Denise Neish

Last Friday I went up to Huntsman for another echocardiogram, and it showed that my ejection fractions was at about 54-55% (it’s  not super exact).  This was good enough for me to get back on Herceptin, although my doctor was hesitant for me to take more Herceptin.  She feels that my heart has sustained SOME permanent damage from all the chemo and from Herceptin, and that I should probably just be done with it.

The full course is usually for a year, and I am a few months shy of that, but many doctors feel that a full year is not needed to receive the full benefits from Herceptin.  We made an agreement that I would receive Herceptin 4 more times.  The first time was last Friday, and I will have three more treatments three weeks apart.  After that I will be done.  I will also get another echo on my heart before the third treatment to make sure my heart is holding up okay for the last two treatments.

I don’t like the idea of doing something that is causing some damage to my heart, but I know it is a very effective drug for me, and cancer is the biggest danger for me at this point, so I will continue with Herceptin a little while longer.  This has been something we (Branden, Dr. “B”, my cardiologist, and I) have given a lot of thought to.

It’s scary to me, because every time I take Herceptin I actually feel pains in my heart over the next week or two, and that kind of freaks me out.  I feel that my heart is not as strong as it was before I started all of this, and I just want to be the same as I was before all of this.  But I am just trying to finish this battle with cancer once and for all.  I don’t want it to come back, and so I am doing everything I can.

Monday I will have my PET scan.  I will get the results 2 or 3 days later.

One year ago today my life changed.  I was diagnosed with breast cancer.  3 weeks later I was told that I had very little chance of surviving five years, and that my cancer was “incurable”.

Since that time I have had 4 surgeries, 16 rounds of chemo, and 38 radiation treatments.  I have been hospitalized for a total of about a month during this past year.  I became bald, had horrible mouth sores and infections in my mouth and throat, was unable to eat for about 8 weeks straight, dropped 20 pounds and gained it back, vomited a few times, was unable to get out of bed several times, was not allowed to touch my children for a few weeks, experienced fatigue and nausea, lost feeling in my fingers and toes, and have taken an obscene amount of drugs.  I can’t even count how many times I have had blood drawn, and I have had several tests on my heart and PET scans to check for cancer.

After all of this, I feel healthy and have had one doctor tell me that I may even be “cured”.  If nothing else, it appears I am in some type of a remission.  I am so grateful to my Heavenly Father for allowing me to live and raise my children and be with Branden.

During this past year I have often been sad, scared, or just worried about my life and about my family.  I have tested my beliefs in my desire to feel peace.  I know that my prayers have been heard.  I have felt comforted many times and I feel peace.  I can tell you that I was not alone.  I just want my friends and family to all know that you are never alone in this life.  I hope to live a long mortal life, but I am comforted to know that death is like a door to another room of existence.

I attached a powerful talk by a prophet of God, (President Thomas S. Monson) that means a lot to me.  No matter what you believe, I am praying that many of you will watch it.  It talks about our purpose in life, and what happens after our mortal death.  It is about 19 minutes long.  Please watch it with an open mind.  I absolutely believe it.

Anything that is good, true, and brings joy and peace has to be from God.  He is the source of all good, and I know He loves you and me.  I love you all and thank you for your love and prayers for me and my family this past year.

One thing that I wasn’t going to write about, (but decided that I will), is that I had another surgery about two weeks after my hysterectomy.  That was stage 1 of my reconstructive surgery.  It was unclear if the surgeon could get the job done in one surgery or not because of scar tissue, and tight tissue from radiation.  I really kind of got my heart set on being done quickly with the one surgery and just healing at the same time as I was healing from the other surgery.  I just wanted to be done, and start running more and getting ready for my race in June.  BUT, it didn’t work out that way.

I won’t go into all the details, but I have to have a follow up surgery in about a month from now.  And in the meantime, I have actually been way more sore than I thought I would be from a surgery that has absolutely nothing to do with my health, just with putting my body back together.  I definitely underestimated the reconstructive surgery!

On another note, I went up to Huntsman on Friday for my Herceptin.  First I had a mugascan, which I have had several times over the past year, to see how my heart is handling the drug.  Herceptin is hard on the heart, just like Adriamycin was.  I had assumed that my ejection fraction in my heart would improve as I got further away from chemo.  It had gotten up to 55%, and I assumed it would only get better from there, but then it went down to 51% the time before last.  I did another mugascan on Friday, and then met with my doctor.  We talked about how long I would do Herceptin, and she said that I could stay on it for longer than a year if my heart was handling it well.  We didn’t have the results yet from my muga.

