Thursday, January 31, 2008
I woke up this morning on an instinct. Get into the bathroom as quickly as I can because it's bleeding through. Geesh. I clean up and go back to bed for another 45 minutes or so.
I get up and putz around, have breakfast, and look at my head. The small amount of hair is flattened right against my head. Of course. I slept in a hat... I had wrapped a scarf around my bed head, and after breakfast I tried on one of the wigs. I went to talk to Daniel. It takes him a minute, and he says, hey, that looks really nice! And he's smiling! Ok, cool. We visit for a minute, and I go back in the bedroom. I put the other wig on, and go back to talk to Daniel. After a bit, he looks up at me. I don't say anything, and after several minutes he says Oh, that's the other wig. That looks good, too. Whew. It's always good when you still like it in the morning...
I go back to our room, take that one off, and look at the hair I have left. I try pulling at it, thinking I'll have another quantity of hair. Not so, just another golf ball size, if that. Hm. That's interesting.
In the shower, I scrub/massage my scalp good trying to loosen some hairs, but when I'm done, there is no hair on the drain. Hm. Must not be time for those other ones to come out. I decide to style my hair and see what happens. I guess it's ok, and decide to not wear a wig today. I think it looks ok. Thin, but ok.
I go to Jackson for a meeting, have a bite to eat afterward, and go over to the nursing home. My brother Jim and his wife Polly are there waiting for me. Jim has shaved his head.
I was so surprised! And he has a nice shaped head! I hope mine looks as good as his. Thanks, Jim.
After getting Mom fed and cleaned up, we had to wait for medicine. I got a tissue, laid it out, and started pulling hair. I removed another fair amount from the back bottom half. Maybe a palm sized clump, but significant. After I got Mom tucked into bed, I stopped at WalMart to check the bandanas and other assorted head covers. I ended up with several bandanas, several scarves (they're very soft), a few do-rags, and several stretchy headbands (I read they are good under a ball cap). I also saw some other cute sparkly headbands, but I think I'll wait to see which ones I really do wear before buying any more. Maybe I'll check out some bling-brooches at a thrift store....
I head home. I'm hungry, but have underlying nausea. Not throw up nausea, just queasy nausea. Dan goes to bed, I have a bite to eat, then head to the computer. I work in the morning, so it's early up for me.
Thank you all for reading, and commenting. Your comments are very important to me. I often go back and read them for encouragement, and often find myself smiling, or saying thank you outloud to the computer. I thank God for each and every one of you, and consider myself truly blessed. I'm off to bed...
Wednesday, January 30, 2008
So I wake up, Dan says I slept well. Yeah, I was probably snoring. I get up and remove my hat. My hair is all smushed down. I leave it like that because I'm afraid it might all kind of peel off. I wash up a little, and carefully touch my head. The hair doesn't come off, and I carefully run my fingers through it to fluff it up a little. It doesn't come off in my hands, and that's ok, but I'm not going to bother it a whole lot more until after I eat breakfast.
We get breakfast done. I'm a bit crampy, so I have a couple of tylenol and enjoy the heating pad for a bit. I check the email, use the phone, and decide it's time to try my hair.
I take a plastic bag and lay it on the counter, reach up, and pull some hair. Out it comes. Hm. I pull again. Out it comes. Not every single strand, but good size pinches of hair, maybe 20-30? strands each. I continue to pull. And pull. I pull for maybe 45 minutes, and I can tell that I've gotten lots of hair out. It feels pretty thin. Daniel and Breon watch me a little bit; they say that it looks weird to see someone do that. (you think it's weird to watch...) Oh my gosh, to pull and pull, and it doesn't hurt or anything. You can't even tell that you're doing anything to your head.
I was surprised at 2 things. One, that my hair was so dark. I have always had the impression that I had medium brown hair. The hair that I pulled out is dark brown. Yes, there's some gray, mostly in the front on top, but I really didn't know that it was that dark of brown. And the weirdest thing. The root bulbs are dark, like burnt. When you pull a healthy strand of hair and you happen to get the root bulb, it's white. All of these root bulbs are dark.
I am kind of glad to see the hair coming out--the chemotherapy is supposed to be acting on rapidly dividing cells, which are mainly the hair follicles, intestinal mucosa, bone marrow, and actively dividing cancer cells. Seeing the dead hair roots is proof that the chemo is working. I envision that if there are any active cancer cells they, too, are black and dead. Grrr--go get 'em.
After I've pulled over all of my head, I have quite a nest of hair in the bag. I get into the shower, and shampoo, scrubbing to release any others that may be pretty loose. I end up with only about a golf ball size clump of hair on the drain. I think I did pretty good.
I put on a little mousse (I only need a little, for what hair is left...) and as I'm getting ready, I think that I want to take some pics of what I've done. I get the camera, and Dan looks at me funny. "What are you doing?" I want some pictures of my hair loss. He's happy to oblige me.
I guess I don't need to label these top and sides, huh. He took the first one of the top, and turned the camera to show me. Whoa! I guess I really did lose some hair, huh? Here, get the side. Ok, now the other one. He shows me the side views. (I'm thinking, yuck) Good, just what I wanted. See on the back behind the right ear? That where I started last night.
And this is my hair nest.
I take a few minutes and finish my face and hair, and Daniel and I go over to Elegante to pick out a wig. I tell him I don't think it's going to take very long, after all, we've already shopped, and I have the styles written down here, so I'll just try them on again to make sure, and we'll be done.
Well. We get to the wig store and go in. Dan looks around at all the wigs, and I lead us over to the collection of Sophie boxes. I pull out the colors I had written down and try them on. Oh. These don't fit the same. And the style isn't good either. He didn't really like the colors of them, and neither did I. (what's with that??) I didn't realize just how much the hair on your head makes a difference in the way the cap fits, and the way the style is. And Daniel didn't like any of the colors we had written down. Ok, then, lets pick out some others to try on. And we did. I ended up narrowing the selections to 3, then trying to rule them out. The criteria were: it had to be wearable by tomorrow, Thursday, 1:30, so that meant the cap had to fit, as the lady said a cap alteration could take a week; the cut could be done at a 12:30 Thursday appointment if needed; and the style had to be easy, not something that needed to be fussed with too much to make it "work". All 3 choices were $99 or less, so cost was not a variable.
I put on each of the 3 again, checking the fit and feel of the caps, and how readily I could get the style to "go", and if I liked it when it did. And Dan had to like it, too. I finally eliminated the one that needed a trim, and asked her to write them up, along with a wig care kit, which includes a plastic wig stand, wig brush, wig shampoo, and wig conditioner, all for a tidy price of $16.00.
The two styles I chose were Estetica Designs, PNancy (petite) color R5LF29. A sassy dark brown with dark reds in it, for $99.00. And the other one is Hair Fashions Designs (which I haven't located on the internet yet) style BeBe color 10. It's a softer brown, shorter cut, much like my own, $78.00. As we were checking out, there is a 15% discount for the second wig. Cool.
We head home, Daniel fixes my food for me (I tell you, he's wonderful) while I go into the bathroom and take care of the "overflow", if you know what I mean. Yuck. We eat, I head to Jackson, feed mom, bleed through again, get her tucked into bed, and head home. Change again, and write here. Change again, finish this. I can't wait for Dr. to question me about my menopausal status. If there's one thing good about chemotherapy, it's supposed to induce menopause, informally called chemopause. Bring it on.
I'm putting on my hat and going to bed.
Tuesday, January 29, 2008
I worked again today. The roads were finally dry this morning, and the temperature has soared to 45 degrees. At the end of January. In Michigan. Wow. It was nice, however, to use the cruise control without watching for black ice.
We had a great day, as far as workdays go.
As far as my physical self, I wonder if this isn't the worse day I've had other than surgery. I didn't feel really bad, just punky. For a couple of hours. When I finally got a chance to eat lunch, it was about 2 o'clock. I hadn't eaten since breakfast at 0500, and I wasn't really hungry, either. I just didn't feel good. A little nauseated, a little queasy. But I worked on it and finished about an hour later. I did drink, though, a couple of 16 ounce waters, a little coffee.
Around about 6 o'clock, a couple of other girls were in the report room with me. My head has been itchy for about a week; so what, that happens sometimes. So, I was scratching my head, and I felt a little bumpy thing on my scalp. And you know how you kind of pinch it with your fingernails to pull it out of your hair? I did that, and a small clump of hair came out. I must have gasped--the 2 others sitting at the table jumped and asked me if I was ok. Yeah, I said, Look. And showed them the little clump of hair. Oh my gosh. It's happening. I'm losing my hair.
Eww. I looked at it for a long time. The others did too. Wow. I was still feeling a bit queasy, and it seemed to take forever for my head to catch up with reality. Yeah, I know I was expecting it. And here it is. After a while, I reached up and tested another area. Wow. Look at that. Another small clump. Now I have two small clumps of hair in the palm of my hand, and it adds up to a small collection of hairs that looks amazingly like a whole lot of hair. And it didn't even hurt. I couldn't even tell that it was being pulled. Oh my gosh. I reached up and pulled again. Another batch of hair. Wow. Ok, that's enough testing, I'm convinced my hair's coming out. YIKES!
