Side effects...

This was my day at the mall looking at decorations, and driving the
neighborhood streets to see the sparkle, decorations and cheer.

I am sorry that I haven't mailed out Christmas cards.  Most who know me, know that I mail out probably too many and too early.  This year I didn't. 

Also, I have been so out of it this season that I did not get special cards and gifts out either.  Please accept my apologies.  Next Christmas I hope to be in good shape.

Snow has been off and on, and has not totally melted.  We may just have a white Christmas!



My thoughts and love are still with each and everyone, wishing you not only a Merry Christmas, but a happy 2011.

Well,  I have had some fairly "new normal" days.  The side effects of my chemo treatment are still wearing on me a bit.  I seem to feel really cold in my legs and feet, and at the same time continuing to run about a degree temperature.  The fatigue I expected, don't like, but figured it would get me, headaches,  sore gland in throat, occasional blurred vision, itching.  The itching and burning is from hives that seem to want to stick around.  But, with the list of possible side effects much longer my complaints must seem silly. 

I have too much to accomplish during the day to laze around.  But finally gave it up on Wednesday and rested.   Oh yes, "patience" continues to be a work in progress. 

One of the side effects I have is a problem with is confusion and lack of focus!  A couple of examples, yesterday I went into the laundry room to find my popcorn bowl and empty drink container on a shelf.  Why did I take them in there, rather than the kitchen?  Coming back from the doctor yesterday in Othello' I pointed out a pizza business to my sister..."look, that's just like the one we went to the other day!"  Duh, she said... it was the one we went to the other day, but in my mind I was seeing the one in Quincy as the one we went to.  I am not too pleased with this development.  It too will pass, I command it!

I wanted to be able to focus on the new Chronicles of Narnia movie, so I watched the first two again.  I also looked up book reviews, movie reviews, notes from the author, etc.  I did this before watching the movies again.  Wow, there was so much I missed the first go around.  Now, I am looking for movie/book reviews to read before watching the third movie. 

On Monday, after Christmas I have another doctor appointment.  This one is with my oncologist and it will be a review of all my latest tests, including the blood tests earlier Monday morning.  I hope that all is well enough for me to be able to do chemo on schedule.  After suffering with these delightful hives, I am worried about my white cell count. 

After the doctor appointment, we (my sister, brother-in-law and I) will be going to visit my neice and her family in Battle Ground for a few days.  I really miss being the hostess of Christmas, this was my favorite time of the year. 

My ex-husband (friend) asked me if I wanted Oscar cologne for Christmas.  I told him no, as I am not liking most smells at this time.  Years ago when we divorced, I reminded him that "in the fine print" of the divorce papers was written that he must continue to buy me Oscar cologne for the rest of my life.  Of course it is not, but I do get Oscar!  He is off the hook for cologne this year.  But,  he did offer to buy me Benedryl for the hive issue.  What a guy!  I guess that is one reason he is still my friend. 

A great big hug and thank you to all of you who have been praying for my health issues.  I do not take anything for granted, and cherish each and everyone of you! 



My hair needed trimmed, so I asked my
 sister to use her Flowbee.  This hooks to
the vacuum cleaner.  You put on the attach
ments to the length wanted and suck it up!

  That is why I had to make sure Gloria understood this time to take 1/2 " off, not leave 1/2" of hair.



I kept hoping that the vacuum wouldn't
pull the remaining hair off my head too. 
Yeah, wouldn't that be a hoot.



Hello...

So much information... I am on overload. 

I went into the doctor prepared for a diagnosis, and did I get one!  The reason it was so difficult for the medical profession to diagnosis me was that I tend to be unique in all that I do.  I am going with a narrative form this post as I have so much, and can't focus very well yet.