Then I went down to the infusion room and waited for my Herceptin.  Fortunately the lab took a long time getting it to me, because then Dr. “B” came down to the infusion room personally (which she never does) and told me that I was not going to be allowed to receive Herceptin for a while.  She said, “We just got the results from your mugascan, my dear, and it is 42%.”

I was so surprised!  That is really bad!  She told me that she was taking me off Herceptin for at least nine weeks, and then we would do another mugascan at that point.  She told me that if I felt dizzy or couldn’t catch my breath, then I should call them immediately.  My face was turning red as she spoke because I felt so scared.  I have been feeling so tired lately, and now I know why.  I got Zometa, the bone strengthening drug, and then went home.

After I talked to Branden about it he looked up some stuff that made me feel a lot better.  My heart should bounce back pretty well since I am not taking Herceptin now.  It definitely should not do any permanent damage, so I just need to be off it until my heart is stronger.  Herceptin is a great drug for fighting cancer, but I may not even have any more cancer in me at this point, and most people don’t take it longer than a year.  So, I want to be able to continue taking it, but I don’t want to ruin my heart in the process!  I will just have to wait and see what happens with my next mugascan.  In the meantime, the good news is that I won’t be going up to Huntsman for 9 weeks!  =)

So, I will have one more surgery in a month, and then hopefully I will have time to get in shape for the half marathon I signed up for.  I really have had a hard time running at all lately, and have mostly just been walking, so I don’t know if I will have enough time to get feeling peppy and be able to run 13 miles by June.  I am going to plan on doing it, and try my best to get some running in, but if it isn’t the best for my health, of course, I won’t do it.  I think there is a good chance I’ll be able to do it though.

I will have my next PET scan at the beginning of May.

We have been getting some really nice weather lately, and I have just been so excited to be running, and done with surgeries, and feeling great.  I know it will come, but I am feeling a little impatient now that I am almost done.  Patience.  That’s a hard one!!

I am doing really well right now and look forward to being able to run in about 5 weeks.  I was told today that I have a “healthy glow”.  I was so happy to realize how healthy I feel right now that I almost started to cry!

 I have been writing a lot of my experiences from this past year, and am going to continue to write all I can while it is still fresh in my mind.  I have learned so much from these experiences.  It has been kind of emotional for me to write about all of this though, but I feel like it’s something I need to do before I will feel like I can really move on from all of this.

It really is so strange and wonderful to be done with major treatment.  I will continue to update occasionally, especially when I get PET scans, which will be about every 3 months for a while.

My port is out!!  I am so happy to have it out.  I have a big scar there now, of course, but at least I don’t have a huge hard lump there anymore!!

Wednesday I met with the surgeon who will do my hysterectomy and oopherectomy in 2 weeks.  My surgery will be on Feb. 15th.

During the surgery, they will also remove my port, which will be great!!  For those of you who don’t know, a port is a little hard rubber thing installed in my chest through which I received chemo, had blood drawn, got blood transfusions, got IVs when I needed them, etc..  It is great when you are getting stuck by needles all the time, and it protects your veins when you are having toxins pumped in through your body (chemo), but since I am done with chemo, and not getting my blood drawn nearly as I used to, I decided I wanted that thing out!!  It really hurts sometimes because it is attached to muscle, and it is right where my baby likes to put her head when she snuggles with me, so she is always bumping her head on it!!  Plus it just looks really weird.  I always have to be careful to not wear a neckline on my shirt that will show it because it would probably scare people!!

So when my port is removed I will have to have an IV to receive Herceptin every 3 weeks, and it always has to be in my left arm, since my lymph nodes were removed from under my right arm.  My left arm will probably look like I am a heroin addict or something, but I will just be so glad to not have my port anymore!!

Today I went up to Salt Lake to Huntsman for Herceptin.  I also had a mugascan to check my heart.  Last time my heart had improved and was up to 55%.  I assumed that it would be even better this time.  I originally started out at 64% before I started chemo, and I have been running almost every day recently, so I expected it to improve.  Weirdly, it went down to 51%, so I have to have another mugascan in 6 weeks to make sure it isn’t continuing to go down.

I can stay on Herceptin as long as my heart is strong.  The longest I can stay on it is 2 years, and I would like to be able to continue receiving it, so I need my heart to handle it well.  My doctor said that it is possible the radiation to my spine effected my heart a little bit, and so hopefully it will improve now that I am done with radiation.

Whew!!  My body has been through a lot the last several months, but I am almost done with the major part of my treatment.  I am really excited to get this surgery done, and to recover from it and be done getting treated so regularly!!

