Starting chemo January 2009?
Comments
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Misty-that is great news. I have added Malcolm's name to several prayer lists in my area. I have always believed in the power of prayer but never more in my life than now.
I am so happy for those finishing up. I have been sooooo sick i can not even think of anything but getting rid of this fever. It goes up and down with tylenol. At 100.9 right now and I can type. It has been a very very long week it it is only Wed. (I think). Well I really hope that this is not how most of you have been feeling all this time because if it is I did not appreciate the magnitude of what you were going through. My DH keeps telling me to be grateful because I did not feel this bad during the AC tx. but grateful is not in my vocabulary right now. Last night temp hit 103.3. I do not think I have ever had a temp that high. Saw Dr. yesterday. He gave me option of going to hospital I said no. Told me to wait a few more days and if not feeling better to call him right away. He thinks it is a virus I guess although he did put me on two different antibiotics. I assume if they are going to help I should see some relief today. Doesn't it take 24 hrs. for them to work? My WCB count was 4.9 when I was in the ER on Sunday and down to 1.9 yesterday. That sucks. Dr. said neulasta shot probably gave me 4.9 on Sunday and I am on my own now. Please keep me in your prayers. I am really feeling I don't want to do this anymore and I am angry at everyone!!!
Patti
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Congratulations to everyone who finished their final treatment!!
Thank you for the thoughts about my friend passing away... his funeral is today so it'll be rough but I'm just thankful the timing is right so I can go.. (next week would have been out of the question as tx #4 is Tuesday).....Misty - that is excellent news about Malcolm being #4 on the list! Wow! My brother in law has been waiting for a kidney for 18 months or so... I know the waiting is very hard but wow... #4!!!! Things are lining up for you now... you are finished with your treatments and Malcolm will be getting his liver transplant soon...it's all good!!
jrgolomb - I think we all feel dred and anger. I know I do... but when I'm there in that moment, I try to remember that in 24 hours it's likely to pass and I try to just "wait". Personally, for me.... I blame a lot of that stuff on hormonal changes as all estrogen production is shutting down. I'm not saying the dred and anger aren't real or justified... it's just that I think they are being exaggerated because I'm being thrown into menopause early. My mood swings are crazy (ask my DH, he'll tell you! ... poor man has been cussed out more than once! lol), hot flashes are intense......so I take some of those doom and gloom thoughts with a grain of salt and just try and "wait for them to pass". I no longer trust every thought I have as being "real"... because in 24 hours I'm like "what the hell was that?!" and my mood is totally different. I know, I know... that probably doesn't help anyone who's feeling down and pissed off right now..... it's all very real when you're in it.... I get that....but for those of us being catapulted into menopause before our time... I think we need to try and remember some (some!) of those "dark" thoughts come from a place of hormonal imbalance.. it's a cruel trick... just try and wait 24 hours when the cloud lifts and give yourself a break because you have no control over that stuff.....
LisaLisa - love the green wigs.. your daughter is so cute.. looks just like you!
Patti - hang in there sister... some day this will all seem like a bad dream....
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Misty, I'm thinking of your family and son and hoping he gets that liver soon, and that all goes well with the transplant. What you're going through with him I think is like Breast Cancer, until you've been through it or had someone close to you do it you can't imagine what a long hard road it is.
RenreL I hear you For me its complicated by the fact we had to cancel that last round of chemo due to toxicity. My head knows it was the right thing to do, and in the long run it shouldn't make a difference, but the fear sure spikes its head up in the middle of the night.
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I received some very sad news today. A woman in my bc support group has passed away. The last time I saw her she looked vital, but mentioned some spots on her lung. She was such an inspiration to all of us in the group, with the strength and grace she showed as she completed chemotherapy last Summer/Fall. She was very grateful for the medical care in this country as she came from a place where treatment was less of an option. She so wanted to be around for her children and mother and husband.
