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?

Snow anyone?

Good morning, and brrrrr it's cold outside (16 degrees, but feels like 0 degrees with wind chill according to weather channel).  Gloria and Allen braved the cold.  Gloria made me refrain from shoveling due to my recent procedure and my asthma.  Next time... I will get to play outside too.  Of course most of this is from drifting snow, but it is still cold and has to be shoveled.

Today I was supposed to drive to Tri Cities for three doctor appointments.  Short Stay at the hospital for a blood draw and flush from the port; the Intervention Radiologist was to come and check the blisters and bruises that formed around the incision.  The tape, I think, is what caused the blisters, and the bruises are large and colorful.  It is strange though, as I have never reacted this way before.  After that, I was to go to the Oncologist for test results and chemo schedule.   The genetic test results are in, I called yesterday.  Now, the weather won't cooperate!

Since my son is on duty today, I really would hate to risk the trip and have him have to respond to an accident I was in.  I am sure that I would receive a lecture, especially since he warned me of the roads last night.   The news said that Tri Cities had hundreds of accidents yesterday.  The first snow, people careless or caught unprepared and without snow tires, create lots of work for emergency services.  Texted my daughter in San Jose to ask her if she missed this weather... a resounding NO was her answer. 

I asked if the doctor would call me during the time I was scheduled to come in.  Time runs slow when you are waiting.

Thursday, 11/18/10

Thursday, November 18, 4:00 a.m.,  I am up getting ready to leave for Tri Cities for installation of my implantable port.  Since the clocks have been changed, it was very dark on the country roads.  I notice that more when I am alone on the trip.  (My sister has to take her husband in the opposite direction for an all day chemo treatment)  While driving along I really took notice of the small city lights making the communities look larger; the train moving along side the highway making its clanging and tooting sounds; large trucks filling up the early morning roads, animal eyes (deer, cows, cats, etc.) reflecting in the headlights... then, the sunrise as I was entering Kennewick.  At this time in my life sights, sounds, experiences... nothing is taken for granted.  I have been given the gift of more time on this earth and I am going to use it wisely!

A friend from Kennewick went with me to the hospital.  The staff at the hospital were in great spirits, and did a good job of bantering with me to keep my spirits lifted.  The procedure took little time, and by noon was out of the hospital on the way to my son's home to rest.  There I slept the rest of the day, visited a little in the evening, and slept that night.  Awake bright and early the next morning, I dressed and left to run errands and head back to Royal City. 

Since the pharmacy did not open until 9:00 a.m., and my car windows were really dirty from the country roads, went to the car wash.  As I was scrubbing the car with the brush, the "port" area was hurting.  Duh...  I kept thinking as the scrubbing continued, "Hmmm, wonder why it is hurting so much this morning?"  Where were my brains!?!?  I went back to the pharmacy and picked up Tylenol rapid release, a jar of juice and drank down two pills.  That's like my going out and weed eating the lawn edges the afternoon I came home from having my bladder removed.  It is not like I am trying to be stupid, it's just that I have been alone so long and when something needs done... well, to procrastinate does no good when I know that I am it!  Okay, I don't think.. just do.  My daughter cringes, and says I am in denial.  Her theory is that whenever I am told "no" that "I do" to prove I am not a ninny, a whiner or have a pity party to gain attention.  Maybe so, I am not aware of it though.  Oh no, after I read that and thought of the defination of denial...hmmm.  I just hate it when my children are right! 

My blood pressure was quite high this morning, and now with my body being upset with the morning exercise, I felt like resting.  But... my friend told me that a new sewing and craft store opened in town.  I just couldn't bring myself to leave Tri Cities until I checked this place out!  By the time I finished that, I was hungry and needed to let another couple of Tylenol begin working.  So, called another friend and had lunch with her before heading out. 

By late afternoon I was back in Royal City, and the port area was burning like fire.  The bandages were due to come off within a day anyway, so took them off.  Red, rash, blisters... who knew I reacted like that to tape.  It is not like I can scratch the area, the incisions are still too fresh.  The blisters are surrounding and between the two incisions.  What to do with my hands to keep them from automatically reaching up to scratch!?!?

