Tuesday, December 24, 2013

December 24, 2013

Merry Christmas everyone.

As I was laying in bed last night I couldn't help but think about the Bible verse that says something in effect to "in all things, give Thanks (Praise)".  I just couldn't stop thinking about that have to share.

This blog will not be my typical "cancer" blog but please bear with me.

I was laying there and wondering how in the world I could give thanks for this year.   It has been pretty rough personally the past 7 months.

May 19, 2013 - A tornado hit Little Axe, OK and damaged my granddaughter's house (not bad but that was the start).

May 20, 2013 - A large tornado hit Moore, OK and practically destroyed it.   I didn't know anyone personally but it is near where my kids and grandkids live.

May 20, 2013 - My beloved aunt, Shirley Rush, made her final trip home, very unexpectedly.   What a terrible call to receive but also what a wonderful homegoing it had to be for her.   Reunited with the Lord and all her loved ones, especially the love of her life, O C Rush who had gone before her a couple of years before.

May 25, 2013 - We arrived in Oklahoma for my aunt's memorial and received the phone call that no one wants to receive.   My mother, Anna Majors, had made that same trip home.   Talk about a double whammy.  I fully believe that she just could not face life without her baby sister who had left her just 5 days before.  Of course, I am sure they had just a wonderful reunion in heaven.   And I am sure my 23 year old special needs granddaughter, Katie Horn, who had gone on 3 years ago was standing there in her healthy heavenly body waving her arms over her head and yelling, "Hi Gommie.   Come on it.   It is wonderful here". 

All in all a few tough days.  After laying these two wonderful women to rest beside their spouses we made the long trip back to Tennessee.

I thought this was the worst time of my life.   How could I praise the Lord in this?  Well, neither of them suffered.  My aunt was out with friends and excused herself to the powder room.  She did not come back.   No time for her to linger and suffer.    That was certainly a praise.

When I received the call about Mom, what could I say.   I had just talked to her a couple of days before and she sounded so strong and in control even after losing her baby sister.  Only 2 days later she was gone and did not suffer.   That's a praise.

Either of these ladies could have lingered and suffered for days, weeks or even years.  What a wonderful way to go home. 

Because I have had some physical problems with my collar bone for almost 2 years I had a flair up with it on the emergency trip home.   I did not have my motor home that we live in that is pretty perfect for me (high toilet and a high bed so very handicapped accessible for me, even have a 6x6 deck to make it easier to get in and out).  Since trip was unexpected we were not able to secure handicapped motel accommodations on the trip.  We stayed with family 2 nights but they are not set up for my special needs either.  So by the time I got back I was having a big flair up of the worse kind.

I went to physical therapy and my doctor.  They said since I had swollen lymph nodes that I needed to see a colon doctor.  After a colonoscopy that came back clear, nothing else was said about it so that's a big Praise.

But my physical therapist, Heather, was not satisfied.  She felt that I needed to see a specialist about the collar bone since it kept happening.  She found me a doctor, Dr. Edwin Spencer, Jr., in Knoxville and I was able to get in within the month.   That's a praise.

August 16,  2013 - Dr. Spencer diagnosed me with cancer!    What a dock in the teeth!   How can you praise the Lord with a diagnosis like that.    My first thought was that I was thankful that my mother was not here to have to hear that diagnosis.   Praise the Lord.  Of course, my next thought was "I want my mommy".  But the prevailing thought was that I was glad she did not have to go through with me.   She had cancer years ago and so did her sister.   They had suffered enough with going through it personally and had survived it for years.  

My doctor made me an appointment with an oncologist for 3 weeks.   I just couldn't wait that long.  I would have been a basket case.   So I got on the computer and found my own doctor who got me in for my first visit in 4 days.    PRAISE THE LORD.

After intensive tests, biopisies and CT scans, Dr. David Aljadir, at University of Tennessee, found I had not only one kind of cancer, but two.   Where's the praise in that?   Well, the biggest involvement of cancer is bone cancer called multiple myeloma.   But the surprise is that I also have lung cancer!   Where's the praise?

Well, the praise is that the lung cancer was caught very, very early and only because of the collarbone problem.   For those who have followed my blog you know that things have moved along quite quickly.  I have had treatment on the lung cancer and they think that it should be completely gone when I have my next CT scan on it in early February.  PRAISE THE LORD FOR THAT!!!

We came come to Oklahoma for treatment of the multiple myeloma.  This is where our family is.  PRAISE THE LORD that I am blessed with wonderful family and that most of them are here in the Oklahoma City area.  Lots of support at a time when we needed it. 

A beautiful daughter, Tammy Horn, and her family including her husband Mark, and a grown son, Mitch Horn, and his family, Stacy, Jordan, Trentyn and Ashlyn.   Daughter, Grandchildren and greatgrandchildren wonderful.  PRAISE THE LORD

A handsome son, Paul Clark, and his wife Amy.  A grown daughter, Mallory Clark, and her family Colby Cox, and children Jordyn and Karman.   Also a grown son, River, and an almost grown daughter Cassidy (a senior in high school this year).   My daughter-in-law Amy is so supportive since son Paul works away from home.  That's wonderful to have such support.   ANOTHER PRAISE!

Another son, Conley Clark, and his sweetheart April are only about an hour away.  I am so blessed.   ANOTHER PRAISE.

Finally, we have one more son and his family only about 3 hours away.   Robert Clark, our youngest), his wife Julie and their three sons.   One son is grown, Josh Slater and lives about 2 hours from here.  The two youngest boys are still in school, Glen Clark, is 13 and Tyler Clark is 11.  Another wonderful, supportive family even though they cannot always get away at the time they would like due to his work.  PRAISE THE LORD Again.

Three wonderful sons and a beautiful daughter.  
Also have brother, Gary Majors, and his wife Colleen, and their 3 grown children, Carrie Jones and husband Dave, and her son Zach; Rebecca and her daughter _____ and son Gary, Jr. and his sons Christian and  and sister, Stacy Turner, and her husband Ken and her children Chelsie, Canon, Caydon and  Katelyn all here close (within about 2 or 3 hours).   Well, Chelsie and her family have moved to Colorado for his work. They have three beautiful children.   But the rest are all within 2 or 3 hours of here.  Another Praise.

I also have a brother, Steve Majors, who lives in Ecuador.   A long way away but Skype makes his so close.   We are collaborating on a project of his so I talk with him almost every day.   That is more often than I did when he was in Nevada.   Another PRAISE.

OK.  So you see, I have much to be giving the Lord praise about.  Now for the update on this crazy disease.

I have now had 3 chemo treatments and no side effects.   My chemo is given in a shot, a simple injection into my arm or stomach.  A cycle is 21 days.   I receive 4 injections in two weeks, 4 days apart.  Then one week off with no treatments.   I take 40mg of steroids on days 1 thru 4 and days 8 thru 12.   That's it.  Cycle 1 will be complete when I see the doctor on January 2.   We will see how the cancer is responding to the treatment then.  Absolutely no side effects.   PRAISE the LORD.

I have been told to take Meletonin for sleep (prescribed by the doctor).   That was not the thing to do.   I have been out of it for three days and I only took the medicine 2 nights.   I was fuzzy headed, blurry eyed and had stopped up ears.  Totally not good.  But I have that medicine out of my system now and I feel great.    PRAISE THE LORD.

To each of you who have read my blog for the past few months I wish you all a very Merry Christmas and a very prosperous new year.  We are spending Christmas Day with our daughter and the following day with our son Paul.   Don't know if we will see the other two because of their other family obligations. 

PRAISE THE LORD for all he has done for us this year.   It draws me closer to Him daily. 

HAPPY BIRTHDAY, Jesus.  Thank you for coming to earth as a baby to live among us as a man.  But most of all, thank you for dying for my sins.   Although I do not feel worthy, I am so glad that you consider me worth.

Jean




Tuesday, December 17, 2013

Finally new information

Hello everyone!

I know it has been a long time since I wrote anything but there has been nothing to report.  But there is now, finally.

After fighting for weeks with the insurance I finally have coverage and my treatment could proceed.  Although I was supposed to have coverage starting Nov 1 the insurance (Blue Cross/Blue Shield) did not get me in their system until Dec 1.   (But they got their premium, but that's a different story).  Big push for me was my doctor was leaving Dec 4 until Dec 26 (out of the country).  She needed to write orders but didn't want to do it until insurance approved treatment or I would have to pay all of it.

