Maybe this winter

Wow, today was a scary day.  I haven't been able to shake this anxiety all day.  Which surprises me.  I thought I was Miss Calm Cool and Collected.

John and I called his oncologist at the Transplant Center today.  He needed to ask whether or not he could stay on a certain medication, or if it would be contraindicated with the bone marrow transplant he is going to have in the future.  Well, Dr. Claxton told him he would have to get off the medication.  And then John spoke to him about some more things.  He told him that he had been catching things lately (bronchitis, etc.).  Dr. Claxton told him that he wanted him to do another bone marrow biopsy soon (ouch, they core you for that one!) to see what stage the MDS was at.  John also asked him if he should get a flu shot, and Dr. Claxton said it would probably be pointless to get one this winter, as he wouldn't need it, as he might very well be getting the bone marrow transplant this winter!

I got on the phone, not knowing what they had discussed, and told Dr. Claxton how many hours John had been sleeping.  He said this concerned him deeply, and with this information, and based on what John had told him, and the fact that there may be an available donor, he was thinking about doing the bone marrow transplant this winter.

To be honest with you I am stupified.  I knew it would be soon, but not this soon.  October is in two days.  That means winter is in two months.  So technically we could be talking two to five months here.  This is so shocking to me.  I thought I would be so calm when it came, but when it is staring you in the face it is different.   

Well, that is about it.  I guess I won't jump to conclusions.  I will know more on Oct 20th.

Take care everyone.  Love, Krissy :)  

 

 

John has two angels!

First I want to say thank you to everyone who has said they will send John cards.  I haven't told him about it, so he will be surprised!  I can't wait to see the look on his face!  Actually, he has received two so far, and they were from the UK, the first overseas cards he has ever received in his life!  Thanks ya'll!  He was so excited.  

And guess what else?  He made it into the Chemo Angel program!  He received a letter on Friday from a family.  Then he received another letter from a woman on Saturday, lol.  So he has two Angels, lol.  What amazes me is how the Chemo Angel organization matched him up so well.  I was worried that I specified too much on the form, and that they weren't going to be able to find him anybody.  But they did.  I won't go into too much detail, for privacy reasons, but the first Angel had the same religion, liked cats, liked the same crafts as me, and had the same interests as John.  The second Angel was a Christian also, was a cancer survior, and has had a bone marrow transplant!  She has three cats!  She also likes the Green Bay Packers like John!  So you see, they really match the cancer patients up with like-minded Angels.  Oh, the reason I know all this information is that his Angels have already written to John!  One sent a letter dated the 20th and the other a letter dated the 21st!  So he must have been accepted into the program on day one or something.  I worried for nothing.  I was never contacted by the Chemo Angel Organization, however, that he was accepted.  They just contacted the Angels and the Angels wrote to John.  Just as well, he got a surprise letter from each of them!  Surprises are nice.

So now for an update on John.  A lot of you have been emailing me asking how he has been doing.  Well, he has been sleeping extremely long hours.  Saturday through Wednesday of last week he couldn't wake up.  On Saturday he slept 24 hours straight, except for when I awoke him to take his meds.  Sunday through Weds. he slept about 20 hours a day.  When he realized what was happening to him, he was able to make himself stay up some, and was able to get away with only sleeping 14 hours a day.  So that takes us to today.  

Right now he has the start of bronchitis.  I guess he is starting to catch things again.  I am going to call the Transplant Specialist, Dr. Claxton, on Monday and ask him if John should get a flu shot this year.  I am also going to ask him if John should be drinking something like Ensure on days when he can't wake up for 20 or so hours, except for five minutes to take his meds, and is too tired to eat.  I was thinking that at least he would get some vitamins and nourishment that way.

Okay, so this report sounds glum.  Everything is not glum.  There ARE times lately when he is up, and we are having quality time together.  We listen to music together, watch TV, eat, and spend a lot of time talking.  The other day we celebrated Michael's birthday.  He is eight.  We gave him half a can of tuna and played with him with his favorite toy.  We didn't buy him a new toy, because he is not interested in any new toys, because they bore him.  He is too smart for them!

