Amy's Cancer Story

Today ended up being the day that chemo started.  Dr. Ellis also told me that the results from my Pet-CT scan were all clear.  Thank God. What a blessing.   I was a very nervous about that one.  He went over the drugs that I will need to take and explained everything.  He said that everything looks good to start.  My hubby brought his laptop and worked from there so he could take care of me.

I was tickled pink to learn more about my schedule.  Last time I had heavy meds for four days in a row.  This time I go one day every three weeks.  My mouth dropped.  I could not believe it.  That is heaven for a chemo schedule.  There still we be a lot of possible side effects.  I think my ears are even rings a bit now, as it will effect my hearing.

I went and sat down in a small cubical in the chemo area.  There are about 5-6 cubicles and each cubicle has anywhere from 2-5 recliners in the along with a TV.  So along came my nurse who’s name is Anne.  She took care of me many times when I was there before, so it was great to see her.  She is the only nurse that is still there from 3 1/2 years ago.

The first thing they had to do was hook the needle up to my port and take some blood and get labs on them.  They check platelet levels and other things.  Before you get your chemo you get pre-meds.  Pre-meds can vary depending on the chemo.  I got an antibiotic and an allergy med, Benadryl and maybe one other durg.  Last time, I had Amend in pill form before chemo for allergy prevention.  Sometimes chemo can cause you can break out in hives as well as other types of reactions.

Well it was kind of embarrassing being in the room with my after they gave me the benadryl.   It took me for a loop.  I got dizzy and felt very strange.  You should have been there.  I was talking to the girl next to me who was being treated also.  I was trying to talk to her and my hubby said I was slurring my words.  I was spelling all kind of words incorrectly into whatever I was doing on the computer.    The nurse said it was normal .  . . geeze.   It was like I was drunk or something.  He and I both had our computers out and I was planning on getting some real estate work done.  He gently took  my laptop from me because of my crazy temporary condition.  I did not argue and went to sleep for an hour.  During that time they gave me two drugs  Taxotere and Cytoxan.    Then it was time to go and we got some lunch on the way home.

I always meet interesting people while I am sitting there.  The girl next to me also had breast cancer.  She was only a couple of years younger than me.  Her story is much worse.  Her cancer had spread to tumors on her liver, kidneys and into her bones.  Her pelvis broke because her bones got so weak.  The break was the thing that got her in to get check out.  She was very cheery considering her circumstances.

She had been living in Ohio, grew up in the Pittsburgh area and was thinking of moving.  She told me her brother asked her where she wanted to live and get treated so she picked Pittsburgh.  He rented her a loft in the city with enough room for her parents to come and stay with her while she is being treated.  Her brother highly recommended Dr. Ellis.  She also has to be in a wheel chair because the doctors said her bones were too weak to hold her and some could be at danger of breaking.   I hope that I get to chat with her again.  She said she will be there every Wednesday.  She said Dr.  Ellis thinks she has a pretty good chance of getting cured.  That is great considering how long she went with out being diagnosed.

I did show a house this morning and my manager helped me out immensely by writing up the offer on it for me while I was at chemo.  I feel a little strange so far today, but it is not as bad as last time.   Tomorrow I have to run back the office for a shot in my arm called Neulasta.  This shot will help my body fight infection.

Please have patience with me as I write these entries, as I am usually writing them at night while very tired.  So I know so you may see some humorous errors.  Thanks!  and thank you for your thoughts and prayers.

Good night.  🙂

“Well, take it easy. Get as much rest as you can. And hopefully this time you will go into complete remission with no reoccurances. From your pics I can see you have a strong and supportive family. They will take good care of you. I’ll check in on your blog from time to time to keep posted. What a great help you are providing others who are going through similar struggles. You are certainly a resiliant woman! ”

-Jennifer H

“I just wanted you to know that I have been reading your blog. You are truly an inspiration to me and I wish you all the best. I can’t imagine going through this once and here you are going through this yet again. I will keep praying for you and your family and I know that you will get through this. You are strong and you are fighter.

I will be keeping you in my thoughts.”

Fondly,   Michelle F

After, my chemo was completed the first time in July 2006, I went to the dentist to get my cleaning.  So to my disappointment, I had my first cavity.  I was shocked and kind of a little upset.  I always took very good care of my teeth.  But then I thought to myself, ” hey this really is not so bad.  I don’t have cancer anymore, I have my leg and this is just really nothing.”  Being in bed so much without my normal tooth care routine and the tough chemicals highly likely contributed to the cavity and maybe even the age thing.