So, finally, yesterday I had my first chemo treatment.  I was told I would see a pharmacist, learn about chemo and it's side effects and get my first shot.   I guess I was na├»ve but I expected to be in a room, like an exam room.   Instead they took me into the chemo area.    For those of you who have never been there (and I had not) let me explain.   At Stephenson Cancer Center at University of Oklahoma Health Sciences complex it is a very, very large area.  It is then divided into sections with 8 places for patients, complete with nice recliners and an IV pole for everyone.  You can have one visitor with you.  A nurse is assigned to you for the day and she also has other patients.  

When we walked in there were 2 other patients.  One lady appeared to be pretty ill.   We did not visit with her.  The other lady was a younger woman.   I just started crying.  Could not hold back the tears.   It really hit me.   I have cancer.   Yes, I have been blogging for months about this and I thought that I had really gotten a hold on it and my emotions.   But there is something about walking into the Chemo room that really got to me.   It took almost 30 minutes for me to get it together.  But then I was OK and started visiting with the younger woman, who was near me. 

She is 44 year mother of a 3 year old.  She has cancer that has spread to her liver and has already had surgery but still has tumors.  She will have chemo for the rest of her life.   Then a 35 year old mother of two, ages 3 years and 6 months, has brain cancer.   They are both very upbeat and it was encouraging to me. 

Just before I left a man probably in his 60's spoke up and told me he was getting the same chemo medicine for the same type of cancer that I have.  He is on his 3rd cycle and said he has had no side effects.  That was also encouraging.   

I was feeling a little dizzy when I left and a little light headed but thought it was because I had not eaten lunch.  We went to Golden Corral to eat.  By the time we got home I had a touch of a headache which got worse as the night progressed.  I went to bed about 9 and watched some TV propped up on two pillows.

I took one benedryl and one over the counter Iubeprophen to help me sleep.   When I got ready to go to sleep and took the extra pillow out I got so dizzy.   Couldn't close my eyes because my head was spinning.   Couldn't keep my eyes open because the room was spinning.  I was also very hot.   Had Keith get me a cold washcloth and put it on top of my head.   Guess that was the 'flushing' side effect.  I put the extra pillow back and finally got to sleep.   Then woke up when Keith came to bed and moved down to the other pillow in small steps.  I was able to go to sleep and no dizziness.  Got up about 4 this morning feeling fine.

I am sure I will have to take a nap sometime today.

I have increased uric acid levels so they put me on Allopurinol.   I took one last night when we got home and another this morning.   I have to go have another blood test about noon.   If the levels are dropping then I just have to finish taking them for 10 days.   Otherwise they will give me an IV dose this afternoon after they get my blood results.

Thursday I have an appointment with a Neurologist.  This is to evaluate the pain that I have as a result from post polio and the bulging disks in my low back, neither of which is related to the cancer but they don't want to not address the pain.  Maybe he can give me something for the arthritis because I know what that is.

Thursday afternoon, after that appointment, I have chemo again.  Chemo again on Dec 23 and Dec 26.  Then I have no chemo the following week.

A cycle of this chemo is 21 days.   Day 1 and day 4 I have chemo, day 9 and 12 I have chemo.   Then no chemo for the rest of that 21 days.   Then the next cycle starts.

My next appointment with my doctor has been moved to January 2.  Every time I get chemo or see a doctor they will draw blood.   Guess I have to get over my hatred of needles, huh.   If I was getting my chemo through an IV I would have a port and they would draw blood from there.   However, I just get a shot.   But I am good with that.

At some point I will get a port just before I have my bone marrow transplant.   My granddaughter, Cassidy, graduates in May and we are hoping to have me able to go to the graduation.   I have to talk with my doctor about this when I see her in January.   Maybe I can get back to work before a full year. 

I have been hired at H&R Block for the tax season here in Midwest City.   It is only 3 miles from home and they will work with me on my schedule to accommodate doctor visits and chemo.   Of course, if they schedule the transplant before April 15 I will have to quit but I have told the manager about it and they are understanding about it.

We had Thanksgiving 3 days in a row.   First was with our son, Paul's, family.   Full dinner.  Daughter in law is good cook and her mother and brother were there.   Friday we were at daughter Tammy's.  Again full dinner and as usual it was delicious.  She is also a good cook.  Saturday we had all our kids at Tammy's house.   We had soup and pizza.  It was really nice.   All of the kids were there except our son Robert who lives in Texas and was unable to attend.   We took lots of pictures and did a lot of visiting.

That's about it.  More later.  I have to eat breakfast so I can take my 10 steroid pills.   Always something.

Jean

Wednesday, November 20, 2013

1st Visit with Dr. Yuen in Oklahoma

Wow, yesterday was rough!

I was looking forward to meeting my new doctor and getting things going so I could get my bone marrow transplant and be "cured" of cancer. 

At least that is the way I understood it from the doctor in TN.  He said (or at least I heard) that with the bone marrow transplant I would be cured of the multiple myeloma and not have to worry about it coming back.

Well, guess what?   THERE IS NO CURE!!!

Yes, that's the way I felt too.  I felt like I had been slapped in the face, punched in the gut and slammed to the floor!!!!!  

OK.   Now that bit of information is out of the way I can tell you that I really loved the Stephenson Cancer Center at the Oklahoma University Health Sciences Complex in Oklahoma City.

When we arrived the valet was extremely friendly.  We told him it was our first visit and he pointed the way to just inside the front door to the receptionist.  She told us exactly how to get where we needed to be.  But there is a wonderful cafeteria right there on the first floor which smelled really good.  We didn't go over to look but were pleased to know that hot food is available. 

I went to the Hemetology Oncology section of this building.  Everyone that I was in contact with is a member of the Transplant Team.  Really was not expecting to be immersed into all that on the first visit but I guess it is really good (but a little intense, too, since I had only been told I was going to be evaluated for the possibility).  But after doing the first time patient paperwork I met Rick Cunningham, a social worker for the transplant team. 

He is the one that delivered the No Cure statement.  He let us know very early on in our conversation that "This is not a cure.  It is to put the multiple myeloma into remission.   There is no cure."  Very straight forward but I guess that way I cannot say that I still thought there was a cure.  So no misunderstanding him (and even later the doctor) and undue expectations about what will happen.

He explained to be about treatment, suggested a place to stay in the RV that is a little closer to the hospital (but I don't think we will move unless it is a lot cheaper), and basically visited with us about how important it is that I have a good caregiver.  When I go into isolation Keith can come in and out as long as he is not ill but I will not be able to have visitors "with diapers" so the little ones can't come. 

Rick talked with us about how we each felt about the transplant and recovery time needed.  After explaining to him that I hope to return to work as soon as possible we found out that I will need to be here in OKC for about a year!!  Really don't know how we will be able to do that financially BUT I will trust the Lord to provide.  (Just wish I knew how, though!  LOL)

Then I received a book that outlines the transplant procedure completely, from telling what each person we meet will do by their title.  I was given a little time to look through that and then the doctor came in. 

Dr. Carrie Yuen is a petite Asian woman (about 4' 10") and very soft spoken but she knows her stuff.  She spoke to us at length about the transplant, the testing that is needed including another bone marrow draw, Ouch!, blood work and a 24 hour urine test.  There may be other things after these are completed.  Don't have to do the bone marrow yet but it has to be done before the transplant takes place.  The process starts with receiving authorization from the insurance company.

The course of treatment she selected is for me is in three steps:

1.  to have the chemo drug Velcade which is injected into the abdomen or thighs so I won't need a port at this time.  I will get two shots a week for two weeks and then have two weeks off with no shots or treatment.  That is a course, 28 days.  She suggests 3 to 4 months of this treatment.  Then they will test to see how I am responding.  When mostly cancer free we move on to the 2nd step

2.  Next I will receive some type of medicine to make my white blood cells multiply and to cause my blood to make more stem cells, etc.   Not exactly sure what all goes on but after this medication I will have to have my blood drawn (collected) and saved.  This will take about a week for medication to work and have the blood drawn in two or three times.  They will make sure no cancer cells in it and freeze it.

