February 18th, 2015 Update

Plum blossom

Plum blossom

Happy Wednesday to you all! I am a bit late in this post, but thought that I would wait until after seeing the neurologist to do this post.

Well, I was right! I do have neuropathy in my hands! Not only that, I have carpel tunnels syndrome too! Heavy sigh…The good news is that I am not at a point for surgery on my wrists! For right now I just need to wear wrist braces.

Of to the local Rite Aid, and I find that they do have the wrist braces. Most of them in size small, and most for the left hand only! Questioning someone there, they told me that there was an order for the right hands coming in tomorrow! Figures! So, I bought the only large lefty they had and will have to return another day for one for the right!

I return to the oncologist next week. Four days…four Dr.’s appointments!

Until next week, hugs and be well!
Jane

January 26th, 2015 – A Beautiful Day!

Beautiful Sunrise

Beautiful Sunrise

I woke up this morning, put on a pot of coffee, and when it was ready, I headed outdoors to greet the day. I was met with this lovely sunrise! Seeing such beauty at the beginning of my day, I just know that today will be a good day!

The health update: I have been taking the medication to help with the depression and the neuropathy now for almost 2 weeks now. I must say that it is helping with the depression, but not helping with the neuropathy or the shaking hands.

I met a friend for lunch this last week and while trying to eat salsa on chips, I was spilling everywhere. The shaking is getting worse. I do see the neurologist on the 17th of February. Hopefully, we can figure out what the issue is.

May you have an amazing week! Hugs and be well!
Jane

Day to Day – January 2nd, 2015

Good morning to you! I have not posted in a bit and I wanted to write an update.

I saw the Dr. back on the 23rd of December, and got the answers to questions that I had. We questioned him regarding the chest and pelvic CT scan he wanted done. He told us he did not order this for me! What do you make of that? If you remember, I got a phone call from his assistant telling me that he ordered this for me.

The Dr. was very abrupt on this visit. He still is of the belief that the neuropathy in my hands is not a result of the treatments I have been receiving. He told me that he thinks I am suffering from anxiety. Who would not be with the big C in their life? He thinks anxiety is the cause of the neuropathy in my hands, the rash I have on my scalp, the depression, the diarrhea and the nausea. I looked up the drug to see the side effects which include numbness or tingling in the hands, feet, or lips. As I sit here writing this I am experiencing this in both hands and feet.

My infusion was scheduled for the 30th, and on the 29th I received a phone call at 5:00 from the clinic asking me what they were doing with me the following day as they had no order from the Dr. What???? Why should I be telling them what they are doing for me?

On the 30th, it took 5 sticks to get into a vein, and the nurses suggested putting in a port, which is a device surgically inserted under the skin. This device is fed into a vein, and for treatments they use the center of this device to administer the drugs. It looks like this:

Port

Port

The aftereffects of the treatment I had on Tuesday, these over the last few days, have been bouts of diarrhea, stomach cramps and headache. Yesterday I took Imodium, Pepto Bismol, and Advil. I have also had increased tingling in my hands and feet. Instead of this being just in the tips of my fingers, I now have this throughout my hands and feet.

I see my primary care person on the 13th for a referral to a neurologist. I will speak to her about the ongoing depression, and some of these other physical issues…

Hugs and be well!
Jane

October 31st – Day to Day

Happy Halloween! 😈

Happy Halloween - Photo from TimeForTheHolidays.net

Happy Halloween – Photo from TimeForTheHolidays.net

Yesterday was the first infusion that I will have for the next two years. The nurse was able to get into a vein on the first try. Wahoo!

Then I was given a saline drip. Once that was done the Benedryl came next. I had a reaction to this. My arm started to burn and itch at the same time. I had red splotches on my arm where the burning pain and itching was, and was given a warm pack to help. It did help a bit, but it was still irritating.

Next was a flush with saline before the Rituxan. When she started the Rituxan all was OK. This drip was to go for 90 minutes. Half way through my arm began to get extremely cold. A warm blanket and another hot pack was placed on my arm. I was glad when it was over and done with.

We are having work done here at the house, and so yesterday I drove myself. I wanted to see if I could do this in case my husband was unavailable to drive, as he was yesterday. After treatment, there was no way that I could drive. I felt like I had one hell of a drink with my speech being a bit slurred and that loopy feeling in my head. This was a result of the Benedryl.

I had to sit for almost two hours before feeling well enough to drive. It was while I was sitting there that the nurse mentioned my “next chemotherapy” appointment. I was puzzled because the Dr. had told me on my last visit that I was done with chemotherapy. Due to what the nurse said to me I looked this up today.

Here is what I found: He was not correct in what he said. What he should have told me is that I am finished with the “induction phase” of the chemotherapy. The induction phase is the first part of the chemotherapy treatment and is the intensive cycle of the treatment for SLL. I am now in the second phase of treatment, which is really important too, as this is the maintenance phase. It is still chemotherapy! 😦 He needs to work on his communication skills!

May you enjoy the day! Hugs and be well!
Jane

Small Lymphocytic Lymphoma

As many of you know, I was diagnosed with Small Lymphocytic Lymphoma (SLL) back in March. I wanted to recap what I have gone through and my thoughts. Then I wanted to let you know what we found out at the Dr.’s yesterday…

I went to the Dr.’s for swollen glands and a blood test indicated that there was something wrong. Certain levels in my blood were 3 or 4 times of what is the normal range. I had a PET CT scan and a bone marrow test to assist in the diagnosis. I had hot spots on the PET CT but it was the bone marrow test that concluded that I had SLL. The “mother” blood cells told the story.

