Happy New Year

New Year’s Eve is always a night for me to reflect, therefore, I feel compelled to write.  There have been quite a few years when I looked back and thought, “What a bad year this was, I hope next year is better.”  Oddly enough, on the New Year’s Eve of what should be considered the worst year of my life, I don’t have those feelings.  Yes, this was the most difficult challenge that I have had to face, but I did it and I did it well.  I learned so much about myself and I am proud of getting through it all.  When this all began, I never thought that I would look back at this year in such a positive way.  I have no regrets and as bizarre as it may seem, now I don’t even wish that this had never happened to me.  So many good things came out of this experience, and that makes it all okay.  I smile more, I feel stronger, I fear nothing, I say what I mean, I take nothing for granted, everything looks beautiful, and everything tastes great.

 

I don’t know what the new year will bring.  I hope for all good things, but what 2005 has given me is the knowledge that no matter what comes my way, I can handle it.  And just knowing that gives me such a sense of peace.  Not stressing over the little things in life is a big gift, so why shouldn’t I be happy? 

 

Happy New Year to everyone! 

First Day with the New Hair!

I did not plan to do it. Yesterday morning, when I was getting ready for Christmas dinner at my parent’s house, Steve came in the bathroom and said, “You really don’t have to wear the wig anymore.” I looked in the mirror and thought about it. My hair has grown in evenly, and you cannot see my scalp anymore. But it is very short. It’s kind of like a Caesar hair cut. So I called Andrea for a second opinion. She starting screaming, “Do it!” So I went out with no wig yesterday! It was so nice to have nothing on my head.

My family was happy and they thought I looked cute. My nephews, who are five and four years old, were never told that I lost my hair and wore a wig. So when they saw me, they said, “Aunt Jack got a hair cut!” Peter said that I looked like a boy name Jimmy in his class and Andrew said he liked it. They are too much. That night we went to my uncle’s house for dessert and surprised my whole family. They were very happy for me. My cousin Joey said that I look like a model with trendy hair. That was very sweet of him.

So now there’s no goingback at least with my family. How would I explain to my nephews that my hair grew back so quickly? So this may be the end of the wig. Everyone says that I shouldn’t wear it to work or anything. I think I’m going to take their advice. Another good thing!

Holiday Luncheon at my School

Yesterday was the last day of school before the Christmas break.  My principal invited me to the holiday luncheon.  I went so that I could see everyone before going back on the 3rd.  I had not seen anyone since the beginning of March, so I thought it would be nice to socialize with my friends without the kids around.

 

The whole ride there I was saying to myself, “You’re not going to cry!”  School was dismissing when I arrived and the first people I saw were my students from last year.  They were so happy to see me, and I started crying immediately!  So much for trying not to be emotional.  Their teacher said that when they heard I was coming back, they wanted to know if they get to go back to my class!  She is a friend of mine, and didn’t take it personally-ha-ha.

 

Everyone-teachers, aides, secretaries, custodians, bus drivers and their aides- were so happy to see me, and it was really great to be back.  Teachers who I had known for years who are survivors told me their stories.  People kept telling me that I look great.  And everyone kept telling me, “You’re home.”  And I really felt like I was home.  I teach in a great school and we really are like a family.  I won a poinsettia plant and the staff present from the principal and vice-principal was waiting with my name on it.  There were times when I wondered if people were forgetting me.  It was so wonderful to see that not only wasn’t I forgotten, but it was as if I never left. 

 

I met my substitute face-to-face for the first time.  She brought me to the classroom to show me around a bit.  It was strange because things were not exactly like I would arrange them.  But that is fine and I will make it my room again.  I felt bad because I could she that she will be sad to leave the kids. 

 

Everyone kept saying that they were praying so hard for me to get better and return and what a Christmas present this is.  It truly is the best present that I could ask for this year and I am so grateful for everyone who made it possible.

Merry Christmas to everyone!

Latest Update

Today, I had my appointments with the pulmonary doctor and my oncologist.  After the last appointment with the pulmonary doctor, my oncologist said he wanted to see me one more time before he gave me the paper work that I need to go back to work.  I repeated the pulmonary function test and it is stable.  That is good because I am on less prednisone now than I was for my last test.  The pulmonary doctor is happy with my progress and wants me to have another CT scan of the chest in February.  My oncologist is also very happy with my progress.  He has given me the official "green light" to go back to work on January 3rd!  So I am very happy.  He also would like me to have a CT scan of the chest, abdomen, and pelvis.  I am having the scan on February 25 and I will see him again on March 2.  That is the day I will also see the ENT doctor about the nodule on my thyroid.  My doctor says that even though it is most likely benign, the ENT might want to operate to remove it.  (He was just giving me the worst case scenario.)  Actually, if it should come to that, I don't care.  After all I have been through, what's another surgery?  It will be fine.  

I asked my doctor when am I considered to be in remission and what is the definition of remission.  He said that remission is when there is no more evidence of disease.  He could not say that I am in remission after the last scan because of the inflammation he saw.  But if all goes well after the scan in February, he will be able to say that I am in remission.  He also said to tell people, "My oncologist says that I am doing great!"   

