Starting Chemo March 2015

Trvler

I did get a referral to another MO. I am also going to see one in her group I think.

Neverth: Is this possibly due to low blood pressure at all? It has been happening to me lately and makes me lightheaded.

Karen: Thanks for that post. It is helpful. I know I am not being unreasonable to expect more from my MO. Hearing it from you all helps me.

rleepac

I didn't hear back from my boss by the end of the day so he might be unpleasantly surprised tomorrow morning but I've been warning him for weeks that I didn't know how much longer I could handle 2 days a week. I guess it just hit me harder today and I had enough. He will guilt trip me a little but overall he's been really supportive.

I think CA state disability is pretty quick but I don't know for sure. I have a little tucked away so I should be ok until it kicks in but I'm definitely taking myself out out the work world for now. My patients will be better off for it too. They deserve some one who is all in for them!

I don't know what I feel right now but relief is one of many emotions I'm experiencing...

Bekah

eheinrich

I usually wear blue nail polish on my toesies. Tonight I removed it to go fresh and my cute little baby toes have 1/2 black nails. Poopers

SpecialK

I just want to say - as someone who is further down the road from where you all are right now - your relationship with your MO is the most important because it is the longest and most critical one.  You need to feel comfortable with that person, and feel that they are collaborative with other docs and with you, open to new ideas, questions, or concepts that come from outside - or from you.  I have graduated from the every three month appointments, to the every six month appointments and I always have a list and a couple of studies in my hand.  My MO just smiles, like he expects nothing less, and we discuss for as long as it takes.  I always feel like I am his only patient during the time we spend together - he is not distracted, he is fully focused on me.  He has told me how much he enjoys my level of participation and interest in my treatment.  He does tumor markers, CEA, Vitamin D, a CBC and CMP every time I see him, and he orders scans if I ask and it is warranted - this is fairly unusual, so some of your docs may not do this - it actually is not the accepted protocol for early stage patients.  I personally need a doc who will follow me this closely post-treatment, it makes me feel more secure and that I am being closely watched.  Some patients feel like they are dismissed after treatment, but I feel fortunate that the level of scrutiny seems appropriate - and any concerns are really listened to.  I have seen his PA a number of times - love her, and his new NP - love her a bit less but I don't know her as well yet, but I know I can access him if I need to - I seem to be alternating between them at appointments, but I see him at least once a year.  I have had the opportunity to remain on his radar at other times as I have two friends that I accompanied to consults and treatment - one for TN breast cancer, one for sarcomatoid mesothelioma - who have been treated in the same practice by other oncologists that specialized in their particular situations - but I always was able to speak to my MO when I bumped into him.  I still have my port so I am also there every six weeks to get it flushed, and I do it on the days he is in that office, so have the chance to say hello then too.  If you are not happy with your MO, find one you feel really takes care of you as a patient, and a person.  It will go a long way to making you feel you can face the uncertainty we all do going forward from this point - it is essential. 

Italychick

in total meltdown mode. Grand baby 3, Addison, has eczema and I couldn't get it under control today, had to give her Benadryl. Grand baby 2, Ella started some horrible poop thing this afternoon and went home with hives on her butt, my daughter said she pooped again after going home and was screaming in pain. So she also got Benadryl. Grand baby 1, Jack, I didn't pay enough attention to when we were outside in their little pools, and he got a sunburn. So sitting here crying and eating ice cream, thinking about a Valium. Sugar free ice cream at that, so not even a guilty pleasure

I'm so sensitive to being a failure after this breast cancer diagnosis, and I hate it. I feel like I have let everybody down, and when anything happens, I blame myself. Even my son said he thought I was invincible, and he was shocked I got breast cancer. Man, I've got a whirlwind of shit going on in my head right now.

Oh, and my step daughter is here on suicide watch, we are taking her to a psychiatrist on Friday. And I feel like a failure because I can't help her either.

And I'm old, bald, fat, my feet hurt, and I look at my hair and nails and eyebrows a hundred times a day thinking please go back to normal, please!

