Thumper's Story
Author's note:This is the diary of Thumper who is currently experiencing chemo therapy for HCL.
March 26, 2001
Today started the first of five days of Chemo, I chose to be stuck each day instead of having a Shunt put in. The process starts with a bag that will help with the nausea that takes about 20 minutes then the CD2A is applied, Nurse Phyllis started the flow easy to see if any immediate side effects started, then after 15 Minutes she opened the flow, the whole process took about 2 ¼ hours.
I am eating small meals and drinking large amounts of liquids to flush the system and help keep me from getting sick. The brain would not shut down last night when I went to bed; the usual is this really happening to me?
Positive attitude and good health are very important, I can only hope that after day five of the diary you will read the same, I intend to use light weights to try to keep the upper body strength. Surfers never want to loose their paddle muscles cause at our age it takes to long to start them back!
March 27, 2001
All went well, this time the total Chemo treatment lasted almost two hours, still feel good, little tired but no nausea. DR. said if no nausea on the first complete day then I probably would not feel any sickness for the rest of the treatments.
The Anti-Nausea medicine is what kept me awake last night, the DR. said it was O.K. to take a P.M. pill to help me sleep! Slept from 9:15 P. M. last night to 7:20 A. M.
Mark touched up a photo I sent and returned it to us, great job sure made us laugh, we needed a good laugh cause yesterdays treatment was in a large room with six other folks being treated. Until you get this you do not realize how many folks are receiving some sort of Chemo! Jacque is allowed to go everywhere I go with the treatments.
March 28, 2001
Things are going well, little tired and did not do as much with the light weights as usual, talked to Nurse Phyllis and she suggested I stop the weights because I should not take the chance of heating the body up to much.
Chemo has gone well so far, no nausea, eating small light meals during the day, weighed my self and have lost 5 pounds but it feels as though my best friend SPLEEN is starting to shrink, only a ¼ to ½ an inch. After feeling it every day for the last couple of months it does seem a tiny bit smaller.
I am the only patient in the room that has the DR. see me after each treatment. Being only the third person in 10 years that has been treated for H C L in that office, guess that must make me special! Jacque has always said I am a couple of steps off from the rest of the parade??
March 29,2001
I keep waiting for the roof to fall in, no nausea, I do get tired easy, cleaned the windows on the truck so Jacque could see better and was tired after words!!
This was day four of the Poisonings, looking forward to not having to be somewhere at a specific time. We have always tried to lead a laid-back life style and we will continue after all the DR. appointments are completed and I am in remission!
Jacque’s emotions are ragged at this time, as you are aware we are in the sandwich generation, if your parents are still alive plus your kids makes for some busy times.
March 30, 2001
Day five of the Chemo has gone well, no nausea but I do get tired really easy. I am going to be seeing the DR. twice a week for a while. They will be checking the blood to see when the items they are looking for bottom out. Once that happens then we build back the immune system and the good blood cells.
My good friend Spleen is getting softer as I can not feel the leading edge like I used to and there is a small burning sensation, which means the Chemo, is doing its thing. I have not had any noticeable fevers but have felt warm a few times.
Had a nice talk with Jim from San Marcos who was one of DR. Saven’s first 600 patients for the trial of CD2A. Jim has been in remission for 10 Years now, still has blood drawn every six months and goes to DR. Saven for the results. Jim has an asterisk by his name as his Father had HCL and is one of the few of us that we are aware of that has a family tie.
March 31, 2001
I am convinced that if you are healthy and have the correct frame of mind then there is no problem with the treatments as long as you do what you are told.
I do believe that it is harder on your family than it is on you.
Medics were called this morning as Bill had a Heart Attack and is back in the Hospital. On Tuesday Morning I ran down to the corner to direct the Medics in, this morning I tried to run but the legs would not move like they were supposed to so I walked down.
Taking Anti-Nausea pills for today and tomorrow just in case, if no sickness then can stop on Monday.
April 1, 2001
Life is good, really tired after sleeping all night long but things are good. Two of my surf buddies stopped by and talked for a while, the rest are going to stay away till things straighten out with Jacque’s folks.
Looking forward to when DR. Okun gives me the go ahead to start exercising and walking to get things back to normal! I can not stress enough how being healthy mentally and physically is very important to whipping this thing. Even if for some reason we have to do Chemo again, no big deal just get on with the program to wellness!
