Lumpectomy Lounge....let's talk!

mustlovepoodles

Ugh. I am pretty sure I have shingles in my neck, right in front where it is very noticeable. I showed it to my MO last Thursday when I was there and she even asked me if I thought it was shingles but I told her no, it wasn't hurting or bothering me at all. She gave me some antibiotics in case it was cellulitis and told me to put cortaid on it. Been doing all that since last Thursday. About 2 days ago it began to feel sensitive, but not itchu. It doesn't look like poison ivy. But it kept me awake a lot last night and now it looks a lot like shingles.

Foo! I am scheduled for an iron infusion this Thursday at the MOs office ( oh yeah, I'm severely anemic, too.) Guess I'll be cancelling that tomorrow.

Soooo now im sporting a big bandage on my neck AND I have a wedding to go to this weekend. I have an appt with my dermatologist Thurs afternoon, but I think I've missed the antiviral window.

Whatever this is, it sure is sore!

april25

Hey, all! I haven't popped in here for a while... things get much less "exciting" after treatments cease.

Sloan -- Fantastic photos! I did a Loire Valley day trip out of Paris over 10 years ago... So cool seeing those lovely old chateaux. And the alps! I lived briefly in Britain and had friends who had a place in the French alps where I stayed to do some skiing (ages ago when I was still in college). I loved skiing-- also got to Val d'Isere and La Plagne and Innsbruk at various times to ski. --I'm not sure I'm brave enough to stand in a glass observation box though! agh!

mustlovepoodles -- Oh, no! I hope it's not shingles! ugh! -- I made sure to get the shingles vaccine before I started chemo, because anything that lowers or messes with immunity can allow shingles to appear. It could still happen, but I feel a lot better for getting that vaccine!

------

I just had my bilateral mammogram, one year after LX, with appt. with my BS. It was fine--they were gentle and kept asking if they were pressing too much... And they did extra shots that were magnified, just to make sure. THEN, I got called back for more shots. The tech mumbled about something they saw in my left breast! but also said something about them not being able to talk about it.

They send you back into a little waiting room still in the robe (they have nice thick bathrobe-like robes instead of the typical hospital gowns), while they view the films to make sure they are good before they release you back to change to your clothing. Anyway, I was freaking out a bit, wondering if I'd get called back and shunted into a biopsy room--kind of flashing back to when I was dx'd after I found a lump in my breast! But, no, they said the extra shots were fine and I could get dressed and go up a floor to see my BS.

I was still TOTALLY freaking a bit. Got called in and got undressed and put on another robe (I really like the robes instead of the flimsy hospital things). The NP asked how I was doing and I said, "OK, I think!" She did all the palpating of both sides and lymph areas. And asking of the questions. I've really been doing fine. I had been feeling stiff, but no bone aches, so if it's the anastrozole, I can deal with it. No aches or pains. No LE that I can tell. I had some nerve weakness in my arm on the bad side, but it seems to be slowly improving, so I didn't even bother going to the neurologist about it (pretty much because there was nothing they could do for the chemo-induced neuropathy except confirm I had it!--Luckily that went away on it's own). Had my port out, which was great. Scars are all there, but healed fast and don't bother me. My skin was slightly darker and freckled in places from the rads, but that is fading.

Anyway, my BS finally comes in with his two assistants and immediately says, "everything looks good!" Whew!

I was freaking out a friend of mine who I was texting at the time, poor woman!

I asked what was wrong with the mammo films that had to be re-done, and the NP said, "Oh, that was nothing! Just a crease in the skin that blocked a part they wanted to make sure to see."

Would have been nice if the tech could have communicated that!!!! Ah, well. getting an all clear was good enough. Got another year to get beyond those first two years...! But I can't worry too much about it since there's nothing I can do about it! (Although, I could eat better and exercise, and all that. *sigh* I am back to being a bad sedentary person!)

Anyway, nothing much else happening here... which is GOOD, really. So nice to get back to normal life!