I have a thought. Is it just going to fall off of my head, like a piece of fabric might fall off, and I won't have any hair by the time I get home?? (silly, probably not) I am kind of in shock, or at least great surprise. I get up and find something to do to distract me. I decide that Dan and I will have to go to the wig store tomorrow and get a wig. And I've heard that you wake up in the morning and your hair is on your pillow. Eww. I pull again. Another clump. Maybe I'll just shave it tonight when I get home. I call Dan, I ask him about his day, how he is. (I'm surprised that I make small talk...) I tell him my hair is starting to come out. He's quiet for a minute, and says well, we knew it was going to happen... I say yes, we'll have to go to the wig store tomorrow. Ok, he says, we can do that. I don't mention the shaving the head thing. I'm still trying to get my stomach around my hair falling off...
I selectively show the remaining co-workers, individually. Their responses are perfect--they look me in the eye, we make some kind of comments, and they hug me, telling me it's going to be ok. Thank you to each of you. Before too long, most, if not all, everyone knows. So kind, you girls. And I find myself smiling, laughing even, and we make gentle jokes.
It's time to go, we clock out, and go our ways. As I look in the mirror it seems that my hair has gotten "flat", not standing up off of my head. Hm. Interesting. I'm not going to pull any more out, I'd like to have hair when I get home.
I get over to the nursing home, wait our turn for the bathroom. The girls are busy, but a few of them stop as they pass by to say hi. I tell them I'm losing my hair. They take it in stride, and ask me about a wig. I tell them probably tomorrow; they look forward to seeing it. Ok, that was easy.
I make it home through the blowing rain, it's still 45 degrees, but a winter storm warning has strong winds and dropping temperatures coming in the next couple of hours. Daniel looks at me kind of funny. I pull out a clump and show him. He's kind of funny--I don't need to see it, he says. Oh. Ok. I putz around putting my work stuff away, etc., and check email and such.
After a bit, I mention that I'm not sure I want to wake up with all that hair on the pillow, you know? I was thinking about shaving it tonight... He' really tired, and so am I. He says, why don't you just sleep in a hat?
Well, you know, Dan has gone to bed, and I'm not going to pull out any more hair tonight. I think I will try to sleep in a hat to contain the hairs somewhat. I'll re-evaluate the shaving thing tomorrow. The temperature has dropped now to 20 degrees with a windchill of zero, and wind speeds are 35-50 mph. ( I have discovered these last several years that I don't like wind.) It's 0100.
Oh, yeah, I almost forgot. And, I started my period.
Monday, January 28, 2008
I worked today, and did pretty good. Good staff always makes the day go better. I got pretty tired in the afternoon, but got through it without a rest period. (where's my rug?)
Over to the nursing home, got Mom tucked into bed. Back home, I visited with Dan, wrote here, then off to bed to do it again tomorrow.
I found an awesome forum at www.breastcancer.org , about the Taxotere and Cytoxan treatments. A group of women are communicating about their treatments, most were diagnosed late fall/early winter, and most are on their 2nd and 3rd treatments. So empowering and enlightening to read of others' physical and emotional responses. Seems I'm doing a little better than average with my first treatment. I hold no expectations as to the next one, February 6 & 7, just that I know that my woven blanket of positive energies surrounds me. Your colors will strengthen, and I will close my eyes and draw my breath, imagining the pathway vibrant and strong, and be able to walk along, knowing all will be well.
I ask you to please send some strength and love to my friend Zoe, who has her own struggle with a 16 year old son whose wounds seem to be some odd disease process; this young man has large, gaping areas on his behind that just kind of developed. After 2 surgeries, these wounds are slow to heal, if at all, and come with extremely painful, challenging dressing changes. She also has a husband, job, and 3 young children to share her time with. The parent in each of us knows her pull.
Thank you. I've got to go to bed, 0410 is just a few hours away....Hugs, Kathy
Sunday, January 27, 2008
Today is a better day. I don't feel quite as tired, though my hand is still a little tingly. Another thing that is happening is that my nose seems to be dripping/running. Just clear stuff, and not all the time, but it feels like the inside of the nose (both right and left nares) is different. I wonder if that is part of the hair-loss thing. I guess I'll have to go look in the mirror and see if I have any nose-hairs...
I have also spoken to some women, and a couple of men, who lost their head hair 14-17 days after their first treatment. Hair loss also happened after the second treatment. I was sent a movie "No Hair Day" that showcased 3 women with breast cancer who had met in a support group. This movie video-d their photo shoot at a professional studio to capture "their moment in time". Dan and I watched it today, it was very empowering to see 3 bald women. It was interesting to hear that each of them pulled on their hair every day to see if it was coming out. I was nodding my head and smiling, and Dan looked at me. I pulled my hair to check it, and we started laughing. Still in.
I was restless today, and decided to try running outside. I just don't like treadmills, and exercising indoors is, shall we say, stale? It's 32 degrees today, the roads should be ok. So I bundle up and go out. I took my cell phone to call Dan if I got into trouble.
It was interesting, in that I had intermittent issues. Like, my head. I wasn't going fast, at all, just a slow jog. You probably could have walked and kept up. But every so often I would look up to the distance, and whoa, that's not good. So I kept my visual focus down on the road, maybe 3 feet in front of me. My stomach hurts occasionally, and that happened, too. Not nausea, really, just kind of hurts. And the bones in my upper legs hurt on and off. Not anything I needed to stop for. Overall, it felt good to get circulation around, breathe, and sweat. When I came in, my legs ached for a bit, but they have been anyway, so no big deal. Yeah!! I Did It!!!
I showered, ate, and went to Jackson. Fed Mom and tucked her into bed, then came home. I still feel pretty good, and I think I'm going to be able to get to bed before 11:30 tonight. Monday and Tuesday are work days, Wednesday off, Thursday afternoon meeting, Friday work. Ok, off to bed.
Thank you all for reading, for going along on this journey, for weaving your colors.
Saturday, January 26, 2008
So what was today, the letdown after feeling so good the last couple of days? Yuck. Punky today, tired but not really tired.
We did some household chores, Dan went back to the chiropractor, and I went to the library for our respective "fixes". I prepared food, we ate, I went to Jackson and fed Mom and tucked her into bed, then came home.
Overall, I feel pretty good. The skin on my hand and iv site areas are resolving, that aching hurt in my stomach is less frequent, my taste buds are at least 60% working, and elimination processes are "normalizing". My left hand is still a little tingly, I still can't walk a 100 miles an hour and have my brain keep up, and the hair is still in.
So, overall, I'm good.
Thank you for reading, enjoy your day, and be nice to the people you meet. You never know what battles they're fighting....
Wednesday, January 23, 2008
I've felt great today!!! My head is clearing a little and I've had a little more energy. I still can't walk as fast as I think I can, and that's weird--I set off striding but have to slow down to let my perceptions catch up.
Dan and I went to Dr. Bolmer's office, which is really a large medical services building, for my lab draw. We arrived about 11:05 for our 11:15 appointment. I stop in front of the large wooden door and take a big breath before opening the door. I go to the window to sign in, and ask the girl behind the window if I needed to sign in for a lab draw. She said no, just tell me your name. Ok. We sit in the not-really-comfortable upholstered chairs to wait. Dan watches the tv-I think it was CNN-and I picked up a small "magalog" from one of the 2 reading materials rack. I haven't lost my hair, yet, but when and if I do, I'd like to be somewhat ready. This little magalog is a collection of headwear (hats, scarves, wigs, etc) for "medical hair loss" (chemotherapy/cancer) patients. It has a couple of different things I like, at reasonable prices, so I make note of those and keep the publication.
I go to use the restroom, which is down the hall, (not through The Door), and when I come out, the young black girl, who I recognized as the medical assistant I've seen on both of our previous visits and still haven't caught her name, asked me to sit here. "Here" is a large alcove in the hallway with a lab chair on each side of the opening, the chairs facing toward each other, or across from each other. You know, the kind of chairs with the moveable table attached for your arm to rest on while they do their thing. She, I think her name starts with L, did a fine job with the butterfly in the right antecubital and she was done drawing the small purple top tube. She asked if I was ok with a bandaid, and I showed her the fading red rectangular patches of skin where last week's tape was. Oh, she said, and offered the self-stick wrap stuff instead. I asked if I had to wait for the results, she said yes. I asked how long that would be, and she said 3 minutes. 3 minutes? I tried to look around so I could tell you what else was in there--across from me there was a chiller or a cooler with glass in the door, with many shelves kind of close together. And lots of items in it--I'll have to look at it better next time. There's another blood draw lady, too. She has brought in the woman who came in after I did, and had her sit in the vacant chair facing me, and they did their thing. The back wall was counter and cupboards, and the lab machines were on the counters. She turned around, picked up the paper as it came out of the printer, and looked at it. She looked up at me, asked me did I have a shot of something, Neulasta maybe? Yes, I had a Neupogen shot last week Thursday. Ok, she said, looking back at the results. These look pretty good. I ask her can I have a copy of the results? She says sure, and hands me the one she's looking at, pushes a button on the machine and prints another one for the chart. Cool. I glance at it and realize I'll have to look at it at home. I know that I have questions, but the skin on my hand is better today, and since we were about 15 minutes off on the appointment time, I decide to pass on pursuing answers. Thank you, Miss L.
I go out into the waiting room and get Daniel. We go over to Lowe's for a new furnace filter, then home. In the store, I forget, and try to keep up with him. Doesn't work. It's like I get lost in the sensories I'm experiencing. He turns around and sees that I'm about 4 steps back. Sheesh. He smiles, and waits for me.