I'm having an odd reaction to this news, thinking about all the things that I need to get in order "in case" and about renewing my resolve to make the dietary changes that I need to make as well. I want to be here for my little boy as he grows up. Last week he'd had a nightmare, when I asked him what. He said that I was gone and he had to go with someone else and that daddy said I went to live on another planet. I told him, no, I'm right here with you. I want to live.
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holtbolt sorry about your friend.
well tomorrow is my last taxotere, then i start AC. I hope it goes well.
congrats to you all who are finished!!!!
hugs and prayers to all....
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Hotbolt sorry about your friend.
Congrats on all the ones who have finished their last treatment. You have each survived!!
I had my last T/C last week. It was a great feeling knowing it was done. I feel now each day is getting back to normal, what ever that is! I will begin radiation after April 1st.
hugs and prayers
sally
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PrincessKauai, I'm sorry about the woman in your support group, it really brings it home that this disease does kill every single day, but we are survivors and we are going to beat this. I could never leave my 3 yr old and 6 yr old, I want to see them grow and have their own families and I want to be there with my husband when we are old and gray, that is my new dream for my life. I used to wish I'd win the lottery or get a great new job or things like that, but now I know what is important, I just want to live, I HAVE to live, I don't have any other options
My family needs me. My son knows a little about cancer and asked if I was going to die and I told him not until he was a very old man and not to worry about anything like that, I don't ever want him to worry about losing me, it's heartbreaking to have kids worry about their parents, who are there whole worlds, their security. -
Thank you so much Jilly G, my little guy is just 5 1/2, so I'm right there with you. I want to see him grow up; I would love to dance with my husband at his wedding and become a grandmother someday. A bc diagnosis does help to clear the important from the unimportant in our lives.
Because I found my post scary. I want to let folks know that I found out a little more about her course since this morning. It was a very rare occurance circumstance, and her death was due to a secondary, very aggressive, lung cancer that was found shortly after her bc treatments were completed, not to spread of the bc. She was a beautiful woman.
I know we are all, here, very ernest in our will to live and to do what's necessary - 'excuse me, like chemotherapy! - to make us survivors and increase our longevity for ourselves and family!
To Life!
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Just a quick drive by post. I was feeling pretty tired today. I got DS into school at about 11am. He felt fine. I went food shopping in boston for about an hour. Drove home. As my lunch I was cooking I checked the machine for messages. There was a call from DS school. He was crying with an ear ache. So I had to drive back to Boston and bring him home. He was miserable. He complained the whole way back that I was driving too slow, there were too many lights ect. It took me an hour after we got home to get some tylenol into him. Once he had that he felt 90% better and we could watch Chitty Chitty Bang Bang together. The only problem is I still really need that nap I was going to take after lunch.
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ladyjane54-thank you for the continued prayers and you are in mine for a complete recovery from this virus you are fighting
holtbolt- thanks you also and I will add your BIL to my prayer list, Malcolm has been waiting for 13 months so it is quite normal to wait a long time for some people, I actually learned that some people wait for over 10 years for a transplant.
kmmd- I have a feeling that he looks at it this way but from a mothers standpoint I see him as being so much worse off, I deal with pain and inconvenience for a week and he is 19 and lives mostly in bed or the hospital (currently there) Thank you for your thoughts, please continue to pray for him.
Renrel-
Hope the little one feels better after his Tylenol and you are able to catch a little nap.
I am sending healing, positive thoughts and prayer to all of you strong women not only fighting for your lives but the right to raise your children. grow older with spouses. meet your grands and make more lasting memories, this dx has opened my eyes to the smaller things and life and you all have hit on them, we are not alone by a long shot and thank you all for making this journey a little easier by sharing your hopes, fears and advice.
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Misty: Congratulations on finishing your chemo! And I hope your son moves quickly up the transplant list. #4 is so close!
And congrats to all the Jan. Jewells finishing up! Keep us posted on recovery and life after chemo. I need some inspiration now.
Renrel and Princess Kauai-Thanks for the cough remedy suggestions. I love lemon juice and honey, and I'm stopping by Longs for the Mucinex tomorrow.
