Celebration

I had a wonderful party celebrating my 5 years cancer free!  I had lots of my friends and family there to celebrate.

My husband gave me a pink tiara, a 5 year button and a pink bow necklace.

I gave everyone a pink ribbon pin for Breast Cancer.

Here I am in my pink dress.

Tamoxifen

My second opinion ophthalmologist called me yesterday.  She said that she had reviewed the tests from the other ophthalmologist and wants me to stop the Tamoxifen immediately.  I informed her that I had already stopped it 1 1/2 weeks ago.  She wants me to come back for an eye recheck in 2-4 months and not 4-6 weeks.  So, we are now looking for a recheck date of January.

The Tamoxifen side affects are manageable.  I have a bad headache, stomach ache and seem to be thirsty all the time.  Hopefully, these will reduce as I am off the medication  longer.

The Eyes Have It

So, it has been a while since I posted.  Everything was going along pretty well.  I was looking forward to my 5 year mark of being cancer free on December 22.  

I went the oncologist in September and was given a clean bill of health.  I was looking forward to stopping my Tamoxifen in April 2015, which would be the 5 year mark for the drug.  I was told that the new time frame is 10 years.  I was not happy about staying on it, but my oncologist said that it is the new recommendation for premenopausal women.  It does also increase your risk of uterine cancer, but the oncologist stated that it is easier to treat uterine cancer than breast.  She can just take my uterus out.Real simple, right?  Not liking the odds, but she said we can discuss it further at my next appointment.

Now the big issue right now is my eyes.  I recently went to get new glasses, since my old ones broke.  I have been having issues seeing at night and street signs are distorted.  The optometrist checked my eyes and saw an issue with the macular area in the back of my eyes.  He wanted me to see a retina specialist.

I went to see the retina specialist on Friday, October 3^rd.  He said I had Type II Macular telangiectasia which about 4% of the population has.  He said I should not worry about it and that it should not cause any issues.  I made an appointment for 6 months to follow up.

On Monday, October 6^th at 8am in the morning, the retina specialist calls me.  He stated that he confirmed with some colleagues in Europe.  They thought I actually have a cyst and he wanted me to immediately stop my Tamoxifen as he thought that medication was causing the eye issues.  I informed him that he will need to speak to my oncologist for me to make any changes.

I received a phone call from the oncologist on Tuesday.  She had been playing phone tag with the retina specialist and wanted to know, from me, what had transpired.  I gave her the run down.  She wanted me to get a second opinion. 

I went for a second opinion on Tuesday, October 21^st, with a retina specialist at NYU. She confirmed the cyst, but also said that I have some cloudiness to my lenses with indicates the starting of cataracts.  She recommended stopping the Tamoxifen for 4-6 weeks and come back for another scan to see if my eye sight will improve.  The retina specialist stated that I didn’t have to stop immediately, but she wanted to confer with my oncologist before I did.

I called my oncologist on Friday, October 24^th.  I spoke with her assistant and advised her that I wanted to know when I could stop the Tamoxifen.  I received a call back later that day and was informed that the oncologist still wants to see the final report from the NYU retina specialist before making her decision.

That afternoon, I received a call from my oncologist’s assistant.  The oncologist wanted to see me to discuss my options.  I was confused as I didn’t think there were other options.  I told her that I did not have time to come in for her to tell him to just stop Tamoxifen.  She stated that the oncologist will either want to put me on Lupron which will put me into menopause and then take a postmenopausal medication or take out my ovaries.  I said you forgot the third option…Do Nothing!  The assistant didn’t like that answer and said they do not recommend that.  It would be on me if the cancer came back.  She then said she will speak to the oncologist.

On Monday, October 27^th, the assistant called back and stated that I could stop the Tamoxifen.  I can wait several weeks and we can discuss coming in then. 

Between the 10 years staying on the meds originally and wanting to put me into menopause, I am not very happy with this oncologist right now.  There has to be other options.  I have put one of my friends on the case.  She is a Breast Cancer Patient Advocate.  She is looking for a new oncologist for me and into other options.

On Tuesday, October, 28^th, I stopped the Tamoxifen.  I am hoping my eyesight improves.  It is hard to drive at night and street signs and text are distorted. Withdrawal has not been bad so far.  I am just having headaches and stomach pain.

