Starting chemo January 2009?

jrgolomb

Yup, I've gotten comments like that about my hair, or just stares.  Kids who haven't seen me for a couple of years don't recognize me.  Weird.

 Well, I am back from the hospital....new foobies and they already feel better.  My arm pits are oddly the most sore of my body.  I had a horrible time with the anesthesia this time-nausea and almost throwing up, miserable.  I am so glad to be home with my new sleeping bear mounds!

ktym

Jess, thanks for checking in and letting us know how you're doing.  Congratulatiosn on the sleeping bears

holtbolt

Jess... sorry about the anesthesia but yay on the sleeping bear mounds!!

I was under for like 9 hours for my Stage 1 recon.. and I didn't throw up but I am missing big blocks of memory... very very strange....I'm hoping I didn't do or say anything too embarrassing ....

My hair is no longer curly and looking like it's old self... but I think a little thicker overall so that's good...

Renrel.. sorry to hear DS was sick.. ugh...

Jilly... I have never heard of "cancerization" either.. what is the update on that.. did you find get any clarification?  I won't even pull out my pathology reports or anything at this point... for fear that I will see something on there I didn't see before and start the worrying all over again....

I wanted to tell you that I was contacted by BMX surgeon's office and they now want to do the BART gene test on me.  Apparently it's an add-on to the BRCA 1 and 2, which I tested NEG on.  But there is so much family history and now with mom being dx a second time after 20 years.. they believe I am a good candidate.  I guess the BART picks up a gene mutation the BRCA1 and 2 don't in a small number of people.... anyway.. I'll be doing that... it won't change anything for me or mom... but help my sisters and other family members if it's positive....

Have a great weekend Jewels!

jrgolomb

Yeah, holt feels good, but I still like bayou boobs better. 

ktym

OK, here's my beef for the day.  How can chemopause and tamoxifen slow your metabolism down so much when you have non stop hot flashes?  Why doesn't all that heat being generated burn up a few calories?

Frankie_

Kmmd- Thanks so much for the tips! I will be trying these out. To answer your question. My neurophy feeling... is constant (never letting up) pins and needles and numbness in my feet/toes & hands/fingers. I sometimes get electric like shocks too. As far as pain goes, if I stand on my feet from anywhere between 30 mins-1 hr my feet hurt. I have also experienced the clumsy, loose your balance situations. I often hold on to the person I am walking with or lean myself onto a shopping cart to hold myself up. I just turned 39 years and feel like I have aged significantly since having the Taxol. I have so much bone and muscle weakness. I really worry about the long-term effects of what I am dealing with! Fortunately, I am off from work presently until September. I hope to recover and heal from the SE's prior to going back to work. My office is above a large flight of stairs (25 or so) that I would be required to go up & down to gain access to the entire workplace. I have such difficulty climbing up my 3 steps into my own house. I have to use 2 feet not alternating feet to get up and down.

Frankie

jrgolomb

I wish I could get rid of the weight I put on during chemo.  I am exercising on a regular basis, yet at times the pain in my feet really gets to me.  Now since this latest surgery I don't dare push it too much.  I haven't driven a car in about a week, now that is difficult.  I feel like I am 15 years old again, asking someone to drive me somewhere.  ack! 

I don't know what to say about the hot flashes and why doesn't that burn fat.  So unfair.  Last night I went out for dinner and thought I was getting hot flash after hot flash and then realized I was sitting over a heating vent....durrrr......

Renrel

I am also struggling with the weight.  I am still 10 pounds over what I used to way and can't seem to budge it.  I am eatting more healthily but maybe there is till too many fats in my diet, even if they are good fats.  I am also not getting and aerobic exercise as yet. I know I need to but can't figure out where to fit it in.  I am already not getting enough sleep, without even counting the fact that hot flashs make it poor sleep much of the time, even if the don't wake me.  So I am not getting up earlier to get on the tread mill.  Just before be will keep me up.  When I get home from work I have to start dinner, as it is I don't feed DS till 7ish when half his class is already getting into bed. 

Hot flashes were better, now they are worse.  I think because they are brought on by stress, and now that I am back a work full time (minus about an hour a week) I am feeling stress. I have a backlog, my house is a mess, I am doing passover seder at home since we don't have vacation time to travel to a relative, there are so many things I should be doing for DS that are not getting done (arrangeing for summer camp,  music lessons, play dates, ect.)  Yoga, deep breathing, and mediation help but I still feel the stress.

I also find myself thinking about a recurrance and what it would mean more.  It is often the first thing on my mind when I wake.  I assume that it is just something I need to get through.  I skipped most of the fear stuff last year.  I was too focused on the process of dealing with the cancer to deal with these kinds of thoughts and feelings. They just were not there. Now they are. 