ChiSandy

OUCH, Poodles! Sounds like you may have developed a milder case of shingles.....but weren’t you just in the mountains? Could very well be a plant-caused (urushiol) rash. If it is shingles and begins to hurt, gabapentin or Lyrica do help.

april25, glad all turned out fine! Although I’m supposed to see my BS’ NP 6 mos. post-op (it’s 8 mos. and I still can’t get an appt.), they said no mammo till one year after the last one, which means August.

april25

I've been getting mammos every 6 months in my affected breast, every year, bilateral. I get the appt. made for the next before I leave the Breast Center. The mammo is done right before I see my BS for follow-up.

mustlovepoodles

No, it's not something I got up in the mountains. It started last Wed., before my MO appt on Thurs. She wasn't sure what it was then.  It's zapping me every 10-15 seconds now and it's very tender to touch. I'm already taking gabapentin but I may need to add another 300mg dose. I'm going to call my MO office in the morning. I'm pretty sure they won't want me in that chemotherapy room with shingles!

Molly50

Hi April, nice to see you. Glad all is well. I got my surgery date!! July 22nd at 7:30 am. My PS does charity work every summer so I am scheduled in between his trips. BS will do the post op appointments and then when PS returns we start fills.

Sloan15

Sandy, April and Brithael –You know your castles! Yes, Chenonceau!

Peggy -- Speaking of castles, glad you got an offer on your house! Yay!

Sandy – We went from the Loire Valley, through Paris, and then to Eastern and Southern France. Ahh, all good areas. In the French Alps, we went to the town of Chamonix (Mont Blanc). You ride up two freaking steep gondolas and then take an elevator through stone to get to the top (where I stood in the invisible room). I really recommend it. They have a neat train ride to a glacier and glacier cave in that town, too. I was in the Alps one other time and went to Jungfrau in Switzerland. We stayed in Wengen, Swtizerland . I really recommend that, too. The Roman toilets were in the Provance region. I didn't even know the Romans were there!

Poodles –I'm a camper, too. Where did you go camping? I have a little tear drop that we pull behind our car (which I love), and we enjoy getting out often. It really takes your mind off cancer, doesn't it??!!! Which state are you in?

Molly – Hi there. I'm glad you're getting in to try to get this surgery done this summer. I would ask if you need any help, but I know your DH, DD, and DIL will take good care of you. Are you feeling less fatigued on the new meds?

1-step and Sandy -- Sandy will know better than me, but I think insurance has to cover lymphoma therapy as a consequence of surgery, doesn't it? It should!! That is an outrage!

Happy Hammer -- How was the North Carolina get-together? I wish I could have gone to see Sandy and to meet you! I'm thinking of going to NC in 2 months --my dad is from SC and has family in NC-- and I"m trying to get him to go. I know summers are hot and humid, but one of his cousins is sick. So, I need to get him back there. Do you golf? I haven't played in a year (!!!!!!) because of my lymphoma, but I'm going to start getting back into the "swing" of things next week. Maybe we can golf together. My hubby and dad (the best one) golf, too, so we are planning to do that. Oh, and regarding the invisible room.... yes, I hesitated a little going out on the ledge! hahaha!

Okay, here's my new do!

Sloan15

So, I actually went back on FaceBook during my trip to keep in touch with family and friends, and today I posted my new haircut and the fact that I've been battling cancer this past year. Well, it seems that most people knew. Even thought I've been off FB since my diagnosis 1 year ago, I never thought about the fact that my family posted things to my wall and my friends and acquaintances would see the posts. LOL. Well, it makes it easier to talk about now. When I'm stressed I go into a cave until I"m not stressed anymore, and the laugh is on me because here I thought no one knew. Anyone on FaceBook and want to be FB friends in a life outside cancer????

LTF --Aww, I saw in a past post that you were worried about me. Thank you. I didn't take my FitBit on vacation and deleted the app while I was in France, so I didn't see your message. I got my FitBit wet, so I have to find out if it works now! Are you still getting 10,000 steps a day? Did you finish rads?

HappyHammer

Poodles...double foo about having shingles!  SOOO sorry!

SLOAN- while I do not play golf (well I did but many years ago) would absolutely LOVE to see you, cheer you on, etc, so...please keep me posted on when and where...will make it happen.  If you are in the NC mountains within 2 hours of Hickory- we can really do some good things- great food, nice accommodations, etc.  Again, please just let me know your plans.  There may be others who would be willing to join us!  The event for Healing Touch was just fabulous- our resident singer/musician/songwriter ChiSandy was really phenomenal....such fun to meet and be with her and MLPoodles came and was such a fun person to be with as well.  We Southern gals would LOVE to host any of you West Coast gals, anytime!!