WEEK TWO
April 2, 2001
Well it caught up to me today, I thought I was tired over the weekend, nothing like this. I feel as though I have worked a 36-hour storm job and every pole was mine. This means only one thing, the Chemo is working cause the Spleen is getting smaller and still has a burning sensation.
If you are going to be going through this then you need to keep your self as regular as you can, use what ever is necessary. The waste is incredible as the system cleans it self out of the bad stuff.
April 3, 2001
Went to DR. Okun today for a Complete Blood Count. The count showed that the Chemo has done what it is supposed to as far as killing my White Blood Cells, 0.8 the other blood work that are looking at is dropping also.
I was given and injection of Neupogen 480 MG. I will receive these shots daily until the WBC is back where the DR. wants it. My wife Jacque is watching so she can start giving them to me starting Thursday.
DR. Okun was concerned about the rapid fall of the WBC and the Spleen, he will be watching, as it is a little to fast for him.
April 4, 2001
Feeling a little stronger today, going to get the shot at 2:00. Asked Nurse Phyllis if I could go to Costco to get a new printer, after she looked at me I knew the answer, I was told to stay in my environment as much as possible to which I answered YES MAM! She is truly a wonderful individual with a heart as big as can be.
April 5, 2001
Feeling better today not as tired. Jacque gave me my shot today under supervision of the other Nurse Mara, Jacque did real well. The only time I felt anything was when she started pushing the stuff a little to fast.
DR. Okun said I would start feeling my bones aching and to take some Tylenol to help. This time he was not kidding, I got up at 05:00 to go to the bathroom and get a drink of water and every time my heart beat my spine and shoulders would ache. Took the Tylenol as directed which helped the pain a lot but have to take every 4 hours so far.
April 6, 2001
Got out and about today, Jacque let me drive for the first time in a while. Things are going well but I let the Tylenol dosage time slip by and paid for it. The spine, across the hips, across the shoulders and into the base of my skull throbbed every time my heart beat. The pain was worse than after a stingray reminds you to shuffle you feet or else.
Once my friends found out about the daily shots they all volunteered to take over the shot giving for Jacque!!
April 7, 2001
It is so tempting to stray from a healthy diet, as you know I have not had any nausea and the loss of appetite is there but not to bad. Like Mark said fresh fruit sure looks good but you have to do what the DR. tells you or suffer the consequences.
I wish you good luck on your journey as a member of our exclusive club. It is Ironic that last year my boss ran a marathon for Leukemia and for some reason Jacque and I gave a dollar a mile each for Teresa and Les to run in and complete the Alaskan Marathon.
Once I get back to work my payroll deduction will be going to the San Diego chapter of the Leukemia Foundation.
WEEK THREE
Jacque gave me my last Neupogen shot on Monday April 11th, that is it for a while I think. Went to the DR. on Tuesday and the WBC was an 8.9, I was really happy because I could hold and kiss my Two year old Grand Daughter! Dr. Okun warned me again that the blood work is a roller coaster, which I found out on Thursday when the Blood Count dropped to a 4.5. These numbers will mean something to you once you start treatment.
Was given permission to start using 10# dumbbells and to start walking. You do not know how those words sound, I realize my treatments are only three weeks old but when you can not do to much, that makes for a long three weeks! I was a very active in my sport of surfing and not having been in the water since mid February has made for a long time of not getting any exercise. When the Spleen is huge you have a tendency not to do too much cause it is in the way!
Escaped to the beach on Saturday to see my group of friends who I surf with, the wood fire sure smelled good, that was my first trip by my self to someplace other than the DR.
Every day I seem to feel stronger in the mornings, I have found in my case that the healing process has found every injury to my bones through out the years and reminds me with a dull ache. Tylenol usually takes care of it if not a Vicoden will settle matters.
WEEK FOUR
Emailed Mark Sunday evening and received his return on Monday. Mark spoke with a new member of our club who will be starting treatment soon. The Gentleman told Mark how much he appreciated both Mark and my diary. I found Mark’s diary was extremely helpful in preparing me for the unknown and I am glad that my updated version was of a help to him.
Started exercising today Monday April 16, used the weights and in the afternoon walked around the neighborhood with Jacque and Gwen, our Granddaughter, had a good time but paid for it the next day as I slept for 11 hours that night and woke up tired.
Have started slower on the exercising and feel better for it.