So much for an uneventful 5 year mark, I will keep everyone updated.

Tests, Tests and More Tests

Sorry I haven't updated lately.  A lot has been going on.  I saw my breast surgeon for my check up and everything was good with that.  I had my repeat blood work for the liver function and my levels are back down to normal.  Hooray.

I did finally get a uterine U/S per the request of my Oncologist and of course, they found something.  I have a small fibroid at the top of my uterus that is about 1 cm.  That isn't too much to worry about my gynecologist said, but they also found a 4 1/2 cm hemorrhagic ovarian cyst on my right side.  Right now the cyst is bleeding into itself and not out.  I have to go back in 6 weeks for another U/S to see if it shrinks.  My guess if it doesn't, it mean surgery.  Hopefully, it will shrink. 

The Oncologist also wants me to get a colonoscopy, so I have that scheduled for May 13.

My MIL is also not doing well right now.  She can no longer swallow from her Parkinsons.  It is really hard to see her this way.  She is only on pain meds and she hasn't eaten since Tuesday.

Appointments Next Week

I have 2 appointments next week with the endocrinologist and the oncologist.  I am also still deciding if I am getting the Zometa IV for Calcium.  It has both good and bad side effects.  I still have to do a little more research.

Happy 1 Year Cancer Free!

One year ago today I had my mastectomy.  So I am now 1 year cancer free.  Everything is healed but I still need my finishing work done.  I will probably do it sometime next year.  I still have some more weight to lose.  I have been losing about 1 pound a month.  I am down about 10 lbs now.  It's a good start.

Sean is home from daycare.  He has been throwing up.  MIL has been in the hospital for the last few days.  Rob is going to see her today.  Hopefully she will be out by Christmas.  I know it sucked last year when I was in the hospital for Christmas.  What a day already.

I hope everyone has a Happy Holiday and a Happy New Year!

Oncologist and Endocrinologist

I had my appointments with the oncologist and endocrinologist on Wednesday.  I took the day off of work because I had to go into Manhattan for the appointments.  At least I got to meet Rob for lunch.

The endocrinologist appointment was first.  She was glad to hear that I have lost some weight.  I now need to up my metformin from 1000mg to 2000 in the next month.  We will see how that goes.  I go back and see her in 3 months.

The oncology appointment went OK as well.  She checked me out.  We discuss my many side-effects from all my meds including Tamoxifen.  I am not happy with it, but I have no choice really.  The hot flashes aren't that bad, but if the do get bad the Dr. said that there are meds they can give me.  She also is concerned about my headaches in the morning and my blurry vision.  I think it is a combination of my metformin and the celexa (for my IBS) that I have just started taking.  But since I am a cancer patient she has to rule out anything else, so she wants me to have another MRI of my head/brain. (Insert joke here)  Last one I had was in June when I was having numbness in my left hand, but it was before these recent issues.  She said she will give me 2 weeks to see if they resolve before I have to get it.  She also discussed with me about a IV called Zometa, for calcium.  It is suppose lower reoccurrence of breast cancer by 30%, so we will probably do it next time we see her in 4 months.  The IV is every 6 months and will help with bone loss.

Have a Happy Thanksgiving.

Turning 40

One year ago today, I got a biopsy on my left breast on my 39^th birthday.  The reason I got it done that day?  The day before, on October 28^th, I had my mammogram and ultrasound.  I wanted to get the biopsy done as soon as possible.  “Next day appointment…you have an opening. Great!”  I never really thought about it as being my birthday, more of the fact of getting it done to finding out quickly.  It took 4 days to get the results and on November 2^nd, I found out it was positive for cancer.

Today is my 40^th birthday.  My chemo is done.  My hair is growing back.  I am working again.  I am still on the Tamoxifen for 4 more years.  I still have some finishing work to do on the reconstruction.  Other than that, I am alive and happy.  I am a Survivor.  The cancer will be just a blimp on the radar after a while.  Yes, I will have to go to the oncologist for the rest of my life, but that is a small price to pay for my life: to watch my son grow up, to grow old with my husband, to be alive.