3.  I will enter the hospital and go into isolation.  I will be there 10 days minimum and 30 to 45 days maximum barring complications.  At that time I think I have to have a port put in.  For anyone who does not know a port is inserted in your skin surgically.  In lay terms it's like a permanent IV line except it usually has three openings.  It is used for lots of things like blood draws, transfusions if needed, receiving chemo while in isolation and to administer other drugs as necessary.

I will receive 3 or 4 days of intense chemo at that time to kill off any remaining cancer cells and of course it also kills off some good cells.  At that time I will probably lose my hair (no big deal to me - just give me hats to wear).  I cannot be around anyone who is ill even with a runny nose because if I get an infection at this time it would be really hard to fight it off. 

Then I will receive my cleaned blood that was drawn in step 2.  It will take about a month for my blood to have enough antibodies built up that I can come out of isolation.  While in there I can have my computer (but they don't provide internet, I have to work on that part!  I will need to be able to blog, email, etc), I will have a phone and can read, etc.   I even get 24/7 room service and nursing.

The unit is only 8 beds so I am expecting excellent care.   They want me to get up and move around to keep my strength up. 

SO, that is the course of treatment.  After all that I have to be careful for another few months about being around large crowds of people because my resistance to illness will be very low.  All in all Dr. Yuen said it will be about one year before she will feel comfortable in my returning to work away from OKC.  Of course there will be followups for ever.    

But the prognosis is good, just not excellent.  There is the probability that the multiple myeloma will return somewhere but hopefully not any time soon.  And if I can go 10 to 15 years without it coming back I will be extremely happy.  Now, that time period is my own not from the doctor.

Anyway, to end this on a much lighter note than I started, we are extremely hopeful that this treatment will work and put the multiple myeloma in remission and that it will stay in remission for a long time. 

As far as being home, well it has been great.  We have been here about 10 days and I am worn out with visiting but also needed to be with family after being away for two years.  Our granddaughter Cassisdy is a senior this year and has a research paper due before Thanksgiving.  So we are getting together every night for me to help her with it.  And, yes, it is just help.  I am making her do all of it, just here for her to bounce her ideas off and help keep her focused (she would rather just visit with us and text her boyfriend).

The great grandkids have grown so much since we saw them briefly in May.  And they remembered us.  I was so glad because we had not seen them but such a short time.  Of course, having Buster, our dog, with us certainly helped, too. 

I am trying to go to work for H&R Block for the tax season.  I believe I can get through most of tax season before they do the transplant.  That money will certainly help.

We visited a church in Mustang (a suburb of OKC) on Sunday and it was wonderful.  But it is so far over there and the church is so big.  We prefer a much smaller church so will be looking for a church home over the next couple of Sundays.

I really didn't intend for this to become a book but sometimes I just get carried away, I have so much to tell you.

I love and miss each of my friends but know you are all praying for me and that really helps a lot.
We can receive mail directly here at 2701D Debbie, Midwest City, OK 73110 so would love to hear from any of you.

Have a wonderful day,

Jean

Thursday, November 14, 2013

Oklahoma update

Well, we have arrived in Oklahoma.   Actually got here Monday, the 11th after leaving Tennessee on the 4th.  We stopped in Texas for a few days at Eisenhower State Park.  Had a visit with our son and his family before moving on to Oklahoma.

Before we left our wonderful crew in Texas gave us a wonderful parting gift.  They gave us a gift card for fuel.  It was very unexpected and greatly appreciated.

The Lord is so good at taking care of us, isn't He?

Then when we got close to Oklahoma we found out that the RV park where we planned to stay did not have any openings.  But we were lead to another park (only a few miles further from the medical complex) that is a few dollars less per month an is absolutely wonderful.  We are set up on a beautiful new slab (so no mud to continue with after a snow or rain) with plenty of room to set up our trailer with full electric so we can work on our toys (and possibly keep a little income coming in). 

The first appointment with the Stephenson Cancer Center at University of Oklahoma Health Sciences is Tuesday, November 19.  I am scheduled to see a Dr. Yin (Yen).  Don't know anything about them but I am certain that it will exactly the Doctor that I need to see. 

We are also planning on visiting the Mustang Church of the Nazarene with our daughter this Sunday.  Our pastor and his wife are friends with members there. 

Will post more after seeing the doctor on next Tuesday. 

Keep praying for me as I know that's why things are going so well.

Jean

Friday, November 1, 2013

November 1, 2013

WE ARE GOING HOME TO OKLAHOMA!!!!!!!!!!!!!! YEAH.

But I have to catch you up, first.

Friday, Oct 25 I got a call to start my cyberknife treatments on October 28.   So I had a treatment for three days, Monday, Tuesday and Wednesday.   The treatments lasted about 1.5 hours and so far I have had no side effects other than a little soreness in my back caused by laying flat of my back for that hour and a half each day.  I may have a few other side effects but whatever they are will be nothing compared to the 90 to 95% cure rate for this type of lung cancer that I have/had.

I also saw Dr. Aljadir on Monday the 28th and he is trying to get me an appointment with the Stephenson Cancer Center at the University of Oklahoma in Oklahoma City.  They will treat me for the multiple myeloma and I will have a recheck for the lung cancer in January.

I am so glad to be going on to this next step for getting rid of this cancer.

Because of our friend John we were able to go to church together last Sunday and had a great time with our church family at a final lunch after the service.   Almost 30 people turned out to tell us goodbye.  We even accused one man of wanting to buy fuel for the motor home just to get rid of us.  He denied that (and did not buy any fuel, which we did not want, anyway).  

On the last day of treatment, Wednesday, we met with Ray and Donna Couey (our pastor and wife) and Gary and Bonnie Honea (our closest friends at church) for the final, final contact with our Knoxville-area friends.  It was bittersweet as we ladies tried not to cry, but we were not very successful.

Now we have been trying to finish up everything else and keep ourselves busy until we can leave on Monday, the 4th.

Our replacement crew will be here on Sunday so we can show them the ropes, we will work Sunday night, and then they take over as of Monday.  We leave before noon (as soon as the dog gets groomed) and away we go.

Going to Denison, Texas to visit our youngest son and his family before going on up to Oklahoma City.   We always look forward to having our two grandsons, Glen and Tyler, visit with us at the lake when we get to see them.  It has become a tradition that we spend our time with them so we can have cookouts and fish for the weekend.

THIS JUST IN:   Got a phone call from the doctor's office.   I now have my first appointment in Oklahoma, November 19 at 2:00 pm with a Dr. Yin (or Dr. Yen).  They didn't tell me how to spell it but it doesn't matter.  I am on my way toward getting cured.

I will keep posting to this blog to keep all my friends and family posted about the treatments.  Love to get your comments.   And, Gary, I can't wait to get home either!   Looking forward to seeing you and your family soon.

Love to all.   I probably won't post anything else for a few days but I do appreciate your prayers and thoughts.

Jean

Saturday, October 26, 2013

More amazing info

Well, I got bad news when they looked at the CT scan done at the last post.  The gold fiducials there were inserted are NOT in the tumor like they are supposed to be.

So I had to go back in for yet another CT scan.   The good news was that the tumor doesn't move very much when I breathe so we are good to go for the CyberKnife.

The bad news was that they couldn't get it started until October 28.

But more info:  We are going home!   After 2 years we are returning to Oklahoma for about 6 months.  We officially will be relieved from our job on Monday, November 4 at 6:30 am (after working Sunday and Sunday night).

Our replacements will be here on Sunday for us to go over the paperwork so they know what they need to do.  The job will actually last until Thanksgiving but I need to be in Oklahoma starting my treatments on the bone marrow cancer before that.

Our friend will work for us tomorrow so we can both go to church (at the same time).  Our friends at church want to have lunch with both of us to say goodbye and we are really looking forward to it.  Not the saying goodbye but having lunch with all the friends and especially being in church together. 

My Cyberknife will be Monday at 9:30 am and the Tuesday and Wednesday at a time to be determined after the first visit.   I have been told that I may be on the table for up to three hours (flat on my back).  But we hope that it will not be that long.  The length of time will determine what time the appointments will be on Tuesday and Wednesday.

I also have an appointment with Dr. Aljadir Monday (at 9:15 am).  I have contacted them and they are going to accommodate me to see the doctor when I am finished with the CyberKnife.  From him I hope to learn who I am to see in Oklahoma and when.  Then I have to change my insurance so I have coverage to the doctor that I am to see there.