Went to the DR. today Thursday and sure enough the WBC dropped to a 3.5, some of the other ones dropped but the Hemoglobin count raised considerably, not where it should be yet but it is raising! I think this is where the word patience comes into play.
Next week is a one DR. visit week also, so that is a good sign.
Week Five
Mark suggested I start reading the H C L Message Board. Very interesting reading and Ken was kind enough to respond to my question concerning aching bones.
Blood test results for Thursday White Blood Cells dropped to 2.6, Platelets rose 1.0 point to 85.and Red Blood Cells rose .01 to 4.00 and Hemoglobin stayed at 12.8.
DR. told me to come back next week for more blood work.
My original blood work before Chemo was WBC 5.1 RBC 4.16 HMG 13.1 & PLT. 80
WEEK SIX
Thursday May 3
Visited DR. today and results of blood work are WBC 2.0 Platelets 74.0 RBC 4.23 & Hemoglobin 13.3.
In talking with the DR. I asked what percentage of HCL was in the original bone marrow draw, it was 25% but I have a Variant involved, I missed that one when the DR. confirmed my having HCL.
Will draw more bone marrow in a couple of weeks and if things do not look good I will be packaged up and sent to Scripts for evaluation.
Bright side it is a 45-Minute drive south.
I hope that this DIARY has been helpful to anyone who is about to start treatment, I will add more after I see how this shakes out and thank you for reading.
Something I missed putting in the beginning is I am a 53 year old who lives in Southern California and was a Electrical Journeyman Lineman for 15 years before a Mitral Valve Prolapse grounded me and put me in the office in 1990.
July 3, 2001
The following is a summary of what has transpired since the end of week Six.
On May 24, 2001 we went to Scripps and met with Drs. Wentworth and Saven. After their cursory look at the records they thought I probably had SPLENIC LYMPHOMA WITH CIRCULLATING VILLOUS LYMPHOCITES. This presents it self as Hairy Cell Leukemia. Dr. Saven recommended the removal of my spleen. After a few days their Pathologist had looked at the Bone Marrow Biopsy slides and was not sure what it was!
After meeting with my Oncologist Dr. Okun it was agreed to have a Splenectomy.
On June 12, 2001 I started a clear liquid diet as the Surgery was scheduled for June 13, 2001 at Mission Regional Medical Center.
After four hours of Surgery, was supposed to take two hours but the Spleen was bigger that the x-rays showed. I gave birth to a four ½ pound Spleen. Before I left for Surgery I left a message on the message board about naming the Spleen, Wanda won with the name Spleenda.
I was released from the Hospital on the 19th with an extended stomach, which was believed to have been excess gas from the Surgery.
On the 20th while walking around the back yard my feet swelled and I was running a low-grade fever, less than 101 Deg.
On the 21st of June I was readmitted and had 1,400 C.C. of fluid drained off from where the spleen was, boy did that feel good getting rid of the excess fluid. On Sunday the 24th of June they removed another 800 C.C. and installed a drain.
With poor veins from Chemo, numerous blood draws and other things over the years the I V went bad. I was able to convince the DR. to put me on oral antibiotics and to try and save the one good vein I had left.
Was sent home on the 22 of June with the drain and pills. After 11 days in the Hospital home sure did look good and so did my bride of 33 years.
The pathology report on the Biopsy of the Spleen shows Hairy Cell Leukemia with the Variant. Scripps has not responded with their report yet as they to wanted to run tests on the spleen.(editor's note: it has been confirmed that Thumper has HCL-V)
I will see my Oncologist today July 3, 2001 and then see the Surgeon on July 9th.
Felling so much better and getting stronger every hour. In hopes I will get the tube out on July 9,2001 as the fluid draw has slowed down quite a bit. Once that is removed we start the body building regiment back to get into shape by swimming, light weights and lots of walking.
In hopes to be back Surfing by August.
I can not emphasize enough about having the good attitude and keeping your self in the best shape possible. Mind over Matter did not pop up out of thin air. You can beat this little friend of ours as long as you have good medical help, do what you are told to do and keep up a “ you are not going to get the best of me “ attitude!!
My wife and I hope this has helped you prepare for what ever is coming up for you. Please remember that what you are about to go through is harder on your care giver than it is on you, care giver being Wife, Husband, Girl friend, Boy friend or what ever.
GOD BLESS YOU
THUMPER AND JACQUE
Click on the photo of Thumper to see an enlargement.
Click on the photo of Thumper to see an enlargement.