Starting chemo July 2014
Comments
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The one I made is the G view in the lower left hand corner. Shirley
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Good morning ladies. I am supposed to have round #3 tomorrow, and if I feel like I did this morning, don't know how I'll make it. I am not sleeping well, just can't get comfortable enough to fall asleep. My arthritic shoulders, knees, and back are hurting more than usual. My appointment is at 9:30, it's a half hour drive, I wasn't even up until 10 today. Maybe I'll have my shower and go to bed dressed and ready to roll. Thankfully I don't have to drive. I no longer have my own car. The one I was driving to go the few places I was going to was traded out for much needed work on the house this spring. It was my choice, the last time I drove it I had a tire separate on the turnpike on my way to a doctor's appointment, DH had to rescue me. The tire separation did a little damage to the front bumper. The car sat in the driveway after that, and when our friends who did the work for us asked about buying it we determined a trade would be beneficial to both.
Talk about making a short story long!
I stayed up too late, anyway, watched all three Matrix movies. I had only seen the first one.
I had a lot of scalp tenderness when my hair first started letting go; it still feels odd to me. Not itchy, not so much tender, just unusual. You might try finding a different cap. I'm sleeping in one I picked up from our cancer center front desk, where they have a basket full that are made and donated by a group of knitters/crocheters who gather in the lobby and do their needlework. It's a fairly thick and very soft yarn, so the hair isn't colliding with anything. Also, when you bathe, do you shampoo/condition? It does soften the hair shaft. Also, when it's all gone, or mostly, coconut oil is recommended for the scalp.
Do you take supplements? I ask because it seems so many of you have low counts so quickly. I was surprised when I got an A+ on my labs before round 2. I take a multivitamin, calcium-magnesium, and extra B-complex that are plant based and all natural from whole food sources. I've also been on rx vitamin D for ages, 50,000IU 2x a week, for a couple years now. Especially now when it's hard to eat a balanced diet because of the nausea, D, & C, I think the supplements are helpful. I don't want to promote any particular brand.
RainDew, some one characterized the catastrophizing as Canceritis. "Does this hangnail look like cancer to you?" I read it one one of the boards but I don't recall where. I thought it a propos. We try (most of the time) to dance around the fact that what we are dealing with is a known killer; whether we have known one personally, we have all known OF someone who has not survived it, and we are all at risk. As Coyote knows (and others), recurrence is no respecter of persons. And since we don't know why we got it, we don't know what to do different to guard against it. It's really the elephant in the room, especially on most of these forums. I think many of us are better prepared for zombie apocalypse than cancer.
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Hello Ladies
) Sorry I haven't stopped by to say hello in a few days, I have been keeping my self busy and actually feeling pretty good and took my son to Adventure Land yesterday for some fun in the sun. I am trying with all that I am to keep things as normal as possible for him
) I will go for my 3rd dose dense AC on Wednesday and I am hopeful that the SE will be minimal.. I have read about various side effects that some of you ladies have and I think other than the "nuclear diarrhea which Pinkninja calls it...( couldn't agree more lol..) bloating, gas and fatique I have been spared. Although I do think since I no longer have nose hair I am suffering allergies with runny eyes and nose...
I wanted to share this picture with all of you and tell you that I have the best friends any girl could ever ask for. I am the one in the middle and I call this my magic garden wig (if anyone remembers that show from years ago), it is the wig that makes me feel as close to me as before my hair loss
) The hair gets lost on the black shirt but it is long like the hair I had before ) I have been friends with one girl since 7th grade which is over 30 years and the other for 24 years. They ordered these fight like a girl shirts for us to wear together.. They spend the weekend with me every weekend of treatment and cook, clean and help with anything I need to do for myself or my son. I am so blessed... I already told you all about my amazing sister who takes me to every treatment and has shaved her head to support me.. My brother also shaved his head bald and I just received a text from my Dad that he didn't have the nerve to shave his head but he shaved his mustache off in support of my fight... How lucky am I to have such amazing people in my life ♥ I pray for all of you everyday that your fight gets easier with each treatment and that you never ever have to fight this BC battle again ... HUGS
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I had my DH shave my head with a number 4 guard which leaves about half an inch. It's not pretty - more patchy and gray then anything. I'm 43 but got early gray and have been coloring for years. Amazing- my head looks like a marble with the two colors! I had cut it short but knew that was a stop gap measure before I had to take it nearly all the way down. My hair was getting everywhere and we were all grossed out at the hunks coming out. That was day 18. It was heart wrenching, really, but my daughter grabbed my hand and held it. So sweet. She doesn't even know how that helped me.