This month is Breast Cancer Awareness Month.   This month, people will wear pink and wear ribbons.  There will be walks, talks, articles and reports about Breast Cancer.  Women and men will do their self-exams.  Yes, men get it too.  But you have to continue to be aware.  Keep doing your self-exams.  I did them periodically.  I felt something in July 2009.  I had my annual checkup with my general practitioner.  He examined me, but ruled it out as the muscle being a little firmer.  That is what I thought too.  I saw him a few more times that month for high white blood count.  Something was going on with me, but we figured it was just some infection because my numbers finally went down.  I forgot about my breast issue until I went in to see my gynecologist 3 months later on October 13.  By that time, it had broken through the walls of the milk duct and you could feel a pea-sized mass.  It wasn’t there in July.  I was nervous, but she was optimistic.  She told me to get the mammogram within the next few weeks.  I was 38 years old.

I was lucky.  I was “only” Stage IIa ductal and infiltrating carcinoma with microscopic traces in one of the lymph nodes.  If I hadn’t seen my gynecologist when I did, it could have spread further.  Since I was sporadic at best about my self-exams, it could have been a lot worse.  I am now more diligent about my self-exams, even though I get one from one of my many doctors every 2-3 months now.

This is not how I imagined being 40, but who imagines having cancer?  On the plus side, I get to try out new hairdos as my hair grows back.  I got a tummy tuck from the reconstruction surgery.  Hello flat stomach!  I also belong to a group that no one wants to be a member of, but has some fabulous people in it.

So, Happy Birthday to me!  I am proud to be 40.  I am happy that I made it to 40.  I am happy that I am alive and healthy.  I am happy to have a wonderful husband, son and family.  I could not have gotten through this year without their support and help.  Here’s to 40!

Onocologist

I saw the oncologist on Wednesday.  Sean had to go with me since she changed my appointment from next week and he was on vacation.  He was very good.  I spoke to the oncologist about the side effects from the tamoxifen, bone density and still being pre-menopausal. She wants me to take a bone density IV every 6 months since the tamoxifen decreases it.  They only problem with the drug is problems healing from dental work.  She wants me to see the dentist before I start.  I see her again in 3 months and we can discuss about it then.  She also talked about taking a drug like lupron to stop my periods, since my cancer is estrogen based.  I am still not happy with that idea.  That is why I did the chemo.  I will talk to her about that at my next appointment as well.  She did state that the bone density meds has a 30% less chance of recurrence for post menopausal women.  I have some things to decide.

Doctor Appointments

I had 2 doctor appointments this week.  I saw the plastic surgeon and he officially said that my belly wound is now closed.  Finally after 8 months.  I can go swimming now.  He liked how the scar looked, even though it is really bad.  He advised me to wait a while for the scar to soften and for me to lose weight before he will fix it.  I probably won't do anything until next year anyway.  I don't have to go back to see him until I am ready for the surgery.

I saw the breast surgeon yesterday.  She was very happy with how the reconstructed breast looks.  She advised me not to get a reduction on the good one to match the reconstructed one.  She too, advised me to lose weight and see what happens.  She doesn't recommend anything be done to the good one, even though the plastic surgeon thought it would be ok.  She said that the scars could cause issues checking for cancer later.  She said she would give me a prescription for a prosthesis, but I will wait and see.

So, I will lose weight, exercise and wait and see what happens.  I got back and see her in 8 months, even though she wanted to see me in 6...no appointments available.  Also I have to get a mammogram in November.  I only need it on the right side, since the left is reconstructed.

Just When You Thought It Was Safe to Back in the Water

I figured I needed to update everyone with what was going on.  I have seen the plastic surgeon, oncologist and a neurologist since the last time I posted.

I am starting to feel better and getting stronger everyday.  I am still tired walking for a long time, but it is getting easier.  My hair is growing in.  It is about a 1/4 inch now and looks dark.  We will see what it will look like when it grows in a little more.

I saw the plastic surgeon to discuss my additional surgeries.  I will need to get to a weight that will make me happy first before he can continue with any of the additional surgeries.  Also my belly will have to be closed fully before he can fix up the scar on my stomach.  Since I have finished chemo, my stomach wound has begun healing quickly.  It should be closed up within a few months.  The scar looks like I got cut open with a can opener, but the surgeon assures me that he can fix it.  I also need to finish my surgery on my breasts.  I need to get a reduction on the good one and he needs to fix and finish the reconstructed one.  He is also going to do some liposuction into the area above the reconstructed breast to fill in the area left hollow by the mastectomy.  I joked with him to take it from my thighs, but he said that he will only need a shot glass full to fill in the area.

