This month has been a challenge to remaining "perky"

Hi everyone!  Well, I am about ready for my second round of the chemo coctail that includes Treanda.  Monday, 04/25 I "get" to do it... not "got" to do it.  I am blessed to be able to have the coverage to allow me this service.

This month has been a low key month.  Seems that I cannot keep focused, and my bones ache!  With that and my persistent cough, I have been taking a lot of naps.  I have never been a nap taker, I am more of a person who has to show production for time used.  The bone pain is from the Neulasta shot I receive at the end of each chemo.  And, I guess some of my foggy brain is from pain medication.  Either way, stop, enough!  I would like to read a book page by page again.  Seems like I have to keep going back and re-reading.  So, I am back to taking notes when I read to refer to.  I get my money worth out of the book, that's good.

One thing, my prescription insurance reached its donut hole much sooner than I thought it would for this year.  Half way into May, I am on my own until I have paid out $4,500.00!  That will take until the first of October, when the insurance will begin paying again.  The largest rise in medicines has been due to my diabetes.  During chemo, and within my asthma medications, I have steroids.  That is what has caused my numbers to peak and valley, using much more diabetic supplies and medicine.  What to do... besides on my way home from the doctor on Monday when I realized it.  Panic!  My son and daughter are ready to commit me when I finished off a text to them with..."next year how do I pay rent and donut hole at the same time?  Guess I'll stand on a street corner, skirt hiked up as I lean seductively against my walker and gain attention next to the senior high rise."  I was just kidding guys!  Gotta have a little humor.  Besides the quarters thrown my way won't go far in this rising economy...  Smile!

Don't think that chemo is keeping me down as much as a combination of it, allergy season, asthma kicking in and all of this affects my glucose numbers.  The doctor has me on two long term N insulin shots each day,  and three short term R insulin shots each day.  That in itself is taking some getting used to .

I seem to be losing more hair lately, thankfully I have thick hair!  I am feeling an unpleasant feeling at the base of each hair.  So, I comb carefully... wash and finger comb a lot.  Sure hoping that it doesn't all go, but just incase I did order a hat.  One never knows.  I don't really care, but I do not want to become an attraction either. 

I have located an apartment back in Kennewick.  I cannot put my application in until my birthday, 08/27.  I will be 62 then.  Now comes the struggle with paying the donut hole and saving enough to move.  And, I really want to see my daughter in CA.  Okay, I won't be greedy... but pray for a financial miracle to help me live closer to the doctor, hospital, treatment center, etc.  The long drives are tolerable, but not when you are really feeling awful and want to get there quick.  I am thinking positive, and feel that all will come together as I need it.

In the meantime, I am thankful for the many things I am blessed with.  They may be small or large, a glimpse of something nice, love of those around you, or a friends call, the fact that my car is still running, and I can fill the gas tank... all of it (and more) are blessings.

Easter is coming up this weekend.  My wish is that all of you have a wonderful day with family and friends.
Love, Marie

It has been a long time since last posting...

Hi, I hope that this finds everyone well and enjoying the sunshine that is out!

This past month has been difficult to accomplish "anything" due to a series of walls that I keep walking into. 

I began with starting the new drug, Treanda, during chemo this month.  I am not sure whether it was the Treanda or the Neulasta shot finally catching up with me, but... I was one out of sorts puppy for a while.  The doctor had previously prescribed Oxycodon, and it was good to have it on hand.  Hurt... oh yeah.  Then, my thoughts, focus, energy all went by the wayside.  I have been trying to get myself back into a normal routine.

With the stress on my body, and the steroids from chemo and my asthma inhaler, the glucose numbers I register are high!  I go up one unit each a.m./p.m. along with diet and exercise until it reaches some control.  So far I am up to 52 units a.m. and 52 units p.m.  I have been told that once I complete chemo my system will level out a bit.  I am struggeling with weight.  I have been told this is normal with the diabetes bouncing around, and the high amounts of insulin.  Since I have only completed one chemo with the new drug, I have five more to go.  That doesn't include the months I have just completed with the other drug. 

I have to pat myself on my back that I was able to focus enough pay bills, balance my checkbook, figure IRS, etc. this month.  Oh, want to hear something?  I did not have my Social Security Statement (proof of income) for this year.  I went online and requested a Proof of Income letter.  I was told that I would receive it within ten days.  Then, I receive online, "In light of the current budget situation, we have suspended issuing Social Security Statements.  You may be able to estimate your retirement benefit...."  Unbelievable!

Day by day I am doing better... the only problem is that chemo is coming up again on the 25th!  Ugh.....  I am not used to going slow, not doing what I want physically, multi tasking, etc.  This slowing down is emotionally painful!  Ha ha.