I start my second treatment of TC Wednesday. I feel better knowing (overall) what to expect. I've got all those SE's mastered, just worried about any new ones popping their heads up!
JoeysMom - love the friends photo! It's so nice to have people in your corner! A good friend just texted me and wanted to know if she could have my daughter over Wed or Thurs. She's keeping track of my treatments and knew I'd need help. It's so awesome to have people step up for you. I hope you all have the same.
Benefiber is my friend! You can't taste it at all. I pour some in my green tea and can't taste it at all. Very little problems with my bowels, thankfully!
Much love to all this week who are doing treatments - and even for those who aren't!
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My blood counts have been doing well too although a little low for anemia but the dr told me taking iron doesn't help chemo anemia, just a transfusion. I take a lot of supplements because I also have fibromyalgia. I take a good multivitamin (GNC) super B complex, megared (krill oil) probiotic, CoQ10 and maybe a few others.
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Puffin, what you describe us exactly how I'm feeling, but after how crappy I felt last time I'm counting it as feeling good
Raindew, if you feel like you need to talk to someone, what about having therapy now instead of waiting till this is all done? I do understand where you're coming from, though. I'm generally a very optimistic person but I've had a few times lately where I've been obsessing over the worst things too. With me, it passes. Hopefully it will with you as well. I bet that will be the case once you get back on track.
JoeysMommy, love the pic!
I'm trying to get out to do at least something every day. For example: Yesterday I went to brunch with a friend and to the grocery store and library, then napped for 4 hours, then forced myself to go for a short walk around the neighborhood in the evening. Glad I did, too, because I felt much better after. Today I went to the park with my friend and watched her kids play while sitting under a tree in the shade and chatting. I'll probably nap for another couple of hours this afternoon, and I would love to get some baking done tonight if it cools off enough.
Big hugs to all!
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Have taken a couple naps today, walked around my yard with my walking stick and got a little fresh air, pulled up the last of my beets and cleaned them up and have them in the oven for tonight. Dizziness is better, heart not skipping around as much, walking a little better as long as I take it really slow, knees just a little achy. Last time on day 4 I was already back at the doctor's office with abdominal pain so this is going much better. Dare I hope I'm past the worst?!
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I hope so! I'm on day 5 and hoping the same thing for myself. Although right after I wrote that last post the fatigue dragged me under, so now I'm in my easy chair contemplating a nap. Seems like I'm good until like 2 or 3, then exhausted, then start feeling good again between 6 and 8, then good until 11 or 12. But again, I'll take the tiredness and wobbly achy legs over just about anything else!
It's nice to have an idea of when I'll be feeling well, though. I've scheduled yoga at 10am on Tuesday, Thursday, and Friday this week since I know I can be up and about by then.
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Puffin, I hope so! It's Day 5 for me, and I'm definitely feeling better today. I was actually hungry at dinner time!
JoeysMommy, you go girls! What an awesome photo!
RainDew, I hope you feel more upbeat soon. Work is still a big part of my life; that's why I'll be teaching two days a week this Fall. I know it sounds crazy, but I think it will keep me from dwelling on the worst.
Mags, good luck with treatment tomorrow! I haven't been sleeping that well, either. MO gave me a sleep aid, but it's potentially addictive so I use it sparingly.
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aaaaaargh..I've failed my follow up...no chemo for me today...
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RainDew -- sorry to hear that... Hope things get better for you soon!
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Aw man Raindew. I'm sorry. Sending you even more, even bigger hugs.
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sorry Rain dew (((hug)))
I'm on day 5 and I actually almost feel normal! I ate a real dinner a friend made for me and even ate salad! I haven't been able to eat salad cause of the indigestion. I was a little fatigued today but other than that and a little dizziness, I feel good. I can't wait to wake up and see if tomorrow will be this good too! Maybe we all felt so horrible after the first round due to the massive amount of front loading, I hope so!
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I know there are rx remedies for not only the sleep issues but the hot flashes as well, but I am wary of starting any rx that you have to be weaned off of. I had that with Cymbalta, which I know some people love, but when I went off it, under dr supervision, I fell into a black pit for a month. I don't think I ever truly got my "self" back after that, and it was two years ago.
I had something of an emotional setback today when I got a call from my eldest sister, who's 74, first time I've talked to her in over a year. Her voice was very flat and cool, even though she said she loved and missed me, there was no emotion in her voice that would tell me it was true. Cancer has changed me, not always in a bad way, but it's also revealed me, not always in a good way. I find I have at the core a lot of bitterness that has nothing at all to do with BC. That makes me sad. DH and I were talking about how different our relationships with our siblings are. He has four, I have five. The difference is that since he joined the Air Force at 19 he has never lived in the same city as his siblings, where I have not only lived in the same city, we have for most of our adult lives been closely involved in each others' lives and DH and I have helped them and their children so much, and really gotten no thanks for it. Now I am estranged from them all, by my choice, and though it's sad, I feel like we are all better off and the phone call only reinforced that.