HappyHammer

PS, SLOAN- you and your hair look AWE.SOME!

mustlovepoodles

Yes, Sloan, your hair looks GREAT! DH and I love to camp and weve been to about 22 states. We have our rig permanently parked in the north Georgia mountains now, due to our combined health issues. Towing got to be too difficult. Maybe one day we will try out a Class C, but for now we are happy camping at our favorite little campground in the world.

Molly50

Oh my goodness, Sloan you look fantastic!!!! I thought you were gorgeous with silver but wow! I am glad to get this surgery and then later the exchange surgery behind me. BS says it will really minimize my risks. I am doing better on exemestane but I am starting to develop that heavy log feeling in my legs. I just need to keep moving and muscle through.

Poodles, sorry about the shingles. Did you ask if you can still do antiviral therapy?

Sloan, I am on Facebook if you want to look for me or pm me if you can't find me.

Molly50

Have any of you heard of nerve damage from a blood draw? I'm hoping this goes away but about a month or 6 weeks ago I had blood drawn for my MO appointment. The young male phlebotomist that drew my blood really took my breath away with pain. I thought oh well it will pass. Well my right arm still is very sensitive and weak. It started out really weak and painful so it is improving so hopefully nothing permanent. Frustrating because it's the arm I am going to have my mx on.

Sloan15

Thanks everyone!

Molly - Can you find me on FB? I'm afraid I never really learned how to find people. LOL Hey, that stinks about your nerve pain and the heaviness in your legs. It got better when you were on "vacation" from the meds, right? So, it's the meds and not anything else? It's so frustrating!!!!! I find that I struggle getting up from a kneeling position, but compared to chemo, I'm jumping up like a spring chicken!

Poodles - Shingles? Geez! I've never had them, but I heard they are painful. I hope you feel better soon!

HH -- Haha on the golf comments. I don't want to mislead you: It doesn't really matter whether I practice or not, my golf game will still be pretty crappy! I'll keep you in the loop on the NC visit. I usually give my dad about a month to digest my suggestions, then I hit him up again. Like most parents, he hates having me pay for anything for him, but I know he needs to go visit his family.

ChiSandy

Sloan, you look gorgeous! I was in Chamonix in 1993 on one of those “If It’s Tuesday, it Must Be Belgium” bus tours. We stayed in Verbier, Switzerland, took the bus to Sion where we caught the train to Chamonix. We didn’t get to go up the mountain--and it was back when nobody was doing those acrylic suspension boxes yet. (Now they’re everywhere--mountains. skyscrapers, even the Grand Canyon). We then took the bus through the Mont Blanc tunnel, emerging in Aosta, Italy before driving back to Verbier. (From there we went on day trips to Zermatt & the cogwheel train up to the top of the Gornegrat (sp?) where we had great views of the Matterhorn and Monte Rosa; the next day to Interlaken with views of the Eiger & Jungfrau, lunch in Grindelwald; then to Geneva (mostly for a watch-shopping opp), and finally to Bern before heading down through the Rhone Valley to Avignon and finally our hotel in Cannes. We had day trips to St. Paul de Vence for the Galeries Maeght (lots of Cezannes & Chagalls), Grasse to the Galimard perfume factory, and then Nice; next day to Monte Carlo and Ventimiglia on the Italian Riviera before a dinner cruise off the coast of Cannes. Three years later, our Alpine trip was based in Kitzbuhel, Austria--we got to see Innsbruck, the Swarovski Crystal World, Verona, Munich, Mad King Ludwig’s castle, all day trips from Kitzbuhel. For the overnight, we tossed a coin anc chose Venice over Vienna--and the drive through the Dolomites was awesome. That was my last time in the Alps till this past April, when we had a diversity conference in Lausanne and then took the TGV through the Alps to Paris. I wore compression on the train, just in case, but didn’t need it anywhere else on land. I wonder if my LE will ever let me see the Rockies, Olympics, Cascades or Alps again. (I did okay in the Blue Ridge wearing compression, but that’s less than a third as high up).

One of the things that had me shaking my head was that whenever we’d pull into a sizable town, our fellow tourmates would make a beeline for the nearest McDonald’s! Why travel if you’re not going to taste the local specialties? (Maybe it was the no-squat toilets)?

