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!