So, this was the best Christmas present I could get.  I am very happy.  I hope everyone has a great Christmas and New Year!  Thank you, again for your prayers and support.  

New CT scan/PFT-Great News!

Yesterday I had a CT scan and today I had a pulmonary function test.  The pulmonary function test showed great improvement, and the CT scan showed that the infiltrations they saw in the last one have diminished.  I am so happy and relieved. I have a follow up visit with the pulmonary doctor and another pulmonary function test on December 20th to monitor my progress.  But she said that she does not need another CT scan.  I am being weaned off the prednisone (down the 30 mg the next 2 weeks, 20 the following 2 weeks, then I will decrease by 5 mg every 2 weeks after that).  She also said that she is fine with me going back to work after the Christmas break.  So, tomorrow I will talk to my oncologist about writing a letter so that I can return.  The best part is that I have been feeling so good.  Today I walked all over NY without getting out of breath at all.  That is more than any test can show. I still have to resolve the issue with the nodule on my thyroid, but no one seems too excited about that. This is great news, thanks again to everyone for your prayers and support. How did I celebrate?  With a frozen hot chocolate at Serendipity, of course!   Hair update-I am still wearing the wig, but I am a little bit past the crew cut length!  I have all my eye brows and lashes. 

Faith

Faith is an interesting thing.  Everyone knows that the two things you do not discuss with mixed company are religion and politics.  Last night, we were at a dinner party when religion came up (not by us-I swear!).  I mostly kept quiet because I was meeting these people for the first time, and when I get emotional, it is hard for me to find the words to express myself.  And faith can not be argued because people without it need cold hard facts.

There was only one man who had a problem with religion in general.  He kept bringing up why does God allow bad things to happen, and specifically mentioned cancer without knowing my situation.  I made a few polite comments but he had a negative answer for everything.  Later that evening, someone asked me how I was doing.  So I went on to tell everyone how things are progressing and that I am doing very well.  I saw him giving a friend of mine the what does she have? look" (trying unsuccessfully to be subtle).  So I announced to those who did not know that I was diagnosed with Hodgkin's lymphoma and just completed six months of chemotherapy.  I think this surprised him a bit to say the least.

I found it interesting that although he used cancer as an example of God's indifference toward man, he obviously was not directly affected by it.  You see, people who have been affected by it have a bond and will talk about it with each other.  People who have not experienced it (directly or indirectly) have a fear of even talking about it.  He was uncomfortable when I began to talk about my cancer experience.  If I could tell him something about faith, I would tell him not to worry about the cancer patients.  I cannot speak for everyone, but I have made many friends at Sloan of different faiths.  I have yet to meet someone who has lost faith, and never has anyone that I met questioned God's love for us all.  We pray for each other and give each other strength and encouragement.  So please do not use us as an example of why you do not have faith.

It's not something that you can understand unless you have lived it.  After getting through the initial shock of having cancer, I accepted this as part of God's plan for me.  Would I have raised almost $4,000 for the Leukemia & Lymphoma Society if this had never happened?  Maybe because of my illness, a child with leukemia will have medicine that his or her family could not afford.  Isn't that such a cool thing?  Yes, in a perfect world everyone would have everything they need.  But we are not perfect and that's life.  Is that man doing something to make a difference instead of blaming God?

Everything is a matter of perception.  We can choose to see the ugly side of life or the beautiful side.  I don't like to preach to people because I have not walked in anyone else's shoes either.  But I do hope that by choosing to see everything as a gift, even the hard stuff, that I can influence people to choose to see the beauty in this world and to turn bad situations into positive ones.

The Holy Alphabet

I received this in an email from a friend and liked it so much that I wanted to share it in my journal.

Although things are not perfect
Because of trial or pain
Continue in thanksgiving
Do not begin to blame
Even when the times are hard
Fierce winds are bound to blow
God is forever able
Hold on to what you know
Imagine life without His love
J oy would cease to be
Keep thanking Him for all the things
Love imparts to thee
Move out of "Camp Complaining"
No weapon that is known
On earth can yield the power
Praise can do alone
Quit looking at the future
Redeem the time at hand
Start every day with worship
To "thank" is a command
Until we see Him coming
Victorious in the sky
We'll run the race with gratitude
(e)X alting God most high
Y es, there'll be good times and yes some will be bad, but...
Z ion waits in glory...where none are ever sad!

"I AM Too blessed to be stressed!" The shortest distance between a problem and a solution is the distance between your knees and the floor.
The one who kneels to the Lord can stand up to anything. Love and peace be with you forever, Amen.


PS: GOD LOVES YOU...PASS THE WORD ON AND ASK THEM TO CONTINUE TELLING OTHERS THAT GOD LOVES THEM TOO. JUST THINK OF HOW MANY PEOPLE THAT COULD BE REACHED OUT TO AND BLESSED WITH THESE WORDS.

Steve's reunion

Steve's reunion was fun and interesting. It is really something to see people 20 years after high school. He caught up with a group of old friends and they really enjoyed it. We both wish there was a bigger turn out, but still glad that we went. Here is a picture of us before the party.

