Alice, Hanoria and Sue

Sue,
I didn't understand what you ment, so I had to go back and read what I wrote, and then I laughed at myself. When I said I sat by a swimming pool, I ment the indoor pool at the local college -- where the kids take swim lessons. I certainly did make it sound like a pool in my back yard, though. (Giggle, giggle) Sorry about not communicating better!

I am so sorry about your stiffness. I don't remember, how long have you been on tomoxifin? With tomoxifin, does the stiffness permanently go away after you stop taking it? The info that came with Famara said joint pain was a potential side effect. I've now started having daily issues with one wrist. (sigh) oh well. If the issue is breast cancer vs wrist pain, there is certainly no question which one I'd prefer.

I was alone for a little while yesterday, and suddenly I felt the tears coming. Previously when this happened I tried calling "Reach for Recovery", and that was a bust. This time I called "Y Me", and they were absolutely wonderful. It's amazing how just crying/talking over the phone with someone who understands really made a huge difference. It only took a few minutes of her time, but it was a major help for me. (I now have this telephone number saved.)

We are survivors -- better than anything a TV show can create. We're the real thing.

Hanoria

Hanoria,
Ok, now it makes sense! I was wondering! I just found out the if my thyroid meds are messed up it can also cause muscle and joint pain, so I don't really know which it is. I have only been on them for 4 weeks and will go back to the dr on Monday. I guess he will check my levels and maybe increase or change my meds. It is really bad first thing when I wake up. I have to get moving slowly and into the hot shower. The rest of the day it is ok except when I am sedentary for any length of time, so I try to move around alot at work, etc. I also am having some episodes when I just want to cry. They come out of nowhere and your right, it is when I am alone. I'm glad I have work and these boards. I just keep telling myself, I love my new normal, I love my new normal!
Sue

Hanoria,
A co-worker gave me a purple notebook and purple pen (my favorite color) before my lumpectomy last year. She encouraged me to write down what was going on with me each day, medically and emotionally. It really turned in to a good thing for me. It was especially helpful during chemo, helping me remember symptoms and solutions so the next round I could look at my journal and see what worked. Now with the tamoxifen, it helps to just have something documenting how I feel each day, and also helps me when I need to vent, etc. I go back and read it often. It amazes me what I went through and how far I have come. I have had 4 surgeries in the past year. Breast cancer was not my initial diagnosis. I went to the er last Jan. with chest pain which they thought was blood clots in my lungs. They found a spot on my lung which of course could be lung cancer. So, the tests began. The spot on my lung is still there unchanged, scar tissue they think. I still have a scan every 6 months to check it. The chest pain was actually my gall bladder! The pet scan I had for my lung showed the bc, as well as a lymph node on the other side and my thyroid. So I had a lumpectomy, my gall bladder out, the lymph node on the other side out (benign), chemo and then my thyroid out (also benign). So you can see how much writing down all I was going through helped me. I will continue to write in it probably forever, since I will be living with this forever.
You should try your onc. office for a support group. Mine has one that meets monthly. I haven't been yet but the further I get away from the initial stuff the more I realize that I need something. Everyone else thinks it is over since the treatment is over. It's hard when you are expected to me your self again. I am so proud of you for what you are doing. You should keep the tree up forever. Use it as a sign of your accomplishments so far. You are only a few months into this so don't be hard on yourself. As I said earlier, I will celebrate my 1 year this Thursday and some days when the anxiety and worry get to me, I feel like it was yesterday. Have a great week!
Sue

Kelly,
Yeah for a clean house! I am amazed that you are taking care of kids, work and cleaning your house. I don't have any kids at home right now so I could let mine go longer, but I honestly don't remember having the energy for a long time. I went to work, came home and took a nap, then I would walk for an hour and then bed by 9:00. My husband was great about eating whatever was in there, he actually enjoys salads so I didn't fix many dinners. I remember last year I had the mammosite balloon in over Easter weekend so I really didn't want to do anything, my son came over and asked me if I could have anything right then, what would I want and I said my house vacuumed! So, he did it for me. Glad to hear you are sleeping better. Hope everyone has a great week.
Sue

Kelly,

I live near the Kennedy-Edens split (for non-Chicago folks, those are the names of 2 Interstate Expressways on the NW side of the city -- each section of the Interstates have a different name, and it defines exactly what part of the expressway people are talking about), or I-94/I-190 junction, to be technical. Ever do Brookfield zoo? It's farther south, does charge admission, but is a million times larger (and better parking)than lincoln Park. And, my mom used to say "My house is clean enough to be healthy, and dirty enough to be happy". I prefer to think that my house is just extra happy most days

Sue: I asm in awe of you.

Oops -- 3:55am, time to go to work.

Hanoria

Kelly,

I wish I could give you a hug -- meltdowns are so miserable to go through. I hope the news that set it off wasn't health related. My thoughts are with you.

