am involved with organizing. I am fortunate to have so many friends there who basically parked my butt in golf cart and made sure I drove or was driven around the entire time. I am blessed to have them. I did have a conversation or two this weekend with people asking “Why do you keep doing this?” What am I supposed to do, sit at home and do nothing. I’m not dead. I’m not dying. I am tired. I am fighting. I am going to win. Summerfair is something I do for me, not my kids, not my husband, not anyone else. I have been involved for a long time. Yes, my role is big and I’m tired this week but I love Summerfair. I enjoy dealing with the artists (even the ones who make me crazy), I enjoy seeing the items they have and learning about how they do the things they do. I love seeing the crowds walking through the show and knowing that I helped bring it all together. Yes. I have canser but it isn’t going to run my life.

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