Princess Kauai-I'm sorry about your support group friend. Life can be short, and I hope for all of us that won't be true. But I think that as crappy as this experience is, it seems we Jewells have all come away with a renewed appreciation for the beauty of the day and the joys we have. I don't feel this every minute--sure I can angry, caught up in petty work issues, mad in traffic--but I feel I'm letting go of it easier.
Well, I'm up too late. DH's 55th bd tonight, and friends from ashland we've known since college drove down to celebrate! Ate Chinese food, which I didn't have a stomach for during AC. Also now liking sweets again (and it shows--I've gained weight after just 3 Taxol txs).
Hugs.
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Good morning!
Sorry it's been a while since I've posted! I said from the get go that I was going to live my life through all of the BC shennanigans and boy am I ever! Between work and kids (and even some fun!) we are BUSY!
Go for Taxol 2 of 4 tomorrow and I am finally seeing that light at the end of the tunnel. I still have lots ahead of me (rads and finishing up reconstruction) but getting through chemo has been my Everest from the get go. Congratulations to everyone who has finished!
Princess Kauai - I'm sorry about your support group friend. It's so sad. This disease is a thieving monster! My thoughts go out to her family and friends.
On a different note, I've been following the story about the actress Natasha Richardson who died yesterday from a head injury. It's such a tragedy. I was thinking last night that she didn't even have a chance, she fell, she was injured and that was it. Comparing that to my own situation I thought that at least I can fight it and I have a chance (a good chance) to fix it. I'm sort of rambling here but I think you can probably identify. It made me realize even more how precious life is.
Ok, done with philosophy for the day
Everyone take care and feel good!Diane
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Princess Kauai, sorry about your support group friend.
Misty, please keep us up to date about Malcolm.
I'm never sure when to start the count down to trying to feel better, from the last chemo (4 weeks), or when I got out of the hospital after the last chemo (2 1/2 weeks). But, I swear I can see a few hair follicles sitting under the skin--not growing--but the color is there. The frustration is in how long I'm being told it will take to recuperate from that nice little chemo induced ICU visit. I had pictured bouncing back within a few weeks and life being a little more normal. I'm now hearing the words months, and you're expecting too much too fast. Oh, well, I guess I just have to remember those words "you almost died" and being grateful I'm home and stop concentrating on how much I can't do yet.
Anyone else finding that the little aggravations in life just don't bother them the way they used to? I find myself ignoring things that used to annoy me. Just don't have the energy to worry about them, too much else going on. I'm hoping I can remember that place and keep that tendency when life gets back to more normal.
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Berkleykim - I had the tea name wrong - it is breath easy by traditional medicinals. I have not tried them by I have also read the apple cider vinger is good for a cough and about 100 other things. Also vicks put on your feet and then clean socks over them. And putting a onion cut in half near your face. All folk remedies if you want to try any of them.
DS seems fine since we got some tylenal and later some motin into him. He refused the chocolet milk with motrin mixed in this morning because the medicine made it taste bad. Hopefully he will be fine. He slept through the night and played most of the morning on the computer which was way longer than the last dose of motrin was supposed to work.
I am going to go climb into be and read or nap. I am in week 3, my good week, but I still feel very tired. Then again I did not get much time to nap in week 2, so maybe that is just catching up with me.
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Hi all!
Misty - keep us updated on Malcom! hope he gets that kidney SOON! congrats on being done with chemo too!
Princess Kauai - I can identify with losing a friend from a support group. It just shatters your world. I was at an art seminar at the local church on Tuesday and we were asked to park elsewhere....there was a HUGE funeral at the same time. For a young woman who died of breast cancer....leaving 2 sons, the youngest in 5th grade. I didn't know her but lots of my friends did. I almost left the art training and went to the funeral......wierd feelings.
Berkely Kim - glad you had fun for your DH's b'day! and glad you can eat normally again!
Shockedat39 - the Natasha Richardson story is affecting me. Partly, because she's my exact age. But, also because she has kids! The kid thing sends me over the edge. And, you're right....she was just here and then gone. No real time to plan or wonder or anything. So scary! My heart goes out to her family.