Monday, 12/06

• CLL Chronic Lymphocytic Leukemia "normally" sets up house in the liver and spleen, mine did not.  I began my journey with CLL showing up in the kidney and renal artery mass.
• It was confirmed, again, that I have a two plus inch size nodule on my Thryoid.  And no, I cannot deduct these growths in my body off my total body weight, that was a downer!  If the chemo has reduced this growth in size after two complete chemo rounds, then the doctor will know that this is somehow connected to the CLL.  If not, then a biopsy will be ordered to see what "if anything" it is.
• I am not clotting like I am supposed to be, so bleeding has become a problem.
• As a result of bleeding, I need to have my feet covered.  Now that is stress for me as I prefer flip flops even in the winter.  I just don't like my feet closed in.
• Keep track of bruises, bleeding, feaver, cough, anything different from before CLL.
• Have to keep a high protein, calorie diet.  Lots of water and like drinks.  Soda, coffee drinks, etc. do not count as liquid.
• Wash, wash, wash... hands and everything else in sight.  Infection can be a problem.
• The port was wonderful to have.  One access all week long while in chemo.  Everything piggybacked off of the one access.
• Lots of liquids means that I will never sleep another complete night again, as I will be up and down going to the bathroom.
• During the weeks I have chemo, my schedule with be Monday and Thursday (long days 6+ hrs), Tuesday, Wednesday and Friday (short days 2 1/2+ hrs).  My chemo medications begin with three Benedril, Compazine, a steriod.  Then Retuxin (R) and Fludarabine (F). Monday and Thursday both of these; Tuesday, Wednesday and Friday only one of the drugs and I can't remember if it is R or F.  Allopurinol, Prochlorper and Oxycodone as needed and Tylenol.  Saturday I will go in for my Neulasta shot. 
• So after my early appointments chemo starts today.

Tuesday, 12/07

• After a full day yesterday, I am ready for a short day!  No issues today, the staff here is so welcoming.  What a pleasure.

Wednesday, 12/08

• My body has been accepting the chemo medications so they are now able to push them thru my system a little faster.  My days at the hospital can be cut by "maybe" 30 - 60 minutes.
• The sun coming thru the window has been like a kiss from the sun.  Snow and ice melting!  Walking on pavement, concrete... driving and walking without slipping is nice.  There are so many things we normally take for granted,  I now acknowledge and appreciate!
• My friend who drove me to my appointments agreed to take me to the mall.  No, I really didn't feel well... but was determined to see the Christmas lights, have lunch out, decorations and feel the atmosphere of the spirit of this season.  Since I won't have my decorations up, or family over, etc. I wanted to be a part of it all.  Then what do I do, forget the camera in the car which is "way" out in the crowded parking lot.  My friend came prepared and saved the day! 
• Went to pick up a prescription, only to find that Walmart would be out until next week.  Transferred it to another pharmacy and went to get it.
• A special trip to the post office and forgot the card on my bed for the parcel pick up.  Another day...
• It is true, I was told to watch out for "chemo" brain, ha ha.  I missed my soda bubbles in the morning, and decaf coffee... why bother, brewed green tea and that was an eye opener.  Have to locate some decaf green tea. Maybe I will be safe with hot water and lemon, along with Tylenol to help with the caffine withdrawal headache.
• A very nice thing happened to me today.  I have helped make quilts over the years to go to cancer centers, soldiers, etc.  But, I have never been given a gift such as that.  Today the ladies came in with smiles and good cheer.  So proud of what they had to offer, and did offer me... I didn't have the heart to say "no thank you, I can and have made my own."  I felt good to be remembered, and accepted it.  The gesture reassured me that nobody is wasting their time doing something for another person.  I will slip a replacement quilt into their stash "from a friend" so that another person can receive this act of good will.

Thursday, 12/09

• Another long day.  I am so tired that sleeping here is no different than being in my own bed.  Trying to focus and complete a sentence is almost comical.  Next go around I may be used to this and it won't bother me like this.  But, if this is all I have to worry about... then, I am blessed.  It is good to have illusions, right?