The oncologist saw me a few weeks ago.  I will have to see her every 3 months for the first year.  She started me on the breast cancer drug Tamoxifen.  The side effects suck, but they keep telling me that it will get better.  She also gave me a diuretic to help take down the swelling in my legs from the chemo drugs.  She also sent me for a MRI on my brain and cervical spine for the numbness in my left hand.  After those results came in, the oncologist wanted me to see a neurologist.  I also received a bone scan, since the Tamoxifen can cause osteoporosis. I have to take 1500mg of calcium a day to help with that.

I saw the neurologist yesterday.  Most of my MRI was fine, the brain scan did show sinusitis and for one area on my cervical spine that was a little brighter than the rest of it.  She advised that it could be normal for me, but she wanted to send me for more tests.  I have 2 more MRIs next Thursday on the rest of my spine.  I am also getting a spinal tap to check for cancer cells in the spinal fluid, just as a precaution.  She advised that the after the spinal tap, the MRI could light up, so she needs to get one beforehand. This would be why I am getting a MRI before the spinal tap so she can have a baseline.

On the Mend

I saw the plastic surgeon nurse on Monday.  She said my belly is looking good.  She did advise me not to swim this summer while the wound is open, but she said that as the chemo leaves my body, the healing will begin to be quicker. 

I had a little scab fall off on the other side of the belly and noticed that there is still a stitch in it that they forgot.  I spoke to the nurse and she wanted me to come in yesterday when I found it, but I said I was coming in on Monday to see them.  She was hesitant, but said ok and to watch it.

I have been feeling better each day.  I am still a little weak and tired, but doing better.  I think I might even start driving the boys in the morning next week, so I have the car during the day, if I want it.

Done with Chemo...On to the Next Chapter

I had my last chemo treatment on Monday.  I am very glad to be over with this chapter of the treatment.  I still have a long recovery, but things will be different now.  My oncologist said that I will be feeling about 60% better in 6-8 weeks and the rest could take 6 months to a year.  I go back and see her in a month to start the tamoxifen for 5 years.  This will keep my risk of recurrence of the breast cancer down.

I got into the room and had a different nurse, but I had a bed room which I liked better.  She was able to get the IV in on the first try.  I was very happy about that.  She wasn't a very friendly one, but I didn't care as it was my last time.  I got my foot massage and relaxed.  Rob & Debbie came by for lunch to see me and Mom.  Debbie told me to ring the bell when I was done with my treatment and I made sure to do so, along with saying a poem.  I got some hugs from the nurses and it was nice to say that I hope never to see them again.

The poem reads: Ring this bell, three times well.  It's toll will clearly say, My treatments done, This course has run and Now I'm on my way!

Everyone kept asking me what I was going to do to celebrate.  I honestly wasn't even thinking about it.  I just was happy to be done.  My Mom said she will bring me some nice chocolate pastries from the french bakery today.  I think a nice celebration will be done when I can actually taste my food again.

After we left chemo, I went to the plastic surgeon.  My belly was cleaned and we quickly discussed my continuing surgeries.  He would like me to get to a weight that I am happy with before he does any major part of surgery, but I can have some quick fixes if needed.  We will discuss more in a few weeks.

I am still continuing with this blog, since I am not done with everything yet, but I want to thank everyone for their support so far.  It has been really great to know that I have so many people that care about me.  I have a few goals to get to...can't wait to get my taste buds back, the hair I am not so concerned about, my new normal in life would be nice, my strength back and my 40th birthday in October. 

By the way, yesterday, I got out of the house and walked all the way to shopping center for the first time by myself.  It was nice to be able to do.  Sean will be happy when I can finally run after him and go down the slide in the playground.  I will be too.

Here Comes the Last Time

Tomorrow is the last chemo treatment...4 of 4.  Hooray! I am so happy.  Hopefully, my taste buds will come back before my hair which is expected to grow back in 6-8 weeks after the final treatment.  Also,  I am hoping that my belly will start healing up faster and maybe be able to go swimming by the end of the summer.  I don't know yet when the plastic surgeon will do the rest of the surgeries.  I can wait on that.