Back home, we prepare food and get that in the oven. I notice that my breast has been sore all day today. The surgical site, like the breast tissue, or lack of, or the defect, or whatever you want to call it. Not the incision. Firm and feels swollen. And I think the right one is, too. Hey, I check the calendar. It's been 28 days since the last. Maybe it's hormones? Time will tell.
We have a bite to eat, I head to Jackson. Mom is good, I get her fed, washed up, and tucked into bed, and come home. I fussed in the kitchen a little while I visited with Dan, then sat down with a bowl of cereal. Before too long, Dan went off to bed.
I perused the internet for much longer than I should have before writing here; it's now almost 1 o'clock.
Thanks for reading. The threads we are weaving helped me through the door today. I am so blessed for the positive energies surrounding me. Hugs.
Monday, January 21, 2008
I worked again today. Getting to Jackson this morning was just a little adventure--the roads had been salted, and mostly a crunchy wet from the small amount of snow we had gotten. So, as I was passing the semi trucks, there was road spray from the truck tires getting on my windshield. No problem, turn on the wipers and clear it off, with a little spray of the windshield washer stuff. Oh, the squirters aren't working. The squirters didn't work a couple of weeks ago--I thought the solution was gone. And, just by happenstance, I had picked up a gallon of Rainex Windshield Wash just a few days prior to the lack of fluid spraying. I had mentioned to Dan that the squirters weren't squirting, and he, being the wonderful partner that he is--filled the reservoir. And I had used it a few times. Cool. This stuff seems to work ok, streak-wise. But now, no fluid. You know the mess, dried white fan shaped residue on the windshield.
A vehicle passes me, and as soon as it gets by, cuts in front of me. More spray. Well, that moistens the stuff already on there, so I let it get pretty wet and back off, then turn on the windshield wipers. That's better. And so it goes for another 10 miles or so. Someone passes me, cuts in front, the car gets sprayed, I stay in the filthy water to get the windshield wet enough to use the wiper blades, then back off. Out of habit or reflex or just driving response, I pull the lever to squirt the windshield. No squirt, and you know how the wiper blades go across a couple of times and then park? The blades went across and back, and seemed to be getting to their down position a little slow. There's another pick up truck passing me. (I was going 70 this morning...) It cuts back in front of me, and the tire spray thing happens. I turn on the wipers, nothing happens. Oh great. Now I can't see through the mudyuck on the windshield. Here's my exit. I flip the lever for the turn signal. No turn signal. Good!! Dirty windshield that I can hardly see through, and no turn signals either. I'm glad I'm almost there. Of course I have to go into town, and there are often police officers watching traffic. (great, I thought, explain this one...)
By the time I get parked in the lot I have an action plan: I will first call Dan and tell him what has happened, and give him the opportunity to decline a 70 mile round trip to check this out, and second, I will call a couple of my favorite auto repair shops to see if they will come out to the parking lot and take care of it for me. I get a small break in the morning routine, and call my wonderful husband.
"I don't see a problem, honey, what is it that you're worried about?" he responds, when I tell him my travel tale. In my best voice, I remind him that I drive in the dark, with a dirty windshield, no wipers, and no turn signals. Again he queries my concern. I offer my solution of having a local shop come and take care of it for me, and he says he doesn't understand why he can't look at it tomorrow at home in the garage. I say something like "Daniel, as a single girl, this is how I would have solved this problem. But, being married, I am running it by my partner. It's not a problem for me to make a couple of phone calls and be done with it, so that when I get out of work tonight, again in the dark, and cold, it will be taken care of and I won't have to worry about driving without turn signals or windshield wipers." To which he responds with an audible exhale. I'll be down, he says, and take care of it. I thank him, tell him he's awesome, and get on with my morning.
My head isn't quite as overloaded as yesterday, but I still can't walk fast. It's like my brain doesn't process what it sees as fast as it sees it. I consciously slow my pace. I want to be a strong team player, and feel like everyone and everything is moving faster than me and my cognitive processing. They reassure me that I'm doing a great job. I have to trust them that they are ok with my "performance".
Early afternoon I receive a text message to "give me a call". Oh good, that's Dan. I call, and he's just coming to the parking lot. It happens that I am near a window and look out. Oh, there he is, he pulls into the parking lot, I tell him to look left; I had parked in the first space by the entrance for ease in locating the vehicle. He says Oh, and I see him stop his car and start to work his magic. I have other things to do, so I can't watch. I actually kind of forget that he's out there, and I get another text message a couple of hours later. I call him.
"I got the wipers and turn signals, a fuse was blown" he says. There were no extra fuses in the fuse box, and no fuse puller, either, so he had to go buy those things. "And your windshield is clean, too". He sounds most pleased with himself. "Ok, thanks, you're awesome." He said he will have to follow up on the squirter motor tomorrow at home. Ok, great. I feel much better about having turn signals, and wipers, too. My Hero.
The workday continues to be busy, with patients, staff/staffing issues, blah blah, and finally the night shift have arrived, it's time for us to leave. Report takes as long as it takes, and I finally leave the hospital close to 8 pm. I change my clothes and go to the lobby to see the shuttle bus pull away. I bundle up and walk over to my extremely dirty car.
I get over to the care home; it's smelly in there tonight. Mom is waiting for me--I like to tell her it's really cold outside, here feel my hands--and gently put my cold hand on hers. She always responds.... I take care of business there and finally leave for home about 10:00. I call Dan and talk with him most of the way home. When I get there, we visit a bit more, he goes off to bed, and I have to shower, as I got "urined on" when getting Elaine ready for bed.
I want to mention my skin today. The area on the left hand is still reddened, with some small raised bumps, with darker shadowlike areas over the knuckles, and itchy. On the right forearm the reddened area at the end of the iv catheter site is extremely itchy and has developed a couple of bumps. Also, on the way home, I noticed that my left hand is feeling lightly tingly, like it's trying to go to sleep. That's new. Also, something I haven't mentioned, is elimination. As much as I drink, I don't seem to be putting out much urine. And the stool has been really dark, almost black.
All of those things I will be taking with me tomorrow to the 11:15 blood draw. I don't know if someone will actually be checking up on me, or if it's strictly a blood draw, but I will take the opportunity while I'm there to find someone to ask questions of.
Thanks for reading my ramblings. I'm amazed that I feel so good at this point. Yes, I'm a little tired, but overall, in the big picture, I'M GOOD!!! Thank you for the prayers and positive energies. I'm sure they play a huge part, more than we know. Thank you. I've got to go to bed.
Back to work today. I woke to the radio in the middle of a dream. Sheesh. Out of bed, blah blah. Drive to Jackson, road conditions are not cruise control. But I make it ok, and didn't see any cars off the road. I really couldn't look as I had to pay attention to the road. I pulled in the parking lot, and as I was gathering my things, the shuttle bus pulls in. Yea! Thank you, God, for the shuttle.
The workday was very busy, but a good crew makes the day go a lot better. I was surprised that after report this morning I went out in the hall to start blood pressures and such. Whoa--I had to slow down. The bright hallway lights, noises, people, etc... it was a sensory overload. I literally had to stop, close my eyes, and regroup. Ok, I'm not going to be able to "run the halls". So, I took what time I needed, and found that I had to concentrate on very familiar, routine tasks. I am so blessed to have such wonderful co-workers. Hugs, smiles, genuine caring. And every so often throughout the day one or another would ask if I was ok, did I need anything. Wow.
The day went on, we did what we needed to do. It was very busy.
I got over to the nursing home where we needed to wait our turn for the bathroom. I got mom washed up and tucked into bed, then headed home.
My wonderful husband was waiting for me, and is patiently staying up while I tend to this writing. I wanted to mention my physical self--my hips are just a bit achy, my hair is still intact, my mouth is feeling a smidgen better, though the outer edges of my tongue still taste like it's been burned. Nausea? Not really nausea, but intermittent stomach aches, not enough to worry about. I get hungry, and do eat, and I have to eat slowly, not shove it in. Another thing I don't think I've mentioned is a skin rash that's developed on my left hand. Reddened skin, itchy, with some raised bumps. Along the base of the hand/ thumbside on up to and over the middle knuckle of the thumb. This showed up about maybe 4 days ago--not the bumps, but the dry itchy reddened skin. Sometimes the skin looks even like it has a dark undertone to it. Of course I've put stuff on it, but it doesn't seem to be helping it. And the iv site on the right forearm has that reddened area that is now drier, firmer, and occasionally itchy. I'm not bothering that one, though. The redness is not at the insertion site, but where the end of the catheter would have been. Yeah, well, the stuff is supposed to kill the cells....
Off to bed with me. 0410 is closer than I would like.
Thanks for reading, for your kind words, hugs, genuine concern.
About 0330 this morning, that was enough. I got up and took a couple of tylenol. My hips hurt, ached reallly, I was restless. So, after 20-25 minutes or so, I settled down and went back to sleep. Of course, the tylenol had worn off, but I wasn't nearly as uncomfortable.
We had a quiet morning, taking turns with the heating pad. Daniel has had a sore lower back for several days (he's changed his golf swing...) and not much seems to help comfort-wise.