More Good News:  Social Security determined that I would get more money than they first thought which will certainly help since we will not be working on a job. 

God is so GOOD.  He is taking care of everything.

When we leave Tennessee we are going to our son Robert's for a long weekend.  Then on to Oklahoma City. 

Have a great day everyone.   I know I will.

Tuesday, October 15, 2013

Getting Closer to being cured!

October 15, 2013

I have had two weeks off since my lung procedure to insert the gold so today I got to see Dr. Kelley who checked me out to make sure I was healthy to have the CyberKnife done.  He gave me the all clear and I had a CT scan which they will use to plan the Cyber Knife treatment. 

Dr. Kelley said they will probably do that procedure for 3 to 5 days depending on what they see on this CT scan.  That will be done next week.

I then have an appointment with Dr. Aljadir, the medical oncologist, on the 28th.  He is supposed to be setting up a transfer of my treatment to OU Health Sciences Center in Oklahoma City.

Our job is supposed to be over by the first week of November and we are heading HOME!!!!!!!!!   I am so excited.   We have found an RV park that is 15 minutes from the hospital/doctors where I will be receiving treatment.  There is a Nazarene Church within a two mile radius so we can go to church near where we will be staying.

And I am hoping to get work at the H&R Block office in the neighborhood (again within a 2 mile radius of the hospital).   This will help us while we can't take a monitoring job and will give me something to do.

The Lord is just working out things for us in such an amazing way.  Can't wait to see what the next step is going to be.

Hoping to be in Oklahoma City before Thanksgiving!  I am ready to go Home and see my family.

Have a great week.

Jean

Thursday, September 26, 2013

God is so Powerful!!!

I am feeling so blessed today.  I just had to share.  God has had his powerful hand in all of this illness (as he always does, but sometimes we just don't see it!).  He has been making Himself known to me in such wonderous ways.  I just have to list all of this in one place.  I am certainly learning that things do happen in in His time.

1.  December 14, 2011 - first experienced severe pain in my right collarbone and the bone moved.  Pain finally eased but bone stayed out of place. 
2.  May 30, 2012 - Trying to get up from the ground where I had been sitting doing some work experienced severe pain again.  Went to physical therapy and they were able to place bone back and relieve the pain.  Still had a knot.  No doctor would address the knot.  They all wanted to talk about my shoulder although I wanted them to address the collarbone.
3.  November, 2012 - went to Cherokee with church and threw the collarbone out yet again.  Severe pain.  Again physical therapy to relieve the pain and again the doctors ignore the knot on the collarbone.  I felt the bone was out of place.

Ok, you ask, where is God in all this.  Oh, He was there all the time.  I just wasn't seeing Him in all this.  That sounds typical, doesn't it?  Please just keep reading.

4.  May 20, 2013 - My aunt died in Oklahoma.  I made arrangements to go to the funeral and to be with my mom.  Only problem was, Mom died on May 25 before I got there.  It was a very fast trip from TN to OK for this double funeral and we stayed when and where we could for accommodations (no handicapped motel rooms available when we would stop on the spur of the moment).  So I called back to the doctor and physical therapy to have it scheduled for when I got back.

(this is where it gets good)

5.  June 3, 2013 - Went to physical therapy but this time the pain was different and the knot on my collar bone was different.  My physical therapist insisted that I see a specialist in collar bone and shoulders.  He saw me in July and ordered

6.  August 6, 2013 - Diagnosed with cancer in 4 places.  Hang on, now, it gets so fast. 

7.  August 12, 2013 - Oncology appointment with Dr. David Aljadir.  He sent me for bioposies and to be evaluated for radiation.

8.  August 27, 2013 - Radiation appointment with Dr. Joseph Kelley. 

9.  September 4 thru September 17, 2013 - 10 days of radiation on my collarbone and T-12.  The knot on my collarbone is smaller. 

10.  September 16, 2013 - Dr. Aljadir told me lung cancer can be completely cured with CyberKnife.

11.  September 17, 2013 - Dr. Joseph Kelley sent me to a pulmonary doctor and told me I will be scheduled for CyberKnife no later than the end of October.  I committed to staying in Knoxville area until then for this treatment even though we think the job will finish up the end of September.

12.  September 20, 2013 - Pulmonary doctor - Dr. Paul Branca - made me an appointment for placing gold fiducials.

13.  September 23, 2013 - Insertion of fiducials (5 pieces of gold about the size of mustard seeds).

And now, the topper...

14.  September 25, 2013 - Received word that our job is extended yet again (we thought it would be over in March of this year but keeps getting extended a little bit at a time).  This time they have enough funding to go until....... End of October or 1 week in November!  

God is so good.  He has not only put me and kept me in this area for diagnosis and treatment.

And He keeps us employed so we can afford to stay here.  He got me to the right Cancer Center (University of Tennessee Medical Center) and to the right doctors.

3 doctors - named David, Joseph and Paul (all good Bibical names)
Immediate appointments when others could not get me in for three weeks.
Gold fiducials about the size of "a grain of mustard seed".
Extension of job to just exactly the time we need to get this first phase of treatment.

And, if you have read this all the way through, I appreciate it.  And if not, well, it has been good for me to list it all as a reminder of how good and powerful God is and to remind myself to watch for God in everything.

Thank you, Lord, for all these reminders that you are in everything,  Help me to never forget that and help me to praise you in all things.     Amen.

Humbly,
Jean

Wednesday, September 25, 2013

Latest Update

Well, it has been a while since I wrote.  To be truthful, I forgot my password!  That is so crazy.  I never forget my passwords (and I have a lot of them).

But this blog is about my cancer diagnosis and treatment and my feelings and thoughts.  So, here goes.

On Friday, September 20 I saw the pulmonary doctor who then informed me that I was scheduled for a CT scan that same day.  So I got two appointment for one trip.  I like that.  I also had to do some breathing tests.  Guess they wanted to do as much in one day as possible.

Then, I was scheduled for the placement of the gold into the lung tumor.  They are called fiducials and are to help guide the CyberKnife.  I just didn't expect to have this procedure quite so quickly but I am glad that it was done.  They went down my throat, and into the lungs.   They placed 5 small gold pieces (about the size of a grain of mustard seed).   While they were in there they also biopsied a couple of lymph nodes that are between the lungs.  Not that they think there is anything there but just to be on the safe side.  Better to do it while I was comfortably asleep (thanks to Propopal, yes, the Michael Jackson drug) than to have to face another biopsy later.

I am having a little problems from the procedure but none that are unexpected.  Any time they disturb the lungs and that whole area there is a little discomfort and coughing.  That's about it. 

Now I have to wait for the results of those lymph node biopsies.  If there is not any disturbing there we will still have to wait 7 to 10 days before the next step.  This is to give the fiducials some time to settle down in the tumor.  Apparently they will possibly shift some for the first few days.  Then after they settle the next step will be to have a CT scan to mark out the path of the CyberKnife.  Then another wait while the Physics Department details exactly how the CyberKnife will work. 

The way I understand it the CK (for short) will go around my body in a 360 degree circle.  Imagine the face of a clock.  It has 60 minutes.  Well, the CK will hit 100 points on it's way around.  Each time it will connect to one of the fiducials so it is always exactly on the tumor.

Only 3 to 5 treatments lasting about 2 to 3 hours and that tumor will be gone, probably to never return.

Oh, yeah, and I get to keep the gold!  The tumor will die leaving just scar tissue.  The gold will remain in there.

So, just remember the next time I see you, I am worth more than I was the last time you saw me.  After all, gold is worth a lot these days.  LOL

My general health is still very good (as good as it ever was), my spirits are great and I am looking forward to getting this cancer out of my body so I can quit having so many doctor appointments.

I have many other things that I want to do including working on our wooden toys and games, taking them to craft shows and working on our web site.  If you haven't checked it out go to www.travelingtoymaker.com.  Doesn't look too bad even if I do say so.  I have prepared it with a LOT of help from my brother Steve.  We have very interesting lessons over Skype.  He is in Ecuador, I am in Tennessee.  But he is an excellent teacher and is very patient with me, even when I am being thickheaded.  Thanks to him it is looking good.  Now we have to wait to see if the public finds it and wants some of these awesome toys.  Wish us luck.  I would love to be able to make enough money on the toys that we could actually not work so much and still be able to do some traveling.   We can do this because we have our workshop in the trailer that carries our car.  So we can be anywhere and still make toys.  I love it.  Wish we had done this years ago.

