Sunday, May 31, 2009
Following the pattern of my previous two treatments, I've gone downhill all weekend and feel, well, crappy, and that's being kind. As expected, this time the side effects are accelerated and worse than the first two times.Nausea is a frequent companion but soda crackers, scrambled eggs, whole grain toast, and some fresh fruit sits well. Go figure. Slept most of the day and am going back to bed now. Sounds pathetic, but there you go -- can't help it -- it's how I feel. Doubtful I will even attempt work tomorrow. Hopefully, as in the past, Monday/Tuesday will be my worst days and then I'll start to see the rebound. Don't want to see this last longer than it needs to!
A special hug to those who called me this weekend to check on me. Even when we didn't directly connect, I was touched by your concern and wrapped in your love. Thank you.
Up, somewhat functional, still nauseous but still controllable, a lot more tired than yesterday, and the Neulasta is trying to kick my butt, but I can usually get those pains under control quickly, and it's a lovely day out, so all is well :)
Thank you to those who have checked on me regularly this weekend -- much appreciated! Good to have a hand to hold even if just over the phone for a minute or two. Helps lots.
Now go out and enjoy this day!
Saturday, May 30, 2009
Nausea is rolling in on regular waves but fortunately very mild and very controllable -- usually a soda cracker calms my stomach down and I've only done one-half an ativan today. Foods that appeal don't go with stomach upset, which is weird (chicken, rice, ugh; Mexican, sounds yummy!). But I'm eating mild and bland to be on the safe side. One ativan tonight before bed for sure!
Wobblies/weakness hanging in there but I'm OK. Headaches gone -- hurrah! -- either a side effect of the cytoxin or maybe the ativan, although the cytoxin is the more likely culprit.
Sorry for all the details most readers probably aren't interested in, but this is helping me keep a journal of my reactions for future reference. Skim or ignore as you need!
Up, wobbly, weak, keeping nausea under control, still dealing with slight headaches. Able to sit/lie down and read or rest but moving around more than to go to the bathroom is tiring. At least I have enough energy between naps to read or sit at the computer for a few minutes. Might watch a DVD if I think I can stay awake that long :) Lovely day out, a bit cloudy but not to warm or humid.
The steroids messed with me just enough to keep my sleep patterns off and wake me up at odd hours; in spite of getting in what seems like plenty of sleep at times, I'm not getting physical energy from the steroids, so I'm officially crashed. Way more tired than I've experienced this early the last two times, but of course the cumulative effects would cause that. A bit wobbly on the legs, too, but my vitals are all normal and as long as I rest I'm OK. I'm taking preemptive anti-nausea meds because I'm having frequent enough nudges from my stomach that I don't want to wait until I'm actually nauseous and having to hold things back or worse. Not into that much self-punishment! Other than that, I'm doing OK. Since I'm alone for a few days I have a couple of friends calling from time to time (thank you!) to make sure I haven't sprained my ankle again :) Not sure it's necessary but it is comforting. No one in the neighborhood would think anything of it if they didn't see me emerge for a day or two.
Happy wedding day, G&K!!!! I know you aren't reading this today of all days but my thoughts are with you anyway!
For me... back to bed!
Friday, May 29, 2009
One thing I'm really doing, not that I don't do it anyway, but I'm watching it more carefully this time: plenty of water! I'm a big water drinker anyway, but with the chemo I'm taking (and with any chemo, I understand), it's important to stay well-hydrated and flush things out. So I'm staying on top of that. Hopefully it'll keep my blood pressure and pulse more in line, too, and I won't need to go in for saline this time, but time will tell.
My immune system is crashing, too, and I expect throat infections again, but I have the meds for that, and the other important thing is staying away from crowds and people and using common sense so I don't pick up anything that causes other problems... and along those lines...
Really sorry I'll be missing my nephew's wedding this weekend -- I know they'll have a fantastic wedding with or without me, but from a selfish standpoint, I'll miss being there, sharing in the love and joy, missing a big moment in his life, and not being able to be with family and friends. Sending good wishes their way!
Happy weekend, everyone, every where!
edited to add, 2:15 PM:
Yep, crashing early.
This is a day I'm supposed to have steroid energy. I'm sure I"ll be fine but I'm surprised at how awful I feel today. Left work an hour early, came home and crashed for a couple of hours; I'm heading out to the grocery for some comfort food to have on hand, and then I'm holing up for the weekend. I'm dealing with way more fatigue than I usually feel even by Monday, a very very slight headache that comes and goes (probably from the cytoxin), nausea nudging at the edges (but so far controllable). I'm almost too blasted tired to want to stand up.