Big pity party over here.

wpmoon

Theresa - stop. you are not a failure. You couldn't control getting cancer. And to us, to me at least, you are invincible. You've been such a positive reinforcement during this whole shit sandwich, proving to us, and to cancer, that it can't take your life from you. Cry. Eat the ice cream. Your feelings are valid. The frustration is real - we all feel it, too. But you are not a failure and your family loves you. You are amazing.

Jackbirdie

Ditto, Whitney, T! I don't have much right now but I assure you you're not a failure. Thinking of you tonight. You can't control the world, as strong as you are. Some of it you have to just let be right now. Grandkids will be ok. Not.your.fault

avmom

((((Theresa)))), sometimes a pity party is the place you need to be. Just don't stay there any longer than necessary. You have been an inspiration to many here, with your many successes through the chemotherapy mill. I admire your bike exploits enormously.


Please be gentle with yourself. We can only do what we can do, and it is a major frustration that our abilities are compromised during chemo. I, too, have sore feet, and am fat, and old, and tired, and stupid (I really notice the cognitive impairment). It's ridiculous-I used to be able to walk miles; now, a few hundred yards nearly does me in.

Sugar free ice cream? Is it any good? I'm not much of a dairy person, but have always figured that, if I must have some guilty pleasure, nothing but the real thing will scratch that itch. I ate a little ice cream during chemo, but Popsicles were my default cold treat.

Do you have access to any support nearby? I can send a virtual hug, but it sounds like you could use a real one. Hang in there, there are lots of people cheering for you.

rleepac

Oh I forgot to post earlier but here is my hair pic of the week.

I do have a little folliculitis on top and in trying coconut oil on that but otherwise it's coming along.

Italychick

Thanks everybody. I'm just so used to being strong and I don't know how I got here. I will rebound tomorrow, I always do, but I can't help but thinking what did I do wrong to get this stinking, rotten, crappy disease? It is hitting me that I will always wonder and second guess every pain, checking my breasts for lumps, waiting for the ax to fall on my head. And then other days I think most women go on and live a normal life, and it never comes back.

I know it sounds stupid, but if I had my hair and eyebrows at least I could pretend "normal." And I hate everybody saying things will go back to normal. The other day at work I was kind of mean, a woman said oh, I had a blood test scare, thankfully everything is fine, and she wanted to go on and on about her scare. I looked at her and said trade you places, and she quit talking. Then I felt mean for saying anything.

Not at my best right now. But sleep and a new day will re-set me.

So glad for all of you, I know you get it.

Wow Bekah your hair is looking great!

rleepac

Theresa - kids get 'stuff' like this all the time. It is in no way a reflection on you! You're an awesome grandma and they're lucky to have you!

avmom

Bekah, you win the hair sweepstakes! Your hair looks marvellous! Mine is absolutely unchanged from when I buzzed it in March. It seems crazy to me that my fingernails have continued to grow, while my hair stays the same, and my eyebrows continue to disappear.

Good for you to take some time away from work. Rest, and get yourself ready for surgery.

Theresa, no one needs to have done anything wrong to get cancer. One in eight. The primary risk for getting cancer is simply being alive, and although occasionally a "cause" can be singled out, over 80% of the time, it just appears. No one knows why we get to be in this club.

My DH and I are leaving in a few hours to head across the prairies to spend a month at the family cottage in lake country, two provinces away. Our destination is nearly at the Manitoba/Ontario border, about a thousand miles away (1,400 kilometres or so). We usually do it in a single, long day of driving, but we plan to stop overnight this year. I won't likely have regular internet access there, so I won't be able to check in with my peeps here as often. Last year, I would drive about 5 miles to the little store where we bought the newspaper, as they had a wifi hotspot, but I won't be doing that every day. A month by a lake shuld be heavenly, particularly for DH. This has been very tough for him, and he is looking very worn down. It will be so good for him to not have to do the daily grind at work, only to come home to see me sick.

Gentle hugs to all

IndyGal35

AV - enjoy your time at that beautiful lake. I hope it renews your body and spirit. We wil be thinking of you while you are gone, but try to check in when you can. Let us know how the scenery is treating you, and share some pics when you can!

