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