I heard the third treatment was a doozy, just really didn't expect quite all this much this fast.
I'll be fine. I'll get through it. Just not having much fun! :)
edited again, 4 PM
Took me over an hour to just pick up a few things at the grocery -- sloooow moving! Good news is, I did it! I'm still being nudged by nausea but think part of that may be lack of food in my stomach so I'm going to nibble on a soda cracker and see what that does.
Yeah, this is SO much more fun than going to my nephew's wedding.
Hanging in there...
Oh, and some good news: my ankle, while still swelling some, is way down on the pain. Hurrah! Should be back to normal right about the time I get really tired from the chemo! :)
Wednesday, May 27, 2009
At the moment I'm tired and wondering why I'm still up, so I think I'll put that wondering to bed. Literally.
G' night, all!
Tuesday, May 26, 2009
Not dreading it but not looking forward to it, either, except in the sense that it will be 3 down and one to go for the A/C. Can't wait to be done with this bugger!
Hope all is well with y'all!
PS. Be forewarned: as soon as my scalp is smooth (which may be a few weeks) (right now it's part stubble, part partly-bald, part smooth), I'm planning on abandoning scarves, at least for some of my public appearances. They're just too hot and I'm tired of messing with them!
Friday, May 22, 2009
Blood pressure is back in the normal range since I've gone on a half-dose of lisinopril. Pulse is still a bit high but acceptable. The adriamycin has my heart working harder than it normally would so the meds seem necessary to keep things under control. I'm halfway through the adriamycin/cytoxin treatment -- will be glad when I'm past all that. I can take most of the side effects but don't like what it's doing to my heart.
I'm off ativan for now. After I got past the anxiety over my heart wonkies, I didn't need it, and prefer not to take it anyway, so that was an easy decision. It's there if I feel the need but I'm doing well without it.
Energy is great! Hurrah! Happy dance! I'm getting caught up on chores and errands and hope to get caught up on email before I get zapped again next week. During my energy periods I feel so good it's hard to believe I have cancer. In fact, for the last several months (including before my diagnosis, and with the exception of the chemo down-times), I feel better than I have in ages. Doesn't make sense, but I'm not complaining!
Ankle still has some slight swelling and isn't letting me walk overly much, but I can get out in the woods for slow strolls, and that feels wonderful.
Weather has gone from pleasant spring temps to humid and hot. Ugh. Well, it is Indiana -- I'm glad we didn't get this a month earlier!
That's it from the flatlands!
Tuesday, May 19, 2009
Here's the ending refrain:
I'll never let this define
The light in my eyes.
Love myself, give it hell,
I'll take on this world
If I stand and be strong.
No, I'll never give up,
I will conquer with love,
And I'll fight
Like a girl.
(me at the ocean -- the closest photo I have to "fighting" me -- full of strength and love!)
Doc put me back on 1/2 tablet (5 mg) of lisinopril. I took myself off the ativan. It's only been 12 hours so it's too early to tell but hopefully this will help with the bp/pulse wonkies. I'm trying to get out for short walks as much as possible -- I think exercise would help -- but my ankle is still fussy enough that short, slow walks are all I can do, and I know that's not going to do much. At least, not from a bp point -- from a soul-revitalizing point, it helps tons. Our gorgeous spring continues!
Oh, yes, my hair stubble, which was only falling out in mild fits and spurts, has been letting go in greater quantities lately (I'm so glad I shaved my head -- I really wouldn't be able to stand the handfuls -- wise move not to put myself through that torture). I now have several smooth, shiny patches on my scalp. I can't wait until it's all gone. I look a little like a mangy dog. Aren't you glad I'm not posting pictures? :)
That's it from the flatlands. Another beautiful day -- enjoy, everyone, where ever you and whatever the weather!
Sunday, May 17, 2009
One noticeable difference this time, which didn't hit me until yesterday: I had very few aches and pains from the Neulasta this time. It nudged me a few times but nothing like the first time. I attribute this to the generic Claritin, which I've been on since right before the second treatment. Rumor has it that it helps; my oncologist's office knew nothing about it but said it couldn't hurt to try. I'm sold. I had some minor shoulder aches a time or two but it was much better this time around, so I'll stick with the Claritin.