Poodles, definitely sounds like shingles. Do ask about an antiviral ASAP.....and ask too if you should put off that chemo till it clears.

Sloan15

Sandy - Wow, you had a busy tour schedule! I've only seen the Alps in snippets here and there. On the Wengan, Switzerland, trip, we had a great hike down the mountains. It was probably one of the best experiences of my life. It was also one of the funniest as my son asked me, "What does it feel like to touch an electric fence?" (You know the rest of the story, and I have a great picture).

On another topic Sandy, we're going to be in Chicago around July 20th. You going to be home? Should we go out to one of your town's terrific Foodie restaurants while I'm there? I know we have to make reservations in advance, so let me know if you're going to be home!!! I don't know where to go, so I would trust you to pick a good spot!

******

To all of you worried about flying or doing elevation changes after having a lumpectomy, get a compression sleeve and a glove. (Ask your doc for a prescription for one). I didn't have any problems at all with travel in the Alps, all the plane flights, and quick elevators from 10,000 to 11,000 feet. I think it's made for times like these since planes have such good pressure in the cabins these days. Put it on an hour before take off (or going over 8000 feet), and leave it on an hour after landing. I had no problems at all! If you don't know how to to a lymph drainage massage on your arm, maybe learn that by from a lymphedema specialist before you travel. Not all people need to learn how to move lymph fluid, and not all insurance companies pay to see a Lymph therapist. So, you can watch a You Tube Video on Manual Lymph Drainage to get an idea. Pick a basic video that shows how to clear fluid from the arm. Make sure you take some deep breaths that extend the stomach outward so the fluid moves toward your liver. Make sure you clear the lymph nodes in the neck first. Finally, make sure you brush lightly since lymph is near the surface. I wear my sleeve when my arm hurts, when I'm doing repetitive work like house cleaning, or when I change elevation. I do the manual lymph drainage massage on these days, too. (I did it more often when I had swelling from chemo and rads). Good luck!

ChiSandy

Thanks for the LE reassurance, Sloan! Right now, our travel plans (not finalized--waiting to find out if my atypical nevus biopsy re-excision reveals melanoma and if so, what if any further treatment is necessary) have us leaving for Rome on July 20 or 21. We have three nights at the Hilton Grand Vacations Borgo alla Vigne in Selvatelle, Tuscant booked for July 26-28 (flying Rome-Pisa and driving to the resort) and were hoping to spend some more time in Rome beforehand than we did before our December cruise. (As you well know, you lose a full day of activity taking the red-eye to Europe). Any way you can get to Chicago earlier? I’ll know more in the next couple of days. (The reexcision won’t be Mohs surgery--which takes frozen sections and dxes them on the spot--but rather will take till next Mon. or Tues. to get results). Dang it, why isn’t there a “one to a customer” rule for types of cancers?

ejmann44

I was googling lymphedema and found some neat looking compression sleeves. Google lymphedivas and you'll see. I don't need a sleeve now but just wanted to see what was out there. I think I'll have some fun and get one of these if I need it.

Still waiting on that appt. on Thursday. I'm getting nervous. I just want to move onto the next stage and get this over with. Anyone else have younger kids? Mine are 10 and 11.

ChiSandy

I decided to “out” myself as a lymphedema patient--not enough people (even health care professionals) know about it and it is much, much commoner than most people think: there are more people with LE than with AIDS, MS, MD and Parkinsons.....combined! Of all celebrities, only Kathy Bates and John McCain openly admit having it, and only Bates is an activist for awareness, research & treatment. So I have a bunch of sleeve/gauntlet sets: two beige Juzo (with a couple of gloves as well as a gauntlet); and by LympheDivas, one each “Music City” pattern, Lotus Dragon tattoo, Koi tattoo, patchwork denim and leopard. On order are solid red, black and purple Juzo sets (they were on sale). I will be needing to wear compression more during the summer due to heat causing swelling, and if I’m gonna swelter I want to at least make a fashion statement . (Also, for long trips I might not get to do laundry and they might not dry in a hotel bathroom).

PontiacPeggy

April, welcome back! Glad your mammo was good.

Poodles, that's rotten about your possible shingles. I hope you find relief quickly! But glad your vacation was great.