After a while, I take myself to the clubhouse here to try a bit of exercise. It is snowy, 20 some degrees and gusty. I think it would be better to try the treadmill instead of going outdoors and maybe getting a mile or so out and getting in trouble. And the cold stress, too. So, I go to the clubhouse.
I am disappointed that I can't open any of the 3 sliding glass doors. I know, it's cold out, but it smells like an exercise room in there. And I prefer the fresh air. I get on a machine and do what I can. I ended up about 35 minutes and jogged most of the time. I guess I did pretty good. After I got home, though, I wondered if I did, or if I hurt myself. I have not been fond of treadmills, or any type of machine that strides; my hips get really sore. And that soreness set in. I took another couple of tylenol, laid on the sofa with the heating pad on my pelvis, and a bottle of water. After 45 minutes or so, I had to get in the shower. I would have rather had a nap. But I got cleaned up, had a bite to eat, and left to go to Jackson.
Mom was good, ate well, and I got her tucked into bed and came home. My hips are still sore, but not like they were this afternoon. I took another couple of tylenol, and am heading off to bed soon.
I go back to work tomorrow, Wednesday, and Thursday. I'm a bit anxious--I don't know how my energy level is going hold up, or my brain, either. I certainly want to be a capable teammate. I still have my hair, though it seems to be dull, and my mouth is somewhat better. I did notice that the IV site is reddened. Not the poke hole, but where the end of the catheter was in the vein. Maybe 3/4 to 1 inch long. I thought of calling the office, but I wouldn't be able to go in until Friday, and I have a lab draw so I'll be there anyway. Maybe I'll see what the iv therapists at my place think of it.
Ok, I'm off. Thanks for reading my ramblings.
Sunday, January 20, 2008
Woke up, pretty achy in the hips, and my face/sinuses hurt. I don't think it's really sinus pressure, though. I had a couple of tylenol and a couple cups of hot tea with my breakfast. I felt a little better after a while. My scalp is still a little tender around the perimeter, and my tongue still feels "burnt" around the outside edges.
Dan and I ventured out to Meijer, a local grocery store. I did ok--I thought I was "fine" until we were actually in the store and making selections. My brain seemed a little slow to make decisions/choices, to process stuff. And moving--the store was very busy, lots of other shoppers--Dan was walking ahead of me, I couldn't go that fast and have my brain keep up. Very weird. Not like drunk, not like really tired. More like slow, fast, spacey, all at once.
We finished that event and came home, I prepared food for us. We ate, I went down to Jackson to feed mom and tuck her into bed. Back home, I'm a bit tired.
Overall, I think I'm pretty good. Now I have questions, like will I feel worse in the next several days? Will I handle the next treatment as well? Are the effects cumulative as the treatments add up? And what about my hair??? Sheesh. It's hard to just "let it be" and not wonder....
Thanks for reading, for wondering with me. Hugs.
Wow, what a difference a day makes....
I'm feeling MUCH BETTER today!! My head is not so foggy, and even though I'm not moving quite as quickly as "normal", I'm moving. My scalp is still sore, though not as much as yesterday, and when I tugged at my hair it is still intact. My mouth is feeling better, too, with the soreness along the upper toothline, towards the back inner gumline, like where your tongue rests. It still "tastes" funny, but not like the last couple of days. And just a bit queezy.
And, while I know it's way early in this treatment process, I am thankful that I'm not down in the bed, with the horrible nausea and other side effects that can happen. Thank you, God, for the gifts you've given me.
I wanted to write this morning to let you know I'm feeling better--I appreciate all of your prayers and thoughts and warm fuzzies and worrying about my not feeling well. Thank you for sharing your energies... Much love to each of you.
Saturday, January 19, 2008
I slept a lot better last night, and dozed for quite a while this morning. I was very surprised when Daniel got up--it was almost 10:30! I checked myself--yeah, still a little achy, ow, my scalp hurts. I pulled a few strands of hair. Boy, that's really tender. But nothing came out. Yet. My scalp hurts like when you have a ponytail in too tight or too long. Ok, good. Not nauseated, though my mouth is a little sore. The biggest annoyance is my face. It feels like sinus pressure around my eyes, forehead, cheeks. Yo, that's really uncomfortable.
I get up, hm, moving a bit slow. Yeah, but still moving. I wash my hands and face, brush my teeth. The inside of my lips are peeling, or shedding a thin layer of skin. I'm hungry, and I'm thinking of something soft and warm. So I make some Malt O Meal. That did pretty good, but I had to eat slow. When it got in my mouth my tummy said, what?? I did ok, just had to eat slow.
We didn't do a lot today. I found myself tipped over on the sofa with my eyes closed. I asked Dan if I should be doing something--he said yes, I needed to be resting. Ok, then, I think I can do that. I took a couple of extra strength tylenol to see if that might help the general aches in the big joints and inside the big bones. My shoulder aches, too. The tylenol did help, some, though not as much as I had hoped. I've been trying to drink water, and it tastes like mud. Kind of like when you burn your tongue and you can't taste anything, but there's an acrid taste, too.
About 3 pm I rummaged around for a bite to eat. I found a pannini in the freezer. You know, a microwave sandwich. I was a bit reserved as to how that was going to be in my mouth, but I decided that if I couldn't eat it, I wouldn't. My mouth isn't that bad. The first bite felt sharp, almost abrasive, but after a few chews it was ok. When I finished the sandwich there were small pieces of tissue shreds on the inside of my mouth.
I went to Jackson, got mom fed, washed up, and tucked into bed, and headed home. I'm hungry again. I cooked some cauliflower, and had some baked chicken. That was pretty easy on my mouth.
So today's wrap up. Mouth and scalp sore, body ache, still hungry and able to eat. Tired. Daniel is fantastic. So are you. Thanks for reading.
Friday, January 18, 2008
Didn't sleep much last night, maybe 3 hours or so. I put the earphones on and listened to NPR, which usually lets me doze, and I probably did until I turned it off about 0730. I slept another hour or so, and saw that day had dawned clear, the sun was shining.
I took stock: didn't hurt, my hands were a little stiff but the swelling was much less. That was encouraging. Ok, what about the hair. I reach up and pull. Nope, still there. Dan smiles.
I got out of bed. Hm, kind of slow, like my head is slower than my body. Interesting. I'm hungry, but not quite ready to eat, so I try some water. Eww, that didn't go well. I brewed a little, and that tasted much better. I actually had about a cup and a half. Then I could drink water. The sun comes in the living room, across the sofa, and I sit there like a dog in the sun. Mmmm. That's nice. Dan mentions that he wants to go to the chiropractor today, that he's in the office after 12:30. He goes to shower.
Ok, I go next. It's about 11:30 and I'm ready to eat. I create an omelette of asparagus, tomato, cheese, and chicken. Yum. We share it, then head over to the chiropractor.
Dan goes first, he's really out of whack. Dr puts him back together and it's my turn. He watches me walk-whoa, he says--you're really out of it. I think, I am? I thought I was doing pretty good. He sits me down, checks the lymph nodes in the neck and down to the clavicles. There is a larger node on the left side and he pushes on it. I stop him, that's on the operative side. It hurts. I tell him about the surgeries, the nodes being removed, and he touches that area again. It was a little less congested, and he massaged it a little more to move the fluid from it. I tell you, I'm guarded about those lymph nodes. But I think he did ok. He run his fingers along my spine, pushed a little here and there, used some kind of implement that had alternating pressure, and I really think that he did some good. He helped me stand up, and I felt like my head was on straighter. Dan and I left, went across the street and browsed through Kean's for a few minutes, then went back home.
I went up to the loft where it was a little warmer and laid down on my sofa, with my afghan, and snoozed for an hour and a half. I felt a little more rested, but also that I was like trying to get sick or something. Kind of achy. Dan says that's one of the side effects of the Neupogen shot I got yesterday. Oh goody.
I put a few tater tots in the oven, thawed some shrimp, and had a bite before I went to Jackson. I was ok, just a little punky. I felt better after eating.
I fed mom, got her tucked in, and came home. My "ride home" apple didn't taste very good, and the inside of my mouth felt a little tingly while I was eating it. I ate it anyway. As the evening has progressed, I am getting more tired. I'm ok sitting here, with the warmth of the laptop on my legs, and the heating pad on my shoulder, but my face feels like sinus pressure, my throat is a little irritated, and my lips feel a little swollen. My scalp is getting tender and my shoulders across my back are a little sore, too. Hm. We'll see what happens.
I am thankful for the medications and treatments to rid my body of cancer. I know it's way early in this treatment process to worry about getting to the end, and that it will probably be a horrible process. But, with God's help, your continued weaving of my colorful hotline, and our positive attitudes, I will be ok. Thank you.
Thursday, January 17, 2008
I slept ok, having just one biological interruption during the night. I'm surprised, with all the fluids I had, both IV and oral. I woke up before the alarm went off. Hmm. I feel ok. And you know I reached up and tugged on my hair. Nothing came out. (yet) I looked at my hands. They were still a little stiff and swollen, but, ok. Ok, out of bed. My face feels like it's windburned, and I see in the mirror it looks a bit flushed. Hm, must be the meds.