Well, that's about it, hope ya'll are doing well, Krissy :)    

Chemo Angels

Hi everyone.  In the last entry I was talking about some important things and wanted to give you an update.  But I am going to save that for another entry.  I have something else I wanted to talk about tonight.  I wanted to ask for prayers and good thoughts for something.

I am hoping that John gets into a program called "Chemo Angels".  I found out about the program through two journalers.  If you want to know more about it the website is www.chemoangels.com.  What they do is match a "Chemo Angel" with a cancer patient.  The Chemo Angel sends the patient cards, post cards, letters, and sometimes even a magazine subscription or something to eat.  

First I didn't know if John would qualify for the program.  The site said it was for patients currently going through chemo.  John will have to go through chemo, and maybe radiation, and then a bone marrow transplant, but not quite yet.  So I emailed the Chemo Angel Network, told them he had MDS, explained that he was going to have a bone marrow transplant, and told them his health condition and how many hours he was sleeping a day.  They emailed back and said he would qualify.  Then they asked me to fill out a form on the internet at the site.

I talked to John about it, and he said that getting a card or a postcard from somebody would really cheer him up.  It would really make his day.  He became very excited.

So I proceeded to fill out the form.  When I was done I hit submit.  To my surprise it stated, "If you are selected, you will hear back from us within ten days."  I am so nervous.  What if I don't hear back?  I really want this for John.  He deserves to be cheered up!  I am also worried that I filled out parts of the form wrong.  Where they said put his oncologist down, it said: address, city and state.  I thought that that meant to put the city and state.  Now I am wondering if they wanted the street address.  If they can't verify him through his oncologist maybe they won't accept him.  

Anyway, please pray that he gets accepted.  I want him to get a card or postcard sometimes to cheer him up.  Or whatever.  

Thanks, Krissy

Redefining Myself

Hello.  Hope everyone is doing well.  I am OK.

I posted a couple of entries ago that John has been sleeping 16 hours a day.  I also said this was causing me lonliness. 

You see, John and I have been doing everything together for a long time.  We have both been home together.  He is on disability and hasn't been working.  So we see a lot of each other.  I don't have a job because I am on disability too.  So I have been home with him.  This is going to be hard for me to be honest about, but I may as well mention it, because it is part of my story.  Some of you know it, and some of you don't.  I don't work because I am bipolar.  That is manic-depressive.  It is a brain chemistry illness that I am handling very well with medication and therapy.  I have journaled about the fact that I have it in my public journal.  So it is no secret.  But I haven't mentioned it much lately.  My new readers don't know I have it.  I feel shakey mentioning it, there is so much stigma involved.

At any rate, I am mentioning the bipolar to say that I have spent the majority of my time doing things with John, because I don't work.  Now that he is sleeping, I am terribly alone, and as it were, trying to "redefine myself".  I have been nothing but John's wife, John's friend, John's love, John's everything.  And I have been almost nothing for myself.  Gee, I never realized that.  My whole world revolved around him.  Not that that is a bad thing.  My world still revolves around him.

My main job in life, and rightfully so, consists of taking care of John, making sure he gets his meds (I have to wake him up to do this), cooking for and feeding him (again, I have to wake him up to feed him), hydrating him, waking him up and making sure he gets to his drs. appointments, taking care of him when he gets the flu, etc. 

But now that he is sleeping, I am trying to think about what I want to do that is just for me.  Gee, I haven't done anything just for me in a long time.  I was talking about it with my therapist yesterday, and I told her I wanted some activities that I can do while John is asleep.  Something that as he gets sicker I can still stay in the house and watch him, but have something to do.  Something I am good at.  I told her I couldn't decide what to do.  Do I want to watercolor?  Write?  Make cool jewelry?  Something I could do really well.  Then I looked at my therapist sadly and said, "But I am not any good at any of these things."  She asked me why I had to be good at doing something to do it.  She suggested I just pick something I enjoyed.  She said she goes to Pottery Barn and paints bowls when she gets stressed.  She said she was not good at it.  Then I understood her point.  I just have to find something I think is fun.  My problem is my family is SO super talented and creative that I get frustrated if I can't make a final finished project the way they can, lol.  So, anyway, I need to think about what I want to do for fun.  Any suggestions would be welcome.   