Yeah... I got through all of this and still no snow.  It was reported that snow would hit before now, but by tonight and the next few days chances of sporatic snow is in sight.  I am ready... my new snow tires are on and my new battery will ensure quick starts.  I still take my "box" of stuff, blanket, water, munchie, etc.  One never knows when they will be stranded. 

Some news today, and yet I still wait for a definate diagnosis!

My mind is still collecting itself from my trip to the doctor today.  Is it natural to leave the doctor office with your thoughts whirling around in your head?  Okay, let's back up... I went into the doctor office with my sister and waited, waited, and waited for the doctor to come into the room.  I turned to Gloria and said, "You will probably have to visit me in the hospital later today.  I will be the one heavily medicated, so that I will not go ballistic, when the doctor finally gets into this room and tells me that my results are not in."  After a few more minutes both she and I were nervously laughing, thinking "no way" would that happen again. 

The doctor came in... keep in mind this is the doctor who is really trying to get things in motion for me.   I really don't want to be rude to him, so I keep telling myself to be patient.  Yes, I am still a work in progress regarding patience.

After reviewing news he has already given me, the doctor says he is still waiting for the pathology report on my genetic testing.  It should be in by the end of the week.  Did I hear that right?  Then to put a positive spin on the visit, he again theorized that once he knows exactly what type of B Cell Lymphoma I have, he can plan the proper Chemo treatment.  Most likely it will be one of three or four cancers he is considering.  If the report comes back as he thinks, the treatment will probably be Chemo once every three weeks, for a total of six treatments.  The day after each Chemo treatment I will be going in for a shot, this is to help keep my white cell count up.

After returning home today, I started reading on healingwell.com about this shot for my WBC (white blood cell count).  Even though it wasn't great news, I am one who wants to know what is going on.  Going in mentally prepared helps me. 

I am now waiting for a call confirming an appointment for later this week to install a port ( or portacath).   On Tuesday, 11/23 I have to go in for a port blood draw and see the doctor.  At that time I am supposed to find out my Chemo schedule, which is supposed to begin right after Thanksgiving.

From Wikipedia, the free encyclopedia:  A port (or portacath) is a small medical applicance that is installed beneath the skin.  A catheter connects the port to a vein.  Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick"...  ...The port is usually inserted in the upper chest, just below the clavicle or collar bone, leaving the patient's hands free.

 

Images from righthealth.com 
My brother-in-law says that having a port is really helpful for him.  Less pokes for me is always a nice thing.  He also told me there is a trick to breathing in and out when poking the needle into the port.  If he does it right, no pain is felt.  Yes, I am for that!



Tonight I am thinking how blessed I am.  This news of cancer could be so much worse than it is.  Yes, I will always have it; have to watch over it; do treatments for it; take medication; feel side effects; but, I will learn to live with it and the emotional baggage it carries.  Did you note that word live?

I point blank asked the doctor today what I was looking at in longetivity.  He, of course can't give me exacts, but said with low grade lymphoma worst case five years.  Or... ten+ years!  I am looking at the ten plus years for me.  I will need that much time to finish all of my quilting projects I have begun!

Jeremiah 29:11

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."  NIV

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image from guy-sports.com

Prayers for Monday, 11/15...

Here we go again.  I just received a call from my Oncologist office reminding me of my appointment on Monday.  It was so tempting to say... "please, give me a hint... will you be able to tell me anything this time?" 

The first biopsy from the renal artery mass, labs not able to give a definate diagnosis; John Hopkins not being able to give a definate report; second biopsy from the kidney, still no diagnosis of the type of cancer; and finally the last biopsy, pending. 

So, prayers needed for some definate news, treatment plan, and may it be the best possible news considering the situation.  I'm for believing... with God, all things are possible.

Insurance.... ugh!

Insurance gets to be overwhelming and confusing.  I have been under a Medicare Advantage plan.  As I said in a previous post, understanding the difference between Advantage, Supplemental, Medigap, Individual, Medicare as itself, and others is difficult.  I did not understand or choose wisely to begin with, as a result I was ready to go with a change to a Supplemental plan during my window of opportunity this year.  Wrong! 

