Starting Chemo March 2015

shaz101

bekah, I'm so glad its all on track. Do we get to see these earnings?

rleepac

Ok but not in my ears LoL...I am so run down right now there's no way I'm pointing a camera at this face!

Funny earring story...it's about a 2 hour drive to the city and we had just gotten on the road this morning when DH says "goin commando huh? Where's your earrings?" Crap!!!! I never leave home without earrings so I made him stop at Old Navy so I could buy some

shaz101

Love your earrings and the story. Ha. I would do the same, earrings are a must. When I was in hospital the guy picking up the food trays said... have you finished sir! He then looked and corrected himself, but I'm sure earrings would have helped us both.

shaz101

cards

Great cards created by a cancer survivor. I think many of us relate!

neverthought

Dear Sharon,  Thanks so much for starting this thread.  It has helped me so much.  I hope you remain migraine free as much as possible. My ENT had me read "Heal Your Headache - The 1 2 3 Program" by David Buchholz. It contains a strict trigger elimination program that would probably not be a good idea to try right now unless you really want to lose weight. It eliminates everything from yogurt to bananas.... but I was desperate so gave it a try.

I am dreading next infusion, just because I can barely walk up the stairs now. But also woke up feeling optimistic as only 2 more to go.

Must be summer here - the coconut oil is crystal clear.  Should I stick it in the fridge?  Does honey need to be refrigerated?  It gets up to 90+ in my apartment.  Can't keep oil on hand in the summer, it just goes rancid.

Katy - love your mother's quilt square.  What a precious find.

Thinking of all mothers and daughters this weekend.  It's been 20 years and still missing my mom.

Carrie37

I'm so glad you are feeling better Sharon! I love those cards! The one about celebrating with something that doesn't taste horrible...haha! I have lost all tastebuds. My DH made breakfast this morning and even bacon didn't have flavor. How can that be?? Anyway, I have been enjoying my homemade iced coffee. Hot coffee is still not doing it for me. Theresa, you are my hero! Good for you for speaking up! I met the NP for the first time this week. I have to agree that it was an odd experience. I got a bloody nose while in the spa chair. She kinda freaked out..." I think that means we have to lower your dose!" And out of the room she flew to ask my MO only to return a few minutes later saying it was fine and not a cause for concern. I guess I have the beginnings of neuropathy. The bottoms of my feet burn like I am walking on hot pavement. Very odd and uncomfortable. I too took a three hour nap yesterday and just woke up from a nine hour sleep. I will need the rest for today as we have two soccer games and a busy day tomorrow! I'm hoping I can make it through the day tomorrow without mounds of tears!

I hope you all have a wonderful weekend free of nasty SE's! Hugs to all!

Trvler

Sharon: So happy you are having a headache free day!

Bekah: Sounds like you are moving forward. That would be great if you don't have to do rads!

Katy: Love the rooster! I have a rooster rug in my kitchen. The birds seem to be taking the day off. The nest doesn't even look half finished. Husband says they must be union.

Jackbirdie

Allison- I think they must be a pair. So often as we noted, the female looks so much different!

Maybe they are taking the day off.

Bekah- the earrings and the story are both great! Love that you've never lost your sense of humor through all you've suffered.

Sharon, every time I see your posts now, so regularly after your long absences, my heart sings. As Neverthought said, you started us off here, and your bravery through all if this has been amazing. You never know, if any other person, on any other day, had started this group, it might have turned out very different. But in spite of the shit sandwich, this very special group of people have shined in adversity, truly inspiring each other. Thanks to you.

The "N" word (neuropathy) seems to be popping up more and more often. I am so sorry that the list of SEs seems to be growing. Hopefully, it will stop in its tracks as soon as chemo stops. I had a sort of arthritis that my NP thought was gout, that she was in the middle of trying to dx when bc came knocking. It took a back seat. I stopped a lot of the meds she had prescribed because I was worried about, roll the tape, the GD liver enzymes. Surprisingly, the hand and feet tingling, numbness, swelling and pain hasn't gone away, but hasn't gotten worse. I kind of think the steroids help.

I didn't think it was gout anyway, I had no toe involvement, the pain presented bilaterally, swelling also..

Anyway, I was never happy with her or the clinic, with lousy communication, fax orders not going through, no follow up, and she tried to cancel my appt the day my biopsy results came. A half hour before I was to go. I made her tell me over the phone.

I had been trying to get a new pcp with all docs under one roof, but where my bs and mo are had not a single opening. Finally, about 3 weeks ago a very busy internist, who everyone says is so good and a darling (on his profile online, instead of talking about all if his special residencies and how special he is, he just simply said he likes to make people feel better) took me on. He is from Nepal. I haven't seen him yet, but his staff say his direct family is safe, but he is devastated.