The other thing that my therapist suggested was volunteer work.  I can't earn any money or my Social Security will be taken away.  If not taken away, then at least some of my benefits will be taken away, and I will be worse off than if I had never taken a job.  So the work must be volunteer.  Also, because I still get depressed, and sometimes manic, and I have a lot of anxiety going on because of John's illness, I can only take on a commitment of a few hours a week.  Also, I can't leave John for long.  Just a couple of hours at the most.  So I am trying to find something that will fit into my schedule.

My therapist suggested a cat and dog adoption agency, and I loved the idea, but then I got to thinking, I can't bring home Parvo Virus to John.  Then someone suggested to work at an old folk's home or a hospital.  Again, too risky in the germ department.  I have no idea what I am going to do.  But surfing the net last night I found a local number to call to find volunteer activities in my area.  I am going to call today. 

I used to teach English as a Second Language.  I wonder if I could do that again.  I loved it.  But it is a big commitment.  Anyway, I will call the volunteer agency this morning and see what volunteer opportunities they have.

So, I am doing all this so I have purpose in my life.  A reason to get up in the morning besides housework.  Something to get past the lonliness.  I do have two other things I am volunteering for.  I am on a board at church.  And I just joined the local Cancer Survivor's Association Board.  Actually, the board just started and we have had two meetings so far.  It is fantastic. 

And I am also a Secular Order Carmelites Discalced.  I am a member of a religious order, one in which the members live in the world, and are allowed to be married.  OK, I will explain more about that another time, this journal entry is getting entirely too long, lol. 

So those are some of the new ways in which I want to define myself, but I need to think about the specifics.  I am kind of excited about volunteering, perhaps meeting a new girlfriend to go to lunch with, and maybe learning a new hobby.  I haven't done anything new in a long time.  Maybe I will have some fun. 

Hoping you all have some fun in your life also, Krissy :)

Not without risk

Today was a good day.  John got up early.  Early as in 11:30 AM.  He has been feeling a little bit better lately and hasn't caught anything in a few days.  So he was able to get up this morning and make a doctor's appointment.  And get some bloodwork done.  And he even came home and helped with some housework.

I made a chicken dinner with the trimmings.  It was real nice to eat together and have some quality time. 

I also received two books in the mail that I had ordered.  One is called Bone Marrow and Blood Stem Cell Transplants from bmtinfonet.  The other is called Across The Chasm, A Caregiver's Story by Naomi Zikmund-Fisher.  I feel so good to be armed with information.  It is empowering.

Well, I thought it felt good anyway.  Until I started reading the caregiver book.  The caregiver book is written by a woman named Naomi whose husband had MDS and was waiting to have a bone marrow transplant.  (He eventually does have a successful one.)  Each page is written in entry form just like this journal.  She wrote it to keep others informed as to her husband's progress.  Well, I was thoroughly into the book, and it was helping me, until I got to this one entry.

Actually, this particular entry was written by her husband, Brian Zikmund-Fisher.  He explains that he was only given about 25% chance of making it through the first year of the transplant.  He explained why.  Now if you are squeamish, I suggest you stop reading now!  Seriously. 

A bone marrow transplant patient is given extensive chemotherapy and/or radiation before he starts his transplant.  During this time, the chemo destroys his bone marrow and his immune system.  The purpose of this is two fold.  The first reason to destroy the bone marrow is to get rid of every cancer cell that is residing in the body.  The second reason to destroy the bone marrow is so that the new donor's bone marrow can be added.

Herein lies the big risk.  Without an immune system, the transplant patient is vulnerable to any infection that comes along.  As Brian explains it in the book, "even a minor cold can kill you, and unfortunately, sometimes it does."

So that is what I read about today.  Not too much fun stuff.  Pretty scary.  I have also read about other complications to a bone marrow transplant.  One is GVHD, which happens when your body is trying to reject the new donor's bone marrow.  And then there is the total failure to engraft.  This right out kills the patient.  Total engraftment is very rare these days I have read, but nonetheless, a possibility.

OK, so if you have read to here, you probably have guessed how nervous I am.  But still hopeful.