I'm still having some blood pressure and pulse rate wonkies -- the saline I got Thursday helped, but things are trying to move back up, especially my diastolic. Not good. I go back in tomorrow for a re-check. I've been taking half doses of ativan today to try to keep anxiety down because yesterday I noticed that as the day went on and my pressure went up, I got more and more concerned about it -- which probably made it go up more. Finally got up to 150-160/105-110 and that was too high. So I talked to the doctor on call and we decided to try an ativan and then check bp again in the morning. An hour after I tried half an ativan my bp was back within a more acceptable range. Lends credence to the idea that nerves/anxiety are causing my high blood pressure. Worth looking into more. Meanwhile, I'm listening to quiet music and doing some TM and other forms of meditation.
Family was here today (good to see you all!) for my oldest nephew's graduation from Purdue. Perfect day, nice, relaxed time together, and a big milestone for my nephew. Nice to have everyone around.
We had some more torrential downpours (Friday night) so Celery Bog paths are like walking in soup. I'm hoping they drain/dry out some today; I'll try again tomorrow. Got a better wrap for my ankle and it seems to be helping a lot when I'm on it. This weather is my idea of perfect: low 60's, cool north breezes, sun. Too bad summer doesn't stay like this! Gotta get out and enjoy it!
Thursday, May 14, 2009
I even took photos, although most of the wildflowers are gone. I had some fun playing with shadow and light and foliage texture and things like that. Didn't get anything especially great, but saw one of my favorite birds, and had fun. Just felt good to be doing, and to feel good enough to want to do anything.
It's perfect out (as much of our spring weather has been): sunny, not too warm, cool breezes, everything fresh and green. It did my soul a world of good to be in the woods and around water, as it always does.
This was all after I called the oncologist this morning, barely able to sit at my desk, and asked again about my low-ish blood pressure and high pulse.
They pumped a liter of saline into me this afternoon, and I'm a new woman. I'm also off blood pressure meds, at least for a few days, to see how I do. If it soars back up into the 170's over 110's, I'm sure they'll be adjusting that yet again.
Woo hoooo!!! One small liter of saline for woman, one large energy boost for... woman! (OK, my paraphrasing is awful. So sue me!)
Take THAT, fatigue!
I was awake a couple of hours, but it was kind of nice -- listened to waves of thunderstorms pass over the area, and to the rain falling gently on the house.
Took another 1/4 ativan this morning to stave off something nibbling at the edges of my stomach. I'm trying to keep extra meds to a minimum, but I'm no martyr. I'd rather feel better!
Another day further away from round 2 -- should see a bit of improvement!
PS I already see this blog evolving a little -- not just information for y'all, but also a diary of sorts for me to remember my progress/problems/meds etc. So bear with and ignore the parts that don't interest you, please!
Wednesday, May 13, 2009
OH, GREAT, and our unkind neighbors are burning trash in their fireplace again, so that's making me nauseous now. Great. I probably won't be able to sleep now after all.
I do think my fatigue will improve over the next several days but overall I'm thinking the second treatment is turning out a bit more tiring than the first, so I can't wait for the third and fourth. Ha!
My spirits are good except for crankiness (does that make sense?). And except for the fact that I'm really, really irked at our neighbors. And trying not to cry about it.
I warned you this blog wouldn't be especially well-written. Now you have proof.
(PS, update, about 1/2 hour later: while the smoke smells really nasty and full of chemicals, at least it's not making me nauseous. Keep your fingers crossed for me!)
Tuesday, May 12, 2009
I was in bed and asleep by 6 PM yesterday -- got up at 7:30 (AM, the next day, that is) (with few wake-ups during the night), went to work for an hour, then gave it up and came back for more sleep. This is only slightly longer than the 13 hours I slept one night during my first treatment, so not a huge surprise. I probably could have made it through work but decided not to be a martyr. I'd rather know I'm helping my body, and the work will get made up.
The bedtime, hours before sunset, reminds me of the Robert Louis Stevenson poem, "Bed in Summer," although unlike the child in the poem, I didn't find it hard at all to go to bed by day!
I am seeing some progress; I got out and was a little active this afternoon (if you count taking mom to the grocery store "active"). This is good! An early bedtime predicted for tonight, but still and all, I'm not complaining. Except for fatigue I'm feeling good!
Sunday, May 10, 2009
It isn't a question of sleep so much as just plain lack of energy. If I rest awhile, I feel better, and if I try to sleep, it often doesn't come anyway -- it's just the energy drain.
All in all, nothing to complain about; just something to get through. And it's for a good cause!
(Ankle update: still too sore for hiking -- just as well since I don't have the energy to hike, anyway -- but only slight swelling and the blues are fading.)