My Advantage plan had to stop selling in Eastern Washington beginning 2011.  So, the decision to leave that plan December 31, 2010 was a good one, except...  From what my insurance agent told me closure of the Advantage plan that I was on is leaving 12,000 or more senior citizens in my area without their current coverage.  This plan was affordable, it was of financial help to people in my financial standing, and position in life.  Now, so many people are scrambling to find insurance protection before the window closes.  What happens to the person who is not able to research, drive to insurance agent appointments, understand what is going on?  I am not sure I actually understand what is happening.

Unique is what my situation is.  I am on Social Security Disability, age 61, qualifying after two years on disability for Medicare and a member of AARP; this still does not qualify me for Supplemental insurance.  In Washington there is legal talk for why I do not qualify.  I am not sure of it all, and am researching more.  The state I live in does not require insurance companies to sell Supplemental to those under 65 years of age, even if they qualify with all of the other requirements.  Yes, I am confused!  My window was rapidly closing, so a decision had to be made or I would be without coverage.  Also, no luck for an individual policy as I have pre-existing conditions. 

My insurance agent found an Advantage plan that would take me.  No, it isn't a great plan, but better than nothing!  I count my blessings that I am able to make the calls, drive to the insurance appointments, and research on the computer.  What about those who cannot, and have nobody to help them?

Not hearing what we want to hear?

  Recently I have encountered some of my acquaintances with stubborn attitudes.  No... really?   Yes, and with closed minds they are hurting themselves.  I had hoped that some of my research would help those individuals help themselves.

No, I don't expect anyone to take my word alone for what I have been researching.  I did hope that the information would trigger an interest into reading up on information that may help one's future health.  Let's take one example:  Question:  "Have you read on aspartame, and it's effects on a persons health?"  Answer:  "Oh, that is ridiculous...the FDA wouldn't permit it to be sold if it was not okay to consume!" What a common response... even one I had for a while.  Now, after reading what I have and having one of my doctor's point blank ask me if I have had a large consumption of artificial sweeteners over the past ten years... that, among other information, woke me up! 

Sometimes I think (from my own experience) that people know what you are saying has some truth to it, but that doesn't mean they want to hear it.  Rambling along in one's comfortable daily life is what all of us would prefer to do.  Unfortunately, we cannot!  I can wish with all of my might that I had listened years ago, but I didn't.  Again, it hasn't been one thing that has led me to this path in my life, rather a combination of numerous things that I ignored as an overreaction to the "bearer of  bad news." 

We all have freedom of choice in what we consume, expose ourselves to, etc.  I just pray that you don't have to look back and wish like I do, why didn't I listen?

A little humor, thought of my son... Washington State Patrol Trooper, when I saw this. 

Difficulties... an email I received, and would like to share.

I received this message, unknown author...

Difficulties are the most essential part of our life.  Many of us feel cheated when we face difficulties.  We feel that God is giving us more than our share of difficulties.  This is wrong.  Isn't it?  The opposite is true.  God gives more difficulties to those who he loves.  Don't get surprised.  Only when we know how to face difficulties with a brave face and faith, we come out as a better person.  Only after we come out fighting all out, we feel proud of ourselves. 

I know that you are facing difficulties.  Please face them bravely and courageously.  Have faith.  You will win.

Saturday...

On Wednesday my sister and I got up very early, dressed and hit the road.  Again, leaving early in case we met a convoy of farm equipment.  If you have ever been behind a long line of slow moving farm equipment, you know that driving down one long road could add thirty or more minutes to the trip.  My check-in time was for 8:30 a.m.

My Oncologist and the new Intervention Radiologist spent quite a bit of time going over all of the other tests and results.  Then, I was taken in for another Needle Guided CT scan biopsy.  This time my doctor did not want to take any chances the samples would not be enough in quantity or quality specimens.  Right next to the table I was on, the lab set up a microscope and a person to look and make sure all samples were good. 

I found out later that the biopsy samples were not taken from the renal artery mass.  Everyone seems to be afraid to mess with that one!    The tissue was removed from the kidney.  Pro's and Con's on that hit my brain.  In the beginning, it was explained to me why that procedure should only be a last result test.  From what I remember, when removing the needle from the body cancer cells can drop from the needle.  This action can leave damaged cells along the path of the retreating needle.  Okay, the doctors are getting frustrated so maybe this was a last resort to diagnosis the type of cancer.  Again, there are approximately 70 types of lymphoma and the exact type must be determined.  In addition to the cancer information, was told there was not cancer growth in the chest area, but there is a nodule on my thyroid. 

