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.