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