Friday, 12/10

• Had a problem with my pulse rate going low.  At 38 the nurses started running around, ordered a ECG scan, and called my doctor.  It bounced back up to 44, then finally by the time I left the hospital that night went back and forth from 48 to 51.  This had happened to me before, but not in long time or while on chemo.
• My first week of chemo is ending.  It has been pretty uneventful if you look at what could be.  I'm blessed and happy about that.  The comfort drugs, quality nursing, staff, doctors, and most important my faith all worked well together this week.  Can you imagine that over the next six months I will be at this an additional 36 days! 
• Eat, eat, eat, the primary topic "have you eaten?" I have never been a bikini person, but at this rate I won't even be able to use a bikini as a bandaid!  On top of that, the steroids... remove all mirrors from this house.  I have been told high protien/calorie diet is a must.  Now, I am sure that doesn't mean pie, loaded coffee drinks, french fries.  Good calories, which means more groceries and money. I am going to the protien drinks as they are helpful, easier to use and hopfully less costly.

Saturday, 12/11

• Went in this morning for the dreaded Neulasta shot.  Actually the shot was a breeze, the discomfort comes later.  Anyway, left the hospital and decided to go straight back to my sisters in Royal City.  A good decision as it began snowing, and five inches later we were happy to be in a warm house.

Sunday, 12/12

• By tonight the Neulasta shot started showing its teeth.  I went into a cough/choking fit while eating and boy did it hurt!  Seems I am doing this more and more.  The thyroid growth? 

Monday, 12/13

• My oncologist and primary doctor are working together, as well as my new to the scene endocrinologist.  My blood draw, ultra sound and oncologist visit went well.  I also paid a visit to my primary doctor.  He adjusted my blood pressure/pulse regulating  medications, took away the Metformin as it isn't playing well with my kidney.  I was prescribed another family of medication.
• Concerned that I am not getting enough sleep, put me on Ambien.  I am now officially on uppers (steroids) and downers (Ambien). 

Tuesday, 12/14

• Reaction of some sort on Tuesday night, 12/14.  Believe it was the Ambien.  I have given it to Gloria for control issues. Infact, I have turned over all my numerous medicines to her for safety issues.  If I am waking up and taking medicine without remembering... well, that isn't good.  So, we are now filling my daily bottles together, but Gloria has the key so to speak.  I do not remember this, but appears I took a second one during the night.  My day apparently began early 4:30 a.m.  According to my sister, I got up, fell down, slid off anywhere I was placed to sit, and crashed my head into the coffee table.  She and Allen had their hands full with me!  Remember Allen has had a stroke, so with his good right side, helping Gloria, the hall is only so wide... everyone is laughing now, but it wasn't funny at the time.  I really wish there had been a camera mounted on the wall.  We could have made some money on America's Funniest Home Video.

Wednesday, 12/15

• Another interesting way to begin the day.  Never a dull moment!  I got up with lots of "hives" all over my body!  I am reading up on this issue, but I guess it is not uncommon to break out with hives after Rituxin and Fludarabine chemo treatment.  Lucky me!  I burned and itched so badly that without thinking I took a warm bath to relax me and feel better... NOT.  I broke out more.  So, off to the local rural clinic where I was abruptly turned away and sent to the next little town's ER.  In all fairness to the local clinic, they are not set up for a staggering, raised hive, breathless female with a few other issues.  I spent a couple of  hours taking a steroid treatment, given a prescription for a week more and sent home.  I did make sure that they faxed a copy of the report to my other doctors. 

Thursday, 12/16

• This morning an addition to my doctor list, Dr. Feria, Endocrinologist... the new doctor's nurse,  called. They wanted me to come in right away.  Well, Gloria and I hurried over there.  Dr. Feria went over the ultra sound of my thyroid with me.  Then, she did another one in her office and studied and measured the growth on the thyroid.  The size was 3.6 x 1.6.  She said it is large, but just because it is large does not mean it is cancerous.  Dr. Feria was prepared to take me in and do a biopsy right away when she realized that the study of my blood for coagulation was not complete.  (Remember the bleeding problem I was told about?)  She called Dr. Ness who was not a happy camper that the test he ordered was not ready for review. As soon as the test is finished, I will be called and go in again for the biopsy.  If it shows any signs of cancer, they will want to remove it.  But, the removal won't be done until after my first round (six months) of chemo is done for the CLL.  Also, the growth will be monitored to see if the CLL chemo is reducing the thyroid growth.  It is possible the two can be connected. 

