...sounds very much how I felt with my BC diagnosis 5 years ago. It is very confusing and pretty overwhelming. I am sorry you are going through this, but glad you have supportive family around you to help with the many decisions.

Edited to add...
You are rightly deciding who can help you with decision-making. I struggled a lot with telling people in my family, especially early on when I didn't have the answers myself. I told my brother first because I knew he could help me deal with my mom. I knew that would add to my stress. Its okay to be a bit selfish, if you need to, and put your own needs first right now.

Let's hope for a reason to celebrate.

Keep your chin up.

I guess I won't be able to tell anyone until tomorrow - my sister seems to be out doing something fun tonight, lucky one. Tomorrow I'm going to visit my PCP, who doesn't even know about any of this yet.
It's just nuts that I could feel fine and yet have this issue!
One thing that fell by the wayside over the last few days was my low-carb regimen! I've been treating myself to a few treats. I'll get back to it, but I needed a bit of indulgence for sure. We tried a new Chinese restaurant and yum!

...during times of stress. Nothing wrong with indulging a bit... 😉

I put my earphones on, cover my eyes and the world goes away.

I was told I'd hear from two labs and a doctor today. I finally called and one had me in the pile. Then I find out that for one lab test, I need to go dig up my last mammogram before they'll schedule the new one. For the MRI, I need to go somewhere else for a kidney test? I HATE when you don't hear when you're promised you will, and when one office doesn't send over a request or authorization.
Then the doctor's office asks me when my surgery is scheduled. Excuse me? I just saw a doctor yesterday for the first time and I have no clue as to how any of this is supposed to work.
Gahhhhhhh!

It will get better .

...with olddots that it will get better once they have you into their system. You will also become more familiar with the process.
Does your doctor have a coordinator for breast care or for women's health? If they do, call them and ask for services to guide you. They will know what you are dealing with. Also...some communities have volunteer organizations that provide support groups. I found those by googling BC and my city/county name.

I found something of immense help, it is on Breastcancer.org BUT holds true for any kind of cancer....it is informaton on how to help prevent all the various medical appts and services from inadvertently messing you over.

And yep, even tho everything I need is in ONE Wing of the local hospital, no one has ALL of my file at hand, they are always asking for the same info over and over.

You might be interested in this:
https://community.breastcancer.org/forum/5/topics/748296

No one wants this diagnosis, but at least we can help as best we we can.

Share as much as you are comfortable; can we at ask your age )and rough location, like "southwest&quot so to put in in context? You already mentioned you have a mother and daughters. Did they give you a staging number (how much they think it has spread, if any?).

I don't have breast canceer myself, so I'll defer questions about that to others. Mine is late stage, but of another origination.

The big thing is that you always have people to talk to here, and you can PM us if you ask (I'll preempt and say it's okay to PM myself, at least). And if you need phone numbers, you can usually get a few as well.

Unless you have some fast-moving four-days-to-live diagnosis, most of this stuff is slow enough to give you a chance to wrap your brain around and not panic and jump to conclusions. It can take longer to die than one might think. I wish you the best, and let us know how it's going.

- Tab

OK, so I'm 65. Currently living in the Space Coast area of Florida. I grew up, and lived most of my life, on long Island, NY. My whole family is in the NY metro area; I moved here when i met my husband online.
I have no diagnoses for spread or anything yet. I had gone to the plastic surgeon who did my breast reduction 1 1/2 years ago, with what I THOUGHT was troublesome scar tissue. he scheduled me for surgery that night. Thought it was a hematoma, and then told me it was fatty necrosis. Then the biopsy came back.
He had removed as little of the breast (about 1/4) as possible, since he didn't know the prognosis yet. Based on what the cancer surgeon told me, I will most likely have to have the rest of the breast removed. Like I said to my husband, hey! it's not a part that would impede my quality of life in any way (except for 'symmetry' LOL). I'll still be able to walk, talk, breathe, eat, poop, etc.
I guess I need my tests done before anyone can make an evaluation of my situation.
In the meantime I'm keeping busy with my sewing. And we are figuring out how to get the process a bit more organized. I appreciate the support very much.

and we're hear for you.

We made a list this morning of everything to jump on Monday morning. First off, my plastic surgeon left a stitch end poking out that's driving me crazy! have to see if he can do something with that. Actually nice to have something small like that to be annoyed about.

...are distractions. They help.
And it gives you some control over a situation which steals that sense of control away, like any kind of cancer does.
That stitch does sound painful, though. 😜

We drove to the hospital, got my last mammo on disc, and drove it right to the lab; they gave me my appointment. Then, after spending hours trying to figure out how to get the blood test that comes BEFORE the MRI scheduled, I got a phone call about setting it up. Finally, we went to my plastic surgeon (who got this whole procedure started), and i got him to cut off a stitch that was poking me. He actually took us into his office, and talked to us for quite a while, explaining procedures and what to anticipate. Got a scrip for Xanax, too!
"Better Call Saul" and lasagne tonight. Good night.

Last edited Thu Mar 17, 2016, 08:23 AM - Edit history (1)

Today I met my radiation therapy doctor, and he went over the complete process of cancer treatment with me. A nice Italian, formerly from Long Island (my home!), and he was really reassuring.
The one snag so far is that I didn't know they would need the results of my new mammogram in order to do the MRI. The mammo is tomorrow, and I'm hoping they can schedule the MRI ASAP...otherwise I'll need to postpone my return visit to the surgeon.
Still left: visit with the dreaded chemo doctor; that's next week.

On the distraction side: I made risotto last night for the first time ever - Yum! And we're watching "House of Cards." Barely one squinch more out there than real politics right now.

...of handling the process. It IS stressful, but making decisions a little at a time and planning for activities to de stress is a wonderful strategy!
One step at a time...