Friday, May 8, 2009
(edited Friday PM to add:)
The Neulasta aches are catching up with me earlier this time -- durn. Back aches, nothing dire, but a lot sooner than last time. I've already got the generic Claritin going, I'll up the acetaminophen a bit, and hope for the best.
And, PS: ankle is much improved. Still nasty-looking blood pooling and bruising, but walking fairly normally and swelling has gone way down. If I'm not too tired this weekend, I may get some photography in after all!
Thursday, May 7, 2009
Background on Diagnosis and Initial Treatment
Many of you know all this already. Don't ever feel obligated to read anything I post! It's only for your convenience. This first post is long and possibly TMI for some, but there's nothing gruesome in it, I promise!
- Wed., March 25, diagnostic mammogram: An "I'm-God" radiologist told me I had cancer, period. According to her, I would have to have a biopsy because it would be required, but she didn't feel I really needed one because she already knew the results. I don't care how sure she was, she could have phrased it softer. No matter what her experience told her, she was rude and arrogant about the whole thing. I was so shaken (literally and figuratively -- my body was trembling and my insides were mush) I immediately went to mom's oncologist's office to meet with the counselor on staff, who wasn't in... I ended up meeting with the oncologist instead, and he was terrific. He immediately offered to help if I wanted, admitted me, and examined me that afternoon. He wasn't optimistic about the diagnosis but managed to phrase it in a kind and soft way. Totally different manner than the blankety-blank radiologist, and much more acceptable. Some doctors should not deal with people.
- Wed., April 1, biopsy: April Fool's! but of course it wasn't. Not horrible but not pain-free, either. Had the same "I'm-God" radiologist tell me the results wouldn't be available for 3 or 4 days, "not that I need to see them to know you have cancer." I won't use her again, ever. And my oncologist knows it and knows why.
- Mon., April 6, met with my oncologist: biopsy results, discussion and decision on treatment plan. Good news: highly treatable, localized, long term prognosis, very good. Treatment: adriamycin and cytoxin, once every 3 weeks for a total of 4 treatments over 12 weeks, along with a Neulasta shot the day after each treatment (to promote white blood cell production destroyed by the chemo). A/C to be followed by 12 weekly treatments of taxol and herceptin. The herceptin will go on for a year. Surgery, after the chemo, I believe (that includes the A/C and taxol only -- herceptin is biological, not chemical). Radiation possible after the chemo; again, not sure of all the details yet, some of it will be as-things-go, and of course things may be adjusted.
- Thurs., April 9, implantable port installed for chemo infusions: out-patient surgery went fine. Thanks, Richard, for holding my hand through that. I knew my little brother would be useful one day :) The anticipation, as with most things, was worse than the procedure. There was some significant tenderness around the port for a couple of weeks and stiffness of my neck for about a week but nothing I couldn't live with.
- Friday, April 10, Mugascan: to check my heart, since A/C is hard on your heart. Because chemo isn't nasty enough already :) Results of scan, fine.
- Friday, April 10, first chemo teaching: the information was fine -- nothing I didn't expect -- but they told me I'd have my first infusion at the hospital because it would be cheaper than having it at the oncologist (I was waiting on insurance confirmation). I have to admit, I freaked and started crying. I know the staff and the oncologist well because I've been taking mom there for over a year. I trust the staff at Harb's office, am comfortable with them, and part of what was making that first overwhelming period bearable was that I was going to be with people I knew and trusted, and not with unknown staff to whom I would be "just another patient." I explained all this to the nurse, told her if cost was an issue I would find a way to make it up, and the oncologist himself came in and assured me that all my treatments would be in their office and I was not to worry about any of it. I felt like a big whiny baby to be so upset over the hospital thing but emotionally I knew I needed to be with people I trusted. One thing I know about medical care is that you have to be your own advocate and ask for what you need (and make sure you get it), because no one else is tracking it the way you are.
- Wed., April 15, first chemo: this consisted of Emend, an anti-nausea pill, followed by an infusion of steroids (for nausea) combined with another anti-nausea med, followed by a huge needle of adriamycin injected directly into my tubes slowly, then the cytoxin infusion. Went fine. The staff was incredible, as they always are, and it made a world of difference to be with them. Thanks especially to Susan, who did my first infusion, and to all who stopped by my chair to check on me and just chat. That evening and all day Thursday I was exhausted. I take Emend and steroid pills for the two days after each A/C treatment. In case you don't know, steroids can pump up your energy a bit! Woke up around midnight Thursday, wired from the steroids, had about 20 hours of energy, then I crashed for the next 8 days. The aches and pains from the Neulasta kicked in about 4 days after the shot and lasted about that long, maybe a day or two longer. That bothered me more than the fatigue but I figured out a control plan: generic Claritin (not the d-type) and acetaminophen. The Claritin seemed to help the most. Also, some really good news this day: got medicaid approval. It's a program for women with breast and ovarian cancer, I was hooked up to it through the local YW (thank you, Sue!) and although I cringe at accepting public money, I'm not abusing it -- I need it and I'm using it. Not having health insurance for the first time in my life initially caused some panic (no insurance -- who would treat me? I figured they'd just let me die if I had cancer) (I did snap out of that train of thought quickly, but it did cause some real anxiety at first). I'm grateful that this program is in place.