I signed up for a 1/2 marathon at the end of June and I am looking forward to getting ready for it!

Hallelujah for a new year!!!  No offense to 2011, but I was not sorry at all to see it go!  In fact, over the past several weeks, every time I thought about the year ending, and a new year beginning, I got this excited feeling inside.  I am sooooo ready for a new year!  2012 is going to be much better than 2011!!!

Radiation is going fine.  I am feeling great!  I continue to run most days and I am very careful to eat a healthy diet.  Today I am going to get my treatment here, and then try to bust down to American Fork for radiation, and then go home and get our family ready to head down to St. George.  We haven’t visited my sister there for a long time, and it is warmer down there too, so it will be a nice getaway for the weekend.  My kids get so excited to see their cousins down there too!

So, I have been feeling kind of like a tough girl lately.  I think it comes with feeling good, and nearing the end of major treatment.  It’s funny, because when I run on the treadmill in the mornings, before I go to radiation, if I hear a song on the radio that is something about surviving or being tough or winning or something like that, I get this adrenaline rush like when I used to compete in track in college! I am feeling like I am winning a major battle right now.  I know it’s not because of me, but it makes me feel invigorated.  I don’t know how to explain how I feel, but it’s like I am coming out of a long dark tunnel and can finally see the light at the end.

Last April I had to tell my family over the phone about my Stage 4 diagnosis.  I couldn’t hardly talk as I called each person in my immediate family.  I told them quickly that it had spread to my bones and that the doctors had told me I was “incurable”.  I told them that I didn’t want to talk to anyone for a few days.  We were moving to San Diego, and I needed to focus on getting our family moved and making it out here to Utah.

The next day we had people in our house and we were loading up the moving truck and saying goodbye to friends.  I tried to act normal, but a few times I had to go outside around the corner to cry for a minute before I could go back to the whirlwind of people in our house.  In the middle of all of this I got a 3 word text message from my little brother.  All it said was, “kick it’s a$$”.  I laughed for a moment, and I appreciated the message, but I didn’t really feel like that was possible at the time.

Now I am realizing that that is what is happening.  I am “kicking it’s a–“!!  I feel kind of like the doctors lied to me when they told me I couldn’t get better.  That’s not what they intended to do, but they never really told me that I had any hope.  I think that I could never come to terms with that because I always had a feeling deep down that I was going to get better!!

I will get another PET scan 3 months after I complete radiation, and I will continue to get scanned every 3 months for a while, then every 6 months at some point.  I don’t know what will happen in the future, but right now I feel great, and I am so grateful every day for a healthy body.  I am so thankful for love and support from family and friends, and I am thankful to my Heavenly Father for carrying me when I didn’t think I could take another step!!  Life is good, and I am moving forward!

Branden skipped work to come with me for my PET scan.  I have been looking forward to getting my PET scan and feeling optimistic about it, but I did feel kind of emotional yesterday as I thought about it and prayed fervently for a good result.

When we got up to the hospital I drank the nasty drink and got injected with the radioactive dye and sat in a dark quiet room for 75 minutes so that my brain wouldn’t metabolize the glucose as much.  Then I got strapped into the big PET scan machine and laid perfectly still for about 30 minutes, occasionally following orders to hold my breath and breath normally.  When it was done I went and met Branden in the waiting room.  It would take a couple of hours for the test results, and we had about 2 hours to kill until I could meet with Doctor “B” (which was next on my long agenda of appointments for the day).  So we went  out of the hospital and got some food and went shopping for a little bit and then went back to the hospital.

Dr. “B” came in and got right to the point because she knew that all we wanted was to know what my results were.  She said that she was very pleased.  There was no sign of any new tumors anywhere, and everything looked good in the breast and lymph node areas.

There were originally two spots on my spine that looked malignant, and one of those spots now looks clear of cancer.  The other spot on my spine and the spot on my left hip look better than before, but there is still something there.  They call it a “lesion” on the bone, and it could be either cancer or healing tissue in the bone where the cancer was.  The amount of metabolic activity in those areas has decreased from my first PET scan, but it is in a gray area and is impossible for them to really know if it is cancer or not.

At first I didn’t know how to take this news because I think Branden and I both thought we would get a more definitive answer about the cancer than this.  But Dr. “B” explained it this way:  Radiation actually works better than chemotherapy for killing cancer.  (I didn’t know this before today!)  But they can’t radiate your whole body because there are too many things in there that would get damaged from it, so they will only radiate very specific areas.  That’s why they usually do chemo first because it is a systemic treatment for the whole body, and can get some stray cancer cells that may be in random places in my body.

