Can't wait for Spring to get here...

Author unknown, but I thought it was cute and
appropriate considering our current weather.

Can you believe it is the end of February and we had a little bit of snow, and single digit temperature... again?  I am ready for Spring and Fall...  note I didn't say summer with the blistering heat.  Maybe it is the chemo, but I am not handling the cold weather this year.  Shock to those who know me, but I am wearing socks all of the time!  I don't like shoes and socks... flip flops are my shoe of choice.




Grandson won by a pin... yeah!





I have really enjoyed watching my grandson wrestle.  It reminds me of when his father wrestled and I enjoyed that too.  The season, middle school, started and stopped so soon... can't wait until next year.

 This week I have had to make a decision on which doctor appointments to make, or keep. Since my oncologist wants to see me more often, the other appointments have to go.  I had cancelled an appointment with him this week.  There were no issues, money was short.  So I called in "before" and told them I would not be able to keep my appointment.  Then I asked if they could go ahead and schedule my CT scan for this coming week, and I would come in for a follow-up afterwards.  The CT scan will be on my kidney and renal artery.  (It is hoped that the chemo has reduced the size of mass.)  No, that would not work.  I have to come in to see him before he will order the CT.  I don't understand as we have discussed this scan several times.  So, I go in, no issues to discuss... so that he can order the CT?  That is going to cost me close to $100.00 out of pocket just to get the CT ordered.  Frustration! Doctors do not understand that co-pays, gas to and from the appointment, and 20% all add up.  On a limited income, I have had to make decisions.  Today I was honest with the nutritian center.  I told them that my income only stretched so far, and my oncologist appointments were going to be more often, so I would have to reschedule for another time.  So, now what do I tell my primary physician who is monitoring my glucose, blood pressure, etc.?

Guess I will be having a yard sale soon.  I shouldn't complain, as my situation is better than some, and for that I really am greatful. 

The bruises on my throat from the thyroid biopsy are almost gone.  I am still saying "thank you" for the good report. 

Is my chemo brain still an issue?  A great big YES.  It is frustrating for me to know that I have done something before, yet cannot figure out how to currently do it.  I am writing myself notes, and then can't figure out the notes later.  Now isn't that fun?  I understand that this condition will be better once I am thru treatment.  I can't wait! 

Thyroid biopsy... some good news!

Yesterday, I received a call from one of my doctor's.  The two masses attached to my thyroid are not cancerous!  Yep, no cancer there.  They will be monitored every six months, for a while, because of the size and location.  If the large one gets too much bigger, it will be removed.  But that is a worry for another time now. It feels good to shed some worry!

Thyroid biopsy... was on Friday, 02/11

I spent the early morning hours receiving plasma.  The Oncologist was worried about the bleeding  I have been doing, so three bags of plasma infused before the biopsy.  I went  into have the biopsy without feeling any fear as there would be "twilight" or something like that right?  Wrong!  The doctor put lidocaine on the surface so that I wouldn't feel the poke.  But, when you include alcohol... the size 18 needle didn't feel great going in.  Then, no other pain reliever while the needle slides from left to right of the neck.  Oh, it wasn't quite a slide either... short continuous shoves until it reached the designated spot.  There were six entries, two for the local lab and four for the trial test.   I quickly caught on that I needed help, and prayed for "help" in the biopsy process.  The feeling of quick relief came upon me, and for that I was very happy.  During this process I did bleed more than they thought I would.  End result is that the assistant ended up being splattered and had to be taken to the emergency room.  He will be off work a few days and will be fine.   I didn't have anything that would harm him in my blood, but the treatment caused him issues.  What is the old saying..."the best-laid plans of mice and men often go awry." 

Gargling is a good way to see if your throat leaks... thought of this after six probes into my throat. 

Also, things you don't want to hear during this process...

Everybody stand back, blood spurt!

Sterile, schmerle, the floor is clean right?

Don't worry, I think this is sharp enough.

Run, get the instructions for this test off my desk!

mzane butlerwebs.com

After all of this, I had to go back to finish my chemo for the week.  A full day!