Theresa, you have been such an inspiration to me. There are days when I barely get out of bed, let alone ride for miles on a bike! I've had to cut myself some slack too and stop kicking myself so hard. My old normal is gone forever. I now try to just say I want to get back to healthy - body and mind. They've both taken a tremendous hit lately.

Great hair pic, Bekah! So reassuring! My brows are almost all gone as of the past weekend. Are yours starting to come back yet? So glad you opted for disability, and I truly wish I had your courage. I hope you are approved quickly. You can now focus on what's most important - your health!

Jackbirdie

HAPPY BIRTHDAY EILEEN!!!!

🎉🎉🎉👏🏻👏🏻👏🏻👏🏻🎈🎈🔔🎉🎉🎉😂😂🎈🎈🔔🎉🎉🎂🎂🎂🎂🎂🎂🎂🍸🍸😎👏🏻👏🏻🎉🎉🎈🎈🎂🎂🎂🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎈🎈🔔🎈🔔🔔🔔🎉🔔🎈🔔🎉🔔🎉🎉🔔🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

Jackbirdie

Av- your trip sounds wonderful. I hope both you and your husband find it restorative! Would love to see pics!

Be good and kind to yourself

Trvler

Theresa: EVERY single feeling you have is completely valid and normal. I have had every one of them. You are not a failure. You as just not perfect. No one is. I know you will get out of feeling this way. You have such a great positive attitude and I know that is probably why all of your feelings are making you think you are a failure. We ALL make mistakes. Those kids are beyond lucky to have such an involved, loving grandma.

Avmom: I would LOVE to do a trip like that. Enjoy yourself.

Thanks Special, for your thoughts on the MO. I should probably come up with a long list go questions to ask my 2 MO's that I am interviewing. Your post leads me in the right direction.

Bekah: Love the hair. SO jealous. I, too, just can't feel like I am seeing any growth. I might have some peach fuzz that is very light but too hard to tell at this point. Eyebrows going fast. Eyelashes virtually gone.

Meme117

thanks for all the lump info, I'm scheduled for 8/4. I'm on vaca in wildwood nj, weather has been sun then cloudy then rain. I love the beach and wish I lived closer. I've loved no thinking about BC except for the hat wearing and sitting under umbrella. Off to walk on the beach - will catch up on reading in a few days. Have a great day and happy canada day!

Italychick

Happy birthday Eileen!

Off to jury duty for me today! Ugh!

KBeee

Theresa, You are beautiful, you are strong, you are an excellent mom, step-mom, grandma, and friend. You did not thing to cause your cancer except being born with 2 X chromosomes and like the rest of us, having a bit of bad luck. You had no more control over that than you did of your grandbabies crying. It is hard when they cry and cry; we feel do helpless. I had 2 colicky babies and still wonder some days how I survived those months. Normal may never return, but a new normal will, and there will be more sunshine than clouds, and the clouds that are there will have silver linings. (((HUGS)))

Bekah, Keep posting those hair pictures so I can keep showing my head what it needs to do. You look great!

Everyone heading off on vacation, have a great time!

Happy Birthday Eileen!

Trvler

I do think I have white peach fuzz! Yeah. lol. I will take ANYTHING I can get. Not very warm though.

eheinrich

Theresa: Jury duty after having a rough day seems mean. I hope you're feeling better. There are definitely days when it's all overwhelming. I'm glad you shared with us. Babies get things all the time - it's just sucky that those 3 decided to get stuff all at once. Coincidence? Baby conspiracy? I can see them under a blanket fort planning it out :P We used to be pretty sure our girls had those sort of meetings - OK I'll keep them awake all night MWS, you take the other days... ((((hugs))))

Bekah: great job with the hair. Mine is peach fuzzy like a baby duck. I've tried taking pics but you just can't see anything. It's coming in my regular dark brown with a lot of what appears to be blonde (but is probably gray). Not a great look. Yours looks good though. My leg & chin hairs are coming back in too. Before you think I'm a hag just 3 or 4 chin hairs - I'm always on top of that, was so glad when I didn't have to be vigilant- too young for chin hairs!

Leighrh

Happy BDAY Eileen!

Yeah Lee and Diane for NO MORE CHEMO!!!!!