Last edited Thu Mar 17, 2016, 11:02 PM - Edit history (1)

I got my mammo today. They decided to also do an ultrasound for clarification. The dr? technician? told me the results looked really good...that all she saw was some liquid from the surgery I had 2 1/2 weeks ago, that would normally go away over time. She was implying that there might not be any more bad stuff left. Well, I can't allow myself to even think that.
I also was able to get my MRI for tomorrow. These things seem to work out best if you go rather than call. Then I talked to my main doctor's assistant and she moved my return visit to him up to next Tuesday...then he goes on spring holiday. So, I guess I'll know what's what by then! That'll mean I'll be able to talk to my daughters and my mother, and let them know what's happening. One daughter is in Mexico right now - she just broke up with her boyfriend, a guy who's not good for her at all, and I will definitely wait until her trip is over.
As always, sewing to keep me busy, more House of Cards, and for tonight PIZZA from Baci!

I'm beginning to realize that this MRI today is probably the most important test I have ever taken. After the doctor said that the ultrasound looked good, my hopes began to soar. I'm still trying to be prepared for the worst...but hoping with all of my being that it may not be that bad.

You're laying on this hard plastic frame, you can't move. And then my curly hair started itching my ear and my nose. The noise and the closed-in-ness didn't bother me, but the hard base was really hurting my ribs. So glad that's over.
I see the chemo doctor on Monday, then go back to the surgeon for diagnosis and a plan, I guess, for what exactly is going to be happening.

Great people here who have helped me all the way.

Let's just say it all got real very fast.
He was going by the results of my biopsy, and hasn't seen any of the tests I've done since.

Now, I don't see the surgeon, who received all my tests, until tomorrow. I'm going to try to hold it together until I hear what he has to say. I realize that yes, it sounds like I start chemo in two weeks, and that I'd better start shopping for some store-bought hair soon, and that it's going to be about a year and a half before this all comes to a resolution.

All was confirmed by my surgeon. I'll be doing pre-chemo. I have HER-2, and there's a newish drug that seems to get great results. Tons of testing, I get a port (and they'll biopsy my lymph nodes then), and then, it begins. I'll confirm whether my drugs will definitely cause hair loss - and I realized that there's a wig shop right in the neighborhood if I need it.
So two weeks left before all the scary stuff starts.
Any advice and tips you could provide, fellow DUers, will be greatly appreciated.

but it sounds like they have a plan.

In my case, I didn't have total hair loss but it was so thin and scraggly I just shaved it anyway.

Hang on, it rarely rushes like the train you think it'll be, although I understand that's not the case for everyone. Go with the flow, try not to speculate. Don't believe anything you read on the Internet - it sensationalizes your inner fears.

Ports are good - it sucks to have IVs implanted all the time.

Keep up apprised.

Best of luck to you,

- t

Helped a lot of women. You have a lot of options, you're fortunate.

Edit: the pre-chemo is definitely not Herceptin; that's for adjuvant therapy. It's protocol in a lot of cases to do neo-adjuvant chemo; shrinks the tumor. If your tumor is HER-2 positive you will be getting Herceptin eventually. Mine wasn't HER-2 positive, but I'm told Herceptin was fairly easy to tolerate.

Wow, lots more test to get through. Today I gave samples, had a chest x-ray, and an EKG.
Friday I get a PET scan with un-fun prep (no caffeine and no nicotine - I use an e-cig). Then on Monday, another test called MUGA that has no prep. Wednesday is the port surgery. That doesn't sound awful.
Looking at wigs, and since I sew, I'm going to get some hat and scarf patterns and fabric later this week. Working on my craft really gives me something fun and creative to do. I had just bought a brand-new jazzy sewing machine, and boy, the timing on getting an exciting new toy could not have been better!

Great site no matter what kind of breast cancer you have. Saved my sanity. All the best.

It looks good. I'm trying to stick to reputable information...I really don't need to be scared beyond what the reality is.
Taking things day by day seems like the best strategy...planning for what may come but dealing with the current situation is. Right now I'm looking forward to a few days of no tests with freaky prep. Need to spend a bit of time out at the beach and look at the ocean, go for a nice walk, and smell the salt air.

Breastcancer.org is run by doctors, so you'll find reputable information there. Also, if you want to participate there are discussion forums filled with women who've been through what you're going through now.

Last edited Sun Mar 27, 2016, 10:05 AM - Edit history (1)

Had to go 24 hours without coffee or nicotine (in my e-cig).
The test itself was easy and now I have 3 1/2 days of just regular stuff. Tonight we're having dinner at Burger 21, and yes, I'm getting fries!
Next is MUGA test, no prep,on Monday. Then it starts to get "real." On Wednesday, my doctor is putting my port and doing the sentinel node surgery. Next day, I have my "Chemo Orientation." That's when I find out if I'm going be getting my dad's hairstyle, haha.

So, I've had a lot of tests to determine the extent of my cancer. Now I'm wondering if those tests even get considered into my diagnosis and prognosis. I don't have any appointment to discuss the results...I go right into port-and-sentinel-node removal on Wednesday. Chemo is supposed to start next Monday (one week from tomorrow).
I'll call the doctor tomorrow and ask about it.
On the bright side, I stopped in at the wig shop near my home and WOW! Huge selection. I'm Caucasian, with a Jew-fro, and they have a lot for my kind of hair. And they looked to have everything for chemo and breast cancer problems...caps and scarves and even bras with "stuff" in them. The woman there told me that the synthetic wigs are super-easy care and don't even have to be cleaned that often (and I most likely won't be wearing it at home). I might get a couple so that at least I can feel somewhat pretty when I look in the mirror.
Just needed to vent a little.

Otherwise, why bother doing them? I think perhaps if there was nothing unexpected they might not have called you in, but you're certainly within your rights to hear the results, even if the answer (hopefully) is "nothing special".

They're removing the port before starting chemo? Did I understand that right? That sounds counterintuititive.

Sentinel node removal AND port implantation.
And the results are not in yet! I'm supposed to pick up the disk from the PET scan and deliver it to the doctor myself.

Hey, you might see what it is like being a blond.

Despair is your enemy. If you feel down, get up and move around. Do something.