CT Scan results-11/05

Yesterday, I went to see my doctor about the CT scan I had on Monday.  It's not the greatest news but it's not the worst news either.  I have been getting out of breath after exerting my self over the past week or so.  I thought I might need another transfusion.  My oncologist said that there are new abnormalities on the periphery of my lungs and that is why I am getting out of breath.  He said that he honestly did not know what it is.  It could be a side effect of one of my chemo drugs.  He said that it is definitely not a new cancer, and that he did not believe that Hodgkin's could come back that aggressively after such an aggressive treatment.  But since I never presented like a typical Hodgkin's patient, he though I might need another lung biopsy to be sure.  He called a pulmonary doctor in Sloan and she was able to see me at 2 o'clock.  She wanted me to have a pulmonary function test, which I did at 11 o'clock.  On this test, I did slightly worse than I did in July, but that is still much better than the one I took in February.   So all morning I was upset because I thought I might need surgery again.  But the pulmonary doctor is very sure that it is inflammation caused by one of my chemo drugs.  She is putting me back on prednisone (40 milligrams a day) and will decrease that by 10 each month until my lungs heal.  That is nothing since during my treatment I took 180 milligrams a day.  I never liked taking it, but it is much better than surgery!  So, the 29th of November I will repeat my CT scan and on the 30th I will repeat the pulmonary function test and see the pulmonary doctor.  As for the nodule on my thyroid, my oncologist says that we will check it after this is all cleared up.  But as far as treatment from him, I am finished, so that is a good thing.  Of course, I will always have to go for periodic check ups, but that is to be expected.  

Other than the getting out of breath, I feel fine.  I was very proud of myself during the pulmonary function test because I had to go up and down stairs for a minute and a half and the lowest pulse-ox reading was 95%!  That is way better than March when walking on flat ground it dropped to 78%.  So until the prednisone kicks in, I will take it a bit easy.  When I feel better, I will get back to my exercising to build up my strength again.  What a rollercoaster!  And I like rollercoasters but I can't wait to get off this one!  

It's funny when you write an entry in the AOL journal because you can pick a mood from a drop-down menu.  You can't type one in if their selections do not fit what you are feeling.  So what is my mood?  I am very happy and grateful that my chemotherapy treatment is over and that it seems I won't need another lung biopsy.  I am a bit dissappointed that the medicine had this effect on my lungs.  Yet, every chemotherapy drug I was given had it's risk factors and could have affected every major organ in my body.  So, inflammation in my lungs is not the worst thing that could have happened.  And I admit, I am tired of going to the doctor each time and them finding something new.  For once, I would like them to say your tests are good, we'll see you in a few months.  But I won't complain because there are people so much worse off than me, and I know the day will come when the doctor does say that to me.  I just have to keep on going and be patient.  So, I picked "hopeful" today because I am feeling so many things and I think the overall statement I need to make is that I haven't lost hope.  

On the lighter side, here is a "hair report".  Yes, I am obsessed with my hair growth!  It's been a little over a month since my last chemo treatment.  Alexis (the wig lady) says that the hair starts growing about two weeks after the treatment ends.  I examine my head constantly for growth and was disappointed at first.  But now, I am glad to report that there is visable growth of nice thick dark hair-yay!  I am approaching crew-cut length.  My eyebrows have really filled in and my eye lashes are coming back as well.  

Tomorrow is Steve's 20-year high school reunion.  (Are we that old already?)  Since we went to the same high school a year apart, it's fun for both of us.  So we are going.  I feel great, I look pretty good considering what I've been through, and I think we have good reason to celebrate-so why not?  It should be fun.

Happy Halloween

Happy Halloween to everyone! This year my Halloween was more low key. But I still had to do my thing! We had a lot of fun. Everyone said that I look like my old self again. I'm not sure if that is a compliment-lol.

LTN Walk-2005

Saturday, the Light the Night Walk was a big success. It was a beautiful night to walk. Team Jackiepie-me Steve, Andrea, Patricia, Peter, Chris, Hailey, & Emil-walked the 2 miles with ease. Mom & Christina cheered us on from the sidelines. We even had a "cheering car"-Catherine, Peter, Alexander, & Andrew-drive by twice. All together (online and offline), Team Jackiepie raised over $3,500. for the Leukemia and Lymphoma Society!!! Thanks to everyone who contributed so generously!

It was a very beautiful and emotional ceremony for me. Supporters carried red balloons while survivors carried white balloons which lit. When the ceremony began, supporters were asked to turn off their red balloons so that survivors could be honored. Then white flowers were given out to family and friends to honor loved ones lost. All were asked to turn balloons on and we walked. The main reason I walked is just because I can. Six months ago I couldn’t walk up the stairs in my house without oxygen. I was lucky to be diagnosed with such a curable cancer and that gave me so much hope. I think of all the work and research that went into helping me, and I hope that someday everyone diagnosed with cancer will have the same chance of survival as I did. I walked for all my “blood cancer cousins” who cannot walk and I plan to do this every year until they find a cure.

Our slogan-La Forza di Vivere-means "Live Strong" in Italian

I made it!

