what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Tuesday, May 24, 2005

Flunking blood tests

Of all tests to flunk, yesterday I flunked my blood test and was denied chemo--my white cell count was too low for treatment. After a few minutes of conversation, I convinced my oncologist to give me white cell booster injection of some stuff called Neupogen. As a side effect, it also gives a nasty back ache to the recipient. Anyway, I'm going back to the oncology office today to see if the stuff got my white cell count high enough for treatment this afternoon. If not, then I'm forced to take a week off to let my body recover.

My red count is low too, but not low enough to need another blood transfusion. I'm pretty tired again though, I can tell that the good parts of my body are getting beat down from weekly treatment. Even with feeling tired (low red count) and being more susceptible to catching infections (low white count), I don't want to go a week without treatment and if it was up to me, I wouldn't. I think this chemo might actually be working and I don't want to give the cancer even a few hours of rest, I want it destroyed right away. No breaks. Relentless war against the evil cells.

I went to see my new chiropractor and massage therapist yesterday. I'm sore today from that, but hopefully its the good kind of sore, like a workout used to provide to me. The chiro told me that basically my entire back is out of alignment, including my ribs and shoulders. My spine is even sort of curved now, all thanks to surgery and what happens when muscles get cut through during the operation. I feel like a hunched-over old lady now. The chiro suggested that whenever possible, I look in the mirror and visually adjust my posture, especially where my shoulders are concerned. When I do this and force my shoulders to be level and straight, it feels like my right shoulder (the surgery side) is much higher than the left because it has gotten used to being so much lower to protect itself.

The massage therapist and I are going to trade services: she needs a small website and I need more massage. I did a sketch for her today, it was so nice to do a little graphic design. My work has taken me pretty far from design over the last couple of years and I find that I really miss it. Its what I do best and what I enjoy most. Sure I'm good at editing, correcting, organzing and updating my employer's many websites but it sure isn't as fun or as mentally stimulating. Anyway, the massage therapist was really nice and I hope she can pull together the material she needs to so that we can do the trade we talked about. I've tried this trading services idea with other people before and it always seems to turn out that they don't have the time or inclination to write copy for their own website, even when they really seem to need one. I do have a friend who does writing and editing, maybe I can pull her into the mix too. I haven't tried that tactic before...I know not everyone likes to write and maybe that's a bigger stumbling block than I thought.

Ok, time to go get the healing nectar (chemo). Cross your fingers for a good white count. Die cancer, die.

Thursday, May 19, 2005

Lessons Learned

One of the things I've noticed since having cancer is that I'm in a rapid period of growth and learning. This includes:

  • cancer research, in order to try to get myself the best care.
  • life lessons, to try to make some sense of this mess.
  • personal advocacy, in order to make treatment easier whenever possible.

Yesterday I met with my reiki master healer, Laurel; we have a weekly Wednesday session that is relaxing, energizing and empowering. Laurel is a stage IV cancer survivor and we just really connected right away, which is something she and I were talking about during our session yesterday. It's something I've blogged about before, too. Those connections happen just enough so that they stand out in your mind but not so often that you can't appreciate them as the miracle that they are. I invited Laurel to read this blog...I hope she does.

Anyway, usually my reiki session is comprised of 1/4 talking and 3/4 reiki. Yesterday's session was more the opposite, and I think it must just be that I didn't realize how much I needed to chat and sort things out and I knew Laurel was the one with the answers that would make sense to me. This is also the first time Laurel mentioned that during her cancer treatment, she was a patient of my oncologist. Since she survived stage IV cancer and has been cancer free for some time now, that gave me new faith in my oncologist too. One of the things Laurel said that just clicked for me was "today is a good day to live, or, today could be a good day to die." To a normal person (aka, not a cancer patient), this might sound a little too grim reaper-ish but to me it sounds just right. It just reiterates the idea that it's important to live each day the best I can, even when I feel sick, tired, confused or depressed (or all of those things at once).

Speaking of feeling tired, I saw one of the chemo nurses yesterday too and she asked if I was feeling better since Friday's blood transfusion. I really had to think about it because its been so long since I wasn't dog tired and had the energy to really exert myself. Of course a blood transfusion isn't going to do all that (give me energy to really exert myself) but I do feel better and actually I'm sleeping better too. It just took awhile to kick in. Since Saturday, I've been giving myself daily shots of wheat grass too and I really think it helps. It's only a buck or two and even if its only a placebo effect, it's worth it. Back in my pre-cancer days I would blow a buck or two on some little snack from the vending machine or some treat during lunchtime like a cookie or something. I never bother with that now -- I'm barely hungry enough to eat a regular meal and am not exactly craving snacks -- so the wheat grass expense is nothing.