So I got it filled right away and nothing was said again until last month when I had gotten a cleaning.  At that point, my cancer had not been confirmed.  I had gone to my dentist at his new office.  He had opened his own office after working at a large office with many dentists.  He found on my routine x-rays that the cavity he filled in the fall of 2006 had started to decay under the filling.  I could to not believe it.  I really know nothing about cavities and fillings so I did not know what to think.  After speaking to the dentist, he informed me that the place he used to work at used products that were not that high in quality.  He did a lot of research and does things totally different at his new office.  He uses the best and spends more time with the patient.  The service has been so much better.  He is able to focus more on the patient and he actually remembers what I do for a living when I come in now.

My oncologists’ office informed me that I should get the filling taken care of before going on chemo, or I could have a high risk of infection.  So lucky me, they got me in today.  After he was done, I queried the dentist more about why this happened.  It had only been three years.  Generally, a filling should not have to be replaced for 7 or 8 years.  I ask him how you would know if cheaper products were being used.  He basically said the major chains tend to have that kind of service and product.  I really had no idea and was happy to hear that this one should last 7-8 years.  It also matches my teeth this time.  You cannot even tell.

So basically if you ever have to go through chemo or if you have a friend or family member that is going through this, don’t neglect tooth care.  It will save you more headaches with what you already have to go through.  Unless you don’t mind.

. . . . And ladies don’t be passive about mammograms . . . Please . .  the in-home nurse who came to my house after surgery this month said his wife had breast cancer in her early 20’s.  I hope it would never happen to you, but you never know.  It is better to be safe than sorry.  For the people I know personally reading this, I do want you around.  It would break my heart to loose a friend.  Take care . . .



I have received several notes from brethren and friends around the country and have not had a chance to share them all but here is one from today from a girl from back home in NJ.

“Hi Amy, I spent a while reading your blogs last night after you sent your prayer request note out. I am sorry that you have already dealt with this cancer, and now are going through it again. I will be praying for you, and checking in on your blog spot, seeing how you do with it all. I pray that God will continue doing His good work in you, and that you will be able to stand up and fight this cancer. Praising God with you for the compassionate drs. and your loving family members who are standing by you now, too. I loved reading that your husband knows and loves your head minus the hair :0) Keep wearing those wigs with pride– one day it will all come back again!
Love, Amy”

With Chemo possibly starting this Wednesday, there are a number of days that I will have hair left on my head.  I had a friend snap a few photos this weekend.   The thing is at some point I am going to have to shave my head because it will be falling out like crazy, in clumps.  You find it in your bed, in your clothes, on the rugs, on the kitchen floor, in the car.  It gets everywhere.

Last time my hair started falling out pretty much two weeks after I started chemo.  My husband knew how upset I was about it, so as soon as it started falling out he set up an appointment for me to see a lady about wigs.  He also had read that if we had some satin sheets, it would not pull on my hair, therefore making it stay on my head longer.  So he ran out and got some for me.

So when we saw the wig lady named Pat, she was very understanding.  She deals with many cancer patients.  She also owns her own hair salon.  One thing I found out when I was there for the first time was, that there are people who have permanent alopecia.  She had photos in an album of people with no hair and with their wig.  You know kind of like before and after.  She had clients that were children that had never had hair in their life and had to wear a wig all through their childhood.  Can you imagine that?  For them it never grows back.  There were also woman who would just loose their hair and it never grew back.  Well the good thing about that is, you can change your style real easy as your budget allows.

So after she heard my story and heard how distraught I was, she suggested that she cut my hair to my shoulders (it was half way down my back).  She then would take the hair she cut off and use it to match my hair color to the wig that I picked out.  She said to come back Friday and would have it ready for me.  When I went back about 5 days later.  Half of my hair was gone.  She then shaved it off and fitted my wig.  It was a real hair wig and looked really nice.  She also had some synthetic hair pieces that were really cute so I was able to get two of those.

If I was not so upset about the whole ordeal, I may have been able to do something more generous.  I wish I had.  I am sure that I had enough hair to donate to “Locks of Love” before she had cut my hair the first time.  So this time I think I want to do that if it is actually long enough.  I am probably going to wait until the last minute again  in case some freak thing happens and “maybe it won’t really fall out” so why shave my head.  I wish.

