Lumpectomy Lounge....let's talk!

MLP: I liked your vegan page on FB!

LTF: I sent my request to join the trying vegan FB group.

I need to get serious about going gluten free and vegan. Only being a vegetarian is not going to cut it. I just wish I could stop being so freaking nauseous all the time. I don't know if it is stress or one of the meds. Speaking of stress..........

Anyone meditate? If so, where and when? I have a sitting area in my bedroom that currently has a couch, sofa, and large coffee table (this area is NOT used at all). I could hang some curtains to block that space off completely and create a meditation area and take those unused items out. Looking for some guidance if anyone else practices. I am one of those go-go-go get as much as you can done in the day, brain never turns off people. I want to calm that side of me and distress everyday.

If you do not meditate, what do you do to distress? I'm open to ideas - BC has been my wake up call to start living life stress free and in the moment.

I didn't have that hard of a time on chemo...but I did think it was harder than rads, even though I got rather bad skin burns and peeling during rads (wish I had really paid attention to the 'no skin on skin' advice!). The folks in the rads waiting room didn't seem that sick to me (though they were annoying, LOL...)...but chemo: not only did I feel sick, and very anxious, but I lost all my hair!!! So I looked and look sick to the outside world...plus nothing tasted good and most foods tasted downright bad (and normally, I love to eat..) So, did I at least lose weight? Hell no, I ate lots of the only things that tasted good: mashed potatoes, gravy and ice cream...mmm....

Chemo was doable for me, just not fun. Everyone is different though, and I am sorry it has been so hard for you Jan. Rads was mostly just annoying.

Oh! Forgot to mention: when I found out I'd be having rads at a location a 40 minute drive down the freeway from my home, I went out and bought the new car I'd been wanting...that made rads a *lot* less annoying...

Yup peachy rads is like Groundhog Day! It sucks.

But also not to sugarcoat it, chemo was shitty. I had dose dense AC-T every other week which was awful. Oh yeah and that crappy nasty Neulesta.

My top 5 suck list from chemo:

#1 extreme fatigue. This is not just being tired, it's soul sucking exhaustion.

#2 intestinal issues. Gut wrenching, no need to say more.

#3 bone pain. Did I mention neulesta?

#4 neuropathy.

#5 fatigue again! No seriously it is chemo brain. The mental fog was frustrating. I swear I don't know what I did for 4 months during chemo. It's all a blur and that ok because maybe it's my body's way of recovering my sense of self. For all that I will say it's doeable and the chemo boards were a lifesaver. Never could have gotten thru without them. That and the lumpy board here. Can't praise enough.

I'm hitting a big ? stage in the process. Post surgery my BC informed us that cancer was found in lymph node(s). I put it that way because, apparently everyone heard something different as to number of nodes removed and how many had cancer (that's a prime example of what shock can do), but even I remember her saying that chemo would likely be needed. I saw her again yesterday, had the drain removed (jumps for joy- mentally anyway) and we went over results. Reality is 5 nodes removed, cancer was found in one. Chemo was discussed again, but she seemed less sure of the likelihood. I'm set to see the MO on Wednesday, to find out what he recommends. I feel less comfortable with communicating with him, and, although I don't want to do chemo (does anybody truly want to do chemo?) I feel like it's the right choice. Now, oddly, I'm worried he'll say I don't need it. It's all so silly and confusing get nod frustrating.

Also, is there anyone else here who suffers migraines?

1step, ask your MO to explain the factors in his decision as to whether or not to do chemo. ER/PR+ tumors, especially grade 2, might be too slow-growing to be vulnerable to chemo--but depending on size, LVI and the extent of involvement in that lymph node chemo might be effective. Age is also a factor--the younger you are, the likelier it is to be recommended. I second Molly’s advice to request OncotypeDX, now that they’re doing it on tumors other than just stage IA and node-negative.

Suzanne, yay on making it halfway through chemo with lessening SEs! Jan, hoping Monday will be much easier. MLP3, amazing photos! Wish I had the motivation to walk more (other than trips up & down my stairs and strolling the supermarket).