It's a good time to repeat how nice those chemo nurses are in my infusion room. At my last chemo, Cindy was my nurse and while she was starting my chemo, at my request, she sang a wonderful aria for me and Angela -- Cindy has been singing professionally for some time now and she has an amazing talent. Angela and I both had tears in our eyes from the beauty of the experience.

Another nurse named Lourdes came over and gave me a big hug and told me how nice it was to see me smiling again. Another nurse, Gail, also gave me a big hug and offered a book for me to read. It was a book about spirituality, so she approached the subject carefully but the whole thing was totally fine by me, I'm open to pretty much anything these days and I like that Gail was thinking about me. I think she was trying to find something besides medicine to give me some solace since she has seen me crying in the infusion room so much lately. I have a wide mix of religious and spiritual beliefs and am fine with someone suggesting something for me to take a look at provided that the someone is not some stranger on the street. My dad's sister Marilyn sent me a few books from her lifelong religion too--she is a Christian Scientist. Again, I'm sure there are some interesting things I can take away from all of this stuff.

In keeping with my "I'll try anything to get better or feel better" mode, I'm going to start chiropractic treatment on Monday. Even the phone call to set it up was a good experience. The person taking my call just happened to be there helping out the office, I don't think she was the regular appointment setter/receptionist person. I told her the names of my friends who referred me to the office and then gave her the briefest background about why I thought I needed to come in. She asked if she could take my phone number and call me back in a few minutes, which she did. When she called back she said that both chiropractors were willing to lower the price of the initial visit by about $60 since I was going to be a cash patient. They would also lower the price of the follow up visits if it was going to cause me any financial hardship. Then she told me that their two massage therapists each wanted to give me the gift of a one hour massage and she would coordinate it so that the massage was after the chiropractic session. How nice is that? These people don't know me at all and they extended such a warm welcome to me. The message I got from this organization is that their goal is to treat and heal people. Not just make money.


Saturday, May 14, 2005

No, Comment

This is a message to anyone who has commented on my blog; Thanks, and, more please. It feels good to know people are reading this and it feels even better to know that my random thoughts and comments help people relate to their own lives in some minor way.

Yesterday I had to have a blood transfusion because my red blood cell count was dangerously low--that explains the falling asleep at stoplights, eh? It was only the second time since treatment but I think my body is getting beat up after 14 months of relentless drug abuse (chemo) and I think more transfusions are in my future. It took a long time: I was at the hospital from 1-7pm getting two units of blood from some nice people who donated in different states (AZ and Iowa, I think). I don't know why the blood wasn't from San Diego? We have blood drives here all the time and I'm not an uncommon blood type: I'm A+. Anyway, first you get "typed and matched" even if you already know your blood type and it takes about an hour and a half. Then the transfusion itself takes a long time too.

My friend Fretz went with me. He is a good guy and a good sport. I'm sure it was boring as hell to sit there 6 hours, especially since I was falling asleep off and on during the treatment. Fretz literally read every magazine they had it the room. He also had to watch me cry as the nurse attempted and failed to get my port to work for her. After three tries, I told her to forget the port and to use a vein. I don't know why its so hard to use this port thing for some medical people. It's supposed to be extra easy, that is the whole point of this little device...easy vein access.

I'm seeing my oncologist on Monday to discuss ways of shrinking the lung bad guys so that they will interfere less with my breathing and maybe even quit causing me so much pain. I think there might be more than just chemo to work on this--I vaguely remember reading about a technique called ablation therapy where the radiologist basically burns the tumors/nodules with a special tool and it can be done in an outpatient setting.

I'm not feeling too chatty so I'll end today's post. Remember, comment anytime.

Wednesday, May 11, 2005

Birthday #39 and other things

Amazingly, I've made it to birthday #39. I'm not even counting cancer when I make this comment about myself. I'm made plenty of ridiculous decisions about my health and welfare and to be honest, some of those decisions ought to have taken me off this green planet years ago. And yet here I am at 39, battling a fierce apponent who will simply not leave me alone.