Last edited Mon Mar 28, 2016, 04:08 PM - Edit history (2)

I phoned the chemo doctor and I was right about my concerns. She said she'd call the PET facility right away and get the data transmitted...she said OF COURSE we need to take that info into consideration! I have the MUGA today, and she said that would take another 24 hours to get the info. And then that my date to start chemo was just a placeholder and that it might change.
Can't tell you how worried I've been all weekend that the process was going too fast. Must admit that I couldn't have made it through without Xanax.
I just want any decisions to be made using all the data they will have.

Edited to add: I went, in person, to the chemo doctor's office, and the woman at the desk took time to clarify for me that yes, all tests would be taken into consideration. Because what was found was so large, it most likely has determined my treatment, but I feel better now, knowing that yes, all the data will be considered.

Fun note: when I went to the lab to get the disk from my PET scan they gave me someone else's report...I didn't even notice until I got to the part where it mentioned the "surgically absent gall bladder." Luckily, we were still in the parking lot and I ran back in to get the correct report!

He put in my port and took out the sentinel node.
I said I was in pain when I woke up and the nurse gave me morphine. Wow - it's now at least seven hours later, and I'm still as high as a kite (and still feeling no pain). I have been getting on-and-off mild nausea, and I've just been nodding off. This is some major stuff!

Wow, everyone in the chemo lounge looked so much worse off than me. Some of them looked as though their health had been neglected for decades (one woman was toothless). one woman, in her 70s, with lung cancer, was starting a daily chemo regimen at the same time as radiation!
I guess I don't have it so bad. I switched to an e-cigarette over two years ago, after smoking for more than forty years, and my recent chest X-ray came back picture-perfect (my mother has emphysema, but her dad died of lung cancer at age 57).

I will be telling my daughters via video chat.

I had my Chemo orientation today and I guess it went well? Sounds pretty scary. But my doctor said all my test results looked very good, meaning I should be able to handle it. I'll be getting six rounds. Everyone says I have a great attitude - I can snark with the best of 'em - but that's easy when you're feeling fine.

It's an anti-nausea series of three pills that prevent nausea. You start on Day One of chemo for the next two days. The catch is it's very expensive. We paid over $400 for the pack (and that's after the drug plan chipped in). And none of the nearby pharmacies had it! Had to drive about 40 minutes to get any. I'll need it for every round, and I am supposed to get six.
My personal feeling is that I dread nausea more than any other side effect, and that if I have to, I'll pay it. But Jeez, what an annoyance...we are very, very lucky to be able to afford it.

Last edited Mon Apr 25, 2016, 08:59 PM - Edit history (1)

Man, it took me hours to find a wig I looked OK in. I was picking up some reading material and puzzle mags at Barnes & Noble, and I found a gorgeous cotton-knit blankie on the clearance table -- it will perfect for my chemo! And I got some supplies for scarf-and-hat-making.
I found a page somewhere on the Intertoobz today where women who had been terrified about chemo said it really wasn't that bad....I know, but it did calm my anxiety a bit.

I start tomorrow morning.

Wishing you the best.

You won't like the changes brought on by the drugs and radiation, but you might find it fascinating.
I have had a beard since Aug 1969, it will be interesting to see my face.

Maybe you will like the shape of your head, or indulge yourself with beautiful scarves, turbans, and hats. Pamper yourself.

This is your time

I still recall, when my ex-husband cut off his beard. Our daughters were little, and one of them was afraid of him LOL.

I bought a wig, and I sew..I'm making some head covers and trying to find one or two go-tos that I can use around the house. I have a brand-new sewing machine, and it's always great when I have a project to work on -- right now, this is it. I have a feeling I'm not going to love being bald, so I want to be prepared.

I feel pretty good day after! I go back today for the "immunity" shot, and I was warned I might experience some back pain after that. Heating pad recommended. I was told I can take a codone after that. Well, if you insist!
I'm also taking a very expensive anti-nausea med. I told my nurse that I dreaded that more than anything, so we jumped on the Emend. So far, so good.

Radiation does not seem to be in my plan as things look right now. I go back to my surgeon on Thursday, for the results of my sentinel node biopsy. Hoping that comes out clean (or whatever qualifies as good).
Hoping to be able to cook a nice dinner tonight -- Hubby is going to the market for me. He's also on litter-box duty for the duration...work with me here, Missy.

...and find out the results of my sentinel lymph node biopsy. I started freaking out about this two days ago, with bad dreams. I also overdid it on pain meds, so now I'm constipated, too. And I have heartburn. And a tiny scab fell off and I started thinking I would get infected.
Oy!
On the bright side: The booster shot (day after chemo that promotes white cell growth) didn't give me much of anything in the way of pain. I haven't been nauseous. I won't be able to relax until I see the doctor and find out what's up with my disease.

The lymph node was clean...no spread!
I'll get through my chemo, have surgery, do the follow-up meds...and maybe be okay.

I'm still going to have six rounds of chemo, but at least it looks as though I'm gonna be okay after that.

Not a 'member' of this group but do watch, have had cancer in my family.

BEST wishes to you!

I am sorry for a late response.

i was over the moon for a day, and then the reality of dealing with the chemo set in. I seem to be experiencing enough of the symptoms after my first round that I know this is going to be rough.

My digestion is totally messed up, and I am going from one extreme to the other. Nausea has been held at bay, thanks to the wonder drugs, but I'm having heartburn, even from ginger ale. I had to take a step back to eating a plain baked potato last night. All my own fault - I had a few sips of coffee yesterday. OK, I learned from that.
Let me ask a question: my daughter says she wants to come visit and be with me for my next chemo. This is a 1,000 mile trip. I said it would be really sweet and loving of her, but then I realized it would be a big fat pain in the butt to have her staying here. First, housekeeping standards have fallen a bit. Second, and most embarrassing, my husband and I have two bathrooms, and I would hate to give up my private bathroom, especially now when I'm running to it constantly.
Am I a terrible person if I ask my daughter not to come?