Oh, and modern medicine is ALWAYS improving.  From glancing at the book, Brian had his bone marrow transplant in 1998 or 1999.  Modern medicine has come a long way.  These transplants are improving. 

John and I have hope.  Lots of hope.  

John may have a donor!

I am so excited I could do cartwheels, even though I have never been able to do them before!  I'm singing for joy at the top of my lungs.  John may have a donor!  Oh praise God!

On Wednesday John called Hershey Medical Center (where he is going to have the bone marrow transplant) to ask if a donor was found for him yet.  Ruth, the RN who handles such matters, was not in.  So John left his name and number.

Yesterday, Ruth called back.  She told John that one more factor needed to be checked, but they think they have found him a perfect match.  A PERFECT match!  She told him to keep positive, because when everything has matched as it has thus far, the last piece almost always matches too.  She said by the time John comes to see Dr. Claxton on October 20th, they will be finished with what they need to do, and will be sure whether or not it is a match.

I am so excited.  Dr. Claxton told John at his initial appointment that he had an 80% chance of finding a donor.  While this is a high percentage, in the back of my mind, I kept thinking, what if he was in the 20% who can't find a donor?  Well, today's news is a good sign.  It looks like his marrow type is not a real rare one.

So I hope they found a donor for him on the first check...

On another note, many of you have been asking how John is doing.  Well, his cancer is progressing.  His biggest problem is that his white blood cell count is very low, and he is catching everything that comes down the pike.  Recently he has had a cough, a skin infection, and a virus.  And then he caught the flu which he promptly gave to me.  I have to get a flu shot this fall because I can't afford to be sick also.

He also has a very low red blood count.  This makes him VERY sleepy.  He sleeps about 16 hours a day, sometimes more.  He is asleep right now (he hasn't gotten up yet today) and it is 5:20 PM.  This causes me a lot of lonliness, but that is material for a whole nother journal entry.  This one is getting too long.  I don't want it to sound like he has totally fallen apart - we do have some time where we can do things together, and we are making the time together very quality time. 

Well, bye for now.  Hope everyone is doing well.  Love you all, Krissy :)   

John is diagnosed

June 16, 2005, wasn't just like any other day.  John and I sat in Dr. Ford's office waiting to hear what the results would be from John's recent tests.  The door to the doctor's office opened and the oncologist strolled in.

He looked quickly over at John.  "Well, I have some good news for you.  You don't have Non Hodgkin's Lymphoma."

"Great!" John and I both blurted out at the same time, relieved.

"You have something else," he continued.  "You have Myelodysplasia."

John and I were both stunned.  We thought he was giving us good news, and now he was bringing up this word Myelodysplasia.  What was Myelodysplasia anyway?

Dr. Ford explained that Myelodysplasia was bone marrow cancer.  John's bone marrow wasn't working properly.  He said it would eventually turn into MDS leukemia (something called AML), and that John would need a bone marrow transplant to stop it from doing that. 

Now we were even more stunned.  And horribly frightened. 

Apparently John knew a little bit more about bone marrow transplants than I did.  He said, "Well, I've heard about bone marrow transplants before.  First they have to destroy some of your bone marrow.  If the donor's marrow doesn't take, then I die."

"Well, it's not without risk," Dr. Ford said.  "But you need to do it.  Because without it you WILL die."

Then he got up to leave the room.  "I'm sorry," he kept saying and shaking his head.

On the ride home John says that everything that Dr. Ford said, and everything that he knew about bone marrow transplants kept going round and round, over and over, in his head.  It was "traumatizing" is the way John is describing it to me.

Traumatizing is how I would describe it too.  I was frightened beyond words.  What would the future bring?  

A battery of tests

Upon coming home from the honeymoon, reality began to set in.  The possibility that John had cancer again loomed large.  yet I wasn't really sure.  Maybe he didn't have it.  Maybe there was another explanation.  Maybe he did, maybe he didn't.  I couldn't get any peace to my mind.