I don't have any appointments scheduled at this time.  I am enjoying not having to go to Knoxville this week and I'm sure that Keith is glad to have a week of not taking me.  He does not like hospitals and sitting around and waiting but he is being a great strength.  Our pastor showed up Monday to keep him company and make sure he ate lunch while waiting for me.  Thanks, Pastor Couey.  Really appreciate it.

I am taking our toys to a craft show on October 5 and sure hope it is nice weather because it is outside.  Keith can't go with me but I have a friend who will be there with her stuff.  She and her family have offered to set up the tent and tables and help me if I need it.  I really appreciate that.

Have a great week.  I know I will.

Love to all,
Jean

Monday, September 16, 2013

Latest report on biopsies and other info

What a wonderful weekend!

The weather was absolutely beautiful, in mid 70's and low 80's days, and mid-50's at night. 

And there's something about being told you are have not been given a death sentence that makes every day more wonderful.

After the doctor called on Thursday and told me that the lung cancer is actually confined to the lung and can be treated, I felt as if a weight was lifted off me.

Today we sat that same doctor to get his plan for my recovery. 

1.  Kill out the lung cancer by using the CyberKnife for 2 to 5 treatments.
2.  Chemotherapy (several, number not specified, cycles).  The therapy he has recommended is a combination of 2 things.  Shots to be given in my stomach, not through IV or port.  A cycle is 28 days.  One shot per week for 2 weeks then off two weeks.   I think even I can handle that.
3.  A bone marrow transplant.  This is an option that would probably extend the time before the possibility of the cancer returning for 10 to 15 years.

He has recommended that I go to Vanderbilt in Nashville, TN to be evaluated for the possibility of the transplant.  I have told him that I would prefer to have that evaluation (and possibly treatment) in Oklahoma where my family would be closer.

This transplant would consist of the following steps:
1.  I would have to be evaluated to see if I am a candidate.
2.  I would have to accept having that treatment.
3.  I would take chemo until they get rid of the cancer.
4.  They would give me shots of something  to make me produce more white cells.
5.  They would draw my blood (not bone marrow) for two days straight. 
6.  They would store this and be able to pull out the items needed for the transplant.
7.  They would give me intensive chemo and I would have to be hospitalized in isolation during this time.
8.  When my body was ready (all bone marrow killed) then would then give me the transplant but it would be my own marrow and cells.
9.  I would stay hospitalized for another period of time, in isolation, until recovered (another 2 or 3 weeks).
10.  This would extend my life by several years.

I would certainly like to hear any feedback that you can provide.  I don't know even if it is a good thing to do.  He said he would not even suggest it if I was 80, but since I was "a young woman" (his words, not mine, for all those who are laughing right now).  I thought it was a great compliment since I am applying for my Social Security this week (I will be 65 in February).!!!

The reason he would do the chemo as listed above is to make me eligible to do the transplant.  If I chose not to do the transplant the treatment would be different and more aggressive.

I see the Radiation Oncologist tomorrow to do my final radiation treatment and find out when he will do the CyberKnife.   

Part of my question is whether the job will last long enough to do the therapy.  When this job is over we will be going to Oklahoma.  But the doctor says that this treatment can be done anywhere.

I also see the pulmonary doctor on Friday.

Will not post again until after the Friday appointment, but do hope to hear back from some of you to help me make this decision on the transplant.  You can call 918-284-9117, email or reply to the blog. 

Looking for a little feedback,
Jean


Thursday, September 12, 2013

God is still in the Miracle Business

After being told on Monday that it was possible that I might only have 12 months to live if the remaining spots were Lung Cancer, the biopsies came back with those spots being multiple myeloma.  PRAISE THE LORD. 

My doctor, Dr. Aljadir, personally called me at 8:10 am after he presented my case to the tumor board this morning.  He said, "I thought you might like this news sooner than later and that it might help you have a better weekend."  He then told me that they will be able to treat the one incidence of lung cancer with the CyberKnife in about 3 treatments.  That will be wonderful.  I can handle that.

Will find out all of the details of treating the multiple myeloma (chemo) on Monday and then will let you all know, but had to share this great news now!

GOD IS STILL ON THE THRONE.

A much happier person this evening,
Jean

Tuesday, September 10, 2013

And I thought yesterday was bad!

September 10, 2013

Well, after practically being given a death sentence of one year yesterday, today has been such an up and down day.

I had radiation scheduled for 9:00 am and triple biopsy (not bypass, but biopsy) today at 10:30 am.  Well, Dr. Kelley, the radiation oncologist wanted to see me after my treatment.  Not an unusual thing, since he sees all radiation patients once a week and I had just completed by 5th treatment.  He explained that he has been talking with Dr. Aljadir, my medical oncologist, about my case and they really thing the biopsies today are going to show just multiple myeloma and not lung cancer.  If that is the case then Dr. Kelley says that three treatments with the CyberKnife will take care of the lung cancer and there is a 95% cure rate and it never comes back.  (Emotion 1:  Relief)

I then asked him about the size of the tumor on my T12 spine.  He showed me a CT scan picture and that tumor is taking up over 1/4 and almost 1/2 of my vertebra.  For the first time I realized that if it is allowed to progress it could cause paralysis if it gets into the spinal cord.  (Emotion 2:  Being really scared)

So, then I went to the IR (Interventional Radiology) for the biopsies.  I was so distressed that the wonderful nurse who has taken care of me the other two times, Tammy, hugged me and let me cry.  (Emotion 3:  Relief at being able to say how scared I was and being comforted)

Then the doctor came in and said he was not going to do biopsy on T-12.  (Emotion 4:  Anger)  I explained as calmly as I could to the doctor (and I was not very calm) that I was weary and exhausted and financially hurt by having to come back for biopsies all the time and now they were not going to do one of the biopsies.  Besides the toll that it takes on my body (my blood pressure goes up to about 238/105 every time I go in there, even with medication), having to have the different parts of my body invaded as they take tissue and/or bone pieces during the biopsy, and financially the fact that it costs me $150 copay for every one of these procedures, the emotional impact is just dragging me down.  And now he tells me he is not going to do one of the three biopsies that the doctor asked them to do.

I then pulled out my doctor's orders and asked this doctor if that meant that this paper was not worth anything!!! I was so mad.   Then he said something that brought on another emotion (Emotion 5:  Thankfulness).  He said as a doctor he has to "First, do no harm".  He went on to explain that there was a certain risk to doing the biopsy on the T-11.  That I could be totally paralyzed from the waist down (Emotion 6:  Fear)  Just didn't realize that danger existed in doing the biopsy.

They gave me Versaid and another drug so I was not in pain and did not remember the biopsy on my hip.  I was awake off and on while they did the biopsy on the lymph node.  But it didn't hurt.  When I went to recovery and found out that I could finally eat today (had not had anything to eat or drink since midnight last night and it was now 3:00 pm) I had the final emotion of the day (Emotion 7:  Happy).  I was happy that I could eat.

Oh, yes, and Keith was able to visit the medical oncologist office and reschedule my appointment with him to Monday, September 16 instead of the following Friday.  So we will find out all the results that morning.  (Emotion 8:  Relief)

So yes, this was a day of ups and downs, highs and lows...  well, you get the picture.

I am already so tired of all this running and I told Keith today that I could see why some people just give up and don't want to pursue treatment any more.  Not that I am there at all, but I just can see why after a few years that a cancer patient can get to that point.  This trying to get well is exhausting, taxing on your body, and very well worth it!

So, now I will be posting again on the 16th after I get the results.

I hope everyone's day has been smoother than mine.  In fact, I hope you have had an excellent day!!!

Still trusting the Lord.  I can do all things, through Christ, who strengthens me.  Thank you Lord, for this promise.  Please help me to remember it in all situations.

Keep your chin up, Everyone.
Love to all,
Jean

Monday, September 9, 2013

September 9, 2013

Boy, did I get some bad news today!  