I did my thing, Dan did his, and before long, it was time to leave for our 10:00 appointment for iv fluid hydration. We get there about 0950, and the lady behind the window, who I recognized from yesterday, acknowledged that I was there. I told her my name, she said don't sign in, and she came around to The Door and led us back to Room 3 today. A brighter corner room, with 2 windows. A flat screen tv was mounted on the wall, maybe a 26 inch or so. Daniel's eyes lit up. We got situated in our chairs. He's such a good assistant--he got the blanket out of the bag we took and covered me, got the pillow for under my arm, and moved the little table around for me. He also got out the other books I had brought, but I told him I wasn't quite ready for those yet. We sat and visited, and waited.
Rose came in about 10:10. She unwrapped the iv site and screwed on the saline flusher syringe, and gently pushed. I didn't realize I was holding my breath until I saw that the plunger was almost down to the hub, having pushed in most of the 10 ml of fluid. I told her that it felt wet--we both inspected it, but there was none to be seen under the tape. It was just cold. I mean room temperature. She pushed the rest of it, and she was confident we had a good site. YAY!!!!! The needle's good!!!!
She added a 1000 ml bag of 0.9 normal saline, wide open. It dripped, but not yahoo like yesterday. She raised the pole some, said it would work, but if it doesn't pick up, we'll do a new site. Ok. She said we'll let gravity do it's thing. I told her my face felt windburned, she looked at me a little more closely and said it was the decadron, it will do that. Ok. She left the room, and after a few minutes the rate did increase, and I counted 83 drops per minute. I hope that sucks in fast enough for her. She returned at 1030 with the heavy gloves and a small 50 ml piggyback bag of stuff. She looks at the rate and says, "Ok, good. No new needle." And tosses the gloves onto the counter. Rose added the piggyback to the bulk, saying that this was a mixture of Aloxi 0.25 mg, and Decadron 10 mg. I guess I didn't hear the part about getting drugs today, but Dan says he did. (go, Dan, that's why you're with me, to hear the stuff I don't. Thank you God for sending me Daniel...) Rose has both bags infusing.
And I have to urinate already. (1050). So, I see that the piggy is almost done, and I think I should probably go before I need nurse attention. I ask for Daniel to help with the chair, as the lever for the footrest is on the right side and I can't move it with the pillow and the iv tubing blah blah... He gets up and helps me uncover, moves the pillow, and the little attached table, and I rattle off down the hall. Back to the room, we reverse the process and pack me in again. The piggy is done at 1055, and of course the bulk is still running. There is a break in the clouds, and the sun shines in on me. God smiles--He knows I love the sun. Dan asks if it's too bright--no, I tell him, I'm like a dog in the sun, belly up. The warmth is welcome, and I close my eyes to bring myself to the moment, with the colors you've brought in my mind's eye. Thank you God.
We are in the corner room, which is across from the nourishment area. There are two treatment rooms yet to our right, and between staff and support people, and patients rattling to the bathroom, it's a busy doorway. I recognize Helen from Billing from yesterday, she's looking for coffee, but there's not much left. She smiles at me and I ask her if she's Helen, she says yes, and asks if we'd called about the genetic studies. I told her we did, and she said let me finish this coffee pot, I'll be right in. I like her, she's got priorities... She poured the water into the top of the machine and came in.
I showed Helen the notes I had from the conversation with Stacy at BCBSM, and she laughed and said ok. I will need an appointment with Michelle Fedewa, the genetic specialist there at the office, after a referral from Dr. Bolmer. Yes, that notation is already in the chart. (I have a copy of that page...) Ok. As soon as Michelle sees you, she'll let us know what blood studies we need done, what lab they need to go, and we'll figure out how to code it for best payor coverage. Allright. Sounds like a plan.
The smell of fresh brew brought Rose down the hall, Helen went out to get a cup, and Rose came in to check on the iv level. We had mentioned earlier to Rose that we'd like to be out by 12:10 at the latest, as Dan had a 1:00 appointment. She looked at her watch and again at the fluid level in the bag. Ok, she said. Ding your bell at 12:10 if I'm not back then. Thanks, I said, and smiled at Dan. She left. I had been to the bathroom again about 11:20, but it's now about 11:50, and you know what's happening. I tell Dan I'll go now, so we won't have to stop on the way out. We unpack me, I join in the parade of the iv poles to the bathroom and back, and we pick up our things and get them back in our bag. I Ding The Bell at 1205. Phyllis came in--you remember Phyllis. She showed us around after our first Dr. Bolmer appointment. I told her we needed to leave by 12:10, and even though there was about 100 ml left in the bag, I could drink that much. She smiled and proceeded to take the tapes off, unclip the tubing, and remove the catheter. Yay!! I got through this one. Oh, here's your injection of Neulasta. It's a drug that stimulates production of neutrophiles in the blood. (they are one of the types of white blood cells to help in fighting off infection) Ok. She gives this injection on the back of the upper right arm, like under the arm. Hm. That's a different site.
We're all set, and Daniel helps me with my coat, and we weave back to the window to check out. We pass Rose in the hall, I tell her Phyllis came in and gave me the injection, and thanked her for taking good care of us today. You're welcome, she smiles. We're given the all clear to go at the window, and go out to the car and head home. Dan pulls up and lets me out at 12:30. He's happy to be able to make it to his golf lesson on time.
I get the mail and go in, I'm chilled. Next time I'm taking my heating pad. I use the bathroom again, then go back out to the kitchen to suck down the remaining 100 ml, and more. Believe it or not, I'm thirsty. I putz around the house, had a bite to eat (though I don't remember what it was, maybe I didn't...) and got ingredients gathered to make chicken enchiladas for us. I sit down for minute and put the heating pad on my left shoulder/breast area as it is aching from the coolness. After warming that up, I get the stuff made and into the oven. Daniel comes back smiling. We visit, I make a grocery list, food's done, we eat, I leave to go to Jackson. Why not, I'm not feeling bad or anything. I'm kind of restless...
Mom is surprised, I think, and she watches me for a long time as I feed her and tell her about the last couple of days. Every once in a while she m,m,m like she does, and I talk to her like I know what she's said. I like to think that every once in a great while I figure it out... I get her washed up and tucked into bed. She closes her eyes after I give her a hug and a kiss. I hope she had a couple of good days, too. God, take care of her.
Off to Meijer to get groceries, (why not, I'm feeling good) I'm back in the car at 9:40 pm. It's a blustery winter night, trying to snow. When I call Dan to let him know I'm on my way home, I ask if he would be able to help with groceries. Sure, he says, see you soon. He meets me at the back door and I give him several bags to carry up, while I gather the rest of them. He and Breon make quick work of emptying and putting away, while I go to the bathroom again. I have drank 2 bottles of water this afternoon/evening, and am looking for more.
My hands are starting to swell some, the fingers are all tight. Almost blanched looking at the knuckles. My face feels puffy too, and a little windburned. But I still feel good, not nauseated, and normal, end-of-the-day fatigue. Thank you God for taking care of me.
Bless you all, dear readers, and all of those non-readers who have helped me these last 2 days of new doors and unknowns. This journey-walker sure has one wonderful, colorful, incredibly strong entourage surrounding her. Thank you for accompanying me.
Wednesday, January 16, 2008
I DID GREAT!!!!
Ok, you know I'm wanting to tell you the whole story, and that I tend to get a little wordy, so I put the best news first. And here's how it went...
Dan and I got to Dr. Amy Bolmers office on Lake Lansing Road at 10:00 am, our appointment time. I signed in, and we had a seat. At 10:20 my first name was called, and we were taken "through the door" and shown to Room 5. (This was the younger black girl that did our initial stuff at our first visit. She did not have a name badge, nor did she offer her name. She was out of the room lickety-split, no weight, no vitals, no nothing. I thanked her anyway. While we were waiting for the next person, I took a look around the room. This looked much like the treatment room we were shown before, with the recliner, 2 side chairs, wall-mounted tv, a magazine basket (with current publications), and of course the IV pole strung with 0.9% normal saline. There were 4 watercolors on the walls, and I said what the subjects were outloud. Dan looked at me funny; I told him I had to remember what they were so I could "blog it". "Oh," he smiled. Each watercolor consisted of a female playing a musical instrument. One with a large set of bongo drums (what are those called?), one with a flute, one a guitar, and the other with a violin. A little abstract, with muted colors of blues and violets, I think. I got up to use the bathroom, which was directly across from Room 5.
Rose came in, the RN who would be working with me, and introduced herself and gave us a rundown on the procedures today. She started with the IV--tourniquet on, looking for a suitable site. I told her my veins were poopy, she asked about a port. I told her of our first visit, when Phyllis had shown us around, and Phyllis thought we would be ok, and that we could do a port at any time, if needed. Ok, she breathed, and kept feeling my arm stroking the veins on the inner forearm, turning my hand over and looking at the back of my hand, then going up to the antecube (inside of the elbow). The conversation had come to the possibility of leaving the needle for tomorrow. She was not real gung-ho about leaving it, but I told her I'd like the opportunity to try, and if I lose it, I lose it, I'll have to get another poke anyway. She moved her focus back down to the inner forearm then, saying that since I have such a good attitude about the likelihood of needing another site, and she hates to send people home with an antecubital needle.... She successfully started a 24 gauge angiocath in the inner forearm, about 3 inches down from the inner elbow, with just a bit of maneuvering after getting through the skin. Good blood flash, Whew. That's in. And it really didn't hurt too bad.