Yesterday was my last chemotherapy treatment.  Everything went well-no fevers.  I don't have to go back to Sloan until Halloween when I will have another CT scan.  Then I will see my doctor later that week and if the scan is good he won't need to see me for three months!  He said we can't celebrate until after the scan.  But I'm still happy because I can't believe I made it through 8 cycles of chemotherapy!  I also had a transfusion yesterday which is great because I will have plenty of energy for the Light the Night Walk this Saturday.  So now it's a waiting game and I have no reason not to believe that it will all be good news.  So while we are not blowing up balloons and tooting the horns yet, we can at least take a deep breath for now!

Light the Night Walk

I will be walking in the Leukemia & Lymphoma Society's "Light the Night Walk" to raise funds to fight cancer on October 1.  Here is my home page if anyone wishes to sponser me:  www.active.com/donate/ItnWestfi/Jackiepie

No donation is too small!!

You Can't Lose Your Baby Hair

Most people are very nice, and don't ask me if I have lost my hair from chemotherapy.  I don't mind telling anyone that I did lose my hair.  Not all chemotherapy medications cause hair loss, but mine does.  When I first began treatments, my nurse told me that  my hair would begin to fall out in two weeks.  And sure enough, it started to fall out exactly when she said it would.  I was in the hospital when I woke up one morning and saw all this hair on my pillow.  Funny story-I don't curse and never say f---.  When I told Andrea that I woke up with hair on my pillow she asked if I said f---.  I told her that I didn't.  She couldn't believe that wouldn't make me curse.  Anyway, in the grand scheme of things, when you have a life threatening illness hair loss should not be considered a major thing.  But it is.  I was so devastated.  I have always loved my hair.  I have a lot of thick dark brown hair and I wear it short.  When I would take a shower, it would just come out in clumps.  I would cry and cry.  Steve would wait for me to come out and look for me because I was afaid to look in the mirror.  He would give me the report.  But because I had so much hair, it took quite a few days for the hair loss to show.  But it did begin to show, and  after week, I was bald.  But, I do have a covering of wispy hair.  Steve has this theory-you can't lose your baby hair.  Being of Italian descent, I was naturally born with hair.  Right now, I have less hair than I did as a baby.  But Steve says that is because my head is bigger, and my baby hair is spread out on my adult head!  I just think that is a cute story.

Before I even began chemotherapy, Patricia found a wig place that specializes in cancer patients.  I went there so that they could see and match my hair.  The wig was ordered, and Alexis, the owner, cut it right on my head.  It is a fantastic wig, and people who have known me for years have said-it's great that you haven't lost your hair.  I always like to shock them by telling them that I am bald.  It's a fun thing to do.  I didn't get the wig because I don't want people to know that I am bald.  I have it to feel normal and look like myself.  When I first began to lose hair I swore that I would wear it everyday.  But as I got used to myself, I started to wear other things at home-like caps and bandanas.  I always wear my wig out, and very few people have seen me without it.  My chemo only makes the hair on your head fall out.  But, if you shave hair or if it falls out naturally, it doesn't grow back until chemotherapy is over.  I was not supposed to lose eye brows or lashes at all, but because it is almost 6 months of treatment now, and they fall out on their own, I now have a lot less of them.  But I am very good with make-up so people don't notice.  If there is anyone reading in the north Jersey area who is interested in getting a great wig, I went to Alexis' Wiggery in Ridgewood.  Alexis is very knowledgable and talented and I highly recommend her.

Steve being the wonderful husband that he is, has always been so matter of fact about my bald head.  It did not freak him out at all, as it did me.  The nice thing is that he loves to rub my head, which is very soothing.  His nickname for me head is coconut because that is what it looks like!  So I now have a sense of humor about being bald.  I can make jokes about it.  And there are perks as well.  Showers are a lot quicker because I don't have to shave my legs or arm pits.  I don't have to blow dry my hair.  And now I have a great wig, so when my  hair grows back I can use it on bad hair days!  They say it will take 2 to 4 months for my hair to grow back.  Given my Italian genes and the fact that I wear my hair short, I am betting that I will be wigless by two months after treatment. 

ADD

Today I am having a BIG ADD day.  I decided to write about it because I think that anyone dealing with a child with ADD needs to hear this.  Normally, I am extremely calm and focused, I always complete any task I begin.  So, I am facinated by how I feel on days like this.  Here is how today is going.

I planned on doing a lot of cleaning today (I do like to clean).  But then I saw the crochet project that I started yesterday and I wanted to do that for a little bit.  To my credit, I did finish it.  But while I was doing it, all these great ideas for other projects came to mind.  So, I had to start another project.  Did I finish it?  No.  I stopped, started the laundry, then went back to it.  All the while, time is passing I keep forgetting to eat lunch (even though I am thin, I never forget to eat).  Then I stopped to do more laundry and said to myself-you must eat now.  While eating I was distracted by a Halloween magazine that I had bought.  So now I am eating and reading about all these great Halloween ideas.  But I don't even read through everything because it so laborous in this state!  Now I needed to go to the computer to look for Halloween costumes for my God daughter, Hailey.  I start this task, only to be overwhelmed by the number of costume websites and choices (again not at all like me).  The more overwhelmed I become, the faster I try to go and I can't keep up with my mind which is now racing.  As a matter of fact, my fingers are having a hard time keeping up with my mind right now which makes it hard to type.  So, I abort this project because I'm just not getting a good feeling from it.  I went back a did a little more crocheting, went back to the computer, did more laundry, and took a shower.  Now I am ready to go to 5:30 mass and I am just wondering how I will be able to calm myself and sit trough it.  But I am an adult, I know the rules, so I will behave!