Why can't I make a long story short? Sorry to vent.
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Shirley, I really like that. I think the loose back is good. It adds lift - like hair!
Rain - what a great opportunity to explore something new. I know there are things that you have wanted to do, see, or learn. Use the good days to do that. Even sort of good days can be used for something that will make you feel it is not "wasted". Find a "Pay It Forward" project to feel really fulfilled. That helps depression dry up an blow away!
I have a fun project going that I will be bringing to the site soon.
Would never have believed I would say this. "I hope you got chemo today!"
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I missed page 39 entirely before I wrote my last post. I'm sorry things didn't work out for the chemo RainDew. When will they give it another go?0 -
thanks all,
We'll try again on Friday or Monday I think.
I'm feeling a bit better. Totally know coyote is right - I need to find a project. Just not sure what that is. Exploring local non profits this week, looking for a volunteer opportunity, maybe in women's health.
I am usually a relatively positive person - all these tx delays just starting to feel like someone's kicked me when I'm down.
But we are strong women! We kick back!!
Fingers crossed I can have my tx on Friday/Monday...and big love to all of you.
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RainDew, I'm sorry, I missed your post earlier about your numbers being down. Hopefully you will get some rest and relaxation and be good to go Friday or Monday. I'm hoping my numbers will be good tomorrow, I'm feeling really run down, exhausted, yet having trouble sleeping. Maybe it's the steroids. My eyes hurt something awful. Going to be now. Nini ladies.
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Rain Dew....hang in there. I echo what Coyote said: it's one of the biggest ironies that we first dreaded the Doc's words, 'you need chemo' and once we're accepting of that journey, we dread hearing the Doc's words that our chemo is delayed. When I'm feeling down at all, I remind myself that this chemo thing, with all its associated tests, side effect, monitoring, is a result of many years of trials, tweaking, perfecting by some very big minds. It's a science that, while not perfect, is pretty darned sophisticated compared to what was available even 10 or 15 years ago. We are lucky.
Mags, I too have an estranged sister by my choice. I call her my 'narcissister' because she is one of those people that has to be the centre of attention and tells outrageous stories (lies). Here's some entertainment for you: she's sewed up a large cut on her arm with a needle and thread because she was too busy to go to the hospital (this earned her the nickname Rambo for awhile); she's landed a commercial jetliner because she knew the pilot; she's gone on stake-outs with the RCMP to catch mortgage fraudsters and used her night-vision goggles (we now call her Agent Wilson); she assisted in the delivery of our brother when she was 4 years old. While these stories are pretty funny, the one's that aren't are the way she essentially stole money from both of my parents and an aunt as the power of attorney. Unfortunately, none of them was willing to acknowledge that she couldn't be trusted. Sad that she really needs some help to see herself as others see her, but she just carries on. I chose not to have her in my life largely because she won't own up to what she's done, but also because I would certainly not have a friend in my life who behaved this way, so why would I allow this with someone just because she's a blood relation. I do have another sister and a brother who are very much a part of my life and are very supportive.
If I may share one more story: a 'friend' dropped by after my first round of chemo to bring some fresh veggies from a farmers' market. At that visit, she stated that she was available to drive me to appointments if we pre-booked with her. When my partner said that she would be driving me, but that we would really appreciate having this friend on 'stand by' in case of emergency (eg. to let our dog out if we were stuck at the hospital), she told us that, as a cancer survivor herself, she was so involved and engaged in life that she couldn't put her life on hold for us or anyone and that I would understand once I was a cancer survivor...I would share her 'philosophy of life'. First, I am a cancer survivor (Thyroid Ca in 1996). Second, I let her know that I did not, nor would not ever feel that I would exclude helping others to be 'fully engaged'. She started yelling, I got a nosebleed, blah blah blah. Needless to say, after much soul searching, we decided that this was not a good friend and she is not part of our lives at this time.
All to say...sometimes we are faced with having to cull the negative things from our lives....I do hope that most of us are feeling the love from friends and family. All of this is a wake-up call for me on how to treat others during any kind of crisis.
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Toxic people... It's part of why I basically became a hermit. Now, I deal with people by choice, not compulsion, or guilt. The only reason she called, and I answered, was that DH has been in contact with her DH, and mine asked me, Sunday, would I do him a favor? Or course, I said. Call your sister. I said, if she calls me, I will answer.