Went to the doctor prepared to hear about the biopsies they did last week.  Well, at least I thought I was prepared.  He came in and said, "First, the bad news".   Then he dropped a bombshell.  The small, blueberry size tumor in my left lung is LUNG CANCER!   Then he proceeded to tell me that I have to have yet another biopsy (actually 3 at once hopefully).  This will be to biopsy the lymph node in my left collarbone area, the tumor on my left hip and the tumor on my T12 spine.

I am getting radiation on that tumor on my T12 spine but they need to biopsy it anyway.

Now, when they find out what kind of cancer is in all these places they will be able to finally decide our exact course of treatment.

If any of the other sites is Lung Cancer then the prognosis is not really too good.  It could be as little time as 12 months.  However, that is the worst case scenario.

If none of the other sites is Lung Cancer then they can use the CyberKnife (pinpoint radiation) to get rid of the tumor or do surgery to cut it out.  Of course I would prefer CyberKnife instead of surgery.

But we can't do anything until I have these other biopsies.

The Interventional Radiology Department (IR) has scheduled me for 10:30 am tomorrow.  But they are working me in so don't know exactly how long it will take to do the procedure because they don't know if they will do all three places or just the left hip and right lymph nodes by the collarbone.

That was quite a blow when he said 12 months.   Then he said please don't worry about it too much until we actually know.   Right!   I will probably think of nothing else.

So again our future is up in the air.  It's like I told the doctor I can handle anything as long as I know what I am facing and what the course of action/treatment is.  Yes, I teared up and had a bit of trouble talking right after he dropped that bombshell.  Who wouldn't?   But he very quietly reached behind him and got two paper towels from the dispenser and handed them to me.  He just kept talking like nothing was wrong.  I am glad that he did that.  If he had tried to pet or coddle me I would have just lost it completely.  After a few tears (and no great big cry) I got in control again and finished asking my questions.

I had asked him for something to help me sleep because sometimes I just can't sleep.  He forgot to write the prescription so he came out to the scheduling desk where I was and wrote it.  I told him I don't think I like him very much any more and laughed.

Then I told him that he had an assistant looking over his shoulder.  Then I rephrased that and told him that he was the assistant, that the Lord is in on all of this, too.

One thing the doctor did tell me is that having the problem with my collar bone may just save my life.  He said we probably would never have even looked for the tumor in my lungs since I don't smoke and don't live an that type of environment.  So we might not have known about it until it was too late.

The Lord works in mysterious ways, His wonders to perform!  Isn't God great?  I am trusting Him that His Will be done.

Now I have to get off here and contact my brother, Steve, who lives in Ecuador.  He is going to help me work on our website for our wooden toys and games.  If you want to check it out it is:
www.travelingtoymaker.com  It is under construction but it works but is not pretty now.    If you check it out, let me know what you think.  I am trying to change the whole layout but I need constructive feedback.

Well, that's it for this time.  May or may not post tomorrow but will definitely post when I find out something else.

Love to all.  Hug your kids and spouse (if you have them).  If not, hug yourself.  Love life and live it to the fullest.  You certainly do not know what tomorrow will bring.

Jean

Wednesday, September 4, 2013

September 4 - 1st day of radiation

Today was two firsts.  I had my first radiation treatment and I got my toenails painted at the nail shop. 

After they got finished marking me all up with a Sharpie pen they finally did the radiation treatment.  I could not tell that anything was going on but they told me to expect that.  The radiation machine is very large and moves around me.  They hit the collar bone on an angle and the one on the spine from the front and the back. 

The only discomfort right now is from the biopsies from yesterday.  I am still pretty sore.  I told Keith this morning that I felt like I had been run over by a Mack truck.  I am just sore all over more than anywhere else.  I'm sure the soreness will go away in another day or two.

I am going back for Radiation every day (except weekends) for 10 treatments.  They will not take as long as it took today, so they tell me.  They said that since they have the marks on my skin that it will be easier to position me the rest of the time.  I am just glad that I have started on treatments.

The only problem I have is that the doctor will not let me take my Zeal Wellness Formula.  They said there is too much antioxidants in it and that will work against the  Radiation.  What a bummer!  I need the Zeal to feel better because of all the other stuff wrong with me ( post polio, arthritis, etc.) and it helps to curb my appetite. 

So I hurt, ache, eat everything in sight, etc.  Sure will be glad when I can start taking it again.  I just don't have any energy.  I haven't be able to take it now for about 10 days and I really miss it.  Oh, well, it won't be long before I can start on it again.

Then, after the radiation we stopped at Walmart so I could get a pedicure.  I have had them before (only a couple of times) but never got polish put on my nails.  So I decided to go all out.  Told the tech to pick a color.  He picked bright blue with sparkles.  I guess no one but me will know what's on my toes.  I'm sure none of you will tell!  LOL

Well, that's my tell all for today.  Nothing too exciting.  I probably won't write again until after I see the doctor on Monday.  He will give me the results of yesterday's biopsies and then I will know all that is wrong.  Then we can get going on all the treatment and find out the prognosis.

I have put myself in God's hands and have asked that His will be done.

Keep up the prayers and good thoughts.  I really appreciate all of it.

Until next time.

Jean

Tuesday, September 3, 2013

Biopsy is over

Wow, I don't want to have to do this again.  I had a bone marrow biopsy this morning and a lung biopsy.  They were both done this morning.  I had to be at the hospital at 6:30 am!  They took me back about 8:30 am. 

I had a pleasant surprise tha my pastor, Ray Couey, came.  Wasn't expecting him but was really glad he came.   

They did both biopsies from the back which was a surprise to me.  I am a little sore but am OK otherwise.  We get the results on Monday, Spetmeber 9. 

I start radiation tomorrow for the next 10 days (not weekends).  Appointment tomorrow is at 11:15 am.  Have to see what the schedule is for the rest of the days.  I am looking forward to this because it is the start of treatment.  That means I can start getting better. 

Now, it's wait another week for these results.  But that should be all the biopsies for diagnosis.  Now we can get started beating this.

Just another step on this journey.  Let's go.

Jean

Thursday, August 29, 2013

Salsa anyone?

August 28 - Wednesday.

Boy, I am so tired.  We bought two boxes of tomatoes from a local produce farm late yesterday afternoon.  

We have made about 48 pints of salsa, which is kind of hard to do in a motor home.  We had two crock pots going, one to use to blanch the tomatoes.  The other was to cook the salsa.  Then we had a big canning pot on the three burner stove to use to do the actual canning.

Needless to say I had tomato juice everywhere.  I sat at the dining room table with a crock pot by my side to use for blanching and the other pot for "cooking" was on the table.  I blanched, cooled, pealed, and chopped tomatoes then cooked them and filled jars until I just gave out.  Keith handled all the standing up work, sterilizing the jars and flats, attaching them to the filled jars, then putting them in the canning pot and then finally taking them out so they could cool.   We still are not finished but I just had to stop for the day.  We will finish them either tomorrow or Saturday. 

But even though we are both extremely tired we enjoy hearing the satisfying "pop" as the jars cool and the flats seal. 

We wanted to get the salsa made before I start chemo because we were afraid that I might be too tired to be able to make as much as we wanted.  We made some last year but didn't make enough to last the whole year.  We have been having to eat "store bought" salsa.  Not as good as ours was.

We are having a cookout for Monday with friends from church coming over.  That will be nice because we don't get an opportunity to have friends over very often.

Tomorrow I am going to the Social Security Administration office to see about applying to my Social Security.  Here I have been worrying about a lot of things and just realized that in 5 months I qualify to apply for Medicare.   Had been holding off about applying for SS benefits but decided I might as well apply because I won't be able to work any more at the work I am doing when this job is over.  I have to move around to do my work and I want to stay with a doctor until my treatments are over.  We will stay here in the Knoxville, TN area until we get finished with the job  so I am getting my care at the University of Tennessee Cancer Center.  Like the doctors so want to get as much therapy with them as I can.

Well, I am getting really tired.  Unwinding from all the work today.  Now it's time to relax.

Have a great evening.

Jean

Tuesday, August 27, 2013

8-27-13 - Radiation Oncologist visit - outcome

Well, I have been chastised by my cousin, Carolyn H, that I called this doctor visit by the wrong name.  Instead of Radiology Oncologist (sounded good to me, though), it is Radiation Oncologist.  This is the doctor who orders and supervises the radiation therapy for my cancer.  His name is Dr. Joseph Kelley and I really liked him.  He acted as if I was the only patient he had in his practice.  Period.  He sat and talked and explained and when he was through he asked if I had any questions.  Of course, I had some, and he took time to answer them.