Rads were nowhere near as bad as I'd expected. I had almost no skin problems other than a little pinkness that has turned tan over the seroma and faded away everywhere else. Only troublesome SE has been fibrosis over the radiated area, since even though I had fewer treatments they were higher-intensity. Coupled with the 4 nodes having been removed, we're treating it as though it's LE--and unfortunately I seem to be developing subclinical-to-mild LE in that arm despite precautions. I am getting a lot of forearm tightness today--and all I did was carry a couple of guitars in hardshell cases (<10 lbs.). Had to do MLD twice today. I feel very painful spots under the skin when I do the MLD stroking--and my PT noticed three more bruises that were probably from knots in the lymphatic ducts breaking up. I have one more therapy session Tuesday, and as of two days ago my PT was going to release me, but I suspect she's going to try to get my MO (whom I see for a followup Thurs.) to authorize more sessions. (Medicare has a limit, so I may have to go out of pocket). Those extra sleeves cannot arrive quickly enough!!!

Speaking of those guitars in cases (Taylors), I had to take them to the shop today. Last I played them (and my Martin M-36) in Oct., they were fine; I recharged their in-case humidifiers, put them back into the heavy-duty padded gig bags in which I'd been keeping them for ease of transport, and didn't think twice until my hygrometer indicated the IRH had dipped to 30%. So I filled and turned on the console room humidifier. Last Tues. night I checked the Martin, which I'd last played in Nov. --and to my horror saw that the top crack I'd had stabilized 20 yrs ago was opening up again. I then noticed the humidifier had stopped running. No matter what I did (new wick, refilling, plugging/unplugging, taking it apart and checking it), the fan would not run--the fill light kept flashing. Luckily my little handmade Gramann was still OK, so that's what I took to Madison & played Wed. night. But I checked those two Taylors--and they had developed back cracks! So I doubled up on in-case humidifiers (plus damp sponges in baggies with a few holes) and the cracks had reduced enough by today that I didn't feel too mortified to take them in to the shop and get the humidity lecture. Told the tech I was off to buy a new humidifier--but he told me he has the same problem with his console humidifier too; it takes almost half an hour after filling to finally put it back together perfectly so it will run. But I guess lifting & carrying those cases to check on the guitars, take them downstairs & put them into the car (using L hand only) and then remove them and carry them into the shop may have aggravated my LE.

Last night's Italian wine & cheese tasting at Eataly was fun. But when we went to the movie theater afterward, instead of popcorn we ordered vegan lettuce wraps & Brussels sprouts to snack on. (It's one of those theaters with waiters and reserved reclining seats). Woke up at 10 this morning--and for the first time I can recall, the thought of eating raw fish and drinking champagne at noon made me want to hurl. So I called Cafe Spiaggia and cancelled. At least they'll give me a refund. Had boiled eggs instead.

To de-stress, I either go online, do crosswords, play solitaire, write or revise songs, watch stuff I'd DVRed or......cook & eat. (Trying to resist napping because I'd like to get 8 hrs. at night). Maybe I should give meditation a try. Not flexy enough for yoga...yet.

Hey, Sloan, substitute “furniture” for “guitars” and it’s still about finely crafted wooden objects needing ideal humidity to survive intact and serve their intended purpose to the fullest. You got it right on the first try. I only mentioned the brands because they’re each unique (at one point I even nicknamed each of my guitars as if they were pets) and each of them does something differently--tone, volume, playability--and that they are valuable instruments that need love and care. It’s never the bargain-basement cheapies that suffer from extremes of climate. I apologize for being so detailed--I tend to become really geeky when it comes to hobbies and collections about which I’m passionate, whether it’s instruments, wines, fountain pens, coffee, cooking and utensils, etc.

1Step, definitely request an Oncotype test. It will provide another piece in the puzzle and, hopefully, make it easier to determine if chemo is necessary. Damn that it might be. That's hard to take. My DIL says it's doable and she told each and everyone of those chemicals to KILL CANCER. And they did (colon cancer). Keep us posted and we'll be with you Wednesday.

HUGS!

1step I used to be very migraine pain. Over the years it's gotten better, I think dietary changes have helped.

LTF, while I had the test and came back high risk, I think if I had had a spot in the nodes I would have wanted chemo regardless...while it was no picnic, I don't have any regrets about the chemo itself...for 1step, I third or fourth the recommendation for the test, and possibly even changing MOs if you aren't comfortable with yours...you will be seeing him or her for a long while!

Sloan, yay for running! I really need to join your fitbit group. On my long list of things to do....and I played clarinet in junior high also, and some in high school, fairly well, but I still know little about music compared to others,even including hubby who was a music major in college and had thought about going into music education but ended up as a software engineer, but somehow managed to keep up his study of the topic. But we need to get together and talk science sometime soon. Sports not so much, unless by sports you mean baseball.. :-) And Sandy: I can get geeky about coffee too!

I am having very very strange and unsettling dreams. I think it might be the Arimidex. At least I am sleeping!