I'm feeling pretty good these days. Actually feeling almost normal (though not looking normal...pretty much have lost ALL of my eyelashes and most of my eyebrows). Chemo #5 on Tuesday. Last week at this same time, I had my doubts about EVER doing chemo #5 or 6. Things change FAST!
Lisa
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Renrel, I have been experiencing the same feelings as you ... realizing that this disease has made me committed to being more "mindful" in how I spend my time, and also having those inevitable "dark times" (which, like you, I fear will come more frequently when the Tx is actually over). Last week was definitely one of those as I was terrified that the back pain meant a bone met (Dr. said extremely unlikely, esp. since I'm right in the middle of chemo -- thinks it's just more fun & games from the Neu-B@$t@rd!!). Thanks for the book suggestion -- hope they have it at the 1/2 Price Bookstore as our libe never seems to have any of the cancer books that I've looked for lately.
I am proud to join the "bye-bye chemo" club with you, Misty and JillyG! Had my last infusion today, but I guess I really can't say I'm "done" w/ chemo since I still have to get through the lovely TC-related SEs (oh, and don't forget the SEs from the Neu-B@$t@rd shot!!). Like several of you mentioned, I also will be starting radiation in about 3 weeks, but don't know what the regimen will be yet. They are supposed to set up my appt. with the radiation onco. soon. Misty, please keep us posted on your son -- hope he gets his transplant SOON!!!
For all the Jewels who are approaching the chemo finish line, hang in there!! We are all rooting for you!!
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Mary, CONGRATS on being done with chemo!!!!
I actually just made an appointment with my radiation oncologist. ack! As soon as we finish chemo, we start radiation (well, maybe 3-4 weeks off). In some ways, I want to keep this train moving. In other ways, I want to have a LIFE. But, I guess its best to keep moving and be DONE with all of this sooner rather than later!
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OK, how are so many of you staying so upbeat? Boy am I having a down day. I'm just so tired of being tired. My onc keeps telling me I need to be patient. Doesn't anyone else get a day when you just want this in the past and feel like yourself again?
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kmmd,
i was in a dark cave for about 2 weeks. i emerged again over the weekend. i find its getting harder and harder to keep upbeat. what keeps me going? my kids. without them, i'd be LOST! seriously, when my 5 yr old brings me a flower from the garden or some artwork that she made me, i KNOW that i have to rally for her!
that said....i can't wait to be done with this. i hate it. i hate cancer. i hate chemo. i hate all of it!
Lisa
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Not even up to reading all the missed posts. Just checking in to say I am still fighting whatever it is I have. I have never been so sick in my entire life. It has been a really rough week and I am ready to throw in the towel. This has to end soon. How long can a virus last? My temp has not been below 100 in a week and when it hits 103.3 has it has it is unbearable.
Patti
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LisaLisa - Glad you are feeling well. I too am doing six and I have to say number 3 is leaving me much more tired than the past two which has me worried about 4, 5 and 6. But I am actually doing better I think with most other symtoms. Or maybe I am just taking things more in stride, being in chemo world is the new norm.
marymoir - I hope you can find the book. I personally have found the Oprahs Soul Series podcasts which I get for free off of Itunes to be wonderfully uplifting. So many wonderful spirtitual author/teachers sharing a grain up their version of spirtuality.