Rose applied an adapter to the hub and pulled 3 tubes of blood, 2 purple tops and a green. Of course, with the small catheter, the vacuum can collapse it, and Rose was very diligent in the collection process. All went well, and as another nurse had stepped in, in just a timely manner, Rose asked her to find a cap for my IV, and she rummaged around in the drawer. They didn't find one, so the other nurse went out of the room, located one, and brought it in for us. Thank you God, for sending in the other nurse. With the cap applied, the IV solution was added and the roller clamp adjusted to infuse quite quickly. Rose left the room with the blood tubes, it was about 1035. At 1050, you know I had been watching that drip rate, and saw that the level was getting low, and yes I did, I turned it down. Rose came in and changed/added another 500 ml bag of NS. She touched the roller clamp, but did not increase the rate back up. That ran for another 1/2 hour, and in the interval, I had to urinate again. I know, but I've been hydrating for the last 2 days, enjoyed my fresh brew this am, and have another 250 ml directly added to my bloodstream... By the way, that solution was "room temperature", and my arm was cool, and my hand was freezing...
Rose came back in about 11:25 with the cocktail: zofran 32 mg, benadryl 25 mg, decadron 20 mg, and tagamet 300 mg, all mixed into a 50 ml bag. She hung that as a "piggyback"--one bag is hung higher than the other, and clipped into the main tubing. When the upper bag is completely infused, physics takes over, and the lower bag starts to run again. The adjusters/roller clamps can be adjusted to run the top bag or both bags, depending on the level of the bags and how the roller clamps are adjusted. The cocktail ran in within 30 minutes. She also had prescriptions for nausea-Compazine and Zofran, I think. During that time frame, Rose asked if we had received any of the stuff they hand out to their patients. No, I replied, we hadn't received anything. She asked if I needed a blanket. Yes, thank you, I replied, and she explained that there are blankets in the room here, but the drug reps bring in blankets for the patients, as well as lots of other things... She trails off and goes out of the room. She returns with a hot pink fleece blanket, with the word Herceptin very nicely embroidered on one corner. She opens it--it's about 4 x 5 feet, and covers me up. That's nice, thank you herceptin person. We talk about the HER-2 receptor status of my tumor, which was negative; herceptin is the follow-up drug for HER-2 positive tumors. So I will not be receiving that drug, I get tamoxifen for 5 years. Rose goes away again and comes back with a cookbook, a pink shoulder pack stuffed with handouts, and a package with a thermometer and literature in it. Whoa. All this, for chemo. She goes over the instructions for the Compazine--you probably won't need anything for a couple of days, but go ahead and get it filled so that you have it. Ok. She also tells me about the Zofran--don't take any of that for 2-3 days, as the dosage that's infusing now will be working for that long. Oh. I wasn't aware of that kind of usage. And I'm consciously thinking that Hey, do you know that you're infusing this benadryl and decadron, it's about half in, and I might be a little woozy or snoozy or something?? These instructions kind of got lost on me. I hope Dan's paying attention. I also ask for a copy of the lab results that were drawn today, and she says that only the CBC is resulted here, the others go out to the lab, but she'd be happy to bring me a copy. And next visit, just ask for those other results. Ok, thanks.
I am feeling a little woozy, like maybe a Long Island Ice Tea sucked down, (only once, I knew that that could be trouble...). It's probably the decadron and benadryl; I've had each of those before. The decadron for sinus infection, and benadryl in recovery after the first surgery, and I remember those sensations, maybe not as acutely as now.
I have to pee, (again), and think I'd better go before this bag is done and the next stuff is hung. I carefully get up and weave myself across the hall and into the bathroom, take care of business, and look at myself in the mirror. Funny, don't look different. Back into the chair, and my wonderful husband adjusts the footrest on the chair, covers me with the blanket, and adjusts the little tray table thing that's attached to the arm of the chair. Thank you, Golfer Dan.
Rose comes in with a bag in her hand as I'm about settled in the recliner, checks the cocktail,
it's done, and adds the new bag to the mainline in the lower port/access site. She says this is the taxotere. I ask her the dose, it's 125 mg in 250 ml of NS. She runs it slow to start, and I see that she's also got the mainline (plain NS) running a little, too. I check the clock; it's 12:00 noon. I ask how long this takes to infuse, she tells me an hour for the first time, they run it kind of slow to watch how you tolerate it. Ok. So she'll be watching me. That's good. And she leaves the room.
I wait for several minutes, look up, yep, still dripping. I'm doing ok, no tightness in the chest, I'm breathing, not sweating or breaking out in an alien rash. Must be ok. Good. I check the clock, check that it's still dripping, check the level, check the iv site, check myself. Several times. Still good.
About 1:00, the level is getting low, and Rose comes in to check it. She did come in about 15 minutes after it started and looked me over, then each time she passed the room, I saw that she did a visual on the bag. She asks me to ding the bell (yes, a little silver bell was on the table, the kind with the thingme on top to tap) when it was done infusing. I said I would, and about 5 minutes later, I tapped the bell. She came in a few minutes later, I told her I dinged the bell, she said she didn't hear me ding. Oh, I said, and then said out loud, "Ding". She smiled.
She closed the roller clamp for the taxotere, and added the cytoxan to the tubing that had the cocktail on it. I asked the dosage: 1020 mg, or 600 mg/meter squared, in 250 ml of fluid. She said this one runs in over an hour, too. Ok. Rollin'. So far, so good. I also noticed that I had a full bladder again, so before too much of that got into my system I once again got up to the bathroom. I was less high, and felt like I was walking much better. (the real question is, was I walking any better?) I checked the mirror again, I was still there. Dan and I had been chatting about various topics, catching up on some of the happenings, looking at magazines, looking at the television. I watched the toxic fluid drip into my vein, and after about 20 minutes there was a little redness of the skin, near the end of the catheter I was thinking. I didn't hurt, wasn't puffy or anything, so I left it be and looked at the clock so I would be aware if I checking it like every 30 seconds or something. The next time I looked at it and poked at it, Dan asked me what I was doing. I told him I was just checking, it seems to be ok, no problem, just maybe a little local irritation. But I'm keeping my eye on it, it's ok. Oh, he says.
The staff is talking about breaks and trying to send each other to lunch and finally they get it worked out. Soon the microwave is wafting out microwaved food odors--my tummy rumbles and I realize that I'm kind of hungry. Hm. Maybe if I'm still doing ok we could stop somewhere to eat on the way home... Rose pauses by the door and eyeballs me, eyeballs the bag. She had mentioned conversationally that they have had 30 patients today, and are finally winding down. I am only too familiar with 1:30 lunches after an 0515 breakfast...
At 1420 the cytoxan has infused, I've only checked the site about 1,255 times, and my hair hasn't started falling out yet, either. I'm not nauseated or sleepy, but I am hungry and a bit "jiffy". (that's the benadryl, and maybe the decadron, I know that benadryl is used as a sleep aid, too, but not for me...) I had mentioned to Rose that I had a couple of questions, but could only remember one. Now I remembered the other, and as she closed the clamp on the drug and opened the mainline further, (there's about a half a bag left, maybe 225-250ml) I ask her about the genetic studies. Oh, she says, and we talk about how that came about, and that she would ask someone in Billing about it. She goes out, saying we're just about done, and that I've done real well.
A few minutes later, Helen from Billing comes in, and asks me about the genetic studies, which she terms "counseling". We talk about our insurance coverage, and she refers me to call BCBSMI to find out if it's covered. Ok, thank you. She leaves, Dan gets on the phone, and calls Blue Cross. After getting through the phone tree and waiting for the next available specialist, she comes on the phone and tells Dan this is not the right number and tells him what the right number is. He is irritated and hangs up. Oh. Yup. Time to eat... And about the time that exchange is happening, Rose comes back in and disconnects the mainline. Yay!!! She flushes the port with heparin and wraps the site with a length of self-adhesive stretchy gauze stuff, bright pink, to help protect it, and declares us Done. Stop at the desk on the way out to pick up your appointment times; Dr. wants a lab draw next week, and she will also see you on your next infusion day. Ok, Thank you again for your kindness. She smiles a weary smile at us. It's about 3:00.
At the front desk, the girl who showed us into our room asked my name again, and handed me a printout of the appointment days and times they had already scheduled. Well, you know me, let's look at these and see if they work. Tomorrow, Thursday, IV hydration, 10:00. Yup, got that one. Next week, lab draw, Wednesday. Nope. Work day. (I hope. Ever hope to be able to go to work...?) I offer 2 alternatives. She counters back that either are available. I ask what is the interval that a lab draw is generally scheduled, she answers 10 days, so I go for the Friday, 11:30. Next, the next treatment sessions. February 6 for chemo at 10:30, and February 7 for hydration, 10:30. I smile and thank her, and we leave.
Wow. I'm feeling pretty good. Just a little buzzed up, but (I think) functional. We head to the car, the fresh air feels good. I realize I haven't urinated for a while and think that it's odd, what with all the fluids I've had. Let's see. 1300 ml in 4 hours, that's 325 ml/hour. I don't think I went to the bathroom that last hour. Interesting.
Oh, here we are at the Flap Jack Shack. Cool. We order, eat, drop the scripts off, and head home. Dan does his thing, I do mine. I write here which takes most of the evening. He has gone to bed long ago, catching up from his travel.
I am watching my hands, as my fingers are getting "tight". I have had another 32 ounces of water, plus about 6 of milk with a pb & j sandwich, and have started urinating again. Hmmm.