Bekah.... I am sure you are relieved, if I ever get up the nerve to take some time I am sure it will be a weight lifted..... but I keep pushing through for some reason 

Allison, I hope you find a better MO! I agree that you def need a new one.  Mine is super! I have seen him almost every time, he knows I prefer to see him and  not his PA.  He even tries to get me in early if he sees that I am there early.  He listens to all my rants...... he still bold face lies to my face about some things.... LOL  but I guess that's his job!  He is the one who told me not to look at Taxol as 12 weeks.... told me I could stop any time I wanted.... just to take it week by week.  I know that's crazy but it helps me to know that if I can just do it one week at a time then I can get through all 12.

Theresa... rant away sister.... you have championed through this shit!!!!  I too hate inspirational crap..... I am not on some stupid journey... I am not AMAZING... I'm just some chick trying to get through treatment without choking someone out...LOL!!!!!!

mysunshine48

Special K, what are tests, CEA and CMP that you get every 6 months? What do tumor markers do? My MO is not as "there with me" as yours seems to be. I have one treatment of C/T left. When I started trestment, I was so naive......guess I still am. She never told me why she chose C/T, just said that is what you will be getting. I only see her every three weeks, right before my treatment. Otherwise, I see her PA. I asked her PA whst happens when I finish treatment and she said we will see you for blood work every three months. She did not says for how long the three month visits would be. I asked her if I would be getting a PET scan or any other tests and she said not unless you need do them, but not a PET scan as insurance will not pay for it. She said these things as she was typing, never looking at me. I never know what questions to ask. Can you offers some insight? I sure would appreciate it. I do not like the feeling of getting close to the end of treatment and being left alone.

slothabouttown

Eileen happy birthday! In honor of your special day I think we should petition the BCO moderators to have the term "boob hole" or BH, added to the list of definitions on this site.

Theresa, every time you've posted about your grandkids I've always thought how lucky they are to have such a rock star for a grandma, seriously. Give em hell at jury duty.

SpecialK

 I want to mention that as you are finishing the acute phase of treatment how you will be followed by your oncologist becomes a new stressor for many. I feel it is one of the things that is important to establish when trying to find a MO initially.  I know most of us are not thinking about that at the start - we are focused on treatment we are about to have. Some don't want that level of scrutiny and would like to avoid seeing their MO, and are fine with trying not to think about cancer, but I suspect most of us derive some comfort in being watched, particularly if we continue to be reassured by normal results of whatever screening is provided.  Because my MO does do tumor markers and labs every time I see him ( I have these done the week before so the results are in before I see him), and will scan if I present with an issue, it has made it easier to dismiss worries from my mind.  Your oncologists will say that they do not routinely scan unless you have symptoms - that finding mets any sooner does not change treatment.  This is the standard (ASCO approved) and accepted approach, so I personally like that my MO watches closely, and is responsive - maybe earlier than others - if there is a need. 

For all - if you are post-menopausal and ER+, and will be taking Femara, Arimidex or Aromasin, ask your MO to order a baseline DEXA (bone density test) scan before you start hormonal therapy.  These drugs can cause bone loss and you need a baseline before you start. If you are taking Tamoxifen this is less of an issue because it allows circulating estrogen to continue, which in turn helps ensure bone health in pre-meno women.  If post-meno and taking Tamoxifen, it can actually build bone - so yay!  All of you also need a vitamin D test, if you have not already addressed this - most of us are deficient.  Most naturalpathic oncs like to see vitamin D up around 70 for cancer patients - mine was in the teens right after chemo, and I have to supplement to keep it out of the basement.  I can't go out in the sun due to the extensive skin cancer I have had so supplementation is key for me.  Having good bone density is thought to make it an inhospitable environment for cancer, and a good vitamin D level and calcium supplementation is helpful with this. 