So, I can tell you that the Lord has His hand in this cancer journey of mine.  It went from sounding like a very, very bad outcome to being a pretty hopeful sounding journey. 

Dr. Kelley confirmed that I have plasmasytoma in the collarbone.  He also said he thinks it is the same thing at the T12 vertebra.  Therefore the diagnosis changes to multiple myeloma.  ***My question is why do they have to complicate the diagnosis by changing it's name, but that's for another time and another place because I certainly don't have the answer.***

He is going to do 10 radiation treatments.  They will be on Monday thru Friday until it reaches 10 treatments.  For sure I will start treatment by September 3.  It is possible I will have one this Friday if they can get it scheduled.  This will be on both Collar Bone and T12. 

Tomorrow I go in for a CT Positioning Scan.  This is highly technical but what it amounts to is they scan the two tumors and then make a mark with paint pen on my skin, on my front and back, so they know exactly where to shoot the radiation in order to do the most damage to the bad cells and the least amount of damage to the good  stuff (like lungs, kidneys, etc.)   Tomorrow's appointment will take about an hour.   Each radiation treatment will take about an hour.

Oh, yes, he did tell me that I cannot do any heavy lifting or twisting or anything like that.   Now, for those of you reading this that don't know me personally let me tell you that I lead the most sedentary lifestyle that anyone can without being confined to a wheelchair.  I wear a long leg brace on my right leg and have NEVER been able to twist at the waist (especially trying to turn to the right) because I would lose my balance and fall.   As far as carrying anything, most days I don't even carry my own purse because it throws me off balance.  But, being the good and compliant patient that I am trying to be I promised him faithfully that I would refrain from doing any of that.   LOL

Hey, if I can't have a sense of humor in all this it is going to get pretty depressing so I am taking my fun while I can.

He also told me I should not expect to feel ill while having these treatments.  He said about the end of the treatments that I may feel like I have a mild sunburn in the areas that were treated and that I may feel like I have a case of the flu coming on (which could last 1 to 2 weeks).  The way I look at it that is a good excuse to take a nap!

Still have to find out about the other two tumors but Dr. Kelley said that if this collarbone thing had not been bothering me that we might not have found out about the one in the lung until it was very large and/or had spread.  Right now the tumor in the lung is about the size of a blueberry.

He believes that they will be able to take care of almost everything with chemo without any more radiation. 

So, yes, I do have cancer.  The good thing is that the Lord has lead me to wonderful doctors and I believe He has touched me to make these tumors be something that is up to 85% curable.  I am still praising Him.  

I will probably not post anything else until I have my first radiation treatment.  But, who knows, something awesome might happen that I just have to share.  Who knows?  Only the Lord.  Thank you Lord for loving me and caring about each one of us, even if we don't feel worthy.  I love you, Lord.  And I am trusting You for your touch throughout these treatments.

That's it for now, Gang.  Call me if you wish.  Text or email works too.  And I love the FB messages.  I have so many friends and family that are praying for me.  I thank you for all those prayers that are going up to Heaven on my behalf.  I cherish each and every one.

Be good until next time,

Jean

Monday, August 26, 2013

1st Appointment with Radiation Oncologist

Appointment with Doctor tomorrow.

I have an appointment with a Dr. Kelley tomorrow, August 27, at 10:00 am, to talk about starting the radiation therapy on my collar bone.  .  His office is in the UT Hospital building.

Don't think I get any treatment then but am open to getting started as soon as possible. 


I have worked all day today on our website for our wooden toys.  It not only keeps me busy so I don't worry but when it is completed we hope to use it as a way of making a little spending money.  If anyone wants to check it out it is:  www.travelingtoymaker.com.  It is a work in progress but you can see some of the toys that we make.

We have met some great people here in Eastern Tennessee and have gotten a lot of new patterns for things we have not made before.  It is exciting to be able to visit with people about toys and games they have had around for a long time that are actually new to us.

We also got Keith's TV controller working now so he can watch TV and be able to hear it through Bluetooth capability directly into his hearing aids.  The best part is that I don't have to listen to it at all.  I can mute the TV or turn it to a sound that is pleasing to me instead of being blasted out of the room or not being able to hear it at all because he is just watching the action. 

And he has another devise that lets him hear on his Smartphone.  What a blessing that he is able to make some of those phone calls and visit with people.  He has been so cut off because of his hearing loss.  The Lord has surely blessed us with finding this new audiologist and these new hearing aids.

Isn't God Great!  I will praise Him in all things.  

Please pray for our son, Robert's, mother in law Joyce Slater.  She had surgery on Friday and on Sunday he called to say she was not doing well and was being put on a ventilator.  We just pray that the Lord will touch her and help the family to know He is at work.

All in All a great day.  Hope yours has been as good.  Will update again late in the afternoon tomorrow after I get to visit with Dr. Kelley.

Love to all,
Jean

Friday, August 23, 2013

1st Biopsy results - Aug 23

August 23 - Diagnosis of Biopsy on collar bone

Hello everyone,
Well, I have been to the doctor today to receive the results of my 1st biopsy.  This one was on the collar bone.  The diagnosis is "Plasmacytoma".  This is a malignant plasma cell tumor growing within soft tissue or within the axial skeleton.  In my case it is in the axial skeleton.   The doctor also believes that the lesion on the T12 vertebra is the same thing.  That changes the diagnosis to "multiple myeloma"  only because it is in multiple locations.

I am scheduled to see a radiology oncologist next week.  This will be the start of radiation therapy on the collar bone tumor.  No mention yet of any treatment on the T12 lesion.

Survival rate is very, very good so it is an answer to prayer.  Thanks you, Lord, for this diagnosis!
So we have pretty much got a diagnosis on 1/2 of the tumors.

Now, for the other half. 

The doctor said that the reason he did the collar bone biopsy first is that it was least invasive and he thought it would show it was metastatic lung cancer.  But it isn't so.....   He said it was really strange.  I explained to him that any time there was something strange that it would happen to me. 

He has scheduled a biopsy of the mass in my left lung and a biopsy of the lesion in my left hip (along with a bone marrow biopsy taken from the left hip) for September 3 at 8:00 am.  I will not go back to get those results until September 9 at 10:45 am.


* * * * * * * * * * * *

Some good news.....
I found out that I can change my health insurance coverage at any time and do not have to wait until January to make the change.   This means that when this job is over that we will be able to go back to Oklahoma and do my treatments there near our family.  Don't know yet just where that will be but am really happy to learn that. 

It's not that we don't love our church family in Tennessee but we want to be near our family that includes siblings, children, grandchildren and even great-grandchildren.  We have not had the opportunity to be with them very much since we have been working out of state for the past 4 years and it will be a great opportunity to get to make up for some of that time.

God is so good.  I guess some times he has to allow us to have life changing moments to make us stop and take a good look at our life.  We really look forward to being back with our family within the next two or three months.

Friday, August 16, 2013

August 16 - 5:14 pm - Biopsy is done!

Had my scheduled biopsy of the collar bone and lymph node.  After a 3 hour delay in getting started we finally got it done under just local sedation.  I had a chance t see the CT Scan of the site they were testing.  The tumor has attached itself to (and even replaced) the bone.  The tumor is pretty large looking to me but the report says it's about 1" square. 

One complication is that my blood pressure was off the charts at 236/105 at the highest.  They almost didn't do the biopsy because of it.  It's down some and the biopsy is over.  At least I wasn't sleepy so was able to go to the Apple store and get my Iphone fixed.  It wasn't ringing because the speaker was out.  So if I missed any phone or texts from anyone it wasn't my fault.  LOL

They tell me I may be pretty sore from the biopsy site to the point I may have a problem using my crutches for a few days.  That's OK.  I plan to work on our toy webpage this weekend anyway.  My brother Steve is going to help me with it. 

Now the countdown begins for the next step.  Only 7 days to go to get an answer.

Received several texts today from well wishers.  Thank you everyone.  It really helps to know that others are with me on this journey.

But I have to remember that God is in control and we want His Will to be done. 

