Dec 26

Sorry I haven't updated for a while. Just had my 4th treatment 2 weeks ago. 2 more to go.  Been feeling pretty good except for chemo weekend.  I developed a blood clot in my neck about 2 weeks ago and I have been taking a blood thinner and giving myself shots in my stomach. UGH.  My blood is being stubborn and has not been wanting to thin out yet. I have to take the blood thinner for about 3 months.!! I am constantly worried now about cutting myself especially at work where I get a lot of paper cuts. Next chemo treatment is Jan 9 and 10.

Nov 7,

My chemo got canceled today. Went in to see Dr. and my white cell count is too low and my platelets are also low.  So have to reschedule and try for next week.. UGH

Oct 10,11

Thurs chemo went well no reactions.  I had the rituxan (melts tumors) first, no reaction this time!!  Then the bendamustin (kills cancer cells) felt really good after no nausea this time. Only bad side effect was sleeplessness but better then nausea and vomiting...

Fri. Went in expecting it to be all day again like last time but was only there an hour and a half.  Only had to do the bendamustine and thats it!! Yay.  Feeling a little tired after and so far feel pretty good.!!  Gonna make sure I take my anti nausea meds and hope for a good weekend.   Have to go get a blood draw Monday.

Oct. 9

Had some strange side effects lately.  Last Wed. started getting leg cramps that lasted for 4 days. UGH! Now my left elbow is numb and my vision is hazy.  Round 2 of chemo this week on Thurs and Fri.  I feel I am better prepared this time since I know what to expect. Definately taking the anti-nausea meds ahead of time.  Also hoping no reactions this time.

Wed Sept 25

Dr. appt today. Had to get blood work done first.  Dr. says my blood counts are all in the acceptable range.  Yay!!  I have lost a total of 25 lbs!! Excited about this.  Dr. says some of my weight was tumor weight and now that they are shrinking I will be more comfortable. Yay!  My energy is back and feeling good.

Sept 17

Horrible weekend. Sick all day Saturday, vomiting all night long. Sunday sleepy all day.  I was hoping by Monday I would be better and could actually go to work.. NOT!!!  Monday got up at 11 am after sleeping 15 hrs. and still felt tired.!! Had to go in for some blood work and then they informed me I had to come in Tuesday for more rasburicase.

*Rasburicase is approved for use by the U.S. Food and Drug Administration (and European counterparts) for the prevention and treatment of tumor lysis syndrome (TLS)^[1] in patients receiving chemotherapy for hematologic cancers such as leukemias and lymphomas. It is also being investigated for treating severe hyperuricemia from other sources (e.g., gout^[2] and other rheumatologic conditions).

It catalyses the conversion of uric acid to allantoin. Allantoin is an inactive metabolite of purine metabolism, and is five to ten times more soluble than uric acid, so renal excretion is more effective. Rasburicase is unique as a treatment and prevention for renal failure associated with TLS in that it catalyses the metabolism of existing uric acid. Other options prevent uric acid formation.*

Got my power port put in at 11am then had to get my infusion of rasburicase.  After testing my blood they informed me I have to come in Wed for more rasburicase. UGH!! My uric acid is still too high.  At least it doesn't make me sick or tired.  

Sept 13

Not such a good day with chemo.  I had a  reaction to the rixutan.  My throat got tight, had trouble breathing, face got all red, blood pressure went up and oxygen went down. A horrible feeling!!  They got me stabilized and then we started again but this time at a slower drip.  Did better after that just made it a long day.  :(

Sept 12, 2013

Day 1 of chemotherapy.  Nothing too eventful.  Hooked me up to the IV.  Started first with the rasburicase which is to prevent tumor lysis syndrome.  Then some anti-nausea med and then finally with bendamustine. 

*Bendamustine injection is used to treat chronic lymphocytic leukemia (CLL; a type of cancer of the white blood cells). Bendamustine injection is also used to treat a type of non-Hodgkins lymphoma (NHL: cancer that begins in a type of white blood cell that normally fights infection) that is slow spreading, but has continued to worsen during or after treatment with another medication. Bendamustine is in a class of medications called alkylating agents. It works by killing existing cancer cells and limiting the growth of new cancer cells*.