Last night, after it told him the conversation, he apologized for even asking me, he understood her flat affect, since he's known her for 27 years, he was sorry for putting me through that when I have so much else on my plate. He understood from BIL that she was hurting and sad, but apparently she had no compassion for me in all that.
She had to tell me that she is in a group that makes quilts for kids with cancer. How sweet, and how nice for them, but she does it because she is addicted to quilting and it's a good excuse to buy more fabric, even though she has (literally) rooms full of it. BIL is retired from military and civil service, so two full pensions plus his income as a priest, so her pension is all spent on fabric, and going to quilt shows.
Ok, so who gets PRE-CHEMO NAUSEA?? Good grief.
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Rain - Just remember when you find the perfect project that interests you that you still have to avoid germy environments! We are vulnerable.
It is interesting to me that so many women that I know have a difficult relationship (or none by choice) with a sister. Me too. It had to have started when we were quite young. My "perfect" sister has never approved of my artsy life style. In her mind it was a waste of time. One time not so long ago she walked into my studio (I foolishly left the door unlocked) when I was up to my armpits in gourd dust. I was hot and sweaty, wearing a respirator and goggles and a welders hat (in other word - really cute). She was in full Chico with gold and diamond bracelets cascaded up her arms. Her comment - "Oh, I see you are playing again." Now that I have finally acquired a bit of success with my playing, she wants some of my work (as a gift of course) and speaks well of her artist sister - stories tempered by the shocking tales like the time a friend and I came riding into their house on a Harley, dressed in full leathers, after a week's tour of the west coast.
To me the really sad thing is that she has more artistic talent in her little finger (that she does not use) than I can muster throwing 100% of myself into it.
I know there's a lot more to it, but I no longer let it get under my skin - which it did for years. Try going through the death of parents with a greedy, lying, money focused, blood sucking, narcissistic, sibling. Did I say that? Breathe deep and let it go. The point being, I've heard that stress is a big contributor to our shared problem. Also, (don't know if it is true or not -maybe just a rumor) a high percentage of breast cancer patients are "care-taker" types. I was my Mom's care-taker in her last years. Reading these posts, I see a lot of professional care-takers too.
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Anyone else's nose CONSTANTLY running???? It is so annoying!!!
I dont feel sick...have had very mild s/e's....except for the runny nose. And I dont think its from losing nose hairs because I havent really lost many. I blew my nose and no hairs came out. They're holding tight....along with my eyelashes and eyebrow (for now)...I hear those hang on till after chemo...and then decide fall off.
For those wondering about the cold caps....so far they are working. I am losing hair...yesterday being the worst day so far (prob lost @300+ hairs)...but no one would know I am doing chemo...unless I told them or they see the lovely port popping out of my chest. I have 4 more treatments....so have a ways to go, but someone just finished 8 rounds (4 AC then 4 TC and she still has a full head of hair).....so I'm hopeful!
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My nose is runny, too. But, it's not like I have a cold, so that's good.
Glad to hear that your cold cap efforts are paying off! I might have tried that if my real hair were worth saving. But, it's been so sad and pathetic in recent years, it was a pleasure to shave off. Sadly, my wig looks better.
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Ditto that, Elaine! Runny nose, don't seem to be losing nose hairs but never without a tissue in hand. Even, perhaps especially, while eating!I feel the same way about my hair, too. It was thin, fine, totally straight and wouldn't even hold a curl! That lovely do in my avatar was from a perm I got before Christmas. But my hair was falling out more than normal from thyroid issues so I am hoping for thick, dark, curly instead of thin white straight. My hairdresser said he had a client whose post-chemo hair was straight on one side and curly on the other. That would be great for pics done in profile I guess.
Coyote, I wouldn't have called myself mom's caregiver, but she did live with us for three years before we moved her to an independent living community because she stopped socializing, wouldn't have friends over even though she had a suite in our home, a bed, bath and sitting room with a hideabed for overnighters. But she loved her new apartment, made the best friend of her life (Maudie, who said to me after Mom passed, "I'll be your momma now." Then she passed too, but I used to go and spend a couple hours with her often, so I got to hear her stories.) but you're right about family. The original plan was that she would live with us but the others would help in various ways, which they really didn't. And after, since Mom went to church with us and had a circle of friends there, we made all the funeral arrangements and paid all the gratuities. Fortunately she had prepaid her cremation. But none of them offered to chip in, and when her life insurance was paid out to her beneficiaries, it was two sisters– not me. The oldest and the next younger one. Who knows why. But they weren't in a sharing mood – at least, until I was emptying Mom's jewelry box. They sure wanted their share of that.