Have a great week, enjoy the sunshine, be thankful for what you can do... and focus less on what you no longer can do.  Focusing on the loss makes one angry, I don't have time for anger... I am looking for joy!

Insurance approved new medicine!

Received a call today from my oncologist office.  The new medication for my chemo treatment, Treanda, was approved!

With that news, also received confirmation of chemo on Monday and Tuesday.  Wednesday the Neulasta shot.  It is a shorter treatment than before.  Three months on this schedule once each month, then a MRI scan.  If all looks good, another three months, and then another scan... and it goes on.

Now, I know that I am pushing my luck... but want to try and get my primary doctor to convince the insurance that I need to use Lantus insulin rather that what I am on.  The Lantus has a longer life, and will regulate my glucose better.  It is also expensive, so they have refused to pay for it.  If not, I will wait until I get my supplemental insurance the end of this year.  Hope that it will pay for Lantus.

Yesterday's oncology appointment 03/21...

Hi everyone! Hope your week is going well.
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I apologize that this post is the same as the post on the CLL forum.  I just don't have the brain power today to do a second one, and wanted to get this information out to those I promised I would.
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My week has mixed messages, but I am going to focus on the blessings, and not what if's.
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I went to the doctor/oncologist yesterday. He went over the latest CT scan, MRI scan and blood test results. Good news first.  The mass around my renal artery is down (confirmed) to the point the scans are no longer distinguishing the difference between the lymph note and the mass. Before you could see the mass, attached to the node and surrounding the renal artery.  Now, the doctor cannot see this growth! And no, the bathroom scales are not showing a loss of weight due to the loss of mass.  You know, that is not fair!
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The cancer within my kidney is difficult to judge. It is not a normal mass, but a mushy/cloudy substance filtering thru the entire kidney and its tissues. The oncologist discussed this at a conference with other doctors about treatments and radiation. Radiation was agreed on only for a later resort. Surgery is not being considered because the right kidney is still functioning and helping out my left healthy one. So, now comes the fight with the insurance company.
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Again, I have an advantage plan contracted with Medicare. In this state (Washington) due to an attorney general ruling which I don't understand, I cannot buy supplemental insurance until I turn 62.  This decision covers me even though I am on disability social security/medicare. If I could afford it, nobody will sell me a policy with my pre-existing conditions. The insurance /medicare thought is if the F&R didn't help, why go to the expense of another treatment. Doctor is calling to explain that the F&R did help, just not much.  My kidney function is a tiny bit better, there have been no developing growth (from the cancer cells circulating in my blood reference the leukemia)since chemo began, and the renal artery issue is much better. With that he thinks he can convince the insurance/medicare to let me continue with Rituxin and include Treanda, along with the other meds given during chemo.  He could add the C to the F&R (FCR) treatment, but it is much more toxic than what he is recommending. The Treanda is more cost than what I was on... that is the problem. If the recommendation is declined, I have to wait for further treatment until I can change to supplemental insurance. My insurance window opens late October. So, further treatment would not take place until approximately November.
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Pray for an approval from my insurance and medicare.

Hope for tomorrow...

Just a note:  During this time of the Japan earthquake/tsunami disaster, the information being reported is mixed.  I would rather hear the truth, even if it is not what I wanted to hear.  I cannot believe that this radiation release will not have a bigger effect on the people of Japan, and the world , than we are being told.  I do not want to be an alarmist, just realistic.  Now, I am told there is a post online that the Navy is taking away personal phones and computers on ships near Japan.  Is this so information leaks will be at a minimum?  If this post is to be believed, what is there to leak?  While in Kennewick, at my doctor appointment, my sister and I stopped at the health food store(s) to check on their supply of Iodine.  None.  And, unable to get any further supplies for a while. I am told that there is a government stockpile.  That information might be correct, but how long will it take to have it available for consumption to the average citizen?  Maybe I am worrying over nothing.  And yet, I pray that 15-20 years from now I don't have family being diagnosed with cancer due to this.   

Thursday, 03/16
It is so nice to have the weather changing into Spring.  The drive into my doctor is so much more pleasant without ice, snow, and rain.  The wind, as we do have that during Spring, can be managed.  But, there are times when driving the wind is so hard that it plasters the tumbleweeds against the car.  On occasion, we have had to stop the car and pull off the tumbleweeds. 

Arrived for the MRI test, and find that I need another IV.  It has been a while since my last MRI, and I forgot that this was the machine with the long tube you are enclosed in.  On top of that, I am not good at holding my breath... and the entire test is "breathe in" and "hold."  When I quickly breathe in, my asthma kicks in and I want to cough.  Try holding a cough in, and keep your abdoman extended. Really it is not bad if you are not claustrophobic or have asthma.  If you do have these issues, the short test can appear long!