We talked, and I suggested we take time so that I can see how my chemo cycles will go. It makes more sense for her to visit when I'm feeling better. She's starting to interview for a new job, AND she's going to be maid of honor in a wedding in May, so she's got plenty to keep her busy. Plus a very nice boyfriend who sounds wonderful.
She just said she wished there was stuff she could do to help, and that made me feel very good.
I'm still waiting to hear from my other, wild child...as soon as she heard my news, she started talking about alternative treatments and didn't want to hear what I was doing. We haven't spoken since. She left her (terrible) boyfriend this week and I know she's rebooting a lot of stuff, so I'll let her slide.

I don't want to go into the bloody details, but I just talked to my nurse and they sent thru a prescription for Protonix. I think it shuts down acid production. Can't wait til Hubby gets back from Walgreens!

I hazz it. So many things taste so awful! And I get it.
But...toast crust? I have been eating toast because my digestion has been so bad. It feels like shards of burnt rock in my mouth Going to try UNtoasted bread today.

My arm started swelling up, and since I had a cooking burn on that hand, my husband thought I must have an infection. Went to the dr, and they decided I needed a test (Doppler).

Well, I've got a clot, right near my port! And I did see that it seems to happen to quite a few people. I have do do an injection of Lovenox daily, and hopefully it will go away.
I lost it at the office; I was so happy to get hugs from not one, but two nurses.

Every time I think I'm getting a handle on my side effects, another one magically appears.

I got to shoot up Lovenox back in 1998, before it was approved for treatment of DVT, through some fancy footwork by my doctors who managed to convince the insurance companies that it would be cheaper to pay for Lovenox than 30 days of hospitalization (what it took in 1988, the first time I had DVT). And again in 2008. (Think there's a pattern there? Two years until my next DVT Woot!)

Scrolling through your thread because I'm almost certainly about to join you. Core biopsy 2 days ago, with everyone very carefully not telling me they are sure it is cancer until the results come in (early next week). But they don't have terribly good poker faces. (not to mention that I will be the 4th generation (that we know of) - so it was just a matter of time. All post-menopausal. All relatively slow growing.

In the throes of Chemo Mouth

I gazed longingly at the pint of Jamocha Almond Fudge in my freezer last night. Dinner had been"eh." I'd gone out of my way to cook some new dishes with different herbs (trick the taste buds). OK but not great.
I cautiously dipped a spoon into the ice cream and tasted.
YUMMMMMM! This was the first thing I've tried in about a week that tasted the way it was supposed to. And the rich creamy texture sure didn't hurt.

Last edited Tue Apr 19, 2016, 02:54 PM - Edit history (2)

Exactly two weeks after my first chemo. I have very curly hair that I have to dampen and restyle every day (tangles like crazy) and I always have a tiny bit of hair that comes loose, but today, it was a lot more than usual. I got it cut short last week so it wouldn't seem as freaky...and I'm prepared, with a wig and four or five hats of various kinds, but I know it's going to just feel scary when it's gone.

PLEASE no more fun side effects?

...but I find myself resisting.
The woman who sold me my wig told me to come back when the time came, and that she would shave my head and also help with fitting and trimming the wig, and I'm just about ready to do it. Every time I go to style it tons just falls out, yet I have this strong feeling about not doing it. Scary.

related breast cancer, so I know how you feel. I was a little luckier in that I had only 16 days of radiation and no chemo.

However, no matter what kind of cancer anyone has, I strongly recommend that you, or someone, keep either a PAPER LOG or an EXCEL SPREADSHEET of every visit to any specialist or treatment, complete with notes on what was said and done that day. It will be invaluable. You will never be able to remember when who did what, when you had your last MRI or bone density test, etc., unless you write it all down. Write down what your doc said that day, what test you had, what results were, etc. You would be unhappily surprised to see how little coordination there is between doctors, hospitals, testing centers, labs, etc.

It's been 5 years on for me, and I still keep the spreadsheet so I know what to do next.

I am basically doing it all at one place and all the doctors (really just two) work together. I have all my records and papers together. The biggest conflict so far has been that one nurse told my husband to give me my shot at a 45 degree angle and the second said it should be 90 degrees. 90 was the right way; he gave me the first at 45 and I'm stlll all black and blue a week later LOL.
Enjoying my last hairy evening. Actually dreading when the eyebrows, which have been thin for a long time, go.

In other news, I got to Tier 2 on my Medicare drug plan. That means the Emend, three days of anti-nausea pills, goes from $375 to ONLY $200! Yahoodles!

I now have a 1/16th" crew cut and it feels like I have Velcro on my head.
The wig looks great, but at home I have just been wearing a scarf or rocking the bare-headed look.
In other news, i finally found the right balance of digestive-system drugs and am experiencing normal digestion for the first time since my chemo (or perhaps it was the apple I ate)...just in time for the next round on Monday!

Now that I have an idea of how it affects me, I'm hoping this round will go more smoothly. I do understand that it can be cumulative, but I'm still hopeful. I've got lots of stuff to bring: food, drinks, puzzle book, Sarah Vowell's latest, and "I Am Spock" by the late great Leonard Nimoy. And I have a different anti-nausea to try -- the nurse gave me a sample of Varubi, which is supposed to last for up to FIVE days (but seems to be much more expensive than Emend).
We're trying to decide what movie to watch tonight -- "Big Eyes" or the Cooper-Vanderbilt thing...they give me Prednisone and it can be hard to sleep.

Last edited Wed Apr 27, 2016, 02:45 PM - Edit history (1)

They scheduled me for 11, and the chemo actually didn't start until 1...this was a big mistake, as my treatment was lengthy and people had to stay late to finish my treatment up. We got 9:00 scheduled me for the next time.
All went well and I had some interesting lounge-mates to talk with.
I am using Varubi, a very new anti-nausea med that they gave me a free sample of (my Emend costs me $206, so that saved us a lot), and I did wake up at 3 AM with nausea...got up, peed, and it just went away!
So far so good. I go back today for my Neulasta shot. Asked for a scrip for 'codones and got it - that is for the pains after the Neulasta and I'm sticking to that story.
Now I am 1/3 done with chemo.