I am also tired so much of the time.  But I don't want to cut down on my hours at work.  DH has been carrying the load mostly alone for too long. I need to be a real contributor to the household.  

ktym

Renrel, hugs.  I go through spats of time when recurrence worries plague me, and times I'm OK.  Right now OK, but know next month when its time for scans again I'll be not so good.  I'm struggling with helping pick up the load again too, DH getting a little tired.  My Onc helped me with the sleep issues.  I was amazed at how much my lack of sleep was hurting me.  I'm doing melatonin at night taking an ambien when I really need it.  I also found not looking at the computer, taking any phone calls, etc, letting myself relax and read for a couple of hours beforehand really helped.  That may not be realistic with a young one at home however. Come join us on the motivation thread.  We are all about encouraging each other to sneak some exercise in each day.  Its not done anything for my weight, but it has helped me keep moving which is something.

PLUTZ

Hi Ladies. I am so thankful just to be healthy after this last year. I have gained 10lbs from the 23 that I lost during chemo. It has been a year since I was in the hospital for a week. I don't ever want to go through that ever again. My neoropathy is gone so there is hope for all of you that still have it. I still have a toenail that is black and hasn't fallen off. My hair looks like bozo the clown after I wash it. Its so wavy but still too short to go in and have it trimmed. I use a straightner. My legs still bother me , especially when i go to bed. They get very achy and my hot flashes are worst at night. Other than that, I'm doing great! lol Take care and have a great week.

jillyG

Hello Jewels!  I am very excited today, tomorrow we are headed out to Jamaica for 7 nights.  It's our 10 year wedding anniversary so my husband sprung this trip on me a few weeks ago.  Just the 2 of us, grandma has the kids!  We're staying at the Riu in Ocho Rios which I heard is nice.  I shelled out $100 for a new mastectomy bathing suit, which bugs me because my reconstruction is right around the corner in June and I was hoping to avoid buying one).  Note to bathing suit manufacturers - 34 year olds get breast cancer too!  All the suits looked like they would be fantastic on an 80 year old though lol.  I ended up with a tankini with a leopard print top.  It'll be fine.  Anyway, I'll let you know how it was when I return!  Phylllis, I remember when you were in the hospital for a week, that does not seem like a year ago....wow, time really is moving forward for the jewels. 

ktym

Plutz, so happy this year is so much better.

JillyG, Have a great time, you sure have this coming to you!

Bev56

Happy spring everyone! I still check in here periodically. It's like coming back to old friends.

Holtbolt-sorry to hear about your Mom. I hope all goes well for her (and you) as you both go through this again. I'm glad to hear you are doing well after your surgery.

Jess- I hope all went well with your surgery too. Sending you get better wishes and hugs.

We started raking our yard and cleaning up the flower beds. I love the smell of spring!

I have culy hair that I love but my hairdresser said I am going to lose the curls. I am so disappointed because I finally have nice hair that I get compliments on. I was hoping I would get something good out of the chemo!

I was just at my hairdressers last week and she told me she found a lump in her breast 1 year ago and the doctor told her not to worry about it -it was a fibrocystic mass. Well 1 year later her breast was deformed by the mass and she is undergoing chemo now and then radiaition. Needless to say she is not going back to that doctor again. They could have at least checked her in 3 months.

Take care everyone and enjoy spring!!

jrgolomb

Jilly---You have the best vacations.  I hope you have a wonderful, romantic, groovy, happenin time!

JJS-  I am 9 days out from my exchange and I am still sore.  When can I start exercising again?  UGH!

Renrel

I just got Rieki 2 attunement today.  That means I can now do distance Reiki.  Let me know if any of you would like me to send you some nice healing energy.  I would love to get some practice and see how well it works. 

 It has been a very busy weekend.  Yesterday was spent cooking for the passover seder, with a brief walk to a neighborhood garage sale where we snagged some useful stuff for $25.  Today was all day reiki training and now more cooking.  I really want to go to sleep.  Tomorrow I work a little more than half a day and then head home for more cooking and cleaning and setting up.  We are only having 4 guests but I still have to cook enough for an army.  Its a tradition.  It also will provide food to eat for the rest of the week. 