Last time several people had suggested, I make a wig out of my own hair which really is a great idea.  Pat said that would cost at least $2000 and and a lot of hair.  Several heads of hair are needed to make a wig from real hair.  It was interesting to know that the real hair wigs are hand tied which is another reason they are more costly than synthetic.  They also look better and wear better.

I was very fortunate at that time.  My small church took up a  generous collection for our family.  It helped pay for this expense as well as several others.  It was a great blessing.  My husband had been unemployed for 8 months prior to that year so we were not in a good position for this trying time.

Everytime I have turned around God had provided for me.  Even if you are down to your last pennys it still works out.

Matthew 6:33,34

The genetic counselor agreed to see me on a very short notice.  She told me that we would go over family health history.  I told her that would be very easy since my parents are both only children (so I have not cousins and Aunts and Uncles).  We did go over some basic statistics on how women get breast cancer.  Some are reasons are from breast cancer genes that are inherited, some environmental, other genetic syndromes (known and unknown), and random events. She even said that a parent can carry the bad gene and never be effected by it and then pass it on to their children.

I had told her that my grandmother’s sister on my father’s side had died of breast cancer at 35 (in 1955).  She did not seem as concerned about that since it was not really a direct or close link to me.  The other thing that is unknown is that my mother’s father died of bone cancer in 1973.  He was misdiagnosed.  At first they thought it was arthritis in his back, and then after it was too late they found out what was really going on.  The doctors had no idea where it started from.  So it is not known what caused his primary cancer and how it could be effecting me or anyone in my family.  Two of his three brothers died of colon cancer.  My doctor said that my bone cancer is not an inherited cancer it is most likely a genetic defect.

I wish I had had the opportunity to meet my great aunt but she past away well before my time.  I do remember my grandfather.  One thing that stands in my mind is when I had gone to visit his home on Long Island, NY.  While there, I had gone shopping at a Christmas store with my mom and grandma.  I found what I thought was the coolest rock in the parking lot and insisted on bringing it home.  When I had gotten home that evening, I remember telling my grandfather that I wanted to paint it.  We had to leave in the morning and would not have time to do it.  I was very disappointed.  When I had gotten up in the morning, my grandfather had gone to a lot of trouble to paint it for me.  It was sponged painted black and white and had red speckles all over.  Now how cool is that?  And I still have it.

The last time I saw him was another trip to NY not to much later in the year.  I had drawn him a picture of my hand and had it all folded up for him.  He was so sick in bed at home that he could not even open it and so I opened it for him.  He seemed to really like it.  It was the last time I saw him.  I wish he had been around longer to get to know him better.

Me sitting on my Grandpa’s lap.

Yesterday, was the day that my port was re-installed.  When I got the hospital, they took me in right away in the med unit.  Carol was the nurse who was assigned to me and I said, “Do you remember me? I am back again. :)”  She did and we chatted.  It is kind of scary when you get to know many of the people in the hospital since you have been a patient there so much.  It was the same with the testing, I know many of the technicians, if not their names, then at least their faces.

They got me ready to go up to the surgery room and I was a little nervous.  I told my husband that I am just really upset about loosing my hair again.  He said not too worry because he already knows I look great bald.  I really appreciate his words.  I still want my long hair though.

So by about 11:30 am they took me up to the surgery room.  The doctor who was putting the port in was the same one who took it out in November 2006.  He informed me that I would be getting a smart port this time.  He showed me the device before hand.  I said wow that is big.  I had never seen it last time.  But he informed me that it was actually smaler than the one I had before.  The device is called smart port because it can handle high intensity injections from the CT and MRI machines.  So if I need these tests again, they will not have to find a vain,  just pop it in my port.

I was more comfortable drug wise this time.  I was awake in what they call “twilight”.  Last time, I had to tell them that I needed more local pain killer and anesthesia.  This time they gave me plenty this time around.  The doctor also said I should not have as much pain because he installed it differently then the doctor I had before.  This time they did not cut into my muscle.  It still hurts pretty good but I do think it was better this time around.

It was hard to get out of bed because my left side is still hurting and now my right side has pain.  Hopefully in a few days much of the pain will subside.

My hubby went with me.  I was starving so we got something to eat on the way home.