Feeling pretty good no adverse reactions.  Tomorrow Day 2 get to have more anti-nausea meds and some benadryl and then Rituximab.*

*Rituximab destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells, or dysfunctional B cells.*

September 5, 2013

I found out my test results today.  My CT scan shows some more lymph nodes enlarged in my chest area. There is some abnormal B cells in my bone marrow and in my underarm lymph node.  But I don't have any tumors in my lungs or my liver!! Yay!  So my official diagnosis is Follicular Non-Hodgkins Lymphoma. I will be starting chemo next week. Then I only have to go once a month.  Also told me the treatment they are doing will not make my hair fall out.!! Double Yay!  My first treatment will take 2 days total.  I also have to get a  power port put in to make it easier for blood work and chemo.  Exactly how long I will have to do treatment depends on the results, could be 6 months, could be longer.  This type of lymphoma is a reacurring type so it is something that will have to be closely watched after treatment.

Aug 29,2013

Surgery went well they removed a lymph node from under my arm. I first thought they were removing from my neck but underarm was a better sample.  So now I have a nice 3 in. red area under my arm.  Covered with bandage so can't see total damage yet.  Feeling great today, just a little soreness and good to go.!  Actually gonna do some shopping (good therapy :)  Get results on Thurs Sept 5, at 4 pm.

Aug 26, 2013

Get home from work last night and I have 3 messages on my home phone about surgery at 2:00pm.??  I am thinking what?  This is the first I have heard of it. Got up and 730 am and called office and I was scheduled for 2:00 for lymph node biopsy...well no one told me..! so that got canceled now surgery is scheduled for Thurs afternoon sometime.

Thurs Aug 22

Appointmen with Dr. Legant was at 10:00 am. Again she sits on the opposite side of the bed and starts writing to give us results of test.  She draws a picture of my body. Then starts making circles with a large one in the center.  The CT scan revealed that I also have tumors with one of them being quite large. Now she is saying that my ct scan points to something called Follicular Non Hodgkins lymphoma.  But I also have lymphocytes in my blood. But I have to do more tests before they can diagnose exactly what I have and how to treat it.  She tells us (ed and I)  that I am probably gonna be doing chemo.  There goes the hair!!  I have to do another CT scan this time from under breast to neck. And I will also have to do a bone marrow biopsy.  Ugh!  While we were at the Huntsman Cancer Center just decided to do CT scan while I was there.  No chalky stuff this time.. YAY! Pretty quick and painless this time, total 30 min.  I am scheduled to do biopsy on Fri. Aug 23.   We have to go to the U of U Huntsman this time.  When we arrive there after driving around a bit to find it we drive up to the entrance and it has FREE valet service. Wow! Finally find the place we are supposed to be. They get me in with little wait. I am expecting to have to get undressed, gown etc. Nope just lay on bed with shorts unzipped.  Biopsy involves taking some samples from my hip bone just above my butt. I can't see or feel much of what they are doing. Pretty painless. Most pain came from numbing shot, that stinging feeling.  But thats about it.  Put a bandage on it and away I go.

Results on Thurs. Aug.29.

Monday Aug 19

Went in for my CT scan today.  They are scanning under my breast to my pelvis.  I had to drink this thick chalky stuff that was berry flavored.   It takes 2 hrs to drink 2 bottles. Ugh!  Finally after sitting there for 3 hrs I was able to get the scan.

Also had my blood drawn the same day for CBC with platelet and a comprehensive metabolic panel.

Results on thurs Aug. 22

My story begins with a simple Dr.s visit. Having horrible hot flashes and night sweats it was time to get on some estrogen.  Went to see Dr. Becky, everything pretty normal, blood pressure check, ear check, stick out tongue say Ahhh, feel the neck. Whats this?  Apparently I had a lump on the left side of the neck about the size of a nickle. What is this? "I don't know" How long have u had it? "I don't know" I am referring you to a dermatologist. I want to get another opinion.  Ok.?? Why a dermatologist??  Had the appointment with a dermatologist whom I felt was pretty useless and a waste of money. Dr. Becky touched me more then him! Then he sat there and told his assistant what he thought in medical terms I didn't understand. Ok now what?What do I do with these lumps on my neck??