Afterwards wanted to go eat!  Had to fast before the MRI.  Gloria and I went to a new Italian place in Kennewick.  Since I have been having an issue with tomato burning my mouth, we ordered pizza with olive oil and pesto sauce as the base.  Wow, never would have believed it... better than with tomato sauce base. Only ordered a small pizza as I was going to my doctor in two hours

Then, went to primary doctor about my diabetic issues.  He said that as long as I have chemo/steroids, inhaler/steroids, and other issues that my glucose levels would be up.  I have to test several times a day, and now insulin shots twice a day.  The amount goes up daily until my glucose reaches an acceptable number at twelve hour intervals. 

I am doing more in-depth research into N-Acetyl-L-Cysteine and Alpha Lipoic Sustain.  This promotes Glutathione and is a precursor to Glutathoine.  My sister says that since she has been on this her blood pressure is better.  I have also read that it may help my glucose levels.  So... read, read, read and hope I find something that will help.

Today (Friday, 03/18) I would like to send prayers for a cancer surgery that is taking place in Seattle right now.  Once of my son's co-workers (Washington State Patrol) is having a serious cancer surgery.  I am proud of the local Tri-Cities police/justice community and how they have come together to help this young man and his family.  This is going to be a long recovery.  I believe with God's influence, a blessed recovery is possible.

Enthusiasm is contagious.  You could start an epidemic

Author unknown

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My father was part Irish.  He would not let us believe in Santa Claus;
but, as children under his direction, we always put a treat out for the
 "wee people."  Happy St. Patrick's Day!



Chemo was cancelled, more tests...

Attitude is everything.  You simply cannot be beaten if, at the end of the day,some tiny part of you can still whisper, "I will try again tomorrow." 

Author unknown

There have been so many tragedies in the world, the latest being the earthquake/tsunami in Japan.  My thoughts and prayers go out to them, as well as other parts of the world where there is suffering.  Not everything makes media headlines, but the suffering is just as real.

My daughter has recently passed her California Insurance Exam and is training with Aflac.  The reason I bring this up is the earthquake(s) in Japan.  From her training she has told me that this company has a huge presence in Japan.  I was worried about how the people would be able to prove injury, death, anything at this point.  Their homes are gone, along with personal records.  City Hall's are gone, people are missing... how will they prove a claim?  I was delighted to hear that Aflac is going to be extremely reasonable with those claims, the people have suffered enough.  I am not promoting Aflac, just praising a large company for being compassionate.

I have a sick tooth...  

Sunday, 03/13.

I have read that during chemo treatment you are not supposed to have any dental work.  Great... I have a tooth that is hurting.  This coming week I am going to ask if I can go to the dentist.  Since I am at the end of my chemo break (4 weeks) I have just begun to have reduced glucose readings.  They have been in the low 200's, even down to the high 100's.  With chemo comes the steroids, which means my glucose numbers are going to go up again.  Drats!  The side effects of CLL and its treatment involve more than the cancer itself.  I know that infection is of great concern, then throw in my bleeding problem... what to do?

Monday, 03/14.

This morning started off as any other chemo week.  Once I got to the doctor's office I was anxious to review my latest CT scan.  First off, the doctor told me that he was cancelling chemo because he needed more information to be able to decide what the best course of action would be going forward.  I think he is having to justify his actions to the insurance company.

The doctor told me that the mass around my right renal artery is no longer visable, at least on the current CT scan.  That was reason for me to sing praises!  The right kidney is difficult to determine improvement, if any, from the CT.  There was no evidence of any new mass formation.  Much of the news is an answer to prayers.  All of this will be confirmed with a upcoming MRI on Wednesday, 03/16. 

The doctor was frustrated as he normally has a mass (lump) he can measure to determine increase or decrease in size.  However, mine is different.  Of course, I don't do anything simple!  The cancer within my right kidney is cloudy/mushy, filtered in the empty area and tissue of the kidney.  This makes it difficult to measure.  So, the doctor has ordered an MRI, which is where the diseased kidney was located during the diagnosis process.  I was told CLL is systemic, therefore removing the right kidney would not cure the lymphoma/leukemia. 

My right kidney still works good enough to help the left kidney.  We don't want to remove it and put more stress, as well as my diabetes issues, on the healthy kidney.  On Monday, 03/21, I go into the doctor to review the MRI results, and current Creatine and GFA results. 

The doctor, along with my insurance, will decide how to proceed with treatment.  Of course the insurance company is going to try for the least expensive method, as well as consider whether or not the amount of money is going to a worthy cause.  Since January 1, I have found that my doctor is having to discuss everything, routine or not, with the insurance company.

Either you control your attitude,or it controls you. 

Author unknown