It's normal for me to feel tired, right? Especially the first week of my chemo cycle?

It took me time to accept that I really am this tired. Today is the third day and I might be feeling a tiny bit better, but I'm not going to blow it. I've been napping and sleeping long nights, getting up only to answer nature's call.
Hoping that I'll snap out of it a little bit...and somewhat concerned: if I feel this way after my second, I can't even imagine the ones to come.

I have Medicare part D with Humana-Walmart, chosen well before cancer treatment was even on the horizon.
After they found a blood clot near my port, my doctor prescribed a blood thinner, injected daily. Apparently the drug he chose, Lovenox, isn't usually given long-term. When the Hubber went in for a refill, he was told that the insurance will only pay for it three weeks out of every four?!?)
Luckily I still have five days worth and I'm already supposed to visit my doctor on Monday, so we'll be able to work this out. Either he orders a different drug, gets the Lovenox approved somehow, or perhaps I go off it for a week.

I've been feeling ""all gone" since last Wednesday...just tired. And diarrhea that doesn't stop. Taking Imodium AD. I'm pretty sure small amounts of coffee aren't helping, but I NEED that stuff. I'm hoping my oncologist will be able to help me figure out what to do. I'm supposed to get IV fluids today.
Just before my second chemo, he gave me a big smile and told me to just live my life! Go places!
Right, if the places are bathrooms or beds. party on!

It was a horrible combination of nausea and other stomach pain. It wasn't normal nausea...it was strange. I had a brand-new bottle of Lomotil and I decided this was the time. An hour later I took an anti-nausea pill, and slowly the pain went away.
Later I had a small hamburger for dinner, and nothing bad happened.
Hoping I don't get a recurrence. Remind me never to get annoyed at feeling tired again!
Oh, did I mention? We were going to take my car, of late, unused, to the drugstore last night. Dead. Worked out, however. Our insurance towed it to the dealer for free, and we got a new battery and battery cable (and diagnostic test). Since I do all recommended maintenance, we even got a discount.

Is my entire time of chemotherapy just going to be one long bout of diarrhea?

Yesterday around mid-day, I realized I was feeling better...normal! It was such a strange feeling that it took me a while to process.
I just revelled in it for the rest of the day...and then I slept until 9:30!
Visited my surgeon yesterday. He told me two things that made me very happy: 1) Side effects after future chemos should basically be similar to what happened after #2 (meaning no new weird surprises), and 2) my treatment after surgery would be once-a-month infusions of herceptin, rather than once-a-week, which is what I thought it would be.
I even had some lasagne for dinner, it tasted not-bad, and my digestive system dealt with it just fine!

...except for the diarrhea, which I guess will stay with me for the entire chemo adventure.
Otherwise I feel very good, just a little tired at times. I have been sleeping late and waking up feeling utterly refreshed! Food tastes a little better, and we are even going out for dinner tonight to Pizza Gallery, a place we both love (and it's near the drugstore where I'll be picking up a refill). I'll be careful to avoid any raw vegetables and we'll go home immediately, just in case.

Since my surgeon told me that the way I feel after chemo 2 should be the same after the rest of my treatments I should be able to count on the second half of each cycle being tolerable, and of course, I know it may take me longer to recover each time, but I'll take it!

This coming Monday.
I went in yesterday for my blood work...Smart! That will save time and my doctor will have the results BEFORE I start treatment, which is great.
I'll be prepping for the next few days...making chicken soup, getting plenty of the easy-to-eat stuff (shakes, applesauce, white bread, coffee ice cream lol) and my ritual is fresh bedding and towels night before. I have plenty of all my side-effect meds, too.
I was uncomfortable for just under a week last cycle, and I realize the fatigue might last longer this time, but I feel fairly sure that I'll have a better time for the second half of the three-week period.

Wow, everyone in the chemo lounge looked so much worse off than me. Some of them looked as though their health had been neglected for decades (one woman was toothless). one woman, in her 70s, with lung cancer, was starting a daily chemo regimen at the same time as radiation!
I guess I don't have it so bad. I switched to an e-cigarette over two years ago, after smoking for more than forty years, and my recent chest X-ray came back picture-perfect (my mother has emphysema, but her dad died of lung cancer at age 57).
My bad stretch will probably start tomorrow. I'll be tired and still running to the bathroom every twenty minutes. Think I'll try the prescription med, Lomotil, and see if that's better than Imodium.

I get out of bed, go to the bathroom, brush my teeth, maybe have a small bite, check the news...and go back to bed.
I'm supposed to go in for fluids tomorrow, but I can barely imagine the effort that's going to take!
I'm assuming I'll get past this by the middle of next week and be closer to my usual energy level for the rest of this cycle.

It's a new anti-nausea medication that is supposed to be a competitor to Emend. My chemo nurse has been giving it to me. We grabbed it because Emend is $$$. I used the Emend first chemo, and Varubi for 2 and 3, and I have one more freebie.
So, it can last in your system for more than a week, and I'm concerned that it might be causing some of my symptoms that I assumed at first were just from chemo. I have one 3-day dose of Emend that I'm going to use next time, and see how I feel after that. After the three days, I can take the Zofran if needed. I hate to spend close to $200 if I have something else that was free, but this way, I can see if there really is a difference.

Starting yesterday, and with the help of a little pill called Lomotil, I started to spring back to Life again. I'll feel pretty good 'til next cycle and the first two days of that one.
This means I have just one week of bad side effects each time, and fourteen days of relative comfort. Even my taste buds will snap back enough to allow me to pretend I'm 'normal'.

I probably won't start feeling crappy until tomorrow. However, I think I have a better handle on my meds, and I think I can get most of the digestive issues under control. My doctor said that if the Lomotil works much better than Imodium, that I'm okay taking it more often, so yay. For the fatigue, I'll just rest...and for when I feel better, I set up some simple hobby projects (sewing) that I can just sit at my machine and work on for ten minutes at a time.
Plenty of home-made chicken soup in my freezer -- that was the best during my last cycle and I also found a local Chinese restaurant that makes a great, rich-tasting won ton soup. I'm going to have some tonight, in fact.
After this, two more to go and then my surgery.

