Tests

I went to get my mammogram, U/S on my right breast and my bone density on Saturday.  Mammogram and U/S are clear.  I am waiting for the results on the bone density from my oncologist, but there shouldn't be any issues.

I had a pelvic U/S last week.  My pelvic U/S only showed a small cyst, which was OK, per my gynecologist.

My right eye seems blurry today.  Feh on that.  Hopefully, my eyes will get better.

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.

Fatty Liver?

Well the good thing is that I don't have liver cancer, but I have a Fatty Liver.  They are not sure what they are going to do about it now.  I have to repeat my blood test in a few weeks to see if it resolves or gets higher.

In the meantime, I called my Gastroenterologist to see what he has to say and I am going to do some more research into it.  I did see one thing that Tamoxifen can cause this, but I don't think the oncologist will take me off it yet.

Oncologist Update

I had my 4 month check up at the oncologist on Wednesday and a check up with my endocrinologist as well.  My endocrinologist was happy with my progress and my weight loss.  She was going to take blood for some tests, but I told her that the oncologist will be taking some later.  She told me to have the other order piggy backed on to the oncologist’s testing.  Hooray…only have to have blood drawn once.  I don’t have to go back to see her for 6 months.

I saw the oncologist.  She was also happy with my progress.  My symptoms from the Tamoxifen have decreased.  It is nice not having a hot flash every day.  She wants me to see my GYN to have a ultrasound done on my uterus, etc, since I am on the Tamoxifen.  There is an increase risk of ovarian and uterine cancer on the drug.  I don’t have to go back for 6 months.

I went down to get my blood drawn.  I have bad problems with my veins to begin with.  I looked for my favorite phlebotomist, but she was not there.  It was already late in the day.  I didn’t think that there would be a problem since they are usually good there.  I was very wrong.  The lady stuck me once and that vein collapsed.  She started digging and blood started dripping out.  I asked her to stick me in another vein.  Same thing happens again…she says I am a bleeder.  No…bad phlebotomist.  She finally sticks me a third time to finish off the rest of the viles.  I am white as a ghost and ready to pass out.  They had to bring Rob in to get me.  At least the supervisor saw what happened and asked if I usually have problems with my veins.  I told her yes, but usually I don’t have a problem here.  She told to ask for her if the other good tech was not available.

I got a phone call on Thursday from the nurse at the oncologist.  They wanted me to get an ultrasound on my liver because I have elevated liver enzymes.  Great…another test.  She asked me about some meds I was on. . Hopefully, it is just because of some medication and not something more serious.  I went this morning to have the ultrasound done at NYU.  The tech told me that my doctor will get the results in a few days.  She didn’t tell me if the test went well or not.  Hopefully, the results will come back quickly.

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.

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.

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.

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.

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.

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.

Big Couple of Days

So where to start? This past weekend I did a lot. Saturday, I was able to do our errands with Rob and Sean. We went to Macy's, Target and Babies r us. I drove home from Macy's with Rob in the car for the first time. Then in the afternoon, I felt comfortable enough to drive myself to a much needed pedicure. It was nice to get out by myself. On Sunday, we visited Rob's mom, who I haven't seen since before the surgery. Rob had been to see her every weekend as usual.

Yesterday, I went into Manhattan by express bus by myself. I decided to walk from 3rd and 34th to 1st and 32nd to NYU hospital. It was far and tiring, but I did it. I had an appointment with my plastic surgeon since we had decided on doing the chemo. I needed to discuss with him our game plan. Since my oncologist wanted to try to start chemo by 8 weeks post-op, my plastic surgeon is going to get the ball rolling to maybe get me into surgery to close my belly next week. I am currently 6 weeks post-op today. He likes how the wound vac is helping my belly heal. He cleaned up my belly again. He said there is enough skin for closure, but his ideal situation is to let it heal naturally, but he doesn't want to interfere with starting chemo. The surgery would be out patient surgery and he said he would stitches that he would have to remove in 10 days. These stitches can keep the wound open slightly to help heal properly. The whole problem is having an open wound and doing chemo. Your body does not heal easily when doing chemo. My plastic surgeon is going to coordinate dates with my oncologist. He is still happy with how my breast is healing and the rest of the reconstruction will be done after my chemo is finished.

We then went to the NYU cancer center to visit one of Rob's friends that was getting chemo. She is getting the chemo treatment that I would be getting. I toured the center and it seems nice. You have a. choice of bed or recliner chair. Each area has a TV, phone and wireless access. She explained to me the entire procedure that she is doing. It takes about 5 hours total and I would have to go back the next day for a blood booster shot called neulesta. It was helpful talking to her and seeing the center.