Birthday #39 was really nice. I asked for a birthday party and Dan and Angela put it together in about a week. It gave me a warm fuzzy feeling that I haven't had for a long time and it again made me remember how lucky I am to have such nice family and friends. Alot of my friends gave me clothes, which is especially nice since most of my "regular" stuff hangs on me and looks pretty bad. I guess thats what happens when you go from a size 6 to a size 1 in a month or two. I got some cute silver earrings, some wonderful candles and bath stuff, and a whole lot more. It was fun to open presents like a little kid. Originally I wanted the them of this birthday to be One Year, Still Here. I think I even made a blog entry with this title? Anyway, Angela thought it was a little depressing so we didn't go with it.

On Saturday, Dan and I went to go get my engagement ring reset. It was a cathedral setting with a princess cut diamond. I really liked it but for some reason, even though we asked for white gold, it came back as yellow gold, which I rarely wear. And the setting was so high and sharp, I was always afraid I would gouge the baby's tender little head with it, so once she was born I put the ring away. But the ring means alot to me and I want to wear it again so it's getting reset to something more smooth and modern looking. A pressure setting in white gold. It ought to be ready in a week or so, as soon as we approve the wax mold they made of the new setting.

So you can probably tell that I'm down today. Cancer does that, you have ups and downs that are more pronounced than your pre-cancer days. I'm sad because it's in my face that I'm not wonderwoman and I can't do it all like I want. I'm worried that if I have to keep missing work from being tired from chemo, I will lose my job. I don't know enough about the laws that protect people with chronic illnesses or disabilities. I understand that my employer has work that needs to be done and it would be hard to blame them if they wanted to let me go and hire someone healthy. I want to be that healthy person again and I'm trying so hard. If only the cancer would leave me alone for good.

I started the new chemo this week, Navelbine. Luckily it isn't making me sick or nauseaous but it is making me soooo tired that it's dangerous for me to drive sometimes and its hard to predict when that will happen. There's just something about getting into the car that makes me extra sleepy, kind of the same reasons babies fall asleep in their carseats. On my way into work today, I fell asleep for a second or two while waiting at a stoplight. I rested my head on the steering wheel and seconds later, cars were honking at me to get going. It was then that I decided I should probably not drive into work today and that my body was sending me a clear message: you need more sleep.

I've missed so much work lately, I'm starting to worry about my job. If I'm not too tired, then my back and shoulders hurt from cancer and referred pain. My employer is getting me a new chair to help with my comfort in the office but the ordering process is not going smoothly and here it is one week later and no chair. Anyway, I missed all of Monday, worked about 5 hours Tuesday and today is Wednesday, the day I fell asleep at the stoplight and then decided to go home to sleep some more.

The really crappy thing is that this chemo is given weekly, so I will feel like this (or worse) for two months at a minimum...and if the treatment is working, probably more like 6 months. Today I wrote my boss an email about re-addressing the topic of working from home. I'm all set up to do it but he has not agreed to it when I asked in the past. I'm not sure if this is a University policy, a department policy or one that the IT director enforces herself. I need to know who to talk to about it. It just seems dumb that I'm home ready to work for 6 out of 8 hours in a workday. And surely it would cost them more to hire a temp to do my work? It would be so easy to track if I was "really" working since we have a content management system for our websites. I know most companies think if you're working from home, then you're probably not really working. Working means alot to me. Not because I'm some crazy workaholic...but work means a bunch of different things to me. It means I'm still ok enough to keep a job. It means money. It means health benefits. It means something to distract me from all the medical garbage in my life.

It sucks to be tired in the daytime and wide awake at night, too. Insomnia is no fun. Sometimes I'm awake because I'm scared and I don't know where this cancer thing is going to take me. Sometimes I'm just uncomfortable from back and shoulder pain and laying down in bed hits all the places that hurt. I feel like an old lady with these complaints.

Sunday, May 01, 2005

Getting By

Yesterday my family and I went to a birthday party for our friends' son who was turning 5. At the party was a sweet 9 month old baby girl named Emily. I was absolutely taken with her, and I must have played with her for a couple of hours. It was so much fun, I just loved her--she was just starting to crawl and she was a nice mellow little soul, not fussy or difficult but also not quite as active as Jennifer.