I'm about ready to go to bed, it's 11:30 again. Tomorrow is IV hydration at 10:00. I hope that all goes well and the story isn't so long...
Thank you for your prayers and support. That hotline was lit up. And I did need to visualize the colorful path you have created for me. Several times. As I closed my eyes and breathed, I imagined that I had given you each a different color of embroidery floss, or ribbon, or strip of fabric, or piece of rope, all in different diameters and lengths, and that when you are praying for me or wishing me well or sending me energies from your home to mine, your individual pieces of threads have woven together and created a strong mat or cloak to stand on and/or surround me, whatever I need at that time. You are all so awesome in your powers. Thank you, God, for creating the gifts of the people in my world, for giving them each their own special color, and letting their gifts help You to help me. Amen.
Tuesday, January 15, 2008
I worked today, the roads were mostly yucky with a light coat of compacted snow in the main tire tracks. Driving required the majority of my attention, and both hands on the wheel. Do you mostly drive on the freeway with one hand? I found myself dropping one hand off, then putting it right back on the steering wheel. I got there, parked, and the shuttle arrived to take us over. So far, so good.
We had a good group today, and 2 orientees. And 3 students in the morning. Then we had a flurry in the afternoon, and got sorta busy. My new person, Christin, did a good job, as did Kris' new person, Sheryl. Welcome.
Of course I went to the nursing home, they had a couple of call-ins, so they were each working with a long list of residents to care for and put to bed. It saddens me that we Americans don't care for our elders any better than this. Mom and I, we do the best we can.
I came home on cold, dry roads and putzed around the house, Daniel called to say they'd landed and that he would be home soon, and wrote here.
I feel good (as I can) about going tomorrow. About mid-afternoon I decided that there were lots of people praying for me, and that the hotline was lit up. I visualized it as a colorful ribbonlike path or tether from me to God, and the prayers were keeping it strong and colorful. I choose to trust that my "hotline" will remain bright and safe, and that the infusion will go well, and I will stay on track, and that if I wobble a little, my caregivers will steady me, take good care of me, and keep me safe. That said, Thank you so much for your hugs of sincerety, care, and concern, the encouraging words, and your friendship. If I have an opportunity I will write before I go, and depending on how I feel tomorrow afternoon/evening, I'll write again.
Much Love and Appreciation, Kathy
Monday, January 14, 2008
We had a good day at work. Kind of busy, but not overwhelming. I left there and went to the nursing home, where mom was sound asleep in the recliner. It took several minutes to wake her, and I wonder now if she was "possum sleeping" for a few minutes. You know, awake but pretending to be asleep. I told her I had some water to sip on, and held the cup to her mouth, and she drank! She sure looked asleep... Anyway, I got her washed up and ready for bed and tucked in and headed home.
Now the snow was still the fine stuff, and of course the roads had not been salted. Probably because of budget cuts blah blah. The roads required a little more attention than talking on the cell phone, looking for that CD, aw heck, just change the radio, and don't I have a snack in here somewhere..>? And other drivers were zooming along like it was dry pavement. I didn't see them off the road anywhere, but I wasn't about to take that risk.
Got home, tidied the kitchen, did a couple loads of laundry, and wrote here. Time for bed, to get up at 0410. Eewww.
Again, thank you for reading. And commenting. And the hugs, and all the kind words, all the support you offer. I'm feeling pretty good about Wednesday.
Sunday, January 13, 2008
Frank came into the nursing home for a short visit, Mom was good (meaning that she was somewhat alert and vocally responsive). I got her fed, washed up and tucked into bed and came home.
Tomorrow, Monday, and Tuesday are workdays, Dan comes home Tuesday night, and we go to the first chemotherapy appointment Wednesday morning at 10:00. Yes, I'm anxious, and I think some of my fear is not knowing how this body is going to react to the poison. I am praying for the peace of trust in God and the caregivers who will be working with me. It is beyond expression how important all of you are; how much strength and reassurance I receive from your hug or comment or email or phone call. Thank you to each of you.
Saturday, January 12, 2008
I enjoy my time with Leah, who is helping me immensely with this cancer process, as she has many other clients with cancers, both healed and active. Thank you, Leah, for your professionalism, kindness, and reassurance. And for taking the stress from my shoulders.
Back home, I continue the relaxation process with a warm shower. Have a bite to eat, and head to Jackson to meet my friend and co-worker MaryLynne (you may remember her--she rewrapped the ace wrap for me one day) to discuss some ideas for nutritional support.
Yes, Kim, I am concerned about what is about to go into my body. And I think I've done a pretty good job through the years in limiting preservatives, over-processed foods, and keeping active. I also think that "western medicine" has its place--after all, my cousin Marian, the only female cousin on my Dad's side, is a Breast Cancer Survivor of 4 years, having had similar treatments as I'm about to experience.
So far I've chosen to add the acidophylus, which is the active organisms in yogurt, to help protect the mucus lining in the digesive tract. (A lot of patients get horrible mouth sores, maybe I'll be able to prevent them?) Also a beta-carotene to help the immune system that's about to get knocked out. Perhaps I might have done something a little more aggressive, nutritional support wise, if I had a few more weeks to build up. But my thoughts are that I'm pretty stable now, and don't really want to get the boat started rocking before the wave comes in. I hope to be able to choose healthful foods even if I'm not feeling well. And I still like the peanut butter that needs stirred...And chocolate.
I got to the care home to feed Elaine, who was watching the door waiting for me. I fed her and got her ready for bed and tucked in. She was somewhat responsive tonight--my Frank called, and I put him on speakerphone so she could hear the conversation. When he said he would come in tomorrow night, she nodded her head yes. I was kind of surprised, because the statement was kind of in the middle of the paragraph, yet she picked up on it.
I left to come home, and stopped at Lowe's for a furnace filter, new evaporator pad for the humidifier, and light bulb for the microwave. I had a nice conversation with my brother Tom on the way home, then called Daniel. He's enjoying the sun and warmer weather and soreness from golfing so much. (Is that a little violin I hear...?)
Thank you all for reading, for supporting me/us on this journey. You are truly gifts from God.
Note to Upnorth Annie, who added a comment to "Wig Shopping, Day #2" : please contact me by email firstname.lastname@example.org (that's an underscore between the names-it gets lost in the underline)
Friday, January 11, 2008
I went over to the nursing home, and mom was better tonight, responding to questions. I got her ready for bed and tucked in, then came home myself.
I got the mail, had a snack, checked email, and wrote here. I'm tired, and going to bed.
Hope your day was uneventful, too. Prayers, blessings, and hugs, Kathy
Thursday, January 10, 2008
She was quiet tonight, unnervingly staring off into space like she was watching something or someone. Every once in a while she would smile, or have other facial expressions. It was kind of interesting to watch, but creepy too. And all the while she opened her mouth and ate dinner. We did the whole washing up process without much noise from her, until she was actually tucked into bed, at which point she was vocal for only a few minutes. All part of the process, I suppose.
I came home in the rain, checked the internet, and wrote here. Daniel got to Florida without incident and is eager to spend his time at the golf courses with minimal interuptions. I'm happy that he had the opportunity to get away--he's been great with our disease process, and it's all part of the balance to take time for himself.
Tomorrow is workday for me, and I'm off to bed. Thank you all for reading. Your kind words, hugs, smiles, and support is so very welcome, and helps me feel I can do this. God has blessed me with you.
Wednesday, January 9, 2008
I showered, had a bite to eat, and went to Jackson. Fed Mom, visited with Jim and Polly (my brother and sister-in-law), got her ready for bed, and met my wonderful husband at Olive Garden for dinner, yum, and came home. Daniel finished getting his things packed for his golf trip to Florida tomorrow (he'll be back late Tuesday night, just in time for my chemotherapy on Wednesday), I wrote here, and we turned in.
Thank you all for reading. I hope you were able to enjoy the bright, warm sunshine, and thank God for another beautiful day.
Tuesday, January 8, 2008
Had a busy day at the hospital, again with a wonderful group of co-workers. I love you girls, with your comments, smiles, and hugs. It's interesting that a few ideas are that I might forego a wig altogether, chosing instead fabric (scarves, bandanas, hats), earrings, and makeup. I appreciate your egoboosters. We'll see how things come out! (pun intended)
Mom was very responsive tonight, the staff was too. That makes my evening much better.
I visited with Breon and Daniel, they went to bed, and I'm writing here.
Have a great day, and please come by again.
Monday, January 7, 2008
Thanks for stopping by, sharing my unexciting writing tonight.
Sunday, January 6, 2008
I went to Jackson and back in the fog, and that's about it for today.
Thanks for reading.
Saturday, January 5, 2008
One of the Comments about the wigs had a couple of good questions that I'll respond to here.
"Does it feel weird on your head?" Yes, probably because I don't wear hats or headbands or barrettes or anything. And the most surprising thing was that even within the same line, the Sophie style, for instance, the caps were a little different on the inside, so they felt different. Even with the nylon cap on my head. I'm sure they'll feel even weirder without hair... And there are wig liners to put on your scalp for comfort or to adjust fit.
"Try a Cher style..." On Shopping Day 1 Crystal had brought in a long haired beauty, just to try on. It was horrible. I thought I would love the feel of the hair, but it was the synthetic hair, and very thick. When I tried to move it around, you know, like fling it back over my shoulder, it stuck and was static-y and fly-away. It did not move well at all.