The hospital decided to keep me longer than I anticipated.  I was not released until 6:00 p.m.  Gloria took me to my son's house to spend the night rather than drive back to Royal City. 

Through the night I was in a lot of pain, as well as bleeding from the uretha again.  This has been on and off since the second biopsy, stent implant, etc.   Before my sister left to go home to tend to her husband (who has cancer) she handed me the discharge paperwork.  Oh yeah, middle of the night, reach for the phone to call the hospital and remember I gave it to Gloria for her trip home in the dark.  Decided to read the discharge paperwork and found that she had given me her current crochet project pattern by mistake.  Ha ha...

Through the evening/night I kept passing blood and clots thru the uretha.  My son offered to drive me to emergency.  I looked at the clock and realized the doctor's office would be opening in just a few hours, so didn't go to ER. 

Thursday afternoon the Urologist removed the stent.  It was completed in the doctor's office.  Quite honestly, with the medicine inserted into the bladder the procedure was not painful.  A bit uncomfortable, but hey... I'll take that over pain any day.    From what I was told by the Urologist, bleeding and clots are common.  Why wasn't I told?  The clots were blocking the uretha passage, and the end result was not pleasant!  Still today (Saturday) having a bit of problem with that.  Think my body is just cleaning out "stuff" from when the stent was in. 

Waiting now,  for the report to tell me what type of cancer I have.  After that is determined, the Oncologist will decide the treatment.

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Thank you everyone who continues to pray for me.  It has given me such a sense of peace to know that I am covered with prayer, good wishes, and receive comforting comments.

"Another" biopsy planned for tomorrow, Wednesday, 11/3...

Ugh . . . . . . . what next!

2:00 p.m. received a phone call from the oncologist's assistant.  They have received a response from John Hopkins Cancer Center...  again, NO INFORMATION or firm diagnosis!  Why? Due to the information/specimen provided.  Remember, this is the biopsy of the mass on my renal artery that I had on 09/30.  For whatever reason, it did not make it to John Hopkins Cancer Center for an opinion until 10/22.   My oncologist, who is attempting to correct this mess (that was created somewhere else), is arranging for a new biopsy right away. 

2:30 p.m.  a second call from the oncologist's assistant, advising me that she was able to get a intervention radiologist within their medical building to put me on tomorrow's schedule. 

 310 p.m.  third call from the intervention radiologist office. 
Note:  The interventional radiologist is a medical doctor who has completed four years of study in radiology.  They treat a multiple of conditions inside the body from outside the body by inserting various small instruments or tools, such as catheters or wires, with the use of various x-ray and imaging techniques (i.e., CT scanners, MRI scanners, ultrasound scanners). Interventional radiology offers an alternative to the surgical treatment of many conditions and can eliminate the need for overnight hospitalization, in some cases.

Check into the hospital at 8:00 a.m., visit with doctor, get prepped, and the procedure at 10:30 a.m.  After the procedure I have to stay for observation for 2 - 3 hours.  This is the same procedure that I was previously told how dangerous it is because of the location to the renal artery. 

Too much time on your hands... plan ahead for it...



Managing my time...

 I have found that empty time while waiting for doctor appointments can be stressful.

Rather than sit around and count the hours until my next appointment, I am always looking for projects to occupy my mind and time. Keep a list of what I call "brain flashes" so that they can be used when having a difficult time thinking of something to do. In a rural community, there is only so much activity a person can do.

For myself, it is important to keep my mind occupied with reading, projects, research, etc.  If I did not have my "brain flash" list of to do's, anxiety could take over.  I am fighting that with prayer and keeping busy. 

 As much as I am on the road to the Tri Cities with doctoring, I have grown to dislike driving back and forth as well as the gas expense . . . but, decided that I would go this weekend anyway.