Next month I see my PS again for a check up and we are supposed to discuss nipples.  Any one have anything so say on the subject?  

kt57

Hi Jewels:  good to see some familiar friends dropping in.  I had my 6 month mammo and exam last week.  I met the radiologist who specializes on breast imaging who is watching all my studies.  Very nice woman,,, she personally talked to me about my NORMAL MAMMOGRAM !!  Very reassuring,,,,,, at least until I saw the breast surgeon.  I have a lumpy area in my left breast - I have felt it since last Fall at which point she called it normal scar tissue.  I've lost some weight and thus some breast fat, so it is really apparent.   She recommended an ultrasound and "we'll go from there"  and then talked about core needle biopsies and making sure it wasn;t something else, and if it is fine, then see me in 6 months, unless it bothers me, then we could take it out...well needless to say, my rational brain stopped hearing anything past "core needle biopsy"... and went straight to recurrence, chemo, surgery,,,,

Good news is , they could do the ultrasound later that same day, and it was done by the same breast specialist radiologist -- It is a seroma... a fluid filled cyst-like pocket.  She said sometimes they resorb, sometimes they never go away as radiated tissue is more fibrotic.  She also said it hasn't changed since my MRI in Sept.   She assured me it wouldn't obscure a cancer recurrence.  So I guess we will watch it... I am not crazy about surgery on the radiated tissue.

I have to say, my reaction of near panic took me by surprize.  In my head I knew this was likely nothing, but it took a while to get myself to a calm state and convince myself not to worry until I had something to worry about,   Then I was emotionally drained for two days.    Guess I am not a resilient as I once was.....

So, it seems for a few weeks every sixth months for the rest of my life, I will need to deal with the anxiety of surveillance -- wonder if there are any refills left on the ativan from the chemo days,,LOL! 

Overall, I feel good, a few aches and hot flashes..all manageable. 

I hope you are all well.

Renrel

 Kathy - I get you on the unexpected reaction to survailance.  I am doing OK but I find my self more worried about not living a good long life this year than I was last year.  I think it does get easier though.  And it helps that I was told to expect these feelings and that it is normal to have them even it it takes a year or longer for them to surface. And I think most doctors would have no problem with giving you a presciption for a few adivan to take during the week before your check up.   They get how nerve wracking it can be.  And anyone who made it through chemo deserves to have a few "good" drugs.;

I had a crazy weekend.  DH was sick with a stomach bug Thursday night into Friday.  I worked full days Thursday and almost full day on Friday (I had to get DS off to school since DH was sick).  Saturday I cooked all day for my seder.  Sunday I was in Reiki training all day and came home to do more cooking.  Monday I worked a 3/4 day and then went home to cook, clean and set a festival meal table.  It was our first seder in our new home and the first we have thrown in many years.  We had to buy new haggadas because we have no idea where the olds are.  We had 4 guests, none of whom were Jewish, which made for a strange seder.  I love having non-jew at a seder to share my culture but when only two people at the table really know what is going on and one needs to jump up now and then to get food going, it makes for a very different experience.  I did love seeing DS playing with his friend who was one of our guest.  It reminded my of seders when I was a child and playing with my sisters and cousins at my grandmothers home.  I even have a two paintings and a bar from her home in my dining room.  When the seder was over and guest had left I did a sort of review and felt that every thing I cooked was good but nothing was great.  I found myself making excuses to myself about how it was hard given working full time and the busy weekend.  It took me a day to realize what I had actually accomplished.  While this was not my best seder by far, it was not something a chemo impared person could have even had the energy to plan, let along carry out.  And thats who I was last year when friends graciously invited us to there home.  (I invited them this year but they were already planning to go out of town.).  I have come a long way. 

I am sort of getting used to curly hair.  I think I am getting due for a cut and style but I really don't know how to judge it.  I never had hair that grew up instead of down before.  

ktym

Renrel, had to chuckle at that, hair that grows up instead of down.  Kind of like that upside down tomatoe plant advertised on TV (I notice these things since the chemopause tamoxifen hot flash insomnia started). 

 

jrgolomb

Renrel- I so thoroughly love how you embrace seder.  My father had a father who was Christian and a mother who had a Jewish upbringing, so he had quite a balancing act as he grew up.  As I read about what you experience with people who don't know about the customs, I am reminded of the many times I visited the church where my father preached and the synagogue where I was told to quietly observe.  So I suppose I continued the balancing actas I grew up as well.  Thank you for sharing.

Renrel

I just read an article on the CNN site that really moved me.  A woman in California decided to do a 39+ stand up paddle over shark infested ocean to inspire her best friend to keep fighting her breast cancer, and to raise money for two bc organizations.  She prayed at 4am in the morning for g-d to show them his beauty, creation and nature.  Then for 2 hours during her 9 hour journey a whale kept her company and even blew bubbles at her.  Both she and the whale are miracles that help me to see the meaning of life and love in this world.

ladyjane54

Happy Easter to all you jewels that celebrate.  Just got back from a spring break week in Savannah, Georgia and Charleston, South Carolina for just the girls.  We had a great time and I could not stop smiling all week.  Some of you will remember this time last year I was soooooooooo sick.  Two weeks of unexplained fever at home and than 8 days in the hospital with pneumonia.  Aches, pains, depression, etc. etc.  What a difference a year makes!!!  I read post regularly and I am grateful to those of you who are keeping in touch.  Sorry I am not better at it, but life is busy and I am NOT complaining.  Hope you are all feeling well and as appreciative as I am for my health. Love you all.

ktym

Happy Easter to you ladyjane, and Happy Anniversary of not being in the hospital!