It's amazing that you can reach outside yourself and help the gal just starting mammosite. In some ways it will be good for you, but in others it will be tough. Just being a physical "I understand" presence can mean the world to someone. You win the gold star award.

I called the med. onc's office yesterday, just to check. The arthritis-like symptoms I'm quickly developing are a not-too-common (but a real) side effect of the aromatase inhibitors. The nurse said the joint problems increase, then plateau, and maybe even back down a bit -- but they will continue as long as I take the med. After women stop taking the medication, the joint problems *usually* disappear (but not always). (sigh) Some choice, eh? Joint stiffness/pain, vs increased risk of reoccuring cancer. Duh.

Felt like a true druggie the other day. I spilled my Femara on the bathroom floor. The pills are small yellow-brown circles, and the linoleum in the bathroom has a multicolored tan/brown/gold design. I was on hands and knees feeling under the sink, behind the toilet, etc, desperate to find all my drugs, and counting each pill carefully. I had to laugh at myself.

Today Chicago is about 50 degrees, and the snow is quickly melting. I actually saw a little green thing trying to poke it's head up through the mud and snow. Maybe the squirrels didn't eat all the bulbs, and I'll have at least one tulip this year?

Here's hoping we all have a terrific week!

Hanoria

Kelly, We all need to let the why me out sometimes and have a good cry! It is hard to always be so brave.
Hanoria, I am taking tamoxifen and have developed the worst joint pain, I feel like I am 90 years old when I first wake up. My onc said it wasn't a side effect but when I went off of it for my thyroid surgery, it went away and it came back when I resumed taking it. It started about 2 weeks into taking it. It is starting to get better or maybe I am just getting used to it. My joints still hurt first thing when I get up, but I get right in the shower and am better when I am done. The only other time I notice it is if I stay sedentary for too long, so I try to make sure I get up and move around at work, etc. I hope your se get better with time. I just keep telling myself that worst case I will feel this way for 5 years and 5 years is a small part of the rest of my life (I pray!)
We have had the best weather here in Georgia this past week, sunny and in the 70's! Speaking of bulbs, last May I planted a bunch of daylilies in my front yard with the idea that I would see them as I came home from chemo and they would make me smile. I love flowers but allergies limit me to looking from a far. Well, none of them bloomed! I had some pitiful little green stems come up and that is all. I am sure the squirrels got them this winter, at the very least they moved them around as they seem to do with all my bulbs, so who knows if I will ever seem them.
Hope everyone has a great rest of the weekend and the week to come, time change tonight.
Sue

Hi ladies! My name is Jamie and I am the Program Coordinator for the Voices of MammoSite volunteer program. Our website (http://www.voicesofmammosite.com/) will go live on March 30th. We are actively looking for women to join us, and I know a couple of you had mentioned hearing about the program. If you are interested in joining us or would like to learn more about the program, please drop me a line and I'll make sure to get an information brochure sent out to you right away. Thanks so much!

-Jamie

Once again the computer ate what I typed. (sigh) I wonder what it's like to not have a hungry computer... I'll try again to post.


Jamie: welcome, and put my name on your list. I would certainly be interested in helping another woman to sort out the mix of emotions (and physical discomfort) that goes along with mammosite.

Kelly: what do they expect to find? If they thought it was a metastastic situation they would have investigated it further before doing the surgery and mammosite. Did they give you any hints?? Having to wait is miserable. You have my empathies.

Sue: I saw the rad onc yesterday. It seems that the pain I have is not normal. The breast is swollen, excessively tender, drained for almost 3 weeks, and has an increasing radiation burn (now about 2" x 2"). Gee -- maybe that explains why it hurts so much. Hmmm
The doc said that one option was to have it drained (yeah right -- I really want someone sticking a needle in there). So, we wait and see. She said that every 3 months I have to come back for a mammogram. The rad onc want mammograms because she said the microcalcifications show up on mammograms, not MRI. The med onc wants breast MRI because he thinks they give a better evaluation of what's going on in the breast. I must admit that the idea of taking my burned, water-logged, balloon of a breast and squishing it in a mammogram doesn't exactly sound like fun. (How do you spell masochism?)

My joints are slowly stiffening. In honesty, I wouldn't be surprised if I ended up with a cane before too many more months. Oh well -- stiff and maybe dead cancer cells vs not stiff but increased chance of cancer returning. No brainer in my book. Maybe I'll put a horn on my cane.

As trivia, I've been getting statement from the hospital. Not what I have to pay, but what the hospital bills the insurance company. Ready for a shocker?

Mammosite catheter (just the cath itself): $8,500
Insertion of Mammosite (includes cost of cath): $12,000 (even number -- how unusual!)
10 Mammosite radiation treatments: $65,780
Initial consultation with rad onc: $396
Hosp room charge for initial consultation: $106 (must be mighty expensive paper on the exam table!)