So now that we have done chemo and have found out that it has worked in reducing the cancer in my body, now we can radiate those specific areas where cancer was detected.  Then, since radiation is so effective, we have a good chance of getting rid of the cancer in those areas.  So, it is definitely good news!

As for the rest of my body, we will not know if there is cancer anywhere until some time has passed.  We will continue to do PET scans every three months for a while, and then every six months, and if anything shows up or is growing, then we will deal with it at that time.  If not, then after a few years we will know that we probably got it all.  I will just have to get used to not knowing all the answers for a while, but for now, my PET scan results are good, and I am still feeling very optimistic about beating this cancer!

After my appointment with Dr. “B” I went to the infusion room and got Herceptin (which I will continue to get every three weeks until at least next summer), and I got Zometa (a bone strengthener that I will get every six weeks.)  I also got my prescription filled for Tamoxafin, which is an estrogen blocker, and I took my first one tonight.  I wonder how that will make me feel?!

After all of that, we had to race down to American Fork hospital so that I could get my radiation for today.  Then we went back to get our kids and picked up a pizza.  We had a fun evening playing with the kids in the basement until bedtime.  I always miss the kids when I am away from them all day.  Whew!  I am glad today is over!!  Thank you everyone for all your prayers!!

Yesterday I entered a 5K.  That is 3.1 miles for those of you who aren’t runners.  I got so happy when I went the night before to pick up my packet and race number.  My sister-in-law and her friend did the race too.

I am slow right now due to treatment, but based on my treadmill running I thought I would be doing well to be under 29 minutes.  Mostly I wanted to run the whole thing and not walk any of it.  When the race started I just felt so happy to be in a race again!  I let the crowd of people carry me along, but I didn’t want to go too fast because I didn’t want to have to walk.  I didn’t see the one mile mark, but I did see the two mile mark, and my time was 16:19.  I was so surprised that I was running 8:10 mile pace.

During the third mile I was trying to catch a little boy who was beating me, but he started pulling away and I had to give up on him!  I was really tired with about half a mile to go, and had to slow down a little bit, but I got the the 3 mile mark at 23:58.  I couldn’t believe I was keeping an 8 minute mile pace!  Nothing to brag about normally, but I have not been able to run even 9 minute miles on my treadmill for the whole time, so I was very happy with it.  I finished in 24:44.  Much better than I expected.  I really needed that!!  It made me feel so good to feel strong, and to feel like a runner again!!  I am excited to get done with ALL of my treatment and to get a clean bill of health and get ready to actually compete in some races.

My PET scan is Tuesday.  I will start my hormone therapy then too.  I will write again after my PET scan results.

I was definitely mentally prepared to be done on Friday, but there was a moment of uncertainty after my blood work came back and my white blood cell count was lower than their standards.  My granulocite number was also slightly low.  I had to wait for approval from my doctor to go ahead and receive my last dose of chemo.  I was relieved when the approval came, because I would have been disappointed to have to wait another week to be done.  So now I have to be extra careful this week to not get sick, because my wbc count is low, and I received chemo, so now it is probably going to go even lower.

When I was almost done, the nurses in the infusion room came around and sang me a little song about being done with chemo.  It was very sweet!  They also gave me a blanket as a parting gift.  This is what they do for all patients when it is their last day of chemo.  I have really been treated well at Huntsman, and have made good friends with some of the nurses there.  I will still go up every 3 weeks for Herceptin until next August, so I will still see them, but I had a spring in my step as I left the hospital on Friday knowing that I was done with Taxol!

My PET scan is scheduled for November 29th.  I will also meet with the radiologist next week to determine the plan for radiation.  But in the meantime I have about 3 weeks to recover from chemo and to not be treated.

I am so thankful to be done with chemo and to be feeling well!!  I signed up for a 5K Turkey Trot on Thanksgiving, and am so excited to be getting ready for a race!  It will be my goal just to run the whole thing.  I am very slow when I run right now, but it just makes me happy to think about doing a race again.  I will run with a friend and with my sister-in-law.  I am looking forward to doing things that make me feel like myself again!!

I really love all of you who have been reading my blog and encouraging me through all of this.  Thank you so much!  I am looking forward to getting my PET scan and seeing how the chemo has worked.  Because it was looking good halfway through the summer, I anticipate a good result, but how good, I do not know.  I also want this scan to be clearer, and it should be because we will wait a little longer to get all of the drugs out of my body that can interfere with the clarity of the image.  I will write again after I get my PET scan results on the 29th.

Yay for no more chemo!!!!  =)