During chemo week... 02/07 - 02/12

Monday was a day of getting to Kennewick early to leave suitcases at my son's house.  Then in for blood tests, doctor visits, finalizing appointments for the week, and beginning a long chemo day.  By Tuesday I was already tired, but my sewing group met and I wanted to see everyone.  So after chemo went to visit for a couple of hours, it was nice seeing everyone!  Afterwards,  back to my son's where we went to my grandson's wrestling match.  Wow, talk about a time warp!  Sitting in the gym, watching the matches made me feel as if no time had passed since my son wrestled.  I really enjoyed watching and being there.  I was able to double dip the pleasure because there was a Thursday match too.  Yes, going and doing during chemo week is almost too much... but, as long as I can make myself get up and go... I am.  Wednesday I didn't do a lot except chemo, few errrands, and the rest of the week was full of activity.  By Saturday, I had my Neulasta shot, ran errands with my sister and drooped my head all of the way back to Royal City.  Every now and then I would chuckle to myself, as I knew that I looked like my mother when she would drift off in church on Sunday morning.  I used to nudge her in church, now she is probably looking down on me smiling... "see, it happens to the best of us."

Upcoming CT scan.... not this coming week, but the following

The Oncologist is going to do a scan, about two weeks.  Since I have had three chemo weeks, he wants to see if the chemo has helped reduce the kidney and renal artery mass.  Since there cannot be a surgery on these masses, I am praying for a reduction in size.

Then Monday, 03/07 begin my fourth chemo week.  It will be the second week of March, so I will be able to visit the ladies during their once month get together on 03/08.

Which way do I go? Which diet do I follow?

This past few weeks have posed a delima for me.  I am supposed to be following a diet with lower protien, etc. so that the kidney will have an easier time processing/filtering.  At the same time I am supposed to be on a diabetic diet, and then chemo diet with high protien.  My glucose numbers are high, my GFR (kidney) numbers are lower than they should be, what to do?  I located a diet counselor at the Kennewick Cancer Center, so I am going to try and get an appointment to help me come up with a compromise.  The GFR number as been below 60 for more than three months, so the notation on my outpatient report is "chronic kidney disease."  I have to remember that the steroids in my chemo treatment make my numbers go crazy too.


Lord, show me the right food path to take... I am getting dizzy going in circles.



Reality if both good and bad...

It has been a while since I posted.  Why?  Well, I told myself that I would not make this blog a discouraging information outlet, rather an encouraging bit of information.  While I realize now that was an optomistic thought process, it is not reality.  The truth is that I have all kinds of days, and occasionaly "gloomy" is one of them.  To not record those days leaves one with an incomplete picture of what my life is like right now.

I have been asked "How is your life with Chronic Lymphocytic Leukemia (CLL)?"  To begin with there is a long list of issues to consider, not just the CLL diagnosis.  How does all of my other conditions work or not work together.  With cancer comes emotional, physical, social as well as financial issues that can come up unexpectedly.  In my case, everything in my world has changed. 

With cancer becoming a large part of my life, I have begun to focus on what is my purpose (reason for being, point in life, function)?  Am I just to exist, or is there something for me to accomplish? 

I struggle to maintain a positive and productive thought process with:

• PTSD (Post Trauma Stress Disorder)  This does not go away, one learns coping skills.  But, there are triggers to bring on a multitude of symptoms.
• High blood pressure, SVT, irregular heart beat, etc.
• Asthma
• Diabetes (numbers high due to sterioids in treatment)
• CLL (kidney, renal artery mass)
• Thyroid nodule/mass (more than one)
• Blurred vision (doing this blog with my prescription glasses and various reading glasses layered on top has been a challenge.)
• Immune system down
• Bleeding disorder
• etc.

As I have been having  some difficult days, I realized that a lowly (less than positive) day is as much a part of me as a good day.  That said, maybe it will help those close to me, or another going through similar issues to know that those days do come.  Now, how did Marie lift herself up?

• This blog helps me to explore my feelings, vent frustrations, find the silver lining of a looming cloud, and not worry about looking into the face of one I am talking to, having the fear that my thoughts are being rejected or discounted. 
• I have found that it is okay to admit that I do not have to be okay all of the time. 
• I do not have to accept only negative news.  I can research, ask questions, be an active part in my own life journey.
• Maybe you feel alone.  Then think of when you have remained silent toward others.  Yes, it can be awkward to talk to someone with health issues.  You, personally, may be going through a difficult time and a simple conversation is too much to accomplish.  Or, you might be thinking that too much time has passed, will my approach be welcome.  This can work either way, your approach or someone approaching you.  The key is to be understanding.
• I have found that to have a connection with family and friends one "has" to exit their comfort zone and make contact.  It is a difficult thing for me to reach out, fear of being rejected takes over. 
• Remember that no prayer is too small or too large.  Then ask for strength to go forward.