Renrel

Hey all, my Dad is in the hospital. He had some internal bleeding that they have not found the reason for as of yet.  They did find an small ulcer but I guess the don't think that explains the amount of blood loss.  They ruled out his heart (he had an attack many years back) but then decided to do more test today and I have not spoken to him since this morning.  Any good thoughts would be appreciated. 

Next week I go in to talk nipples with my PS.  Any suggestions on questions or concerns I should raise with her?  

DS lost his two front bottom teeth.  The first just before Passover started and the second today, the last day of Passover. He is very excited. 

ktym

Renrel,  doesn't having those teeth start to fall out make them look so much older overnight?  What a bittersweet time.  I will definitely keep your Dad in my thoughts today.  Hugs to you

Renrel

My Dad is having a study done tomorrow to try and induce a arythmic heatbeat. If they can then they will install a defribulator.  If not then I guess they  just move forward on the testing to figure out the source of the bleeding.  None of the doctors will touch him till they figure out if the heart is a problem.  Looks like he will be in the hospital a while longer. He is not complaining but he is getting annoyed with being stuck in bed, not being allowed to get up out of bed himself, being stuck inside on a gorgous golf day. And if he had the defribulator installed than our plans to celebrate mom Mom's 70th b-day next month at a resort will have to be postponed.  At least the resort is giving us an extension on the cancelation date to get a refund.  Oh, and I found out today that a family friend a few years my senior has esphogean (sp) cancer.  I don't know the extent of it yet.  Sigh.  At least it was a lovely day out today and my Gi Gong class went well.  count the blessings not the set backs. 

ktym

Sending good thoughts your way and thinking of your Dad Renrel

jrgolomb

Hello everyone.  I hope all is well for everyone this Sunday.  It has been rainy for most of the last week, but today the sun is shining and the weather is a bit warmer. 

Renrel--Let us know how your dad is.

Renrel

My Dad has the defribulator put in and is now home recovering.  He is in some pain still but doing well.  I guess I have a small idea what he feels like major surgury in the chest area, no raising the arms, no heavy lifting, don't move to much until things are healed because they  may move out of place, and something not part of you implanted into/onto your chest.  Very differnent, but strangely similiar.

We had a busy weekend.  There was a house tour in my neighborhood Saturday, raising money for Haiti. We raised over $800.  Then I went out to dinner with some friends to celebrate someone's birthday in the evenings.  Today I did the first major food shopping  since Passover, attended a gardening class being given by a neighbor to raise money for the neighborhood association (He is a professional landscaper or something - colleged degreed in botany and all that and he put in a community garden last summer which is where we are learning.) and then we went to a friends house for dinner. I need to go put the grocery that were not in need of refrigeration away and maybe clean a bit since book club comes to my house this Thursday and everything is a mess.  

PLUTZ

  Hi ladies. I'm glad everyone is doing well. Renrel- I will be praying for your dad to recover. Today I am fasting for 24 hrs for my colonoscopy tomorrow. I am hungry! Liquids, chicken broth, orange jello and this nasty stuff I have to drink tonight. ugh. Other than that, things are going well. Had a checkup last week. went well. Not getting much sleep. Hot flashes and insomnia just don't mix. I'm about due to get my first haircut. It looks really bad. It sticks out everywhere and it is curly just like some of you said yours is too. I don't like messing with hair but I have to straighten it every time I wash it. Well going to heat up some broth for my lunch. Have a great day and I will let all of you know how my procedure went.

Renrel

Plutz_ would you believe that colonscopy was a major topic at the b-day dinner?  The poor b-day girl was on low residue diet for her first colonscopy on her b-day.  Who thinks when their at their 25th birthday and 25 years later this would be concidered acceptable b-day dinner converstation? LOL.  Good luck with the test.  My DH had his first this year as did this friend, other than the prep neither had an problems.  And the prep is just annoying not a problem. 

Just talked to DH and if we can get a babysitter we are going to go see Young Frankinstien the Musical next week.  I can't remember the last time we went to see a live show.  I hope it is good.  We can get half price tickets, so that was the reasoning for this show.