First stop... was cold, drizzle fell, but the football game went on. I really have to get out winter clothing. I went in flip flop sandals, capri short pants... but, I did take a blanket and coat. This was the play-off game. Good game on the teams part, as well as my grandson making interceptions, yards, two touchdowns. Yet, in the end the team lost. As a result, they are not going to super bowl; that saddens me since it is the last year my grandson can play on this team due to age/size. It has been a few years of good football, now it is time for freshman football. As a grandmother, I have been happy to watch him play, and proud of his growing abilities. Okay, I am a bit prejudiced...



Again I hear that my granddaughter, in California, made another soccer goal! Haven't received the details yet.  Congratulations !

Second stop... I found that there was a church event on Saturday evening. Arrangements were made to spend the night with a friend so that I could go Saturday evening, as well as Sunday morning. It was so nice to see people that haven’t been seen for a while, as well as music and the message.

Sunday morning passed too quickly. I missed the "trunk or treat" get together later in the afternoon at church. People gathered, decorated their vehicle trunks and children went from trunk to trunk to collect candy. Not wanting to drive home on the country roads after dark, my trip back had to begin before the fun began. The pictures were great on facebook.

Again, the car trip triggered my bladder walls to vibrate. It is not painful, but it is distracting and leaves me feeling as if I have to find a bathroom every few minutes. The question becomes, do I ignore this feeling? Or, do I live to regret driving past a rest area. I hope this will stop when the stent is removed from my bladder/ureter/kidney.

Two days until I head back to Tri Cities for my oncologist appointment on Wednesday. I am praying for news from John Hopkins Cancer Center. Thursday I make the three hour round trip again for the stent removal.

Tomorrow is Tuesday... please don’t forget to vote! I am not promoting how you vote, just that you do vote. Don’t take voting for granted. One never knows (for whatever reason) when it may be their last opportunity to exercise that right.

10/28/10 Doctor Appointment

How do I begin this post?  I am trying to keep an open mind, understanding that mistakes can be made.  But, I am so tired of waiting for a definate diagnosis.

With no farm equipment on the country roads, we arrived early at the hospital.   I spent the next three hours drinking a Berry Smoothie contrast drink and waiting for my time in the CT scan.  When called to have the test administered, I had forgotten that there would be an IV with a chemical that temporarily makes your body feel flushed (warm).  This IV makes you feel as if you have wet your pants!  Don't panic, it just feels that way. 

After finishing the scan, I passed by the wonderful smells of the cafe and coffee kiosk wishing I could take the time to stop.  Arrived at the doctor office, waiting for my son to arrive as well as the doctor to become available, the nurse came out to talk to me.  I was advised that the third opinion report from John Hopkins Cancer Center(for the biopsy on 09/30) had not arrived!  My appointment was rescheduled for next week when the report and scan reports should be in.  My mind went numb, and while I normally would question this, get upset over the additional delay and/or verbal, I didn't.  I just accepted the new appointment and left the office.  Honestly, I don't know what happened to me.  My thought process just shut down!

I called my son who just arrived in the parking lot, told him he may as well turn around and go home to sleep.  He works grave shift right now.  I looked at my sister and asked her if my family would find out a definate diagnosis during my autopsy.  All of this time "waiting" for a diagnosis delays treatment!  Anyway, my sister took over and left a message for my son and was able to get my daughter (in California) on the phone.  Long distance, she made a phone call to my oncologist office and was able to find out more information. 

Long story short, unknown why... the request for third opinion on my 09/30 biopsy had just been received by John Hopkins Cancer Center on Friday, 10/22.  My oncologist office is checking into this, and requested the report be back by this coming Tuesday.  I have another appointment Wednesday, 11/03.

In the meantime, I have been having the strangest sensation in my abdomen.  The stent is still in my ureter passage, anchoring on each side (bladder and kidney).  My bladder feels like it is trying to expel something, a shivering of the bladder every so often.  Not painful, just weird!  Thursday, 11/04, this stent will be removed. 

After all of this, Gloria and I found a place to enjoy lunch.  Of course when you are hungry, eating too fast and too much is not good.  The drive back to Royal City seemed longer than the normal one and one/half hours.  By the time we started driving home on a full stomach, the contrast drink started messing with my digestion.  Also, I cannot take my diabetic medicine for 48 hours after the CT scan as it doesn't interact well with Metformin.  So, my blood sugar was reaching higher levels.  Between all of that, the rain, lack of information, my mind was in a fog. 