Sloan, love the new hair color. You are looking great. What a wonderful trip you had! I am happy for you.

Molly, YEAH for the surgery date!!! That's weird about the nerve damage from the blood test. I'm sure anything is possible.

Had the FHA appraisal yesterday. Hopefully no problems will be cited. Now I am packing what I can in earnest. I have movers doing a lot of the packing. My oldest son thinks I may have a rotor brake problem so have to get the car in for that (I think it's fine but I'm a "girl"). Plus all my doctor appointments, DH's step-brother in the hospital with pancreatitis to visit, vet visit to get much needed tranquilizers for the cat (and test them out) so she can travel to Spokane and not drive me crazy.

Keeping our Texas sisters in my prayers with all your rain.

HUGS!

octogirl

Welcome back from me as well Sloan! Your hair does look great and the pics were great...I don't think I could have gone out into that invisible room....

Molly50

I Googled it and yes the nerve damage does happen and usually resolves itself. Good luck with everything Peggy. Hopefully your appraisal comes back plenty high.

Heathet

A good friend of mine gave me the phone number of a breast cancer survivor that works with her. My friend told me to give her a call because she had some good tips to pass along about chemo treatment. However, she did warn me that she tells it like it is. I assumed she meant the hair loss, mouth sores, GI stuff, ect, ect. I called the lady and she did give me some good info on preventing neuropathy in my fingers and toes but then the conversation really took a turn. I guess she turned on the tell it like it is button and proceed to tell me that durning her treatment she got pneumonia and was hours from dying at the hospital, and would have died if the hospital didn't transfer her. Thenher good friend going through chemo 2 months before her died of pneumonia in the hospital and another friend going through chemo for BS also died in the hospital of pneumonia. She was saying be prepared to get sick and have your treatment delayed. She said one minute you are fine and suddenly you are super sick. If I go to a hospital in our area they will probably mess up my treatment and cause me to get seven sicker. Basically be prepared to get really sick and close to dying. This really hit me hard and basically I felt like crap after this phone call. This conversation just really emotionally stressed me out. I know the facts about chemo and increased risk of infection but I don't want her story to influence me or be my story. I want the facts but I don't want the depressing stories that scare the shit out of me!

Sloan15

sandy - Whaaat? One type of cancer per patient should definitely be the limit!!! These are the times when its good to be really really negative (in test results, that is). It better be negative because you have another great trip planned!

Peggy - you have to post pics of your cat trying out his new meds! I laugh just thinking about it!

Sloan15

Heathet - geez, I had chemo and your overview of the conversation scared the crap out of me! Did she do chemo more than 3 years ago? Things have changed with nausea meds ai much, and with Neulasta shots for sickness, people are not getting as many sicknesses, either. Stick with us, Heathlet. We'll talk ya down. Chemo is doable.

mustlovepoodles

Heathet, Holy crap! That lady is full of chit. You did NOT need that kind of "encouragement." Just for the record, my experience with chemo was NOT AT ALL like she described. And who the hell tells you stories about people dying from complications of chemo when you're facing chemo, too. Geez.

My chemo experience wasn't all that pleasant, but it wasn't horrible. I never threw up once. I never looked sick. Yes, I lost most of my hair, had changes in taste and texture, diarrhea, and a lot of fatigue, but it was all manageable (they give you meds for SEs, other than hair loss). I had fevers 3 times, for which I went to the ER. Only once was I hospitalized--my blood counts got all wonky and I had a major infection. But I only stayed 4 days and I didn't come anywhere NEAR dying. I worked part-time throughout chemo and I think I only took about 5 days off through the whole business.

Certainly no one looks forward to having chemo, but your "friend" is waaaay off base. She should be horse whipped for spreading tales.

mustlovepoodles

Okay, I cancelled the iron infusion. It's not chemo, just iron. I'm really anemic and the MO said that oral iron intake would not correct it quickly enough, so I need the IV iron. I know better than to show up in the chemo room with all those cancer patients and expose them to the chickenpox virus (causes shingles--shingles itself is not contagious, but the virus that causes it is.) I'm seeing my derm tomorrow to get her take on this rash. Otherwise, I'm keeping it covered. I'm pretty sure I've missed the 72 hour window for taking antivirals, but I'll ask. It's been there on my neck for 8 days already.

octogirl

Heathet, I agree with what the others have said...if you are not part of a thread of folks going through chemo now on this board, you might want to consider joining one, or starting one. You need support, not that type of bs to scare you...She DID NOT tell it like it is for nearly all chemo patients.