I'm a week into my 4th chemo cycle, and doing pretty well! As usual, my two issues are fatigue and my digestive system. The only thing my stomach seems to like is my homemade soup. It goes down so easily and I feel almost energized after a bowl. Unfortunately, I've only got one more day's worth...I guess I'll be brewing up more tomorrow.
I wish I could bring enough for everybody to my chemo sessions...and for everyone here, of course.

The taste buds are somewhat better, and the digestion, too. I made swordfish with garlic, lemon, and olive oil last night. Tonight I'm doing Italian, with spicy chicken sausage...and I picked up cheesecake at Publix.

Party!!!!

Next week, of course, I'll be back to piteously sipping chicken broth.
But only two treatments remain...and then I can start getting back to feeling like a human.

It must be the Lomotil. My digestive system usually goes into extreme turmoil by day 3. Now I'm taking 1 Lomotil a day and it makes that part manageable. I can even have a half-cup of coffee here and there.
The Varubi wore off last night and I did experience some nausea. I took a Zofran, and that helped a lot.
My doctor told me this cycle might be the worst. Hoping to get a bit more nutrition in today; maybe that'll help with the weak feeling in my legs.
One more to get through!
I made a pair of crazy shorts (psychedelic print in lurid colors) to wear when I get home from my final treatment.

Just over a week in and I feel like crap.
New things and none of them good. I got the sore throat (I will call to get a scrip for the "magic" or "miracle" mouthwash today). My nails hurt, and it makes it difficult to open things or just use them at all.
And my taste buds are worse than ever. Even my homemade chicken soup is awful.

Hard to imagine what the sixth chemo will be like. Kill me now.

100.7. That means I'm supposed to go to the ER.
While just getting started there, my oncologist finally called back. He told me NOT to check in and prescribed a Z-pack for the infection I seem to have. We're waiting for that to show up at Wal-greens right now.
I had a feeling it was more than just a chemo sore throat...I've been sleeping all day.
Best news with this is that if I do have an infection, that's why I feel this bad, and NOT the chemo...since I have to have one more treatment, that's good.
I go to the doctor tomorrow anyway for fluids, and hopefully they'll confirm that this was the right thing to do.

Well, not only did I have an infection, my hemoglobin was so low that I went to the hospital for a blood transfusion. It took a day or two, but I started to bounce back. Had a few good days, and then the final chemo.
It's now six days in, and I'm doing fairly well! I feel like getting the transfusion sort of set me back to zero. I'm also doing well on finally figuring out meds and supplements that are making it easier to manage. Benefiber, probiotic, multivitamins, yogurt.
Biggest complaint is the taste thing; it seems worse than ever....but I'm almost done with this part of my treatment. Can't wait to get past it!

Thank you for all of these updates. It sounds like it wasn't easy but then it usually isn't. Don't be surprised if the chemo effects linger either. It takes time for them to go away.

At this point, I am trying very hard to just "relax" and let all the side effects take their course. It's not easy, and yes, I realize, some may take quite a while to leave completely. I do know that at the end of each three-week cycle, I've felt much better...I'm just looking forward to that right now.

Feeling so good, I cut back on my (Pantoprazalone) anti-diarrhea and (Protonix) proton-pump inhibitor meds. That was really a bad idea. Not surprising that I ended up in the bathroom a lot. Then the bad, chemo-taste in my mouth started to get worse and worse. Took me a while to realize it was acid indigestion/reflux.
I'm back on my meds, and expecting the taste buds to begin their journey back from the bottom of a smelting pot soon, maybe tomorrow.

I got some advice to try apple cider vinegar, the good kind, and fresh ginger in a cup of tea. And later tonight, I'm feeling pretty good. I think the worst of my last chemo may be behind me! Tomorrow I'm going to have my first real dinner in about two weeks: roast chicken and vegetables. Sure hope it tastes okay and goes down easily.
Can't wait until food starts to taste the way it should. I want to tell you, I have a major list of things I've missed.

Here's to a sumptuous end-of-chemo feast!

Tonight I'm going to use some of my leftover chicken and try Fettucini Alfredo, with broccoli, yet! I am going the lazy but expensive route -- I bought a jar of Mario Batali's Alfredo Sauce. Ooooh I can't wait.
My goal for the end of the week is PIZZA. With sausage and mushrooms.

Tomorrow would've been my chemo date -- but I'm done!
I'm finding my recovery from all the effects to be very, very slow. My energy level is good, but that's about it. I'm still taking meds for digestion, and food tastes just barely better. Frustrating! Also, all my fingernails are loose. I realize I may lose one or more, and the idea just creeps me out.
Trying to keep busy. I have a whole week before I start seeing doctors to discuss the next step, surgery. I had a plan to drive to a larger town to do some fun shopping and go out to Toojays, the closest thing around here to a Jewish deli, but it seems pointless unless I can enjoy the food. Might postpone the trip for another week.

The recovery is very slow but it happens. My worst symptom was the fatigue - it's great that you're ready to go out, and hopefully food will regain its power soon.

I have an alcoholic drink about once every three years, but I wanted to celebrate moving on after chemo. I made the drinks in my blender, with frozen pineapple. Hubby LOVED his! Later, I got a lil' sleepy, and about half an hour after that, I was awakened by extreme digestive distress...one of those times where you don't know how it's going to end LOL.
About an hour later, I was feeling good again. I most likely will be finding other ways to celebrate from now on!