I pay $700/mo for my BC/BS-PPO (FEP), but currently I kiss the card every day. Last November my husband's job gave employees the option of changing insurances -- he changed from United Healthcare to BC/BS-PPO ($200/mo), effective January 1st. At the time we debated the added expense of a second policy, but opted to be cautious (in case I lost my job). Now I kiss both cards every day. My max out-of-pocket, catastrophic limit is $3,000 ($4,000?). The $900/mo for premiums sure looks cheap right now.

Anyone else get statements yet? It would be interesting to compare costs across the US.

Hanoria

Hi everyone,
I just got back from Florida today, St.Patricks Day. I was lucky to get home with all the snow we had up here in the northeast. I flew in to Philly airport, if I had to go to New York, I probably would have been out of luck. As it was, they overbooked the flight and we did not have a seat assignment. They were looking for people to accept a round trip voucher good for anywhere Airtran flies and go on another flight. You'd have to be crazy, lots of people were hanging around from Friday, trying to get a flight home. I must have had St. Patty helping me, we ended up going business class, since there were no more seats in coach!
I also Sue and Hanoria have been having pain in my breast and the last visit to my surgeon she said I had a seroma. I have swelling (it's a long lump that can be felt) around the incision and the skin on that side of the breast is numb. She said she could aspirate it also, but hopefully it will reabsorb itself. I looked it up on this site and they reported that twenty percent or more woman with mammosite treatment end up with a seroma. I'm due for a mammogram in May, and I can't imagine having one at this point. Hopefully it will feel a lot better by then. My surgeon said she could aspirate it also if it still shows up on the mammogram in May and hasn't reabsorbed by then. If it doesn't feel better before the mammo I might think about having it aspirated, I don't think I want to wait and have it done after, she must be crazy.
I have been lucky that I don't have any rash or anything on the skin from the radiation. I'm surprised since I'm so fair skinned, I just assumed I would get it. I see my rad onc on Monday, don't know if I have to see him again.
I haven't gotten any bills yet, I'm sure they'll start soon...hope there aren't any surprises. I don't know what people do who don't have insurance.
I also had to laugh at the poop stories, I used to have a lab and spring thaw was so awful, the snow covered it all winter, you couldn't see it until the thaw. I also used to live in Northwestern Ct, here in Central NJ we don't get much snow. I have two chihuahua's now, who go off into my woods and it's not a problem. I forgot about that until you mentioned it, had a good laugh.
Take care, Alice

Sue: Belated Happy BD! 49 was a great year -- it was before 50.

Kelly & Sue: Having to wait and worry, after all you've already been through is one of life's unfairnesses. You have my empathies.

Alice: Florida? I'm jealous! Next time you go, how about taking a gimp along? Except for looking a bit lop-sided, I don't look too bad. Heck, I even come with 4 kids and husband. You get all the sibling squabbles you can handle, and husband is good at fixing suitcase locks and reading maps.

Julie: how is your neuropathy doing? Did you have the neuropathy and headaches before you started the anti-cancer meds, or did it start after that?

Jackie: abut a month ago you were going to stop the tamoxifin and see if the saide effects stopped? did you stop the tamoxifin? What happened?

Jamie: did you put me down on your mammosite buddies list? i think it's a great idea and I would love to help the next gal.

(I have trouble with being timed-out, and what I typed going into cyber space, so I'll send my post as 2 separate messages -- stay tuned for part 2)

Hanoria

Hanoria- I know what you mean about "best you could do at the time" and obviously the Lord knew you would need to see hope this spring and has provided it. Here in Alabama we are having 75 degree days. Beautiful. I have only been able to sit out in the sun, too weak to take a walk or anything.

I have been feeling so bad that I haven't been on the past week or so. After being off of tamoxifen for a week, I was still having terrible fatigue, weakness, muscle aches and migranes. Went to my Family doc and he didn't think it was from the tamoxifen since I had been off of it for a week and hadn't improved. Recommended me to contact onc. and see about starting tamox. again. Family doc. thinks that I am having schematic symptoms from damage to spinal chord from vitamin b12 deficiency. Physical and mental stress to body causing recurrence of symptoms I had ayear and a half ago. I give myself b12 shots twice a week, but I am not getting any better. How am I supposed to not be stressed out? Going to see a physcologist next and another neurologist.

Don't have enough brain cells to remember who is having what problems. Who is having the problems with the blisters and painful breast? I had horrible pain for about two months, but it has finally gotten better.

I'm really interested in the voices of mammosite site. I will be happy to participate. Most of my experiences with that were positive. It is what has happened to me since that I am having trouble with.

I hope you all are doing well. I sometimes just read because feel too bad to post, but I consider you my mammo freinds and enjoy your posts.

Jackie