It seems that there has been so much, and this post is sparce, but as I remember more I will post more.  The miles have been building, nodding off between towns is more common, my sister and brother-in-law are becoming saints (ha ha) and money is flying out the door.  But you know what, it is okay... I am still waking up in the morning and before I get up look for something positive to focus on.  It can be done... 

Christmas is only nine days away, remember the reason this season began... why the season even exists to be criticized.  That reason is the only way I know how to get thru all of this drama in my life.  And trust me, I don't know how I would have the attitude I have without it.  One may not agree with me, but please don't criticize me... I am not criticizing any of you.  Now, I am off my soap box and onto trying for some sleep! 

I am working on an update...

This past week with chemo was an experience.  I made notes so that I wouldn't forget what I wanted to cover.  I will not be home to work on my post until tomorrow (Monday 12/13) night. 

An address worth looking through...

I have really been on this site, and it has a lot of information on CLL!
http://clltopics.org

So far I have read the following:
http://clltopics.org/Complications/MostatRisk.htm
http://clltopics.org/tchoices/BattleWar.htm
http://clltopics.org/Complications/ITP.htm
http://clltopics.org/tchoices/NeedtoKnow.htm
http://clltopics.org/Complications/mrsa.htm
http://clltopics.org/Complications/EnemyWithin.htm
http://clltopics.org/tchoices/IVIgBenefits.htm
http://clltopics.org/Complications/InfectiousComplications.htm

But... there is a lot more at this address.

Off for a week ~ going out of town to chemo...

I will be taking notes so that when chemo is over it will be easier to update my blog.  There have been issues lately of forgetfulness.  Now, to hear my son tell it... this is not a new thing.  I disagree, I can't remember that much of what has been "supposably" forgotten. 

My Christmas decorations are packed away in my storeage which is in Kennewick.  I am in Royal City.  The plan was to go pick them up on my last visit to the doctor, but that ended up being the last thing I was into after my diagnosis.  Then it is cold, and digging through packed boxes for decorations that I will not be home to see most of the month... guess I will let it go this year.  I love Christmas, lights, decorations, all of it.  So, I am going to make sure that I put myself in locations where there is lots of Christmas cheer and festivity during December. 

This cancer may be slow growing, but that doesn't mean it isn't complicating my daily routine.  Yeah, I am whining.  I used to joke about getting older and having a social life within doctor's offices, grocery stores and so on.  Guess what, I am there!  It seems that while I am not totally disabled, there is no time or money for anything fun to do.  My extra money goes to medical co-pays, gas to get back and forth, food on the run during the days with doctor appointments, tires and mechanical to keep the car safe for travel, and I could go on.  The time I would go to sewing, church, visit friends... well, it is getting ready to go or coming back from doctors, tests, errands to pick up medicine, food I can eat, time on the phone or in person making arrangements for payments to medical facilities and insurance appointments.  Then when you throw in not feeling well, it becomes overwhelming!  Okay, now I have whined... time to buck up and count my blessings, because there really are many.  I need to focus on them.

I'm back... and have a diagnosis!

Well, we are through the Thanksgiving holiday, did everyone get enough to eat?  Now begins the countdown to a Merry Christmas!  And, yes I said Merry Christmas... not Happy Holiday.  To get us in the mood, we have been having some cold, white weather...

Tuesday morning, 11/30, Gloria and I left Royal City at 6:30 a.m.  It was snowing, the roads were covered and there was fog part way.  Yes, one might say we should have called in and rescheduled my appointment.  NO, that was not going to happen again this week.  We made a decision, packed our emergency box of blankets, lights, food, water, etc. and headed out for my 11:00 a.m. oncologist appointment.  It was slow going, and we stopped twice, but made it in plenty of time.  Along the way is a business called Country Mercantile.  Out front they have a large sign advertising homemade ice cream.  We actually stopped for the restroom, but were sure tempted by the ice cream.  Crazy... early in the morning, cold temperatures outside, and snow/ice on all available outdoor surfaces. 