We were told that this is not life threatening, was treatable, and is not curable. There is no known cause of SLL and it is not contagious. I could have continued on having tests every so often or treat the disease with chemotherapy. I chose to have the chemotherapy due to the discomfort of all the swollen glands.

We were told that I would undergo three treatments. After the third treatment, I once again had to have a PET CT, then I went on to a fourth chemo treatment. The results of this PET CT showed no hot spots, meaning that all looked good. We were told after the fourth treatment that I needed one more, even though my blood looked good. We did not understand this and thought that this had to do with money. I went through the fifth treatment two weeks ago. At that time I was told that I would have to go through another painful bone marrow test.

This raised questions for me and my husband. I was only to have three treatments and have had five. There were no hot spots showing on the PET CT. My blood tests (the last two) have been normal. And, knowing this we did not understand why five treatments and why the Dr. wanted another bone marrow test. We needed to understand, and here is what we were told yesterday.

There are four stages of SLL, and I came up stage 4. We had not been told this previously. Stage 4 means you have the lymphoma outside of the lymph system. I was told yesterday it had spread to my bones. I was told that I was fortunate that it was not in my liver or lungs.

We were told that they do three treatments and then do the PET CT to see if what they are doing is working and that my body is responding they way that they want it to. The Dr. told us no one remembers the information passed on after hearing “three treatments.” I need to say here, that the Dr. did not tell us anything other than three treatments!

Now here is the new information we were given yesterday. With Stage 4, we were told, there are always five treatments. With each and every blood test they are also checking my liver function through the blood tests. The reason for the bone marrow test after the 5th treatment is to ensure that I no longer have the disease in my bones.

So, the long and the short of all of this is: It was worse than what we originally were led to believe. And, depending on the outcome of the upcoming bone marrow test, we will know whether or not I am in remission. If I am not, most likely I will require more chemo treatments.

I am actually glad that I did not know how bad this was because I think this would have negatively affected my mind set. I might not have been so positive as I have been on overcoming this had I known back in March how severe this was.

Researching further there are two types, either A or B of SLL. Looking at B first, this is what I found out about this designation. B means that the disease is advanced. One has to have lost 10% of their body weight (I lost 20 pounds – more than 10%); that one has an unexplained fever over 101.5 degrees (had this too); and that you have drenching night sweats (I would wake up in the middle of the night and my hair was so wet it was if I had just gotten out of the shower). One is designated type A if they do not have any of these 3 symptoms.

If you are new to SLL, ask what stage you are and if you are an A or B.

Now we know that I had Stage 4B SLL. You can read more about this disease by clicking on the following links:

American Cancer Society

Mayo Clinic

The Leukemia & Lymphoma Society

So, we are keeping our fingers crossed that my “mother” blood cells will be normal!

Hugs and be well!
Jane

August 19th – The Daily Affirmation

Fix it!

Fix it!

Today’s affirmation reminds me of the days of old. Back in my younger days when something got broken we fixed it. Today, we have become a throw away society. If something breaks we replace it. Now, depending on where the item is made, and China is notorious for making stuff that fails, try fixing it rather than replacing it!

Now, on to the day to day…

This has been a particularly rough road of late. Not only suffering the side effects of chemo, but also because of having sprained my ankle. I have been feeling a bit depressed because of my lack of mobility which makes me unable to do some of the normal routines of the day.

To combat the ankle injury, I have taken to having hot baths filled with Epsom salts to help with the still swollen ankle. Here is the ankle today.

Swollen ankle

Swollen ankle

My husband is out and about checking to see if he can find one of those socks that helps with circulation. And, I have been doing some foot exercises to help get mobility back. Aspirin has been a great help!

My arm is also swollen from the chemo treatment. As I said before it took 4 tries to get the needle into a vein. Here is a shot that shows that the nurse did tap a vein. If they can draw blood into the tube, they know that they have hit pay dirt!

Chemo treatment

Chemo treatment

I have a bit of swelling in the area, and of course the resultant bruising. Here is my arm today.

Bruised arm

Bruised arm

One of the toughest things for me this time has been that I am unable to do a lot of what I would normally be able to do. I have to remind my husband that I am limited in more ways than one!

So, for today, I am going to fix what I can! A hot bath, some exercises, and some home cooking which always makes me feel good!

Do you fix it or replace it?

Hugs and be well!
Jane

August 14th – The Daily Affirmation

Beautiful days!

Beautiful days!

Today is a beautiful day, and so was yesterday, as a matter of fact! This kind of thinking is all about being positive and healing from the cancer and the side effects of chemo!

Yesterday was the first of the two day treatment plan. The nurse had a hard time finding a vein and after 3 tries the 4th was the charm! Everything yesterday went as it should and that made me happy. I felt a bit loopier than I have in the past!

Today was the last day of treatment and it went OK. One patient was sent to emergency for troubles outside of the chemo. They could not even get to administering anything on her. Poor thing! Still have to have tests to be done later, and I am telling myself all will be well! Keeping the fingers crossed that there will be no more chemo!

Hugs and be well!
Jane