He immediately went in for a battery of tests.  I don't remember them all.  There was a CT scan and a PET scan.  Oh yeah, and a bone marrow biopsy.  How could I forget that one?  That was the one that hurt my beloved so badly.  They had to core some of the bone out of his pelvis while he was still awake.  And this was the test that eventually showed that he had MDS.  They merely took the marrow in the bones and looked at it under a microscope to make the diagnosis.  There were other tests that helped confirm the MDS, but the bone marrow biopsy was the main indicator of it.

Anyway, we didn't know the results right away.  For some reason it took three weeks for the oncologist to get the results back and analyze them.  Both the oncologist and we were still suspecting that the problem was the return of the Non Hodgkin's Lymphoma.

So imagine mine and John's surprise as we sat in Dr. Ford's office that day and he said, "I have some good news for you.  You don't have Non Hodgkin's Lymphoma John."

"Great!"  John and I both blurted out in relief at the same time. 

Then he quickly added, "You have Myelodyspalsia."

Little did we know that from that day forward our lives would never be the same. 

Suspecting something was wrong

This journal is for what is going on currently, today, in my and John's life.  And my feelings.  But for a couple of entries I wanted to share with you some recent events that led up to where we are now, just so everyone will have a little background.  Bear with me as I do so.  It is part of the story. 

John was diagnosed with MDS on June 16, 2005.  We will never forget those dreaded words as they came out of the oncologist's mouth.  "You have Myelodysplasia."  But let me back up for a minute.  I am leaving part of the story out.

About a year before the diagnosis of MDS, John was getting a routine blood test.  He was constantly getting these tests as part of follow up for the Non Hodgkin's Lymphoma he used to have.  The test showed anemia.  John wasn't surprised.  He had felt so tired and run down for so long.  As the months wore on, the oncologist did more tests, and told him that he still had anemia.

Meanwhile, in December of 2004, John proposed to me.  We were on cloud nine.  With the help of my parents, we were planning a wonderful wedding.  We were ecstatic at the thought of spending the rest of our lives together.  Our future was so bright.

Then a week before the wedding John had an appointment with his oncologist.  He came home and told me what the oncologist said.  "He thinks my cancer is back."  I thought I had been whacked upside the head with a two by four.  I walked around the week before my wedding in a stupor, trying to pretend nothing was wrong, keeping a straight face, because I didn't want my family to find out about it and worry.  I wanted to have a joyful wedding and then tell them.  It was a very hard thing to do.

The oncologist wanted John to have a battery of tests immediately before the wedding even started, and John told him "no", that he was going to wait until after the honeymoon.  We had the most beautiful wedding on the face of the earth, and a fantastic honeymoon, and then returned home to reality.

Okay, this entry has gotten long enough for today.  I will finish telling you how John got diagnosed with MDS in the next entry.       

My first entry

This journal is about John. I wanted to keep you all informed about him. It is also about me. I needed a private place to get out my feelings. I have a few close people in my life who don’t accept that I can have feelings, that don’t like me to show feelings; so I am making this journal private so that as I write I don’t feel constantly censored by them, and can write freely. But I wanted to invite each one of you that I have invited. Stay with me if you would like. Or drop in on occasion.

I guess I’ll start at the beginning. John and I met seven years ago, in the summer of 1998. We became very fast friends. Two months later we started dating.

And two months into our beautiful courtship John was diagnosed with Non Hodgkin’s Lymphoma. Stage 3B. I’ll spare you all the details. I’ll just say that he was told it was terminal, but would be given chemo, to live as long as possible, in hopes that a cure for cancer would be found in the meantime. Well, my determined John fought off the Non Hodgkin’s Lymphoma, and has been lymphoma-free for 6 years! He showed those doctors!

But a terrible thing has occurred. The very chemo that wiped out the Non Hodgkin’s Lymphoma gave him a new cancer. Yes, an entirely different, second cancer. It is called Myelodysplastic Syndrome (MDS). It is also known as Myelodysplasia. It is a type of bone marrow cancer.

I would be lying to you if I told you I understood what bone marrow cancer was. I read and reread the definition and can’t understand it. But I am trying to learn as much as I can to help John with his illness, and to help him prepare for his bone marrow transplant he will need in the future. I will write more about the bone marrow transplant soon, but I think this is getting long enough for now.

I hope everyone is in doing ok, love, Krissy