Kmmd - I think how bad symstoms are can affect our ability to stay upbeat. I am less up this cycle due to the fatgue. I actually feel that some of the downess is an actual symtom of the chemo rather than a reaction to the drugs or the fact that I had canser. That it is a physical things happening in me, like depression is for many people. But I do find that consciously trying to be present in the moment and mindful and grateful and all those things helps me to keep things in balance. I don't know that it would/will help me though the quagmire you have been dealing with but I hope it would/will. I also find keeping a care pages blog helpse me. I let out my feelings and even as I am typing my complaints I find myself finding my way out of my complaint and into a place of gratefulness or understanding that things could be much worse. Just seeing all my friends check in every day or two on the page lifts my spirts. The cards and gifts from my chemo angels help. The different workshops at my hospital help. Walks in the woods help. The oprah podcasts I mentioned above help. I also Moth podcasts and Wait Wait don't tell me for laughs. Reading takes me away as an excape. It is a passion of mine and luckily it does not take much energy. I can even get an audiobook if I am too tired to read to myself. Having a 5yr old also helps me stay more upbeat, when it is not exhausting me. Two sides of the same coin. Mostly I think staying aware of all the things I have to be grateful for helps me. Today I gave thanks that there was no traffic when I overslept by 30 minutes to go pick up my son at preschool, and that I woke up without the alarm. And there was an amazing light outside around sunset. And DS liked and ate his dinner with enthusiam, and DH slept though the night for the first time in 3 days. Taking note of things like this, along with the fact that I needed to nap and rest for several hours today and that my legs feel like I have run a mile everytime I swat and get up for any reason, and that my hats and scarfs don't amuse me as much as the once did, helps keep me balanced and from falling into a well of despear.
ladyjane- I will think health thoughts and send them in your direction. I know that getting sick can be a symtom of chemo due to the low blood counts and all but it still seems that if you are dealing with one major thing like canser or chemo that you should not have to deal with any other dump illnesses.
I had a quiet day. I made it a point to rest most of the day. I read, did a wonderful guided imagery for fatigue, and napped. My big accomplishments were walking to the afterschool program DS will be in next year to make sure I liked it (it is maybe 1/4 mile from the house) and making three necessary phone calls. Other than that I did necessary childcare and self care stuff, making easy meals, getting DS into pjs and the like. Tomorrow I am going to get what is left of the fuzz on my head buzzed and get my new red wig trimmed in the back so it looks more normal. I have not shown it to DH yet. I think I will suprise him on our Saturday night date. Saturday of week three we have a standing date, assuming that will be my best night of the cycle.
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Ladyjane: I'm so sorry you're feeling so awful, and it has been going on a long time. Hugs to you
I think I'm going to take the great suggestion from some of you. As long as all are healthy will try and meet up with my young neice and nephew this weekend--get my dose of young children. They do always make me feel better
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MARY---your description of the neulasta shot got me laughing, but only cause I know what you mean about the pain.
HOLTBOLT--thanks for your insight about the feeling of dred. I know it is part of the process;it's still so hard to reason when it hits. I had the oncologist tell me numbers yesterday regarding recurrence rates for me, just because I needed to hear the hope part.
B-Kim--happy birthday to dh....
Shocked and LISa--totally agree with you about Natasha Richardson. What a tragedy. I have always liked her acting.
Patti--I wish you luck. So sorry the virus won't go away. Hugs
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I finally buzzed my head. I am now prickly instead of fuzzy. Not sure if I like it or not but at least I can now honestly all myself bald. I was somewhere between a hairfull and hairless person before since I let it all fall out and not all of it did. I also got my red wig trimmed (I am wearing it now and got a few complements) and bought a summer hat that I like alot and two turbans, one in a blue/gray rayon print the other in red cotton. Not sure I will keep them all, getting tired of spending money on head covers but I will need to protect my head from sun and air conditioning as the weather warms.
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DH says the buzzed look is an improvement. I feel relieved. It is good to here your husband finds you more rather than less attractive when you are dealing with the issue of next to no hair.
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Is anyone else dreading chemo more and more??? I was delayed a week due to infection and now have chemo #5 on Tuesday (T/C). The longer I'm away from it, the harder it is to do it again kwim?
4 down, 2 to go. Must keep chanting that.
I have lost ALL of my eyelashes at this point.....my eyebrows are thinning. Its getting harder and harder to look in the mirror. ugh.
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Well, chemo #4 really kicked my butt, but at least it was the last one. I feel more run down than ever before and I can barely keep my eyes open after supper every night. I have been going to bed at 8pm and sleeping all night long and still exhausted when I wake up in the morning. I believe the fatigue really does get worse each time and I know for a fact it wreaks havoc on my emotions as well. Just so sick of being sick, like everyone else. I think we are all at that point in treatment where we feel like we've been dealing with this LONG ENOUGH!