My experience with chemo was NOTHING like that. As has been said, yes, losing my hair was not fun, but honestly, it didn't really bother me too much until I was through chemo (when I started to worry about if and when it would come back, which is a real concern to be aware of if you will be doing Taxotere). Losing my hair was the worst part, and I hated feeling wiped out and low energy but that was generally only for the first few days after each infusion. I did find losing my sense of taste to be no fun; but I found that mashed potatoes and gravy and ice cream always tasted good, so carbs be damned, that is what I ate. But as for getting sick: I never vomited, there were a few days when I felt 'morning sickness' almost exactly like the mild version I had in my pregnancies (and I treated it the same way: a bit of water and crackers while still in bed and I was good to go...). The meds are MUCH better than even a few years ago, as others have also said.

I hear you about worry about inadequate facilities (I have the same type of issue in my rural area) but as it happened, I never had any major issues, just minor ones, and I could deal with them. Your MO and his or her staff will help you deal (if they don't, you may want to consider switching MOs). and, you will be having chemo outside of flu and cold season if you are doing it soon, so even less reason to worry needlessly. There is no reason to believe that any of that chit will happen to you.

When I started chemo, my MO said to me, "I want you to lead as normal a life as possible." It was the best advice I got. I worked full time all through chemo, including two business trips, one of which was for about four days. (hubby did come along on that one in case I needed support, but as it turned out I was fine and hubby enjoyed the time in the nice location where that meeting was held). The only thing I was discouraged from doing was swimming in public pools and hot tubs (risk of bacterial infection). Otherwise, it was do what I felt I could, including exercise. Numerous research studies show that exercise reduces the SEs of chemo, so I walked every day I could. Honestly, in many ways I was in better physical shape then than I am now.

Chemo is indeed doable, and yes, bring your concerns here as well as to your MO.

Hugs!

Octogirl

ChiSandy

Heathet, I didn’t have chemo, but many of my friends (and most of our sisters here on BCO) did, within the past couple of years and they came out the other side just fine. Don’t believe the scare stories. Yes, your immune system will be weakened, but not inactivated--and there are Neulasta or other white-cell boosters they’ll give you to protect it. If you are really afraid of infections that could hospitalize you, be proactive: make sure your MO or PCP has admitting privileges at the best hospital(s) in the Detroit area so you can be transferred from a smaller neighborhood ER. If (s)he doesn’t, spend the money for an office visit with a PCP or internist who does. If you have preexisting lung conditions (allergies, asthma) don’t leave home (not even in an EMS) without your inhaler(s) and use them proactively and consistently. If you are admitted and unsatisfied with the adequacy of your care, speak up. Don’t hesitate to be a PITA. Demand to be transferred. (You’d be amazed how quickly my husband’s fluid overload/impending heart failure--at the neighborhood hospital to whose ER he was taken for a sudden post-op complication--was reversed and he was allowed to write his own diuretic orders once he mentioned I’m a lawyer).

But I would also follow the advice here to remember you’re a person with a purpose more than you’re a patient--and to maintain as many of your everyday pleasures and tasks as you possibly can.

As to your haircut--adorable! (If you’re getting wigs, that style should be one of them). Did you donate the cut hair to Locks of Love or save some of it to make a ponytail and/or bangs to fasten to hats or caps?

PontiacPeggy

Molly, Me, too on the appraisal. And hopefully I won't have repairs to make to be up to snuff.

Heathet, That was an awful conversation. Listen to the gals here. You KNOW them and they will not lie to you. And remember, there's always someone who has the worst EVER (insert experience here). How they almost died in childbirth with a 20 lb baby, fell out of a plane and broke every bone in their body, died went to hell, then heaven and then lived. You name it.

Sloan, that is not one bit funny about my catShe hates being given pills. She doesn't have claws but bites like a pitbull. Should be interesting. The vet says I need to take her on drives so we can tweak the dosage if necessary. And I have to get her used to being outside on a leash. Oh joy!

Poodles, hope you can get some relief from your shingles. You need a break!

HUGS!