I think I get my port flushed and of course, they'll take blood to test.
My taste buds have improved just enough that tonight I'm making an icebox cake with tirami su filling! (And chicken pot pie for dinner)

I thought they might want to start my year of just Herceptin today, but my oncologist said he would wait until after surgery. My blood numbers were low, but improving. That motivated me to go out and buy some red meat. I'm going to "pot roast" some this week -- I think what I'll be making is known as Swiss steak (or Stroganoff if I add some sour cream). Yum. But tomorrow is going to be PIZZA. My precious! Getting the taste buds back slowly but surely.

it is all a balancing act. Some good things and some to 'worry about.' Such is our life and I am just a caregiver!

I feel the docs lose sense of the trend sometimes, numbers indicate when they are out of range, but can you please look at trends! I do try and impart my knowledge to our daughter a fairly new internist, then I remember the volumes of binders under her bed with materials that I could never imagine committing to memory, there is so much we can all learn, some from textbooks and some from instinct.

We're all a part in this quest to live a longer.

Stroganoff or pizza, I am there! Hope all is going well, but if not, tomorrow is another day and maybe dial back on some foods, this is truly a marathon and not a sprint.

Win the race!!!

A month after my final chemo, I am experiencing shortness of breath. It had been for a few minutes, just at bedtime, then yesterday, I had it for most of the evening. Finally confessed to my husband. He helped me to slow my breathing down, and I was able to relax and fall asleep. Called my doctor this morning, tried a Claritin...we'll see. It may be related to the infection I had two months ago, that seemed to be focused in my throat. Of course, I also have a 40-year history of smoking ( stopped two yeatrs ago).

Last edited Sat Aug 20, 2016, 09:48 PM - Edit history (2)

It hasn't come back at all.

Well, it has come back, several times. Last night was a bit frightening. I felt much better when I got up today, but had just about decided to go to either an urgent care facility or the ER. We ended up at the urgent care, after I confirmed that they accept Medicare.
Great service. My nurse-practitioner was a courtly Brazilian! He felt I still had a touch of bronchitis after last month's issue. Prescribed another Z-pack and I asked for something to help with symptoms, so I got an inhaler.
Yay! Not being able to catch your breath is scary.

Now back to sewing my drain belts! I got some purple polka-dotty flannel.

This time I bought a cute little boobie pad! It's for me to use the first times I go out so I don't feel self-conscious. Funny, it looks like a shoulder pad (which I still have a collection of from the '90s).
I will most likely get a better one later on, as it sounds as though I will be waiting a long time for my reconstruction, but this looks comfy and easy to wear. Funnest part: it's a small! I used to be a 40D before I had my reduction.
Taste buds recovering! I'm really beginning to enjoy more food...I made chocolate mousse yesterday (yum!) We're going to go out Wednesday for a little mall action and a meal. Maybe Pizza Gallery, our favorite place.
Then Thursday I'll prep and pack for my surgery Friday.

enjoy the food and time before surgery, and of course best of luck on Friday and wishes for a speedy recovery!

I made this today:

I used white beans instead of Kidney beans. I ate a bowl, and went back for more. The Okra becomes much less slimy when cooked in a soup. What little slipperiness that remains helps with swallowing.
http://capitalregionesny.org/recipes/southern-okra-bean-stew

Usually I could eat a little bit, and then would start becoming queasy. It did't happen this time. I'm either getting better, or this stew is awesome. 270 calories per serving.


I used regular brown rice and cooked them for twenty minutes before adding other ingredients. Maybe a little barley would be fun.

Tip for brown rice. Add walnuts or chestnuts while cooking. They will be nice and soft by the time the rice is finished. Pecans would be unbelievably sinful.

You've come so far.
Keep up the good work!

What can't you taste, and what can you?

It appears that someone has come in and done something naughty to all our threads. Well, may you enjoy just one week of intensive cancer treatment on me!

It's still incredible to look at treatment as a whole, and just see what we made it through.
Recovery is a much bigger part of the story than I could have imagined. I still have no idea what my "new normal" will be...just this week, a toenail split. And that's not even surprising at this point.
Even though my oncologist played it down, the full year of Herceptin does seem to have impacted me -- a lot.
And I still have reconstruction surgery ahead.

Sir, you have, as they say, nailed it!

I have a daughter coming for a three-week visit. My eldest -- a world traveler with no permanent address. I'm looking forward to having a little bit of energy around here for a change! We'll be cooking and shopping and finding great stuff to watch on the TV together (I actually have some great movies I bought for oxygen that I decided to save for later), and just catching up.
Now to get this house looking respectable -- I'm just about the world's worst for cleanliness.

My main concern is cleaning that guest bath to an immaculate state. I got into the habit of using it as my own...just seemed easier to me, when Hubby and I first married, than to mess up his tidy bathroom with all of my womanly makeup, potions, and hair appliances. I'll move to the master bath for her trip...I even bought a little wheeled cart to hold my goodies. After the visit it will probably find a new home in my sewing room.
I tried something new tonight: smashed potatoes. You boil small red-skins, then squash them flat with a potato masher or other implement, oil them and season generously, then bake at a high temp for about 20 minutes. Crispy, creamy, and YUMMY.

I like the taste, but they just don't sit right with me. Brown rice seems to be a good alternative. I'm going to give rutabaga a try to see how I respond to it. Parsnips should work too. They are so sweet when roasted.

Next time I make brown rice I will add some walnuts.

I'm going to do something similar with russet potatoes, and roast them along with other veggies.

We went to the airport to pick up my daughter. I walked further today, without pain, that I have, I think, in a year! This gives me great hope that I'll be getting better.
We also determined that Terminal A and Terminal B are just two sides of one building! (This is Orlando International Airport)

I think I might now be one of those people who can tell when it's going to rain. Maybe I can get a job as a meteorologist?

Of course there is such a think as too much of a good thing.

My degenerative disc disease is kicking my ass and has kept me off the streets. My right leg burns is weak, and numb. I'm taking enough Zoloft to keep me happy. 🤤

I have PT next month.