Mom is coming with me tomorrow.  We are taking the bus in and Rob is driving in earlier to be at work and to be able to drive me home later.  I get my bloods done, a visit with the oncologist, chemo and then over the NYU hospital to see the nurse practitioner to check out my belly.

Rob made my yummy dinner for me tonight of scallops, green beans and port wine reduction.  I also got my Godiva chocolates yesterday.  My treat for each chemo.  After this, back to watching what I eat.

Getting there

I saw the nurse practitioner on Monday and she likes how my belly is healing.  Last time, they gave me new packing to use in the wound and it seems to be making the opening heal better.  It is definitely a slow process.  Also she said there isn't enough skin to actually close the opening, so we will have to wait for it to close naturally.  I hope after the chemo is done that it will speed up a bit.


Sean said again that he likes my scratchy head.  I asked him if he wanted a haircut like mommy's and he said no.  He just like rubbing my head.

I took him into the city yesterday to Rob's office to take you child to work day and he had a good time.  He got to ride on the bus and the LIRR.  He colored all day with Mommy and had pizza and ice-cream.  He liked it.  Needless to say I am tired and sore today.  My last treatment is on Monday.  Hooray!!

Almost Done

It's been a rough week and a half since the last chemo.  I am having problems dealing with it this time.  It started on chemo day.  My regular nurse practitioner was not available and they gave me someone new.  Then when I got into chemo and my regular chemo nurse was not available and I was not happy with the nurse I was given.  First, they didn't have a bed-type room with a window, only a closed one and I get very claustrophobic.  My regular nurse holds one for me even though they are not suppose to.  Since I got there so late from the first appointment, nothing was available with a window, so I opted for a chair with a window.  The chairs are very uncomfortable when you still have a hole in your stomach and a bad back.  The chairs are only closed by a curtain and it was very noisy.  The lady across from me had very loud visitors.  It was hard to relax.  I know this might seem petty, but when you expect certain things and it is already a difficult time, it doesn't help.

So finally, I get into the chair and the nurse tries to put the iv in and misses.  I go ouch and he says did that hurt?  HUH????  I said please get someone else.  You only get one chance.  I have bad veins.  I guess I insulted him.  He got someone else and they got it in after running my arm under hot water.  The rest of the treatment was ok.

After my treatment, I went to the plastic surgeon to see the nurse practitioner again as usual.  Rob picked me and mom up and we went home.

Overall, the side effects weren't strong, but I lost my taste buds longer this time.  I am still having problems tasting after a week and a half. I am tired with stomach upset, but overall not too bad.  Having Sean around helps since he gets me out of the house in the evening to play with him.  He still likes kissing my head saying it is scratchy.

Monday, I ran into the plastic surgeon before my appointment with the nurse practitioner. He is happy with what he has heard from her.  He would like my belly to heal on it's own.  I am ok with that.  I have about a 2 inch hole on the left.  The rest of the incision is closed and looks like I was opened with a rusty can opener.  I was thinking today that I probably wouldn't able to go swimming this summer with it open.

Almost done...

Round 3 of 4

Next round of chemo is tomorrow.  I will be more than half way done.  Not looking forward to the side effects again, but it is good to know I can handle this.  Just my mom is going with me this time, since Sean is still home from daycare for the holidays.  Rob is going to stay home with him.  Mom and I will take the bus in and Rob will pick us up when I am I done.


Some of my eyelashes starting falling out this week and my eyebrows are thinning. I have stubble on my head, which keeps falling out too.  I can't wait for my hair to start to grow back.  It will be nice.  I also realized that I am burning easier from the sun.  That is expected.  I am fair to begin with and now it is worse.  I have to be careful.

I will see the plastic surgeon again after my chemo.  The opening in my belly is getting smaller.  My belly scar looks like I got opened by a can opener.  I can't wait for the surgeon to fix it when I am done with the chemo.

BRCA Gene Testing

This is good news. I had this test done and the insurance paid for it. It was very expensive. This will help bring down cost. It also took 4-6 weeks to get. Maybe if other labs have it, it won't take as long.