Have a great week!

Wednesday, August 14, 2013

August 14, 2013

Have tried to keep busy today so don't have to think about it being 2 more full days until I have my biopsy.  We worked in the trailer on toy and game patterns from about 8:00 am until 5:00 pm with about 1 1/2 hour off for lunch and to do a project in the house.

But I got mad at Keith (really for no reason).  Here's how it went:

Yesterday he used his phone and called the vet about our dog, Buster, who is a nervous wreck when it rains (not even a storm, just rain).  He can hear so much better since he got his new hearing aids he doesn't need me (and there is the rub, at least today it was).  He made the appointment using his phone, he took the dog and didn't need me to go so I could hear, and he came back and told me what was going on.

Today I was working on this project in the house and he made "suggestions" (and they were good) about what I was doing.  I snapped at him.

WHY?   Well, I felt useless, like he didn't need me any more and it wouldn't matter whether I beat the cancer or not because he will be ok. Now, before someone starts to tell me that that's what I should hope for, of course, I know that.  LOL    That is what I want for him if the worst thing happens with me.  But, if I get better he still won't "need me" as much as before. 

It doesn't make sense.   Yes, I know that!!!!!!!  Then I told him why I snapped at him.  That confused him.  But we talked it out and I explained to him how I was feeling and it's all over now.

But I am so tired tonight.

Oh, but I might have (and it's only a slim possibility) figured out the spot on my left hip.  I forgot to tell the doctor about a surgery that was done when I was 18 (just graduated high school).  They took a piece of my hip bone out and inserted it into my left knee.  I am anxious to tell them about it the next time I see any of them (probably on Friday at my biopsy).  Don't know if it will help but sure would take a load off my mind if that would explain it.

That's it for tonight.  Love to all.


Monday, August 12, 2013

August 12, 2013 - 4:45 pm EDT

Just got back from spending all day in Knoxville, TN.  Had appointment with oncologist for 10:15 am.  We arrived at 8:45 am.  But we just didn't want to be late.

We saw the nurse and then the doctor.  I liked them both very much.  This visit was just so they could get the history and set up a biopsy. 

The biopsy is now scheduled for this Friday, August 16 at 8:30 am.  The follow up visit to the doctor will be Friday, August 23, at 11:15 am.  At that time he will give us a better idea of what we are facing and how he plans to treat it.

The doctor's office asked me to pick up the CD/DVD of my CT scan and PET scan that were done in July.  They said if I picked them up we would have them in time for the biopsy.  They can then compare that scan with the scan they will be doing while they biopsy the collarbone and the lymph nodes.  No biopsy of the lungs is scheduled at this time.

I am just so glad that it is started.  It will be almost 2 weeks before we have any more real news but at least we are on the way. 

Love to all,
A very relieved
Jean

Sunday, August 11, 2013

Sunday Aug 11 2013

August 11, 2013

Well, just one more day and then we start getting some answers.  I am seeing Dr. David Aljadir tomorrow morning at 10:15 at University of Tennessee Cancer Center.  I am very anxious to get started.  This not knowing is the hardest. 

I went to church today and was blessed by the sermon and the special music.  God knew exactly what I needed.  Then had lunch with my friends +Donna Couey and +Bonnie Honea at Texas Road House.  We had a good visit. 

Hope the doctor will be able to do the biopsy tomorrow and get the results.  Sure hate playing this waiting game.  I think I will be OK when I can find out for sure what the diagnosis and prognosis is. 

I was greeted by each one at church today and told how they are lifting me up in prayer, from the youngest to the oldest.  Sure makes me feel good to know that so many people are holding us up to the Lord for healing and support.  I know they will be with us in spirit as well as my family will be. 

I am not alone in this.  The Lord is in control and I have all my friends and family there too.  It is a wonderful feeling.

More after the doctor tomorrow, when there is more to report.

Today I leave you as
A very lighter hearted Jean

Saturday, August 10, 2013

Diagnosis

Well, the worst possible diagnosis to me is "You Have Cancer".   So, guess what!.  That's the diagnosis I received at 5:30 pm on August 6, 2013 from Dr. Edwin Spencer, Jr.  And the crazy thing is I went to see him for a collar bone problem that I have been having since December 14, 2011.  I have seen 2 other orthopedic doctors, my primary care doctor, a chiropractor, and physical therapist.  Only the physical therapist seemed to think I had a collar bone problem.

Until I saw Dr. Spencer.  But then he gave me the dreaded diagnosis.

My first appointment with the oncologist is August 12 at  10:15 am at the University of Tennessee Cancer Center with Dr. David Aljadir.  I am looking forward to getting started on this journey (although it is one I never thought I would have to take.

This Journal Blog is for me.  But I want to share it with anyone who cares to read it.  I don't know where it will go or what I will post.  I plan to post any appointments and the complete results so my family and friends (and anyone else who wants to read it) can check here instead of my having to call them each individually.

I wrote this following part a few days ago before I started this blog:


July 25, 2013 – CT scan this morning.  Also had a MRI scheduled but due to receiving the authorization for wrong procedure the MRI was not done.  While they were working on getting the proper authorization the CT was read by the radiologist.  According to the lady who was working with me on getting MRI set for proper test, “The radiologist read the CT.  He said you do not need the MRI but probably need a PET scan.  He called Dr. Spencer’s office who reached him in surgery.  Dr. Spencer said to schedule the PET scan.”  She told me I would hear from Dr. Spencer’s office.  Within an hour or so I received a call saying the PET scan is scheduled for Monday July 29.  I have follow up appointment with Dr. Spencer on August 6 to get the results.

 

The only one I have ever known that had PET scans was Wayne DeCamp to check to see if his cancer had returned.  I checked the internet and it says PET scans are to check on where cancer is in the body and to see if it has spread.  I am scared because I don’t know what is going to happen but I am trusting that the Lord’s will be done.  One thing I told Keith is that if it is cancer I am glad Mom is not around because she would have worried herself sick if I do have cancer.  Sent email to a couple of friends at church.  Told Steve I am having the test done when we were talking over Skype yesterday because he asked what was going on with the tests I was having. 

 

I am not going to tell anyone else until I get the results of the PET scan.  It is going to a long few days until August 6.  Wish I could see him a lot quicker but will just have to wait.

 

August 9, 2013 – 5:45 am – Well, I got the results of the PET scan at 5:00 pm on 8/6/13.  It is cancer!  And of course, in true Jean fashion it’s not just in one place.  I have been told I go overboard.  Well, guess this is another time of that.  There is a lesion on the collar bone or affecting it or something (not really clear on that one), a spot in the left lung, a spot on my spine and one or two spots in the pelvis, as well as lymph nodes at the collar bone. 

 

The past 2 days have been very emotional and scary and depressing and, and, and…….   You name it, I have gone through a full range of emotions from almost uncontrollable crying to actually being happy and having a few laughs.  Some of the highest and lowest moments:

 

1.     Initial thought was I am glad my mother is NOT HERE to have to worry about me. 

2.     Trusting in the Lord that His will be done.  (that’s going to be a hard one to continue with but I want to serve Him and be a good Christian witness through this)

3.     Although I love the Lord and plan to go to heaven some day, I’m not ready to go yet, Lord!

4.     I can shave my head!  I never have liked to have to work with my hair and wear it short anyway.  (it’s good for a laugh right now, anyway).

5.     Scared that I may not live.

6.     Wanting to go home to see my family.

7.     I am not in control of things.  I’m not used to that.  I am having to wait for others to make appointments, etc.

8.     I WANT MY MOMMY! 

 

Yes, I started this list with my mom and finished it with her.  I have not really grieved for her since she died in May, mostly because I know she is so much better off in Heaven than she was here on earth.  I am very glad she is not here to have to worry about this but I guess you never outgrow wanting your mom when you are ill.  It just hit me so hard yesterday that she wasn’t there to tell me what to do.



Now, I start my blog in earnest.  Some may not like what I post but I don't care.  I am going to post my true feelings (whatever they are, good or bad) because I will need this as an outlet.  I want and need your prayers and support. 

Anyone can call me at anytime. 

Post your comments to me on this site.  Help me (and my husband Keith) get through this.  We need you.

My first appointment is Monday.   Let's get started on JeansJourneyThroughCancer!