My point is this:  Imagine being a child with a mind that is racing around.  The adults around you are trying to make you complete tasks and it feels like torture to you.  You can't keep up with your thoughts and you are overwhelmed.  I am lucky because if I didn't get to mycleaning today, so what?  It will be there tomorrow, no pressure.  When you are dealing with kids with ADD, you have to give them short tasks and change it up for them often.  That's it for now.

Missing School

This week, school is back in session.  I've been a little mopey these last couple of days because I wish I could be there.  I have a very nice substitute who I am in communication with.  She is taking a lot of my suggestions.  But being the control freak that I am, it is hard to think about someone else doing my job.  Especially when I think of how important my job is.  The class sounds like a cute bunch.  There are 13 students mostly 5 years old.  That is my favorite age to teach.  Andrea says that I shouldn't be upset because there will be many more first days of school.  Chris says that once I'm back at work I will have wished I had taken the whole year off.  I hope not.  But who knows, only time will tell.  I just have to keep my mind busy with other things until my return, which should not be too far away.

Today was my nephew Peter's first day of school.  Reports are that he went on the bus then into school like a champ!  Of course, we knew he would, he is very independent and not shy at all.  That's our guy!

Last PET Scan Results

Last Tuesday, I saw my doctor and discussed the results of the PET scan I had after cycle 6.  It is basically the same as the one I took after cycle 4.  He had said after cycle 4 that if he read this scan after cycle 8, I would be finished.  So, everything is very good and he kept saying, "I am very happy."  As it stands now, I will complete these last two cycles at the same strength because I am tolerating it so well.  He does not need to do another PET scan after cycle 8.  Six weeks after my last chemotherapy treatment, he will do a CT scan.  If all is well, I won't have to see him for another 3 months.  He believes that I will not need any radiation.  

 I wrote after my last PET scan that they saw a nodule on my thyroid.  The ultrasound showed that it is definitely there.  My doctor believes that it is probably a benign tumor that I have had for many years, and not brought on by treatment.  Something did show up there on my first scan in April, but the radiologist thought it might be a lymph node.  So, it was probably this nodule that they saw.  After I am finished with the chemo, he will refer me to an ENT who will look into the nodule and make sure it is benign.  I read about this on the internet, and many adults have them and 90% of the time they are benign.  I am not worried, and if it is something I will deal with it.  

A couple of days before going to see my doctor for the results I was walking in my garden.  I always look at those two poor little rose bushes that have no roses.  They looked quite sad and bare.  A day or so later when Steve came home from work, he asked if I had seen that there was a beautiful lavender rose on one of the bushes.  This was the night before going to see the doctor so I knew everything was going to be OK.  Thanks again St. Therese!  

So, this news is good, and the end is in sight!!  Thank you all again for your prayers and support!  

So, why me?

I don't think that I have really asked the question, "Why me?"  Maybe I have in the beginning, but I can't really remember.  But it's a valid question.  The only answer I can come with is, why not?  People get sick.  It's not a punishment, just a fact of life.  Sometimes I think that I face challenges to help other people somehow.  This is definitely a life-changing experience and I am trying to come away from it a better person.

Believe me, if I could turn back time and choose to not have Hodgkins, I would.  But, I am using this as an opportunity to do things that I did not have time to do.  Because my mind is not occupied with work, I come up with all sorts of ideas.  Steve says I have the "third eye."  The best thing that I have learned to do is crochet.  I have always wanted to learn how.  Patricia taught me how along with a lady from her office.  Now I am crocheting all the time.  It's the perfect hobby for days when I am too tired to get off the couch.  Of course, I have more time to read.  And, I actually wrote a children's book.  Now I just have to look into getting it published.

The effects of the medication has given me a new perspective of the children that I teach.  Sometimes, my short term memory is very bad after chemo.  I will try to recall the name of something and I can't.  The harder I try, the more my mind shuts down.  This must be how it feels to have a learning disability.  So many times my students are in this same situation, and now I can really understand how hard it is for them.  The prednisone makes me hyper sometimes.  I feel like I have ADD.  I go from one task to another without completing any, and the littlest things distract me.  This is SO unlike me.  I have had the unique opportunity to walk in my students' shoes.  And I am lucky to know that it is not permanent for me.  I wonder how this new understanding will effect my teaching.  I have always been a patient person.  I am sure I will be even more so now.

In the beginning I spent a lot of time thinking about all the things that I could not do because of Hodgkin's and my treatment.  Now I think about all the possibilities that this time has given me.  So instead of wondering "why me?" I am trying to consider this time as a rare gift.  It's a time to learn new things, regroup, and come back better and stronger.