When I arrived at the doctor office, everyone was surprised that the snow had not stopped my travel. Yeah right, and wait another week for information.  The doctor advised me of my test results. 

The official diagnosis is CLL (Chronic Lymphocytic Leukemia).  Normally, CLL originates in the liver and spleen.  Since I never do anything by the book, and mine started in the kidney area, everyone had a difficult time determining the name of my particular cancer.  So, now we know.

Chronic lymphocytic leukemia is a blood and bone marrow disease that usually gets worse slowly.  It is the second most common type of leukemia in adults.  http://www.cancer.gov/

One can live a long time with low grade cancer such as this.  According to the doctor, I have already lived with this a long time. 

In CLL, too many blood stem cells develop into abnormal lymphocytes and do not become healthy white blood cells.  The abnormal lymphocytes may also be called leukemic cells.  The lymphocytes are not able to fight infection very well.  Also, as the number of lymphocytes increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells and platelets.  This may result in infection, anemia, and easy bleeding. http://www.cancer.gov/

Lymphocyte is a type of immune cell that is made in the bone marrow and is found in the blood and in lymph tissue.  The two main types of lymphocytes are B lymphocytes and T lymphocytes.  B lymphocytes make antibodies, and T lymphocytes help kill tumor cells and help control immune responses.  A lymphocyte is a type of white blood cell. http://www.cancer.gov/

Leukemia is cancer that starts in blood-forming tissue such as the bone marrow and causes large numbers of blood cells to be produced and enter the bloodstream. http://www.cancer.gov/

After reading the stage process, I feel that my situation fits in a Stage 3 or Stage 4.  I forgot to ask that question, but will next time I see the doctor.

CLL may cause complications such as:

• Frequent infections.  People with CLL may experience frequent infections.  In most cases, these infections are common infections of the upper and lower respiratory tract.  But sometimes more-serious infections can develop.
• A switch to a more agressive form of cancer.  A small number of people with CLL may develop a more aggressive form of cancer called diffuse large B-cell lymphoma.  Doctors sometime refer to this switch as Richter's syndrome.
• Increased risk of other cancers.  People with CLL have an increased risk of other types of cancer, including skin cancer, such as melanoma, and cancers of the lung and the digestive tract.
• Immune system problems.  A small number of people with CLL may develop an immune system problem that causes the disease-fighting cells of the immune system to mistakenly attack the red blood cells or the platelets.  http://www.mayoclinic.com/
• There are others... but this gives you an idea.

There is a lot of information to read about this, and I am just beginning.  There is no cure, but treatment will help.  The doctor decided since I have had three invasive biopsies already, he is going to put off the bone marrow biopsy until after a couple of months treatment.  Fine by me since I hear that one hurts!

I start this coming Monday, 12/06, with chemotherapy.  The doctor will treat me with what he called F and R.  F is fludarabine (Fludara); and R is retuximab (Rituxan).  If after two months the scans do not show enough change, another chemical may be added.  That chemical is C, cyclophosphamide (Cytoxan).  The medical staff use initials.  Monday, Tuesday, Wednesday, Thursday and Friday will be chemo days. 

Saturday I will go in for a Neulasta injection, helping the white cells.  Now, from what I read this is not a pleasant injection.  Not so much the needle, but the effect for days afterwards. 

This schedule will take place the first week of each month, for six months.  After that, the doctor will review my case.

In addition to all of this, the port that was placed in my upper right chest is uncomfortable.  Think I told you that already.  Well, the doctor sent me for an ultra sound on the area.  It is tight, and right up next to my thyroid.  There were murmur's that it may be possible the doctor will want to re-install my port.  Yippee, that excites me!  Note the sarcasm there?