Whenever I go to see Dr. Becky she always orders some kind of blood work. Check thyroid levels, cholesterol, etc. So I had to go to the girl down the hall who draws blood. Pretty routine.  I got a call the next day saying your white cell count is up and we want you to come in a week and do another.  Ok another arm prick but not the end of the world. Well this continued for about 3 weeks, each time my count was higher then the last time.  I had an appointment set for July 30 to recheck thyroid levels and to see how I was doing with the estrogen, and to find out what was I supposed to do with these lumps in my neck.  Will they go away on their own, what are they??  Since my last visit I had found some lumps on the right side also but were smaller.  During my visit Dr. Becky checked my arm pits and my groin for lumps, none found.  She wants me to go to Jordan Valley Hospital for my blood work this time, since she can get results in an hour. Oh crap, I gotta park, figure out where I'm going etc.

She calls me later that night and says my white cell count is still up, even higher then before.  So she refers me to a hematologist.  A what? Never heard of a hematologist.  Ok get home and decide to google it. A doctor who deals with blood diseases. Ok.  When I call to get my appointment they answer the phone
"Cancer Center". I am a little shocked by this but hematologist also work in oncology which has to do with cancer. Before my appointment the doctor wants me to do a test called flow cytometry. They can use the blood they already have from my previous blood draw.

My appointment with Dr. Lagant is Thurs Aug. 15. Ok a little nervous but now maybe I can find out about my neck lumps and why I have a high white cell count.  Nurse comes in and says I have to undress and put on stupid gown. Ugh I hate that.  Dr. Lagant comes in, older lady very petite, I really like her. Asks me a million questions and more ear checks, heart check, say ahh the normal stuff. She starts to feel my neck and down to my clavicle, checks the arm pit, sweaty and all (wondering did I remember deodorant today?)  then the groin. She finds more lumps on my neck and a larger 2 inch one in my arm pit. Then I have do a lovely
pelvic exam since I haven't had one for about 3 yrs. seems to check out ok. then the breast check. I am feeling totally violated now!!  Finally she says ok get dressed and I will be back to let you know what I think is going on. Finally some answers.

When she finally comes back which seemed like forever. She has Ed and I sit at the bed on one side and she on the other. She uses the paper on the bed to demonstrate what my diagnosis is. She is doing this writing upside down and doing quite well.  First we talk about red cells, and white cells and platelets. Red cells, normal. Platelets, normal. White cell still elevated but not in a danger zone. Then we talk about differential. This is starting to sound like a foreign language now. My neutrophils should be 60% but they are 21%, my lymphocytes should be 30% but are 68%. they are backwards of what they should be. We talk about the flow cytometry test and lymphocytes and monolonal?? more foreign language. Next she writes on the paper what she my diagnosis is.  She writes the word Chronic and underlines it.  That doesn't sound good. especially when it is underlined!! Then she writes the word Lymphocytic and then Leukemia. What? the word leukemia is reverberating in my brain. I can see nothing but the word on the page!! Leukemia!! Leukemia!! I can see nothing else she is writing. How can this be?  Its only a word I've heard described for other people not me!! Everything now is a blur. She is explaining about the numbers they use to rate cancer.  Cancer!! What?  At this point she estimates me at a I or a II but may change after I have to do more tests.  I am still hung up on the word leukemia. Is this real or a bad dream. She also says she thinks my spleen is enlarged. This would explain the bloating and stomach aches I have been having since it is using more space. I need to do a ct scan which will show them what is going on inside.  She is talking about disability when I need it she will help me.. What? disability??? Now everything is a really a blur.  Once I get my ct scan we can decide what is next for tests. Before I leave they tell me they will call me and set up my blood work and my ct scan. Then its time for me to have my moment and they tears start to flow.  I go home and start to do research on Chronic Lymphocytic Leukemia.  It is a slow cancer and occurs in older adults.  After I get more tests I will have more info. I have been getting on computer and reading everything I can about it.

Ct Scan and blood tests are on Monday Aug. 19 then appoint on the 22nd. More to follow...