Since I'm under weekly care with the mo, I don't meet him til next month, but all this talk of NPs people are talking about led me to tell my little story. I know there are excellent NPs and PAs out there, our Bekah among them. But whether MD, MO, BS, PS, NO or PA, it is so imporant to have a good relationship, and confidence. Without that, you cannot participate in your own care properly. Advocating for yourself with a medical professional can be daunting, because they DO know more about medicine. But you know your body, or you should, anyway.

Sorry for the long post. I'm hoping this latest change to a new doctor will finally put me on that path to a medical partnership I have been seeking, and which very fortunately, I do feel with my MO.

molly1976

This chemo thing is just so weird. Last week my hands and feet felt swollen and sore almost the entire week long, but after this round I'm not having any of that at all. I expected side effects to be roughly the same or cumulative but it seems like sometimes they crop up and then go away for long periods of time. I guess I shouldn't complain! I have 3 more taxols to go and no serious neuropathy yet, just mild reduction of sensation in a couple of fingertips now and then.

Jackbirdie

Molly- very glad to hear it! Hope you are able to enjoy the day! The whole weekend.

Here is the "Daily Jack" lesson. Seems he is going to keep trying until I get it! Hah!

I am

Jack is:

And:

Beachbum1023

SUNSCREEN!! LOL I wish I wish I was your little darling today. Napping in the sun, priceless!

Jackbirdie

Cheryl- same lesson every day guru says, until I get it

Trvler

In my next life, I have decided I want to come back as Jack!

Jackbirdie

he is quite evolved, seemingly, for a dog found running in the streets. And who still does run in the streets, when chemo brained mommy stands there like a dope and watches him run out!

I am having a really bad day. I think the Neulasta did me in. Tried to stay active earlier, but literally can only lie in bed now. Searched out Maggie Smith on Netflix. She always cheers me up. Even she has her work cut out for her today. Blech.

shaz101

neverthought, I'm so sorry you have been struggling so much too. Did the book help you? I'm thinking about downloading it, but I think these migraines are due to the chemo and not anything I'm doing or not doing! But if you have found some relief I am willing to give it a go. I had a migraine at 4am, the drugs have worked, but left me flat again.

I think Katy is our guru! She is our ships captain, looking after us all. Thank you so much. I hope you do find a medical team you are confident in.

Trvler

Katy: I am sorry you are having a bad day. I hope you find something good….maybe Judi Densch? She has some comedy show on PBS on Sats.

shaz101

today is the mothers day walk against breast cancer here. Its run every year to bring awareness to breast cancer. In previous years I have ran the 7.3kms. This year I'm sitting in bed crying my eyes out. My step daughter just sent me a photo of her in the walk with a bib on. It has my name on it! This is so unfair.

Jackbirdie

oh Sharon. Don't cry. Next year we'll be wild and crazy girls again rockin the West Coast! There is an end point to this. In a totally good way. Remove foot from mouth.

Allison! Excellent suggestion! Dame Judi on deck! Brilliant ladies. I feel like they must write their own lines they're so good!

Today has absolutely sucked. Pain. Major. But had a nice FaceTime with my bestie and unexpected text from the more remote of the brothers. Hoping the below will open up for mom by tomorrow.

Love you all.

Jackbirdie

Shaz- what I'm trying to say is I will make this effing bullshit up to you! It is most certainly unfair. And the most unfair to you. And I'm no captain. More like s court jester. But whatever works. xoxoxo

neverthought

Hi Sharon - I used to get migraines once in a while until I hit menopause when they got much more frequent. My gyn doc said is not unusual.  Sometimes chemo sends you into menopause?  An ENT recommended that book to me.  What I was surprised about was how many things have nitrates in them, which is a trigger.  So the book helped in that way.  Now I'm a compulsive label reader and cook from scratch much more.  Just have to be careful because I lost an awful lot of weight between not feeling good and the migraine diet.  Probably best check with your MO before trying it.

I hope all our SEs are temporary and months from now weird rashes, headaches, nosebleeds, fatigue and neuropathy won't even be on our radar.  I'm looking forward to a time when I'm tired I can just take a nap and get on with my life instead of worrying if I'll be able to make it across the street before a car runs me over!

Jackbirdie

managed to make myself something that looks good enough to eat. My best extra virgin and best balsamic. If this doesn't do the trick sling with Maggie and Judi, there's no hope for me.

Trvler

It IS unfair, Sharon. It f-ing sucks. Hugs from far away.

I am having a lot of the 'why me?"s lately. I have no idea how to punctuate that.

That looks delicious, Katy.