Hugs to all;

Octogirl

LTFly- do you remember specific things that you read regarding not needing chemo when there's LN involvement, or just general? I pretty much thought chemo would be a no-brainer with a positive LN too, but the what-ifs have started setting in.

Octogirl- I've had two visits with MO, first went well, second not so much. I talked to my BS about a recommendation for a different MO. I like and trust her, and want to make sure my team works well together also. She told me she would like me to give MO another chance. She likes and respects him, so I'll try again- this time with a third set of ears. My SIL helped her husband through lymphoma and her SIL through bc (2 primary tumors- a sarcoma and a carcinoma), so she's familiar with the chemo terminology and expectations. Depending how the visit goes, I'll request again.

1step, I think it makes sense to have another set of ears with you and to see how that next visit goes.

My MO and I got off to a bit of a rocky start, but my bs, who I LOVE, had recommended him, and my issues weren't with him, they were with some of the staff (one staff member in particular) who really didn't listen to some issues I was having. I had hubby with me at the initial visits, and he urged me to explain the issues directly to MO. I did, and told MO that the way the staff member was treating me wasn't going to work. MO dealt with the issue directly and swiftly, in a way that made it clear that he respected my needs and wishes. We've gotten along fine since then.

To be clear, however, the issues I had were *not* about the type of treatment I was getting, and I do think that if you have questions the MO can't or won't fully answer about why certain treatment approaches are being taken (such as chemo vs non-chemo) that a second opinion is in order. One thing that is very important to me is that my MO's recommendations on treatment are evidence based, and that he keeps up with and integrates new research findings into my treatment plan.

So yes, if you aren't sure, ask!!! You deserve thoughtful, complete answers.

Hugs!

Octogirl

I get massages, chakra and reiki from a wonderful Italian woman here in NH. She's like my personal holistic health maven. I never believed in any of it until I had my first session with her. She gave me the name of a woman who has guided meditation videos on you tube. Belleruth Neparstek Health Journeys.

After my diagnosis, I had a reiki session and she took me somewhere else for an hour using the techniques from belleruth. It was awesome!

Sloan- that's great on your run! That must have felt incredible. I can't wait to get back on a spin bike.

Sandy- we have a theater like that too and it's wonderful! Love the vegan choices that you made;)

1step- I agree with the others. If youre leary of the plan, ask for the oncotype and maybe that will help solidify the decision. My bs ordered it automatically. But I'm still waiting for the results!!!😡 Hopefully tomorrow.

MLP: so glad you mentioned reiki. My boss has set it up for me to have a reiki session with one of our past clients. I was a little apprehensive at first, but am now looking forward to it. Just need to set up a time/date.

Octogirl - My husband was "almost" a music major in college, too! They'll have something to chat about when we meet up!

I just finished reading the 10 pages of posts that I missed since Tuesday.  Wow.  I am sorry that I cannot possibly respond to all of the posts.  Welcome all newcomers.

However, Molly and HH - You guys are inspirations to me.  You are handling very difficult family issues with your children with grace and positivity.  I wish you the best.  Dear Sloan:  I hope that your son's brain tumor is benign and that he is fine.  You are an inspiration too.

I love to read, to crochet, and to walk as outlets for relaxation.  I absolutely love being out in nature.  I instantly relax if I am in the woods or near the ocean.  Unfortunately, I work 13 hour days (this includes my long commute) so it is difficult for me to find the time to unwind on a daily basis. 

I am doing Reike through Healing Touch Buddies.  This is a free service in my area to bc patients.  It is absolutely wonderful.  Volunteers provide this service and most of the volunteers are bc survivors.

My son's 17th birthday is today.  I made pumpkin pie for him.  He loved it. 

My x-husband left me for another woman the day after my son's 1st birthday.  I have been a single parent to my 2 children for exactly 16 years as of tomorrow.  Raising children alone is hard.  My X and I get along well but he does not contribute financially. He owes me SSSOOOOOOOOO much money.   It has been extraordinarily difficult on every level.  Not getting child support and paying medical bills for bc, plus paying for all of my children's needs and for college expenses is extremely stressful and anxiety provoking for me.  However, I am very thankful that my children are healthy and happy.  (My daughter is 20 and she is a junior in college.  My son is 17 and he is a junior in high school.)  I am so lucky that I have an excellent relationship with my children and we actually have fun together.  I am truly blessed.  My life is much bettter than what most people experience even though my life is not easy.  I am so thankful every day for all of the positives that I have in my life.

I am so glad that I can include all of you in my wonderful support system.  Thanks.