I had a talk with myself this morning, and decided that nothing works perfectly. So, I need to get over this set back and remember that today was given to me for a reason.  Use the day wisely!

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I am going to explain what a CT (Computed tomography) scan is because there have been several inquiries about this.  Alternative name for this test is CAT (Computed axial tomography) scan.

 Excerpt from http://www.nlm.nih.gov/medicineplus/ency/article/003330.htm


In this procedure,a thin X-ray beam is rotated around the area of the body to be visualized.

"A computed tomography (CT) scan is an imaging method that uses x-rays to create cross-sectional pictures of the body... Certain exams require a special dye, called contrast, to be delivered into the body before the test starts... Contrast can highlight specific areas inside the body, which creates a clearer image...
Contrast can be given several ways, and depends on the type of CT being performed...it may be delivered through a vein (IV) in your hand or forearm.

It may be given through the rectum using an enema.
You might drink the contrast before your scan. When you actually drink the contrast depends on the type of exam being done. The contrast liquid may taste chalky, although some are flavored to make it taste a little better. The contrast eventually passes out of your body through your stools.  If contrast is used, you may also be asked not to eat or drink anything for 4-6 hours before the test.　
Contrast given through an IV may cause a slight burning sensation, a metallic taste in the mouth, and a warm flushing of the body. These sensations are normal and usually go away within a few seconds.

The most common type of contrast given into a vein contains iodine. If a person with an iodine allergy is given this type of contrast, sneezing, vomiting, itching, or hives may occur.
　
The kidneys help filter the iodine out of the body. Therefore, those with kidney disease or diabetes should receive plenty of fluids after the test, and be closely monitored for kidney problems.

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Making a list, checking it twice...

Finding something to keep my mind occupied when not feeling well (or supposed to be resting) is my next goal (task).  Focus on a goal has been one of the things that keeps me going during hard times.  I have plenty of physically active projects, now I am making a list of inactive things to accomplish. 

I am just beginning this journey with cancer, then add in my high blood pressure, SVT, diabetes, high cholesterol, etc.  What do you have now, but a recipe for times I will have to take a break from physically challenging tasks.  I don't like to be told to stay down, so I fight it.  In the end, pushing myself has begun to hurt and prove my loved one's right and me wrong.  Oh gosh... another time I am admitting being wrong!  It is not my intention to make fun of myself... just have to laugh at this discovery of mine or I will cry.  I am afraid that this newly discovered truth about myself  is about to become a habit. 

During this past week or so, I have had more down time.  While "resting" my mind goes like a movie projector (dates me doesn't it... young people probably don't know what a projector is) and doesn't want to stop.  I review what I should be doing; projects not completed; health issues that need addressed; whine to myself about why I can't get up on the storeage shed roof and pound nails into the roofing that is flying away, harvest apples from the tree, pull weeds, set up my sewing area, etc.

Monday I received a call from the oncologist's office, comfirming the time, date, location and instructions for the PET/CT scan.  Thursday,before my oncologist appointment, will begin early.  I'll have to leave Royal City by 5:30 a.m. and arrive early at the hospital to obtain my contrast drink.  The next two hours will begin my yummy drink schedule.  My goal is to shut my eyes and imagine myself drinking a nice, hot coffee that is laced with cream, caramel flavoring... mmmmm.  After this, I will take a half hour (or  more) rest in the donut hole (CT machine).  What an imagination... I am visualizing coffee and donuts to keep me going until I can eat.  Stop... that is not going to happen soon, as I have another appointment to keep as soon as I finish the CT.  The worst part is that I have to pass the hospital cafe and coffee kiosk on the way to my oncologist office.

Prayers for this appointment, as I am hoping to receive definate answers to my questions.  The doctor's educated guess was good to receive, but I really want to know what "is" going on with me.

http://www.allaboutprayer.org/
The power of prayer is not the result of the person praying. Rather, the power resides in the God who is being prayed to. 1 John 5:14-15 tells us, "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us - whatever we ask - we know that we have what we asked of him." No matter the person praying, the passion behind the prayer, or the purpose of the prayer - God answers prayers that are in agreement with His will. His answers are not always yes, but are always in our best interest. When our desires line up with His will, we will come to understand that in time. When we pray passionately and purposefully, according to God's will, God responds powerfully!