I am loved:)

I live a quiet life.  I've always been a quiet and shy kind of person who had a few close friends rather than large groups of friends.  So it was pretty amazing to see how many people reached out to me from different stages of my life from childhood to present.  I know I have the best family and friends.  I know that I have touched many lives along the way.  But I never had the time to stop and think about it.  And I guess I never realized how many people cared.  Having Hodgkin's has given me a chance to see all this-it is much like being George Bailey in "It's a Wonderful Life".  I can't believe how many people have found out about me directly and "through the grapevine" and have reached out through cards, phone calls, and emails.  People that I haven't seen in years have contacted me.  Friends from work and church sent so many cards and gifts, it was truely too generous.  And my family and closest friends treat me like a fragile piece of china so that I don't do anything that may get me sick and delay my treatment.  (They are really spoiling me!)  All these things are what help me carry on and get better.

My very first chemotherapy treatment, my nurse Tikki and I were talking.  Steve and Andrea were there, of course.  I explained how my sisters and Steve were handling everything.  I told her that Andrea was sleeping over that night in case of anything.  I told her that my best friend, Chris, was putting her daughter in daycare the next day to stay with me while Steve went to work to be with me after my first treatment.  After telling her all this she said, "You are well loved!"  I smiled and said, "I know."

St. Therese

So, how has St. Therese inspired me?  It is a story that you will either believe if you have faith or think it's crazy if you don't have faith.  Everything can be chalked up to coincidence, but I believe that everything happens for a reason, and if one is open to signs, one will see them.

Anyway, St. Therese is a saint that I had not known anything about.  The first I heard of her was five years ago.  Steve and I had gone to visit an aunt (who also happens to be his Godmother) that he had not seen since he was a young child because she lost track of his family after the death of her husband.  Steve brought her a bouquet of flowers.  When she received them, she said, "There is the rose, St. Therese!"  I thought nothing of it, but always remembered it.

Over the years, I have prayed to many patron saints for various intercessions.  But, ever since I was diagnosed with Hodgkin's, it is almost as if this special saint has been trying to get my attention.  First, there was an email prayer chain to St. Therese.  I didn't think much of it, but I passed it on because I remembered how devoted Steve's aunt is to her.  Then one day at my mother's house, she gave me a tiny statue of her that had come in the mail.  Weeks later, I asked her why she gave it to me.  Did she know anything about the saint or have a special devotion to her?  My mother doesn't even remember giving it to me and knows nothing about St. Therese.  Then there are the roses.  St. Therse was a cloistered nun who only lived to age 24.  She promised after her death to perform miracles on Earth, and would make herself known by the showering of roses.  Steve had planted many rose bushes in our yard, but we never really get any roses because of the animals (the chipmunks eat the buds!).  This year, every rose bush had produced roses and some of them are thriving!  Bushes made roses that we had even fogotten the color of.  Coincidence?  Maybe, but I don't think so.  A couple of weeks ago, all my roses were suddenly gone.  I was sad, and asked St. Therese to send more so that I knew it was not a coincidence.  A few days later, at my friend Chris' child's birthday party, her sister-in-law (who doesn't even get along with her too well) came in the yard and plopped a vase full of the most beautiful roses on the buffet table.  The next day, I noticed that two rose bushes, the lowest ones that produced the fewest roses because the animals did get to those, each had produced a rose.

Of course, Steve's aunt sent me a St. Therese healing mass card.  I was so intrigued by this saint that I read her autobiography.  She is not the patron saint of cancer or of the sick.  She is the patron saint of the missionaries.  But her goal is to shower miracles on the Earth and save souls by bringing them closer to Jesus.  If you would like to read more about this saint, her story can be found on her website, The Society of the Little Flower, posted under the favorite websites of this blog.

Test Results

I repeated my PET scan and CT scan on Thursday and discussed the results with my doctor yesterday.  I have shown much improvement.  According to the reports, areas outside the lungs that previously showed activity have been resolved.  There is very low grade activity in my lungs.  (Activity shows where the cancer is.) He actually believes that this might be a false positive and that it is even better than what the scan shows.  So he is going to have me repeat the PET scan after the 6th cycle and compare it to this one. He did not lower the dosage of the chemotherapy. But I am ok with that because I am tolerating it well and I want to WIPE THIS OUT!  So basically, it is almost all gone.  The only thing is that now they see there is a small calcified nodule on my thyroid gland in my neck.  He is having me go for an ultrasound next week, but he is not alarmed.  He believes it is probably a benign tumor.  Overall, he gave me an A-minus.  A very good grade!

Hospital Stays

At this point I have completed 4 out of 8 cycles.  During cycles 1 and 3, I had to be hospitalized.  One of the chemotherapy medications on day 8 has side effects of fevers and low blood pressure.  During these two cycles, I spiked fevers at home (as high as 103.5) that very night.  Also, my blood pressure dropped to about 70 over 30.  Not a nice feeling!

At Sloan, they take no chances.  They treat all fevers as an infection.  So during these cycles I was admitted to the hospital.  The first stay was 5 days, the second was 6 days.  When this happens, my white blood cell count drops to almost nothing-(.2).  They will not release me until it comes up again.  That takes almost a week.  So while I am there, I get IV fluids and antibiotics the whole time.  But after the first night, I have no more fever and I feel fine.

If you must stay in a hospital, Sloan is a wonderful place to be.  They cannot do enough for you and your family.  My first night there, Steve and Andrea slept in the room with me.  They brought them a chair that turns into a bed.  I felt so bad for them because they looked worse than me that morning.