What was that you said? Breathe deep and let it go.
Chemo over soon. I'll check in later. Cousin is making spaghetti for dinner, my request. She makes an awesome sauce and keeps some frozen for me. Yumm.
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Hi Ladies of July,
I posted in a response to Raindew that projects are good. One of the things that has always been a problem for me is that I have too many projects going at the same time! A few years ago I took on a personal fund raising project for the son of friends who became a paraplegic in an almost fatal car accident. It was a very successful project in that it raised over $10,000 to help him with equipment that was not covered by insurance. I have told you that I do gourd art and might have mentioned I make jewelry also. The project was called "Jake Bracelets" because I made glass beaded bracelets that were given to anyone who donated to Jake's recovery fund. I subsequently used the same project to raise funds for the local cancer support organization. I haven't done this for a year or so, so I think it is time again. I would like to show my support and bonding with all of my friends on our July List (gotta limit it to the existing list
) by gifting you with one of the bracelets I make. I never accept money for these, it is a "Pay-It-Forward" thing. It's like you, Squirrel, your hat project encouraged me to come forward. In this case, you will need to tell me what color you want (select a #1 and a #2 because some colors are limited). I'll try to make your first choice color. I like the monochromatic look, but if you like a mix, tell me. If you have no preference, I have more blues and gold beads and it will likely be one of those. Let me know your wrist size. (Metric is okay Mumsford
). Of course you will have to tell me where to send it in a PM. Here are the available colors. They all have a ribbon and a heart. 
I will be doing this until my next chemo - taking a 10 - 12 day recovery break - and starting the next round of bracelets. The ones pictured above are all available. Most of them fit a 7 inch +/- wrist with a bit of drop. I hope you like them! I would love it if we all wear them.
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Coyote,
These are beautiful!! I would love to have one!
Wrist size 7"
Royal
Bright blue
Shirley
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Oh, Coyote, what a lovely offer! Thank you.
#1 choice teal monochromatic
#2 choice gold
wrist size 7"How fun to think we'd be sharing your beautiful jewelry.
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I've been in a black hole... the heparin they gave me after chemo to flush my port gave me a rapid heart beat. I'd be asleep and wake to the dum dum dum of my heart pounding in my chest even scarier than those times were the times it would just thud dum really hard once, that seems to be going away now thankfully.
Had an appointment with radiation therapists yesterday to discuss radiation after chemo, and it didnt go well. All this time my onco has told me the treatment plan would be chemo, lumpectomy, radiation, estrogen suppression... well the radiation therapist shot those dreams to hell yesterday... apparently when you have lupus radiation is not an option. I know this means mastectomy is my only choice now. Onco has pushed radiation in addition to chemo due to the aggressiveness of my cancer, so not sure what that means in terms of chance of cancer coming back later now that I know I can't have radiation...
Read all of your stories about your sisters... makes me glad I'm the only girl- but I do have an older brother who fits in with the narcissist model. My grandfather had Alzheimer's and I helped my grandmother care for him until he passed away. (She refused to put him in a nursing home and after working in healthcare field as a hearing aid dispenser seeing the care some of these poor helpless people got I cant say I blame her!) When my grandfather died my older brother cleaned out my grandpa's storage sheds taking what he wanted and burning or throwing away what he didnt want. I saw pieces of burned photographs (I've always been the sentimental family historian) in his burn pile, found a piece of what was blown glass knick knacks my grandpa collected- I have a tail, I think to a lion... anyway my mother (it was her father) my little brother and I were all upset by the destruction of things that held sentimental value and I confronted my brother about these things and he said it was all junk and he basically did us all a favor and we should have thanked him. Our relationship has been strained since.
I found out he took a 4 day weekend to the beach a few weeks ago... taking two of those days off work saying he had to take me to the doctor for treatment. I wanted to call his work when I found his out and tell them it was a lie. I have not seen him in months and he definitely didn't take me to treatment!
Sorry this is long and rambling. Hope you are all doing as well as possible... I'm down but not out
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Coyote -
The bracelets are beautiful! I would love one if you have time.
Wrist size: 6 inches
Color choice: Royal blue, or any of the blue or teal ones!
Thanks so much!
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Oh, Coyote, thank you. They are lovely! I just returned home from MO to learn that one of my liver function tests is way high...no chemo for me this week, either. I'm surprised at how upset I am and seeing these lovely bracelets and just being grateful to you (and all the July girls) for your generosity has made me feel better already.
I would be so proud to wear one. I love the bright blue, but could really get into something silver or black, since I wear a lot of greys and black. My wrist is 6" (I'm happy with a bit of a drop).
Thank you again.
N
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