Coming up on another week...

After my trip back to Royal City on Friday, I felt puny (weak, aches, dull pain) and have had bright red urine.  It seems that everytime I bounce around, or do anything mildly strenous the ureter stent bothers me.  Saturday morning I called the doctor.  Of course he was out of his office, but called me back right away.  His answer, "to be expected..."  I guess that is why he prescribed Vicodin.  I had not been taking the prescription as it makes me alert, ready to go, go, go!  So, I am trying to remain inactive and drink more water which is helping to flush out the blood and keep my urine moderately clear.  It feels like waddle, not walk, because of the liquid I  have consumed, and have frequency of urination.  So, a long nap is out of the question.



Kidney ureteral stent, one end in the bladder, up through the ureter, ending in the kidney.
Image from photobucket.com

 I have been reading up on ureteral stent removal.  That is coming up on November 4th.  First of all, let me say that I have read on more than one site the procedure for men and women are different.  Of course, due to the anatomy... but, many men get general anesthesia for the removal and women get a local if they are lucky?  Sorry, but I want something for the "moderately uncomfortable, but usually not intolerable" procedure!  I didn't even do natural child birth.  I like drugs that stop pain... call me a coward. 

Image from photobucket.com

The first part of this coming week, my oncologist is supposed to call me with an appointment to get a PET/CT scan.  I believe he wants the results back for our meeting on Thursday.  The PET/CT is a continuous full body scan, and both can be completed at the same time.  The PET takes pictures of the very small changes in the body metabolism.  This change is caused by growing abnormal cells.  The CT part pictures can let the doctor pinpoint the exact location, size and shape of cancer growths. No pain... and doesn't bother my claustrophobia!  If you notice, the tube is short in length. 

I am remembering my brother, Robert, today.  Birthdays come and go, but this is the first since his passing away recently.  Cancer is having an impact on our family this year...

Life, we can't choose what happens.  But, we can choose how we react to it. (author unknown)

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Finally... some news

We (James, Gloria and myself) met with the oncologist today.  The doctor read the radiologist report from the hospital where I had the biopsy on the mass surrounding the renal artery.  While waiting for the third opinion from John Hopkins Hospital, he made an educated guess.  During this meeting, he emphasized that we may have to trash all of this discussion if the third opinion comes back differently than his interpretation.

After a phone call, we found that the John Hopkins report should (hopefully) be in on Wednesday.  I have an appointment for Thursday.  Plus, the doctor wants a new CT scan of my abdoman and chest. 

This doctor is one of the two recruited oncologists to the local hospital's new oncology unit.  He has worked with cancer for a while, and seems to know what he is talking about.

The doctor's educated guess:
1.  B-cell cancer.
2.  Follicular low grade (slow growing) lymphoma.
3.  Not curable.
4.  Not to be operated on.
5.  Can be treated with radiation to shrink mass (if the mass is interfering with body function).  As in my case, the mass outside the kidney surrounds the renal artery. 
6.  Most times chemo is not used, as it is not effective on slow growing cancer.  For chemo to be really effective, the cancer cells needs to be active cell proliferation (grow or multiply rapidly).
7.  Consider this a chronic disease that I will have to wait and watch on a regular basis.  Shrink when necessary, and may be able to use a light form of chemo in some situations.

Okay, my head is still spinning.  I am not going to know anything "for sure" until next Thursday.  But... if the above guess is accurate, the cancer will just become a part of me like my high blood pressure and diabetes.  I will deal with it on a daily basis, forever...

The vibration from the trip rattled the stent up through my bladder,ureter and kidney.  It is really sore tonight, so again I am going to miss seeing my grandson's football game (tomorrow) in person.  I did see him this week, hug him and tell him I have been hearing good things about him and his games.   His team was wearing pink socks, supporting breast cancer awareness.  Yes!  Thank goodness for his mom and dad recording the games. 

My grandaughter made a score in her soccer game on Sunday, which enabled them to win the game!  She is in California, too far for me to see the game. 

Enough for tonight, after the trip home I am sore, tired and just want to sleep away some hours to clear my head.