LOOKING UP!

I am feeling so much better!!!  My back is not as bad as it was, and the new dose of chemo is tolerable so far.  I went to my primary oncologist at the Sacred Heart Cancer Center yesterday.  He believes the pain in my lower back is coming from an irritated sciatic nerve and arranged physical therapy.

I have emotionally felt much better, also.  I was able to finish up the last oil painting of a series I did for my son, Travis and his girlfriend, Bobbie Sue.  They are paintings of their "children."   I had never used oils in painting, and to be honest, I hadn't picked up a brush and painted in years.  It was fun and a good way to express some pinned up creativity.

This is their cat, Ella.  I'll post the other two paintings of their dogs as soon as I locate the file I saved them in. LOL

CONTINUING TO REARRANGE MY REALITY

It's been a while since my last post.  To be honest with you, I was waiting until I felt better.  I wanted to be in a better frame of mind.  I don't want this blog to turn into just a diary of negative thoughts and moments.  Then I realized, I am defeating one of my main purposes of the blog.  To tell my experience. To express my thoughts and feelings as I live this unplanned, unknown reality.

Janet and I went back to Mayo on Monday, Sept. 16th.   After lab work showed my platelets had increased, Dr. Shah felt it was safe to go ahead and place me back on the treatment.  That made me very happy in some ways, yet in others, it caused dread.  I had begun feeling physically drained before I was taken off of the treatment.  After many days off of the med, I started regaining my strength.  I did not want to feel that weak, unmotivated feeling again.  I am on a less dose of the Pazopanib now, so I'm hoping it is less draining on my body.

Since my last post, depression hit me really hard. Initially, I felt better being off the treatment, however, I couldn't stop dwelling on death, dying, and missing family, friends, and pets. It kept looping round and round until thoughts of suicide wandered in and visited BRIEFLY.  I wouldn't commit suicide, but I finally could understand it in others who have felt too much pain. I wasn't in excrutiating pain or anything like that, but what if I am someday? I don't have an answer, however I hope to trust the medical community for adequate supplies of pain killer.

Now that I have prayed and asked for help, help has arrived.  It's funny how much more you pray when you're scared, hurt, heartbroken, or been told you have an incurable disease. I pray these days. I grew up in a household with years of Lutheran teachings and some of Seventh Day Adventist. Later, I totally revoked anything having to do with religion and Christianity due to an experience I had with a group of born-again somebodies in my twenties. I had them telling me what I SHOULD believe. I watched them speaking in tongues and claiming the power of God spoke through them.

To make a long story short, I have come to believe "God" or "a higher power" resides more within me than within others to translate for me.  My eyes were finally off of people and my trust now came from my own direct contact with the higher power. I no longer look to people to explain God to me.

As I said earlier, my prayer was answered because my depression lifted. I was so relieved and looked forward to a better week.  However, Tuesday, I awoke in the middle of the night to terrible back pains. Yes, back pains! The same type of back pains that took me to the hospital when I received my initial diagnosis.  But I don't believe the back pains come from the cancer. I just think that my lower back is out of whack.  I see my oncologist, here in Eau Claire, this Thursday. I hope something can be done.

I can't help but also think, "what if?"  What if the cancer is spreading rapidly - instead of decreasing. Maybe it got into my bones. I don't like to think that way too long though because . . . what if I can wish it to happen by thinking about it negatively. It's so hard to control all the thoughts that invade my mind.  I can't win really. At this point though, I do my best in CHOOSING not to believe that the cancer has spread - and just know that my back will be better with time. As usual.

ROLLER COASTER vs. CAROUSEL

September has really had it's ups and downs for me.  I've never been much of a fan of roller coasters and have found myself wanting to scream, "I want off this ride!" more than once over the last week or so.

We went back for lab work and an ECG at Mayo on Wednesday.  I met with Dr. Shah afterwards and he said my platelets had dropped greatly.  After hearing how weak and fatigued I have been feeling, he and the other oncologists decided I should come off the Pazopanib for 12 days.  This should allow my platelets to restore and my strength.  I go back to the Mayo Clinic on September 16th for more lab work, and if things have improved, I will go back on Pazopanib, but at a lower dose.

When he first said they would be taking me off the medication I was so scared I was no longer going to be in the clinical study.  I was also afraid this would wreck any progress the med had made on my cancer for the last month.  He quickly assured me this was just a temporary adjustment, which they have to do all the time with patients involved with clinical studies.  He also said, the amount of time I am off Pazopanib will have little effect, if any, to what it may have accomplished so far.  It takes more than 7 days for this med to get out of my system.  He went on to explain that their goal is to see if this type of chemo will work on Sarcomatoid RCC, but in that, they want to make sure I am experiencing a good quality of life with no damaging or debilitating side effects.

After all this sunk in, I felt much relief and somewhat happy they removed me from the med for a while. The last week, or so, had been pretty rough, physically and emotionally.  I can't describe how weak, tired, and down I had been.  I guess my last post gave you insight into that world!

I am happy to report, I have been off Pazopanib for 5 days now and I started feeling better yesterday.  I had more strength, stamina, and good thoughts.  My greatest hope is that when I start receiving the med again, at a lower dose, it will be enough to attack my cancer and leave me feeling like I'm off of the roller coaster and on a carousel!!

I AM SO MAD!

Damn, I am so mad and so angry, so depressed and so weak. I can't stop my thoughts today and I have dwelled in the negative light. Sometimes I am relieved for awhile after I display all the turmoil inside me. I hope I get relief from these thoughts. I love my partner Janet Soooo much. I do not want to leave her and I never thought that when we bought our dog, that I might actually die - before her. I can't bear thinking about it all!

I hate this cancer! I was sick during the night and depressed when I woke up. My body feels weak, I had this stomach ache and I feel sorry for myself. Sometimes, when unwanted moods take over, it seems best to let it all out so one day IT IS ALL OUT. Then, there is no repair - the moods just lift - eventually. I think I still stand in a place where I will feel better. BETTER - is still reachable. I need to wait.