Italychick

Uggh, burning stomach today. Not nauseous, but feels more like indigestion that comes in like a flare, then goes away. Hopefully a bike ride tomorrow will get me back on track. I hate the day when I come down off the steroids, which is today. Having my own pity party right now. I'm not looking forward to two more rounds of this crap

Italychick

Sharon, I am so sorry. I'm sure seeing your name on a bib is like a smack in the face. But I'm sure she means well. It made me feel sad when you posted that comment, for you, for all of us.

I need a glass of wine I think, but I'm afraid to drink because my poor liver already is dealing with enough.

Angiel

Good Evening Ladies! It is 9:00 in Minneapolis and I'm dragging & heading to bed. I am asking that you send your positive thoughts & prayers for good weather tomorrow. Tomorrow is the Twin Cities' Race for the Cure. My sweet and super organized neighbor arranged a team in my honor. There are 104 of us signed up under #TeamAngie RackPack tomorrow - 16 are family coming from out of state. I am humbled beyond words.....we have raised over $3000 for breast cancer! Anyway, the weather looks nasty with morning highs in the 40s along with rain and winds. Ugh! We are planning a neighborhood BBQ after the race with 125 people and just don't have an alternate plan if it rains. I am worried. I am planning on running the 5K with my 10 year old and then my 12 year old will be doing the walk with my husband. However, they all are already complaining about going given the weather predictions. Seriously? Serenity now!

Wishing you all a wonderful Mother's Day filled with joy, happiness, and love!

shaz101

it seems to be a day of self pity! We are all going through so much both mentally and physically and I am blessed and so very grateful that I have all of you.

I'm sitting outside getting some fresh air and trying to shake these blues away.

Katy your lunch looks great! Its such a pity that the real taste will be hidden. Just enjoy the texture and colour of it.

Never thought, I will download it and have a read (when my head will let me)

HAPPY MOTHERS day to all of us... You don't have to give birth to be a mother. Katy, you are mother to me... But I'm looking forward to partying with you as well.

SueH58

OK, so many folks are having a down day. So, I'm going to share another possible "freebie" I may have discovered I've had pain on the outside of my foot for quite some time. Several days ago, I pushed around and found what I thought was a plantar's wart. Great. So I figured once I was done with chemo I'd have to see a podiatrist to remove the bugger. Anyway, went to take a shower tonight and checked out the old foot. The supposed wart brushed right off. So I googled to see if chemo would kill a plantar's wart and one site said "A couple off-label treatments are gaining favor with doctors....Another is injecting the wart with a chemotherapy drug called bleomycin, which should be used as "a last resort." Well Bleomycin is a "antineoplastic" or "cytotoxic." just like the 5FU I get in my CMF. I was never officially diagnosed with a plantar's wart, but whatever was there is gone, as is the pain. Hoping the old 5FU gets rid of the roots and all. I (we all) could use a break! Eureka!

rleepac

On one hand I kinda feel bad that I'm having a good emotional day after seeing all you struggling. I'm still on a little 'high' after relatively good news from the BS yesterday. On the other hand...I'm enjoying putting my pity party on hold for a few days.

My 13-yr-old DD is a handful and she always feels more open to talk freely with me than her dad (Um...thanks?). That's a blessing and a curse. I don't know where some of her anger comes from? Maybe it's just normal hormones and she's really good at expressing herself? I don't know...she seemed to feel a whole lot better after dumping on me so I guess that's a good thing.

Unfortunately I said something I regret. I said "you know...God might just decide to take me out of the picture to allow you and your dad to mend your relationship." She didn't freak out but I knew as a soon as I said it, it was the wrong thing to say! Sigh...13-yr-old girls!!!!! What to do?

One day at a time...I hope you are all in a better place tomorrow!

Bekah

Beachbum1023

Hi Sue, great news on the wart side effect! I have had a toe nail fungus going on long before I started chemo last August. And when my nails fell off from Taxol and regrew, the fungus was gone. So nice new nails again. So a good bonus. And my nails are very hard also. They look great but grow very slow, so maybe another bonus. The other strange one was I had an accident and damaged another nail and it would never grow. But now it looks almost like the others. Weird but after having a very bad nail for 30 years I'll take it.

slothabouttown

Wow. Yesterday was my worst day ever since joining this stupid spa. Everything hurt from my face to my feet and I pretty much just shuffled back and forth from the bed to the couch all day. I'm nervous today will hold more of the same so I keep testing myself out in tiny increments. Made the bed. Check. started load of laundry. Check. Now back to the recliner. Check. I hope I can leave this pity party today.

Happy Mothers Day to all the mom's... I hope your day is great! I've been trying to get a pic of this crazy bird nest outside my window and this is the best I can do. It's about a 2 foot long thin pendulum of moss and lichen with a hole in the center for the tiny birds. It's really cool but I have no idea what kind of birds made it. Their entry hole is right above the pinecone on the right