While I am there, I go to the recreation room.  They have crafts, pool table, a library, and a balcony.  I happened to be there on my birthday during my 2nd stay.  They actually made it a very nice day for me.  In the morning, I made a stained glass cross.  I learned to solder which was really cool.  In the afternoon, I went to a "Look Good, Feel Good" workshop.  Someone from Clinique was there giving a demonstration about applying makeup  especially for cancer patients.  We each received a big box of high-end cosmetics.  My sister Andrea and my mother came with brownies.  (Of course, Steve was there).  My nieghbor, V, visted me also.  That night, the nurses showed up with an ice cream cake and sang "Happy Birthday" to me.  So it turned out to be a very nice birthday for being in the hospital.

 

Chemotherapy

I had my first chemotherapy treament on April 25.  I am on an escalated BEACOPP.  It is a 21 day cycle.  I have IV chemo on days 1 & 8.  During the first two weeks I take a lot of oral medications (chemotherapy, prednizone, preventive medicines,...).  I also have injections of aranesp (red blood cells)  and nulasta (white blood cells).  The third week I am only on preventive medicines.  In the beginning of each cycle I take 25 pills a day, at the end just 4 a day.

I was very scared the first time.  You hear so many terrible things about chemotherapy.  But what choice is there?  I have to do it.  Today's medicine is so wonderful, they give you plenty of medication to avoid getting sick.  Thank God, the worst that I feel after treatments is very tired.  I can handle that.  I am so happy that I do not vomit from this.  The most unpleasant side effect for me is hot flashes and night sweats.  I hate them because they disturb my sleep.  But it is still better than vomitting.  Other side effects I've had are a metallic taste, coated tongue, weakness in my hands, and being a little forgetful.  But nothing too the extreme.  Most of the time I feel pretty normal.  People ask me if I am an invalid.  No!  I can function quite well.  I am even starting to exercise lightly again so I am more than pleased.  The best part is that my breathing is great.  I can feel the chemo working.

Steve takes me to all my treatments and Andrea comes with us most every time also.  It's like I have two body guards.  It's a long boring day of waiting.  Waiting to see Dr. M, waiting for the medicine to come up from the pharmacy, waiting my turn, then waiting for the treatment to finish.  And here we are in NY where there is all this great food, and all I want to do is go home after I'm done.  Poor Steve and Andrea look at me with sad faces and say-it's all about you Jack.  They take very good care of me, and make my chemo days bearable and amusing.

What Cancer Can't Do

What Cancer Can't Do

Cancer is so limited

It cannot cripple love

It cannot shatter hope

It cannot erode faith

It cannot eat away peace

It cannot destroy confidence

It cannot kill friendship

It cannot shut out memories

It cannot silence courage

It cannot invade the soul

It cannot reduce eternal life

It cannot quench the spirit

It cannot lesson the power of the resurrection

                                                                   Author Unknown

On to Sloan-Kettering

We wasted no time after the diagnosis was confirmed.  That was a Wednesday, my sister Patricia filled out an application for Sloan-Kettering that night.  They called me that Friday, I had an appointment for the very next Tuesday, and I started chemotherapy the following Monday.  Wow, did things move fast!  But that is the best way.

My doctor, Dr. M, is very wonderful.  When he examined me he told me that I do not present like a Hodgkin's patient.  I had no swollen lymph nodes, no fevers, no night sweats, no dry skin....  He said that my doctors did everything as they were supposed to and not to think about "would have, should have, could have."  Still, I wonder what would have happend if I went to the doctor when my cough first started.  But why would an otherwise healthy 36 year old get so excited over a cough?

After being examined by him and having blood work work done, he told us that it was stage 4 Hodgkins.  It had spread to my lungs and that automatically puts me in stage 4.  Still, I have been told stage 4 Hodgins is better than stage 1 of other cancers.  He was going to make me repeat my CT scan and have a PET scan.  That very day I had a bone marrow biopsy on both sides of my pelvis.  It was painful but not as bad as I anticipated.  I believe I had a very good person doing the biopsy.  The worst was that I was extremely dizzy after the procedure.  I thank God every day that it did not spread to my bone marrow. 

But what I didn't know at the time was that everyone assumed that it had spread already because of my bloodwork.  I had 4 out of 7 risk factors in my blood.  Dr. M knew that day that I needed to start what is the most intense chemotherapy for Hodgkin's-an escalated BEACOPP.  It is not a protocal that he gives out lightly.  This scared the crap out of me.  I went in thinking that I have the "good cancer" a few weeks of chemo and it'll all be over.  I left thinking that I had the worst case of Hodgkins ever, and I am in the small number of people who die from this one.  I cried all the way home in the car.  When I get like this, I have to have my pity party.  I cried everyday and woke up each moring wondering if I would ever be able to smile again.  I was angry and depressed, which I am sure is very normal.  Patricia offered to prescribe something for my mood.  I told Steve that if I didn't bounce back in a few weeks, I would definitely be open to that.  I've been through other heartaches without needing drugs and I wanted to see first if it was really neccessary.  I did bounce back and have not needed to take anything-not that I would tell anyone else that my way is the right way for them.  If there is anytime to take such a drug, this is it.  I am very blessed to have the support system that I have.  When I am going through a tough time like this, Steve gets the brunt of my moods.  He knows that I just need to go through it and there is no snapping me out of it.  He is always there with hugs, encouragement, and unconditional love.  Being married is easy when you don't have to put the wedding vows to the test.  But we have been tested over and over many times throughout our 13 year marriage (by circumstances beyond our control) and we always come out stronger and closer.  So you see how lucky I am?  Part of my being able to get through this is to focus on my blessings.