mysunshine - CEA is a measurement of carcinoembryonic antigen, and is a tumor marker.  It has a normal range so if the value is elevated it is a potential sign of recurrence or metastasis.  My MO does CA27/29 tumor markers also - but be aware that tumor markers such as these are used for trending, not for a single elevated result, and don't work for some.  Inflammation in the body can cause these to be elevated, and a significant number of MO do not use tumor markers because they feel that they are unreliable.  I would also advise waiting a period after chemo is done to test with tumor markers - inflammation from chemo can drive these up and cause an unnecessary scare - happened to me.  My CA27/29 was double high normal right after chemo - took a couple of months to come back down, but I was a swollen mess as TCH ended.  CMP is a complete metabolic panel - this is a more common test to have at your primary care, but it shows kidney and liver function, and also glucose - all of which can be out of whack after chemo/steroids, so this is a test looking at re-checking body functions.  Some primary care run a BMP - which is a basic metabolic panel, the CMP has more things they look at.  It is usual to only see your MO every three weeks - just before chemo to review your CBC and determine whether you are ok for another cycle, and to review your side effects for purposes of mitigation or dose adjustment - I did as well.  I came in weekly for blood draws during chemo but did not see a provider, just got the blood work done.  You usually see your MO every three months for the first year after treatment, then move to every six months.  PET is not usually done for your stage, with no positive nodes.  PET technology can only see established tumors or metastasis of a certain size - I believe 5mm or larger, so they only use it in certain circumstances. If you see others getting PET remember that they may have been node positive, or had more aggressive subtypes of cancer. The rationale for choosing Taxotere/Cytoxan for you I would assume was avoiding the Adriamycin cardiac risk, you had a smaller, intermediate grade mass and the 4 cycles gave you more minimal exposure to side effects while still being effective, NCCN guidelines approve this regimen for your circumstances.  Questions for your MO - I would ask what labs will routinely be done after chemo is finished and why, and ask if you can see your doctor each time and not the PA (if you are at FCS ask that question at the front desk - they have a mechanism that allows them to schedule the appointment that way), if you are at another office, just say that is what you prefer - you're the boss!  Ask about supplements and what they might recommend, but don't expect a lot of help on that.  Most MO will only recommend specific things, like Vit D, if there is trial data supporting the recommendation.  If you have new pain or a new symptom, keep a daily log that details where/when/under what circumstances the pain occurs, and if it lasts for 3 weeks or more alert your MO and make an appointment even if it is between your regular appointments.  This recently happened to me - I developed unrelenting hip pain but it happened to be a month before I was already scheduled to see my MO.  He ordered bi-lat hip MRI and lumbar MRI, and a DEXA.  This was the first time I was really scared about mets, but it turned out to be trochanteric bursitis, and stress tears in the hip muscle and I am now receiving physical therapy.  The MRI turned up some disk issues, which pre-dated breast cancer - but now there are additional areas, and also bone spurs in the thoracic vertebrae - all of this is good info because if my back hurts it doesn't make me nervous that it is spinal mets.

Yay for those finishing or recently finished!  You did it!

Italychick

Allison, I'm with you in the white peach fuzz. Even tried coloring it, with no success lol. Eileen I tried taking a picture too. Nothing showed up lol, but I can see the hairs with a magnifying glass. I think Bekah is gonna win the hair grew back the fastest award. And it looks straight and even too!

leighrh, I love the phrase "choking someone out." My little brother says that all the time, and always cracks me up. Although he adds a few swear words in the mix too.

eheinrich

Sloth: you always make me laugh!

Jackbirdie

Sloth- you always make me laugh too. Guaranteed. Few things are a guarantee in my life right now so I SO APPRECIATE IT!

I am feeling a bit like I'm turning the corner this morning. Very grateful.

And here is more than you ever wanted to know about my hair

Trvler

Looks promising, Katy!

Happy birthday, Eileen!!

I am taking notes on the questions to ask the MO, K. They are helpful. I am going to now make an appointment with one more and interview 2 of them so questions to ask are very helpful. I still need to thoroughly review the contents of your message. Just haven't had a chance. But I can say that YOU have provided me with MUCH more knowledge than just about every doctor I have seen. You would have been a great one. But we are very lucky that you are here helping us.

Italychick

Katy, soon! And dye that shit strawberry blonde when it gets long enough, I know you loved your old hair! I think I have a similar amount to you, but mine is mixed in dark and white. So I guess I will look like a skunk lol! Interspersed between the dark hair and what looks like blackheads is white hair that doesn't photograph well

I'm back to normal today, thanks for being there yesterday everybody!