- Saturday, April 25, energy returns: after 10 days of gradually subsiding fatigue, woke up full of energy. Hurrah! Lasted until my next chemo -- 10 days later. I was really happy to have that spurt and feel like a real person, in spite of the two following interruptions in energy: the first, emotional; the second, physical -- they were:
- Wed., April 29, hair loss: my hair started falling out, a week earlier than I expected, but someone has told me her hair fell out at two weeks after her first treatment, so I wasn't caught totally off guard. Decided I would better off getting rid of it than dealing with the emotional impact of handfuls and clumps of hair falling out, having to clean them off the pillow, out of the drain, etc., so I had my head shaved that same day. I had had it cut short in anticipation of the fall-out so that helped. As I expected, it was good to just get it shaved and over with. I don't much care for the bald look but it's not so awful, either. Good news: hair on legs and underarms is no longer growing, so no shaving all summer! Won't miss that! I'm currently the queen of scarves -- glad I've been buying them for so many years! Wigs are on order... Thanks, Deena and Dave.
- Saturday, May 2, sprained ankle: missed a bottom step and sprained my ankle, but good. There went my Sunday hiking and photography plans. Oh well! Made me mad, but what could I do but laugh and cry. At least I didn't break anything -- the nurse practitioner I saw before my second chemo told me the most common way for women to break their pelvis is to miss a bottom step. Be forewarned! and less clumsy than I.
At some point fairly early on in all this I was put on blood pressure meds. My blood pressure normally runs in the 100/60 to 120/70 range, but it was registering 150/100 to 177/117, which everyone, including me, attributed to nerves. But the doctor didn't let it go on long -- he said he didn't want to see me get past the cancer and die of a stroke. I couldn't argue that, so I'm on a low-dose, mild med, and am well back within my normal range. Still, it's strange, as someone who hasn't been on prescription meds, and avoids most OTC meds, to suddenly be looking at all these bottles of meds, anti-nausea mostly. But I know they're there for a good reason and cause and I have no problem doing what I need to do! Since many herbal supplements and some vitamin supplements, especially anti-oxidants, can interfere with some chemos, I'm being very careful about using even such seemingly-innocuous things.
That's the initial round. All in all, the first couple of weeks were really overwhelming, but I got through it, and I appreciate all the support I got and am still getting. It made, and continues to make, more difference than you can probably know.
I still have moments of anxiety (over the treatment, not the cancer -- I am the Queen of Cancer Kick-Ass!) because well-meaning, thoughtless, ignorant, or stupid people keep telling me how "awful" the A/C treatment is and "how sick" I'm going to get. Funny, since most of the people who feel obliged to share this haven't had cancer. Well, folks, I know the possibilities -- and I also know not everyone has a horrible time with it -- and I also know I'm well-armed and well-medicated for nausea -- AND I also know my body is doing OK so far -- so please, keep your negative comments to yourselves. I don't need the negative! (No friends or family have said such things to me, so thank you for that! I'm just venting frustration at the ignoramuses out there...).
But this is a good time to bring up the fact that I am focusing on the positive. I'm aware of the negatives and the possibilities and implications -- most of you know I'm no stranger to cancer and its impact -- but I don't see any point in focusing on the negative. I'll deal with what I have to deal with and get through this. And in the process, I chose to put my energy into positive channels. I know you all will respect that, as you already have. Doesn't mean I won't have my down days; this is a roller coaster and I know that and am experiencing it often. But my focus is into positive channels, even when I'm crying.
Future posts won't be so long, this is just to catch everyone up.
Thanks to all for the calls (even when it goes to voice mail because I'm sleeping!) and emails (even when I'm slow replying!) and support and love and energy and prayers and everything positive you send my way. Everything, even the calls and emails I don't answer right away, are very meaningful and helpful to me. Thank you for being there. Special hugs to you all.