I thought that once I got off that high blood pressure medication it would be smooth sailing. But I'm still having mood swings, meaning I get anxious, or sad. Yesterday, while we were in a very crowded shop (Trader Joe's yay), I got terribly anxious. It went away when I got out of there, but it wasn't a great feeling.
On the other hand, my other big issue, my hip, has eased up a LOT. It only bothers me once in a while. My chiropractor is working wonders for me! I think I'm going to be one of those people who knows when it's going to rain...but I expect further improvement, and I now feel that I'll be able to do my NYC trip next month just fine.

A gynecologist. I haven't been to one in five years. When i started with my current PCP, he told me that I didn't need to at my age, and i stupidly listened to him. Can't wait to tell this doctor about all my adventures over the last year.

So annoying!
I can't live on Xanax...I made an appointment with my PCP for next Tuesday, and I'm going to call my oncologist for advice tomorrow morning. i feel jumpy and sad. I'm trying to use breathing and exercise to help.

I'm worried about depression....and I'm thinking I might need to postpone the trip to NY I was planning for a few weeks from now.

I've had a worsening of the hip pain. All I've done so far is visit my chiropractor, and it did seem to be helping until the last week. I had just started Wellbutrin, and I guess there's a slim chance that there was a connection. I've stopped the Wellbutrin, with my doctor's approval, because it was giving me MORE anxiety and a bit of manic behavior.

Just yesterday it got to the point of very bad pain. I'm using aspirin, ice, Epsom salts bath, and since I won't be able to get any medical help until at least Monday, thinking of buying a cane just to help me get around. (I also have pain pills, but I REALLY don't want to rely on them too much.)My daughter, an acrobat/yogini/dancer, is here and being super-helpful (she suggested the Epsom salts). And helping with everything -- what a great young woman I raised.

I have Xanax and lorazepam to help with anxiety if I need...daughter is also helping me with breathing.

I'll see my chiropractor on Monday and will ask for a referral to a rheumatologist or orthopedist...and I'm supposed to see my PCP on Tuesday about the anxiety, so of course I will ask about the hip pain, too (I've not even gone there with him yet, since I thought I was getting it under control).
Boo.

Last edited Mon Sep 18, 2017, 03:19 PM - Edit history (1)

I was examined by the chiro (and adjusted). The two doctors there will evaluate and make recommendations on Wednesday. meanwhile, I see my PCP tomorrow, and they told me to go ahead and ask him for help on the topic.
Feeling a bit anxious, and getting by with my Lorazepam and Xanax (not at the same time of course) today.

I just found out that I might qualify for medical marijuana. Pretty new in Florida, but I looked at the list of authorized prescribers and one shares an office with my pulmonologist! Since i no longer have cancer, it would have to be for chronic pain. Have to think about this.

For my hip: Epsom salts baths every other day. Chiro twice a week. A daily anti-inflammatory supplement (which I got from the chiro). My stretching exercises. I can't lift anything too heavy, but I have much less pain these days.

For my anxiety and depression: I'm taking Zoloft, half the originally prescribed dose, a Xanax or Lorazepam if needed. Half an hour of sunlight first thing in the morning. I find that keeping busy is the most important thing I can do to keep my mood positive, and as my hip improves, I'll be able to get out and about more.

My hair and nails are still terrible, and chocolate and a few other things still don't taste quite right. I finished my year of Herceptin in April, and I guess I'm just bouncing back more slowly than most.

Today was the first sunny day in nearly a week, and I went shopping. Over the bridge to Merritt Island, a trip I haven't taken alone in almost two years. I went to a fabric store, Michael's Crafts, and even stopped in the mall for a bit. After that I ran into Aldi for a few things, and by the time I got home, my hip was a bit sore. That's okay; tonight I'll do an Epsom salts bath.
It felt great to get out (and not have to worry about my husband being bored while I looked at stuff lol).

Wow. My stylist confessed to me that she'd had chemo over twenty years ago, and that her hair has stayed thin ever since then. It's very curly and that does make it easier to camouflage. She evened out my pitiful locks and wants to give me a body wave in a few months, when there is more length to work with. I got a really nice-looking style and I feel pretty happy about it!

My new gyno found a tiny lump in my "good" breast, and after the mammo and sono, it appears to be a cyst. She ordered a repeat of the tests in six months, BUT when I saw my surgeon for a follow-up visit, decided I needed to have it biopsied right away. He's pretty sure it's nothing, but as he said, with my history, why wait.

The little tiny lump-erloper is so close to the surface that they'll have to do the biopsy differently. My surgeon will have to do it under general...the normal method of vacuuming would pull some skin with it, and I would've ended up with a scar. So that will be rescheduled.

Friday, November 10. It's being treated like a full operation, with all the pre-op tests, etc. My surgeon will remove the little interloper and have it biopsied. Hopefully it will be nothing and my boobie won't look too weird afterward. Good thing my Zoloft is working pretty well!

There seems to be more every time!
I had a long interview with a nurse about my surgical history, and then I had blood drawn, urine sample, Chest X-ray and EKG. The nurse gave me a bottle of the special antibacterial wash, and instructions about prepping. A lot of ado about a tiny little lump.

It was treated like surgery, full anesthesia, etc. But it was very small, as I said, and I was home fairly quickly. I napped, and I'm up now (in the afternoon). Drinking water and icing the area. There's no pain to speak of, but I'm guessing that might still happen when the surgery meds wear off. Going to take it easy on food today, and just take it easy in general.
My surgeon told my husband that what he removed just looked like a little blob of fat -- I get the biopsy results on the 21st.

The little blob was fat, left over from my breast reduction several years ago.
Yay!

I have loved chocolate since childhood, but I lost my taste for it during chemo...and even afterward. Well, I made up a batch of my chocolate mousse recipe yesterday, just to see...

...YUM. Amazing and wonderful. My sister got this recipe from the food editor of a women's magazine about twenty years ago, and it's been our family indulgence ever since. SO happy I can enjoy my favorite treat again!

I've had so many issues, from COPD to bursitis to high blood pressure to depression & anxiety to my very first tension headache, but I think I've finally gotten past most of it. Maybe I can just relax for a bit and try to enjoy and appreciate life for a bit.