Due to the fact that I have had two cancers by 40 and breast cancer by 40 were two reasons to have my doctors suggest genetic counseling.  On December 18th, I went to Hillman Cancer Center in Pittsburgh to talk with a counselor and have testing which is done by taking some blood.   They tested me for BRAC1 and BRAC2 genes, which are breast cancer genes.  They also tested me for Li-Fraumenie Syndrome (LFS) which is very rare.

During Christmas week, I got a call from Darci at Hillman that I was negative for BRAC1 and BRAC2.  Today she called and told me that I was negative for part of the LFS test.  There is another result for LFS that I will have next week.  The doctors think it will most likely be negative.  If these tests were positive, I would be treated differently and my children would also need testing.  So far so good.

Today, I had a hearing test to see how much damage was done from the prior chemo.  There was some damage done but the doc said it was not too bad.  Now they have a base line to see if more damage is occurring with the next chemo treatments.

Until  tomorrow . . . I am falling asleep.

My mother-in-law graciously agreed to go with me on the day’s adventures as a designated driver.  I was nervous about the PET CT Scan that I had scheduled for today.   We headed to Fox Chapel to see my surgeon, Dr. Goldstein,  for surgery follow up at 8:20 am.  She said everything looked great and as far as she was concerned with surgery healing, that I could start chemo.  She gave me some exercises for my arm to get it moving back to normal from the lymph node removal in my arm pit.  It does not feel so great but should get better with time.  She gave me a big hug and told me she loved me.

Next we headed down the turnpike to Monroeville.  We got there in plenty of time.  The UPMC facility there is beautiful.   You would think I was checking out a house.  The decor and colors were amazing, very comforting.  You felt like you were at home.  The room that the PET CT scan was in was all hardwood – very impressive for a medical facility.

I had to get all the metal off the scanning areas of my body and then head to a holding area with recliners.  Everyone was very nice.  The nurse gave me an IV.  I made it clear, as I always do, not to let me see anything or I will highly likely pass out.  You would think I would be past that by now with all the stuff I have had to go through.   Then I had to drink a tall glass of some kind of orange drink.  Then another 30 min later I had to drink another.  Then after a hour of sitting there I was ready to go across the hall for my scan.

The scan was done from the top of my forehead to about my knees.  I was injected with radio active dye and something else for these tests.   The dye for the CT makes you feel like you are burning up for a minute or so and then goes away.  The next scan was about 24 minutes and I had to stay very still.

The orange drink that I had before the test, was full of a lot of sugar – yuck.  The sugar will cling to any cancer cells in the body and the scan would pick them up.  Hopefully it does not find any.   While I was waiting for the test, there was no one around to talk to, and I started to panic a little.  I was thinking about the results of the test.  Sometimes that is the worst part – waiting for the results – hoping there is nothing more than I know that I have to deal with.

On the way home we got some lunch at Quizno’s.  My mother-in-law does more than just take me to appointments.  She’s wonderful.  She would do anything for you.

Also, after speaking to Dr. Ellis on Wednesday, he did say this whole process would be easy for me after what I had been through.  He said I would probably be able to work as many people do.  Although, chemo effects everyone differently. Last time I was in bed a lot, to say the least.   The chemo that I had in 2006 was very aggressive and the new treatment is less aggressive.  Also, I already have my surgery behind me instead of in the middle of 8 rounds of treatments and physical therapy (which I am still doing twice a week on a maintenance level).

So if anyone needs any real estate help, I am still available and have a great bunch of agents there to back me up.

I have gotten several notes of encouragement and kinds words from brethren, friends, and classmates.  Here is one from a Geneva College classmate:

“Amy, Just saw your blog posting. I am SO sorry that you have to go through all of this. Please know you will be in my prayers. I did my residency at St. Margaret’s and Dr. Ellis is truly one of the most compassionate and caring oncologists I have met. I am so glad to know you are under his care. Thank you (and Chris) for the blog site. You will bless so many by your openness and vulnerability. I pray God will reward you with strength, peace and joy and of course complete healing. Blessings, Margy”

Here is one from a friend Christine from High School (Cherry Hill East 1988):

“Amy,I was so sorry to hear about you having to go through Chemo again, but at the same time, I felt comfort in knowing that you have so many people praying for you. I look forward to reading about your journey. Being inspired by your story and your faith in Him. Your gift is the inspiration that you give to others through your faith in these difficult times. I will keep you in my prayers.
You are amazing and you will get through this!
Holding you in a special place in my heart,
Christine”