From the NY Times:
http://www.nytimes.com/2010/03/31/business/31gene.html?hp

On Monday, Mr. Sweet, a United States district judge in Manhattan, ruled that parts of patents held by Myriad Genetics covering two breast cancer genes, known as BRCA1 and BRCA2, were invalid.

Myriad analyzes those genes in an expensive test that predicts whether a woman is at a high risk of getting breast or ovarian cancer. The plaintiffs in the case, which included various medical groups and the American Civil Liberties Union, said the patents on DNA were illegal and impeded access to the testing.

Follow the Chemo Road

Overall it was a good day, even for having chemo.  We dropped Sean off at daycare and drove into the city.  We got there at 8:45am.  I got my blood drawn, then it was upstairs for my appointment with the oncologist. The nurse practitioner gave me the run though of the day and possible side effects after.  The oncologist examined me and it was off to chemo.  They have 2 choices of rooms. You can either have a dentist like chair or a hospital bed.  I chose the hospital bed because the room had a door instead of a curtain.  Also I think it was more comfortable with my belly still stitched.  My mom and Rob came with me.  It was nice to have the company. They also have TV's in the room.  The nurses were extremely nice and helpful. 

My biggest fear of the day was get my IV in since I have such horrible veins and they can't use my good arm now because it is on the side of the mastectomy.  The nurse looked at my veins and decided that she needed to get someone else to do it.  I really appreciated that she didn't think she could get one on the first try, so she got someone else.  The other nurse got it on the first try.  Hooray.  They first give you another rundown of the day and side effects after.  They emphasize that I am not get to the point of throwing up and if I am nauseous, take my meds.  They do not want me throwing up at all.  The IV lasts about 3 hours.  I first get saline, steroids and benedryl to help with any allergic reactions.  I was given Cytoxan first and Taxotere second.  Overall, it was not bad at all.  I even got a foot massage by the roaming massage therapist.  We are able to order in lunch, so Rob didn't even have to leave to get us anything.  One of my friends was on her last treatment today, so we got to see her and she brought a chocolate cake to celebrate. Yummy. We are out by 2:30pm. 

Here are some pics from the treatment:

 

 Me and Seymour, my chemo pump

Me and Rob

After we left the Cancer Center, I had an appointment with the plastic surgeon.  He is very happy with my belly.  I did have 2 pinhole size opening on one side, so he took out 2 stitches, opened the area a bit and I have to put in this aquaseal stuff in everyday into the opening.  Icky, but not too bad.  I go back on Monday to hopefully get the other stitches out.  He is liking how the rest is healing.  We will see.  Hopefully, the chemo won't interfere too much with the healing.

I slept very well last night considering I only got 3 hours of sleep the night before.  I woke up this morning feeling good, until I took the steriods.  Headache and feeling hot and yucky.  But it is the only one I have to take today until my next treatment.  My belly has been ok as long as I keep eating and drinking.  Not too bad overall.  They advised me to eats lots and lots of protein.  It helps with the healing process.  The nurse advised that it is very unlikely I will lose weight, but actually gain.   Oh well, not the time to diet.

I went into the city at 12:30 to get my Neulasta shot at 2.  It is a blood booster.  The nurse showed me how to give it to myself in the thigh and the possible side effects of back pain and/or bone pain from the bone marrow growing.  Next time, I can do it at home on my own.  It is worth the $35 co-pay to do it at home.  I was back on a bus home at 2:30.  Very wet day to have to go into the city.

I think I am going to have something to drink and some green tea ice-cream and rest until the boys get home.

Thanks again for all the good thoughts and wishes yesterday.  It was nice to see all the posts on Facebook.

C-Day tomorrow

Tomorrow is chemo treatment 1of 4.  I started my meds today and they made me feel nauseous, so I have been snacking all day.  Rob is making a nice fish dinner for us tonight.  I get my sleeping pill and I will be out.

Rob and my Mom will be going with me for my first treatment.  I have my bag packed with snacks, blanket and things to keep me busy.  I get my blood drawn first, then I see the doctor and after that the chemo.  I also am seeing the plastic surgeon when I am done.

I would love any emails or you can call me on my cell phone tomorrow.  If you don't have my number it is on Facebook or you can email me for it.  Please send me all the good vibes and thoughts you have.