Lisa: when they wanted to delay me again for low counts last week, I dreaded the last chemo so much I begged to get it. I wanted it done and over with, I really did dread it worse everytime, I didn't want to go one more week as a chemo patient. On Tuesday you will be able to say 1 more and you'll know you're going to make it. Once you get down to last one, it feels a little different, you just know that you've made it and can do one more. I am so happy this rough road is almost over for you. You're almost there!
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Lisalisa - I do think it gets harder. I am tired of this and my way of dealing seems to be to stop taking extra care of myself, which is dangeous. During my nadar period this round I actually was eatting samples at Cosco. Dumb. And I did not call my doctor or nurse once this cycle even though I had a cold with a cough and then a weird ear thing - not pain but strange noices and it was closing up more than usual from a cold. I envy you being almost done. I will be doing #4 on Wed. Sorry about the eye lashes. I have been told that is the hardest since they serve a function beyond just looking good to us.
JillyG - Lucky you, no place to go but up now. You may be beat now but as your body recovers you don't have to dread another go around. I am doing 6, so I still have 3 to go. Ugh.
Is anyone else experiencing muscle fatigue? I find tha if I squat down to get something in a lower cabinet or off the floor and when I stand I feel as if I ran a mile. This has been going on for a couple of days and I am beginning to feel the slightest bit of the same thing in my arms.
I was watching tv last night and there was a scene in a hospise. I started thinking that I could find myself in one of those and it was scary.
I am getting used to my buzzed cut. DH seems to like rubbing his hands over my head. (I kind of like doing it myself) He used to be at war with my hair. He thought it looked nice but that it was coarse and he did not like how it "attacked" him. He feels safer with the the current look. (LOL).
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lisalisa - when i was getting AC, i dreaded chemo so much that i wanted to QUIT and not go ahead with taxol. i would sit in my car and CRY before i had to force myself to go in for the neulasta shots after AC. it was such a horrible time. but now that i've had taxol #1, even though it was complete torture the first week afterward (severe bone pain), 9 days after taxol #1 i started feeling really good again--the best i've felt since i started chemo. i am eager to finish up, even though i know the taxol is going to be painful for a week at a time after each treatment. i don't dread it, but i really dreaded AC--especially the queasiness, the metallic taste in my mouth, the feeling of being toxic all the time, the extreme fatigue. taxol side effects are already bad for me--terrible neuropathy in the fingertips, insanely itchy hands, fingernails turning brown--but i'll take those any day over AC side effects. i do not have as much fatigue now as i had with AC. i can even take walks now. what i REALLY hate is not having nose hairs! i have a constant bloody nose--might be because of the super dry nevada air. very watery, burning eyes all the time. but my taste buds have returned. i'm on the countdown--32 more days until my last chemo.
congrats to all of you who have finished chemo!!!!!
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Re: dreading chemo. I certainly got that way during A/C, particulary on the days of the Neulasta shot. That was just awful for me. I did cry the morning of my last A/C because by that point I finally believed that I WOULD have FLS, the other three times weren't just flukes
That said, the Taxol, so far, has been much better to me. I'm on Day 2 of 2 out of 4 and feeling pretty good. I had a little hip achiness the last time but not until around Day 4 or 5. I've learned not to get too cocky, though. Who knows if it will be worse this time?
Now I'm at the point where I dread the TE expansion WAY more than the chemo. I only have one more to go, thank goodness...it has gotten so uncomfortable and my frankenboobs are doing more to hit my self-esteem than my bald head, LOL. My last appointment was supposed to be this coming Friday but my sister is visiting for the weekend and I REFUSE to be achy and miserable while she's here. She's been so helpful to me I really want to show her a good time while she's here. Chemo and expansion free weekend!! Whoope!!
Everyone feel good and take care of yourself.
Diane
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