We then went down one flight to let the oncologist know our plans. She gave me a few prescriptions that I would need and said that we will start either the week of February 15th or 22nd.

Decision

I had my two oncology appointments on Wednesday. My first appointment was at Beth Israel Hospital. The doctor was nice. He suggested tamoxifen for five years and an ovarian suppressor for two years. He did not suggest chemo for me and said that I would have to look hard to find another doctor in NYC that would. He said that with the biology of my tumor, that ovarian suppression would take care of any roaming cells. He wasn't concerned that I am 39, the size of the tumor or that I had isolated tumor cells in one lymph node. We all left the appointment feeling pretty good thinking I would not need chemo.

We went to see the second oncologist at NYU. She was very nice as well. She also gave me the same treatment option as the other oncologist of tamoxifen and an ovarian suppression. She also gave me another option as well of chemo and tamoxifen. She said I am in a very grey area with my cancer and there is no absolute answer for my treatment, even with an onco score of 12. She recommended chemo with me because I am so young, I had a large 3.5cm tumor and isolated tumor cells in a lymph node. It was interesting to see the different reasoning with the same characteristics of the cancer. I also didn't have to go far to find a doctor to want to give me chemo.

We decided on the chemo option. We want to be aggressive. If I was 60, the decision would definitely be different, but I am young.

I am going to the plastic surgeon on Monday to discuss with him how much longer I need the wound vac on for, when i can get closed up and when I can start chemo. I am now 5 1/2 weeks post-op and the oncologist wants to start chemo by week 8. She said by 12 weeks, chemo wouldn't be recommended because it is too many weeks post-op and wouldn't be of any help. I am also going to have the plastic surgeon and oncologist discuss the best time for me to start the chemo.

Oncologists

Sorry that I am not going into any explanations yet,but I have to work through this decision. I saw 2 oncologists yesterday and one said chemo and another did not. I am in a very grey area as the one who suggested chemo also gave me the same as the other doctor who did not suggest it. I will post more information soon and update the blog.

Appointment with the Plastic Surgeon

My appointment went well with the plastic surgeon. He decided to hook me up to the wound vac to help speed healing. He did give me a choice not to have it, but now the belly wound is covered and the visiting nurse only has to come 3 times a week instead of every day with the open wound. If I didn't get the wound vac, he still wasn't sewing me up today. He wants to keep the device on me for a few weeks and then sew me up in the operating room. It is hurting my stomach a little bit, but the doctor said it should stop hurting by tomorrow.

How long he keeps me hooked up depends on what happens at the oncologist appointments next week. He will tailor my treatment depending on what and when the oncologist wants to do. If I do need chemo, they won't do it with an open belly wound. So if either oncologist wants to start soon, I won't have to wait and he will sew me up sooner if needed.

Again he was happy with how my new breast is healing. He is taking off most of my restrictions. He advised that my belly will tell me when I am doing something I shouldn't. I am glad I can start driving again.

The wound vac is an interesting device. A piece of foam is placed into the incision/wound, a large piece of tape covers that with the tubing coming out of the tape. It is hooked up to the machine which is the size of a hardcover book and weighs a few pounds. I can clamp it off myself so I can shower. It does make some noise, not too loud though, but it sounds like it is farting. I can hear Sean saying "Mommy you farted". At least it won't scare him, but make him laugh.

Now we wait until Wednesday for the oncology appointments.

Appointments and Such

I am still waiting for an appointment time for tomorrow's appointment for the plastic surgeon. Tomorrow is not his regular appointment day and he is going to fit me in between surgeries. Rob is taking the day off to take me in. I am hoping he will stitch me up, but there is still a chance that I would be hooked up to the wound vac.

I am feeling OK today. Just tired as usual. At least the pain in my side is getting better and I can also lift my left arm over my head. My breast is healing nicely and is taking shape. You can't even see a difference though clothing.

I changed my oncology appointment to next week because of the plastic surgeon. I am still trying to get an appointment with another oncologist at Beth Israel. They have to call me back. I might do a third opinion with Sloan Kettering in Plainview, but I am going to wait until I get the appointment at Beth Israel.

Oncologist

I made an appointment with an oncologist at NYU Cancer Center for next Thursday. I have to wait for the oncatype DX results, so that appointment might be changed. I tried to make another one at Beth Israel, but they don't take my insurance right now. They are under negotiations for the new year. My friend is looking into seeing if the doctor will see me anyway. I am also looking into another doctor on the island.

The nurse said my belly is starting to look good. Slow, but it is healing. I can't wait for my appointment on Friday.