 

The Monday that I started chemotherapy, Dr. M had the test results back.  He told me that even though I was stage 4 the scans were not too bad and the bone marrow biopsy was normal.  I think he actually said that I am the best of the worst.  He also told me that the other people who went through this were much older than me and they are all doing fine.  Yes!  Hope!  I am going to live!  (Well nobody knows when their time is up, but I wasn't handed a death sentence.) 

I thought of a Hermann's Hermitts song that I like and would always sing to myself that applies here:

This door swings both ways
Lets in earth and sky
Make the most of livin'
If you're not prepared to die!

The Diagnosis

It wasn't easy for me to be diagnosed.  It all started over a year ago with a cough.  I believe I did catch an upper-respritory infection from a student.  I continued to cough through the month of May but thought nothing of it because I usually have seasonal allergies at that time.  Summertime, the cough seemed to subside.  My cousins from Italy were here and I spent the whole summer sight-seeing and walking miles and not having trouble breathing.  Then when school resumed in September, the cough came back.  I thought it was from poor ventilation or mold in the school.  As the months continued, I began to feel worse.  I was tired a lot and had trouble breathing.  Oh-the most obvious symptom was the weight loss.  That began after the coughing when my cousins were here.  I did not lose much at first and attributed it to the extra exercise and less snacking.  But around the holidays, I could not keep my weight on and the coughing was becoming unbearable.

I made an appointment to see my primary care physician in February.  She seemed to think that I had asthma.  She sent me for a chest x-ray and pulmonary function test.  After seeing how bad my x-ray was, she sent me to a pulmonary doctor.  I went to my mother's doctor because he is very good and I trust him.  But I could not get an appointment until March.  So I thought, I waited this long what's a couple more weeks?  The day I went to see him, he told me that my x-ray was very bad, my pulse-ox level dipped to 78 when I walked, and that I was not to return to work.  He ordered oxygen for me to have at home.  I was stunned.  He sent me for test after test, starting with the least invasive.  I had bloodwork, CT scan, galium scan, a broncoscopy and they all showed nothing.  Finally, in April I had to have surgery-VATS-video assisted thoroscopy.  They had to do a lung biopsy to get the diagnosis which showed that I had Hodgkin's lymphoma.  It took a complete month to be diagnosed.

The worst part of being home was not knowing what was wrong with me.  It was very depressing.  I was missing my students.  I was not allowed to do anything because I could not move about without becoming out of breath.  The way I explained it to people is that I felt as if I had no purpose in life.  My husband Steve and sister Andrea did everything for me.  Andrea even spent many nights sleeping in my house to help us out.  Also, we all decided not to tell my parents that I was home sick for fear of what it might do to their health.  So when I was lonely and just wanted to talk to someone, I couldn't even call my mother.  But I reminded myself that after all she has been through, I am lucky to have a mother to call.  We told my parents everything the day before my surgery.  I did not think it was right to have surgery without them knowing and could not figure out how I would hide being in the hospital from them.

Anyway, they say that if you must have cancer, Hodgkins and prostate are the ones you would wish for because they are highly curable.  Well, I can't have prostate, and I was very thankful to be diagnosed with a cancer that is so curable.  But that did not keep me from being scared to death.  I have always had this feeling about cancer, a deep fear of it.  Whenever I heard of someone having it, I always got this feeling in the pit of my stomach and prayed that it would never happen to me.  I did not believe I would ever be able to handle going through chemotherapy.  I never had this feeling about other terrible illnesses-it's almost as if I knew someday that I would have to deal with it.  But I have never heard a bad outcome about a Hodgkin's case, and at this point that is what kept me going.  I put my trust totally in Steve, my sisters Andrea and Patricia, and as always God.  I am very fortunate to have a nurse and a doctor for sisters.  So I told them just tell me where to go and what to do and I will do it.  Someone recently said that she didn't know how I was doing this.  What choice do I have?  I can't say no I don't want to do this.  When you are faced with a challenge you just have to do it.

Why am I doing this?

When I was first diagnosed with Hodgkins, my cousin Joe said that I should start a journal.  I told him that I was too angry and that it would probably be a lot of psychotic babble.  I guess I was afraid that someone would read it one day and think that I'm a nut.  So why three months later am I writing a journal for the world to see?  I've been wanting to start writing one for a few weeks because I think it's theraputic.  I want this journal to be mostly about my emotional experiences and how I came to be at this good place.  Maybe someone out there needs to read something like this.  So I am going to try to share my thoughts with those who would like to read them.  It's pretty scarey putting your personal thoughts out there, especially for a private person like myself.  But I am going to give it a try and see what happens.