Towards the ends of the day, I was chatting with Emily's mom and I mentioned to her that I really feel like I missed out on getting to know my own baby at that age...it just sort of dawned on me during our conversation that I pretty much missed Jen at 9 months because that was right around the time of my mastectomy surgery, so I was both stressed (before) and then drugged out (after) for at least 3 weeks. When I used the words "missed out" to Emily's mom, she asked why (of course) and I told her I had been in treatment for breast cancer since Jen was about three months old. Since I didn't elaborate much, she didn't really understand how serious my condition is or that not everyone survives for years after a diagnosis. She asked if I thought I'd have any more children and she seemed surprised when I told her I probably couldn't, between all the chemo drugs and me turning 39 in about a week. I'm sure she doesn't know that chemo can make a woman sterile (why should she have to know that?) and I'll just assume she didn't think I was nearly 39?

Later that night I was in the bathtub feeling sad and crying about all the time I'm missing with Jen (and the rest of my family) because of cancer treatment of one kind or another. It really sucks. I hope this new chemo will kill the cancer and let me have some sort of life during the treatment...what's the point of being alive if I'm too tired to do anything? Or in pain from surgery? Or sick from treatment.

This week I received two really nice cards/gifts from friends, and my continually generous sister let me chose my own birthday gift so that's on the way too. And something from my Aunt Angie too, another continually generous family member. From Linz, some gift certificates to Cold Stone to help fatten me up (I'm 113 lbs and a girls size 16 right now). From Kelly Mc, a big check to buy some takeout when the mood strikes me and when I don't feel like cooking. From my sister Vikki, a Palm Pilot to help me keep all my apppointments straight, which is getting harder and harder all the time with my ever increasing medical crap to deal with. From Aunt Angie, a big check which I'm supposed to use for fun stuff for me but usually ends up mostly getting spent on bills and stuff (I'd say about 40% of it gets to go to "fun stuff"--I wish it was more but when I'm working less, we have less money...)

Hank and JoAnne are planning to visit us in early June, which will be nice. We haven't had much time together since they were here in September to help after my mastectomy surgery and I didn't really get to enjoy them since I was feeling crappy for most of their visit. Angela said they could stay in her guestroom which will really help out--she only lives about 10 minutes away and this will allow H + J to stay a bit longer since they won't have a giant hotel tab to deal with. In all likelihood, I'll still be working part time since I'm sure to be going thru chemo of one kind or another. I start the new chemo drug Navelbine on May 9, I have to ask the onco how many treatments he wants me to have before I get another CT. Unlike other treatments I've tired, Navelbine is given 1x weekly. Maybe it will kick my ass, maybe it won't. There's only one way to find out. But if it does kick my ass, I don't know if that also means it will make me tired every weekend (I'll get the treatment on Mondays). I sure hope not.

My mom has been asking to visit for awhile now and I don't really know what to do about that. She needs to stay with us since she is on a very tight budget. Our place is small and my mom is used to living alone and of course there's more that just that to think about. I know its time to let my mom come out again, at least for a weekend, she hasn't seen Jennifer since Jen was 2 months old. Our last visit was ok but she did her usual thing and tried to pick a fight at the end and it was dramatic overall. I just don't have the energy for that. I wish I could talk to her and tell her that if she can hold it together and be positive and help out and not make more work for us (Dan) then she can come. Most of the time when she asks about visiting, she just says she wants to come see Jen, not help us. Occasionally she rephrases so that it sounds like she would try to help us out. I don't think she knows how.

BTW, I've never told my mom I keep this blog and I hope she doesn't stumble onto it, she'll probably not like what she reads. I've never been able to have a conversation with her to try to straighten out all the years of drama and conflict she has created in our family--she just isn't up to facing it. Part of dealing with cancer is trying to tie up loose ends just in case...I don't think I'll be able to do that directly with my mom. Instead, I do that by talking to my therapist. As my sister aptly said in an email (I hope I don't misquote): Our mother has re-written our family history a hundred times in her head and she no longer really knows what really happened. In the past, when I've tried to talk to my mom about incidents in order to resolve them for myself, she doesn't remember them at all or pretends it happened totally differently. It makes me feel like I'm going crazy.

I try my best to take my mom for what she is and what she can offer. I also try to limit my contact with her, both on the phone and in person because it isn't healthy for me. I know I need to see her soon and I'm trying to get myself ready for that. I look so different than when she last saw me, and she doesn't really listen when I tell her about treatment or its results so she is sure to be shocked at the difference.