"How many wigs does the insurance cover?" Unfortunately, BCBSM does not cover hair prostheses. It does cover 2 breasts and 2 bras per year, but no hair. Fortunately we have a cancer insurance plan, and that pays $300.00 for a wig purchase. So, it's not about how many wigs get reimbursed, it's how far can I make the $300.00 go. Curious as to costs? Google wigs and look them up.....
There are wig styling products, too, like mousse, styling spray, shampoo, sculpting/hold product. We were told to be careful with heat, like opening the oven door and lifting the lid on a pan (for the steam), as the heat makes the synthetic hair frizz. Sometimes the wig place can fix the hair, but sometimes not.
Remember that I'm not going to make that purchase until I need to, to see what happens with the hair loss, scalp sensitivity, and what happens to my skin tones. I may need a different color than what we think. And we weren't all about styling the wigs on those days, we were looking at potentials. Both ladies said I could wear a lot of different styles...that I have a "versatile" face. : )
I appreciate all the comments, and look forward to reading them. We have one whopping support network here, that runs both ways. Thank you so much. I love you all.
P.S. Clean panties today, finally. 8 days. (If you haven't been reading every day, please see the Post "Girls, Only" 1.1.2008)
Friday, January 4, 2008
I got mom tucked into bed and got myself home. Dan and I visited a bit, and he stayed up with me until I got this blog written. I am really tired and am going to bed.
Thanks for reading, for commenting, and most of all for going along with me on this journey. You sure make the trip more pleasant.
Thursday, January 3, 2008
This store has styrofoam heads and plastic heads and just plain wire display racks and shelves loaded with wigs. Any color, style, and many manufacturers. There was so much hair in there I almost felt I was in a pet store. Well, I was in a hair store. And there was hair. All kinds of it. Where to start??
I guess we just look around, spin the racks, touch them, pick them up and shake them, read the tags, and select a few. It was a little creepy at first, but we loosened up and started enjoying ourselves. There were several other women, maybe 5 or 7, in the shop already, so it was somewhat congested in there. Gerry did explain that they were busy today, as the person who trims/cuts/styles the wigs was here, and the ladies bring in their hair to get trimmed up. (really--who knew you could trim/cut a wig??) Hm. Yup, there's hair on the floor over there. Hm. KS and I selected several hairs, and Gerry came back to get us situated.
A space on the counter opened up, and she found a chair from somewhere, and sat me down. She hands me a nylon thing to put on my head, like you do on your feet at the shoe store if you don't have socks on. No kidding. Now, you have to hear, listen really, these girls are giggling and laughing and having fun with their hairs. She gives us a brief introduction to wigs, and tells me to put it on. Oh--yesterday I didn't do that. I must have looked surprised, as she then showed me the tabs at the temples to pull on and then to line up with the temples. Oh--there we are. Another surprise as I look in the mirror. Gerry hands me the wig brush and tells me to brush it out and get it into place. Pretty soon, the hair takes shape as something I might really want on my head. Isn't that amazing?
I tried on several different wigs, as their inventory is quite large. Several colors of the same style, then a couple of another style. How interesting. And challenging to use the imagination to envision that particular style in another color, or that color in this other style. And remember, we can trim that up to shape to your face....
Geesh. Kathy Sue and I had brought the Kodak EasyShare camera, and a notebook with us today. After finding a style that the patrons and employees thought was "good", we photographed me. Interesting feedback from the other women. I have to say I liked it, and was very helpful in finding a style, color, and comfort level.
And we were loosening up, becoming a bit more comfortable, and starting to have a little fun. I was surprised at the patrons. These women come in, look around like you do at the shoe store, select a wig or two, get a nylon cap, pull in on, then put the wig on. They look in the mirror and play with the hair until it becomes something, deciding if they like it or not. Sometimes the women pulled off the wig they came in with to try on something different. I was not aware that wigs were "like that"--change them like shoes or eyeglass frames. We were about done with our time there, having become saturated, and there's that woman who has just purchased a new hair, getting it trimmed. No kidding. Be careful, I'm thinking, it won't grow back...
So here are the pics we took today. There are 5 different wigs altogether. The first 3 are the same style but different colors. The next one would need to be trimmed to style to my head, and the last wig (4 pics) would need the cap size altered, because it doesn't come in petite. Yes, I have a small head. Who knew?
These 3 are Aspen wigs, Sophie style.
color Cola n'Cream
This is the Estetica brand, style name Erika everyone thought it needed to be trimmed
This is the Noriko brand, style Andi 1659G color Terracotta-H. This cap needs altered, and maybe hairs trimmed, too.
It was suggested to go wig shopping in neutral clothing colors, but with makeup done. Some shades of hair may require adjusting some makeup colors.
When we were done and got home, we had a bite to eat. KS left for home, and I realized I didn't have a picture to have as an "au naturale". So Dan took a couple pics...
I'm about wore out, or maybe saturated with hair. I don't know if my hair truly is that dark or if that's just the way if photographed. I know the gray is there. And the style--not too bad after spending the afternoon smushed in a nylon cap.
There are some other wig options we looked at yesterday, and I'll tell you, so you can look them up if you want. This is what we think we remember--Alan Thomas Designs style Diamond 7009, style Bliss color 33/27T, maybe style Laura.
Wow. Hey--any feedback is welcome, and I expect comments. Look forward to hearing from you.
We arrive at the Front Room Underfashions, which is a specialty shop for women--mastectomy undergarments, swimwear, hats, turbans, wigs, and such. We enter into a shop that has ladies fashions, handbags, and on the wall shelves, wigs. We joke about the very pink wig with a hat on top. I notice that there is a man in there, sitting and reading the newspaper, obviously waiting for someone. The employed person was sitting behind a counter on the opposite side of the room from him, and leaned around to see us. She came out around there to greet us. I introduced myself and KS, she told us her name is Crystal. An average size woman (with her own hair), nicely dressed, pleasant demeanor.
I told her what my situation is, and that I was looking for a wig, on the shorter side, with red tones. Ok, she said. We chose a couple off the shelf, and she invited us back into a "wig fitting room." Oh, didn't know there were wig fitting rooms. It was a comfortable room, larger print floral wallpaper, with a vanity and mirror, which had an embroidered dresser scarf set on it. I said to KS--hey, how'd they get Elaine's embroidered stuff?? There was an armoire maybe 4 feet tall, with the righthand side door open. Inside on the hanging bar, on hangers, were several , maybe 8 or so, undergarments. A full length slip, a body slimmer of some kind, maybe a larger bra, and several other items, I couldn't tell what they were. That wasn't my focus, but I did try to notice so I could tell you. There was a full length mirror mounted on the wall just to the left of the vanity table. A wooden parlor bench was between the mirror and armoire. All were of a darker wood finish, like a darker oak or walnut. Also on the vanity were a couple of wig brushes and pick and a large hand mirror. Crystal tells me the (matching) chair in front of the vanity is for me. KS sits on the bench facing me; I am facing both her and the full length mirror.
Crystal shows us the construction of the cap and teaches us about the construction and features of this particular wig. And puts, or maybe pulls, it onto my head. She fusses with it a minute, and I am watching Kathy's face. She is doing her best to not have any facial expression, but her eyes really want to bug out of her head. (Afterward, she said she was just trying to "experience the experience") I turned slightly and looked into the mirror: OH MY GOSH!!! Whoa!!! That's a lot of hair!!! My eyes are bugging out, and I'm not sure what I'm thinking about this whole thing. Wow. Then my hand migrates up and touches it, and starts to finger comb and fuss with it, and before too long, it starts looking like something I might have on my head. Wow. I never knew. The color wasn't quite right--a darker brown with gold tips. Maybe in a different color. I don't know, what's next??
Crystal was very patient, watching for my reactions, timing her comments and movements according to my and Kathy's responses to each new hairpiece. I think we tried on at least 10 different wigs. What we learned was that the red tones were very flattering to my skin tones, and Crystal said I had a "very versatile" face, meaning that I was able to wear several different styles of hair. We ruled out a few as soon as we had them on, but finally narrowed our selections to four. Crystal's advice was to not make a decision today. Think about all we had seen, to shop around, and wait until I see what I might really need because I may not lose my hair. Another concern I had was the hair color, if my skin tone changes with the chemotherapy treatment.
Prices ranged from maybe $135.00 to $640.00. Yo. No high end wig for me, being a temporary thing and all. (That's the hope, right??) Crystal logged our choices into their system so that we had that info. Looking back, it would have been good to have a camera and paper/pen to record that experience with. Now, it's mostly a jumble, as far as brands and styles and color combinations.
We left there and went to Ingham Hospital to pick up the medical records from my two surgeries. I was surprised to see that the size of the tissue removed from the re-excision was 4x3x2 cm. That's quite a chunk. No wonder the darn thing hurts. Then it was on to home, a bite of pork roast for dinner, and down to Jackson to tend Elaine. (we missed dinner, as we had spent 3 hours at the wig shop...who knew??) We got her tucked in, came home, visited, I wrote here, and am finally going to bed at 0230.
Whew. Thank you God, for Crystal and her kindness. And for KS and her strength--she put her arm around me outside the shop and asked if I was ok. I was surprised when my eyes filled. I took a couple of breaths and recouped. We stood in the warm winter sun, experiencing the experience.