Control the Cancer and walk a day in my shoes

After the special scan, I managed to report the incident of the corkage for my portage to the manager of radiology. Luckily, he did have a sense of humor especially when I mentioned that the Nurse A stole the badge of a real nurse and was actually a worker from the cafeteria. Honestly, I have talked to Hoag cafeteria staff and I think they have more compassion and skill than Nurse  A did. He did mention that I must have thought I was at the Kmart of hospitals. I mentioned that if I did bring my own supplies for the corkage of my portage, would I get a discount for my next scan? It was all fun and games, but he expressed many apologies and said to call him whenever I go for another scan. I will make sure to do that. I did get my results prior to talking to my doc who was not available until Thursday morning. So, on Weds, I had to deal with some nurses translating my scan and then new challenges of getting my chemo since my blood was .12 off of the limit for chemo. The doc agreed to give the chemo if I would get a shot to boost my white cells for 3 days. The chemo infusion which is only 30 minutes was a 4 hour process. I talked to a nurse who has 3 boys since she completely understood part of my motivation for Alex. We talked about the love of a son for his mother and some funny boys stories. Then, I was off to face the night of waiting. Don’t get me wrong, I feel very fortunate to have the doc that I do. I know my waiting game is far better than most patients, but this process seemed all wrong in this day of technology. Having the report of my scan and trying to analyze why I would have to wait one more day for answers for a scan I had on Tuesday, I felt frustrated and almost angry. My imagination got the best of me even when I convinced myself that the factory of UCLA was keeping my doc extremely busy and most likely there was a patient worse than me. I couldn’t help, but to break down and cry. My crying was more like the horrible gut wrenching sobs of an animal. Jim calmed me down as he always does since he is my rock star.

So the scan news: the cancer is blanketing the colon both left and right side (more left than right), cancer in front of the liver and some on top, and two spots in my right breast just for good measure. No one seems to care about the breast because of the blanketed colon. I say a small YIPEE for no cancer in the lungs.

Warning for those who don’t want to read about potty talk: stop here. All docs and nurses main focus is for me to have a bowel movement. It was made clear that without a bowel movement, this blanket squeezes the colon and prevents it from doing its job. This could be a serious issue and mean surgery. Many nurses and my doc explained this to me over and over. I have become a 90 year old focused on prunes, stool softener, fiber pills, veggies, and any other remedies both prescription and non-drug. Since they all frightened me so much, I could barely leave my house and was almost late to Hoag Cancer Center this week. I think I got this pooping thing handled.

The goal or plan is to control the cancer. I told my doc of my fear of being behind the cancer game. I really am not enjoying this phase. He gave me a couple of options and one is immediate to add another chemo to see if it can control the cancer spread or even stop or even reverse it. Much is unknown as usual. If that doesn’t work, I can add another chemo drug which would be very hard on my blood and it is unsure if my bone marrow can tolerate it due to 3 years of chemo. My bone marrow keeps surprising me, so I am still counting on it doing a good job! This chemo has no data for my cancer and has a slew of side effects. What else is new? I talked to the pharmacist about the new chemo we are adding and he tells me it is a purple/grey medicine that causes 590 side effects including skin color change and hair color change. I ask him if my skin will be purple/grey or my hair will turn purple. He couldn’t answer the question and I’m sure I can find the answer on the Internet. Come on drug companies…is it too much to ask for youthful skin instead of a new skin color and new weird hair color, plus hair loss (that is confusing). I can only think of me growing a purple mustache because nothing ever is normal with these drugs. Yes, these drugs cost a ton of money plus all the FDA approval and the goal is to kill cancer, but isn’t there some brilliant young scientist who can add a few positive side effects to chemo drugs?

I used to be the person who really cared about how I looked when I left my house…whether my hair looked good, make up, clothes, shoes…oh how I love shoes, but now I am just happy to be alive. My hair is what was left of an old man comb over, and I am too tired to do the wig. Hats have become easiest to throw on. My feet are still healing from that damn drug I tried in February so now sneakers or clogs are the only footwear I fashion for myself. My clothes must be comfortable and easy to pull off and on for the multiple weekly port access for blood draws and pulling down my pants with one hand while pulling an IV pole to/from the toilet. No necklaces due to port access and few bracelets due to Hoag hospital bracelets. I used to make fun of the pajama chemo patients, but hey I have an excuse since I have been doing this for 3 years in a row. They are putting on pajamas initially and not getting to the real clothes phase. I can only think of my task at hand and there is no time for my accessorizing.

This weekly chemo cancer job is taking up every day now. I find myself conflicted between happy to be here and not having enough free time. It makes the free time all the more special. I am so thankful that I have some options to try and my doctor is still searching along with my fake Dr. Jim still searching during his every waking and non-waking moment. I feel fortunate that I have so many on my team cheering me on. This week I received a card from my internist and all her staff signed the card with a personal message. I definitely feel the love and it keeps me going. I still cannot help myself to say that it is annoying and frustrating. My wishes and hopes change as this ride continues, but one thing remains the same…don’t get caught up in things that don’t matter (that is a personal thing for what matters to you) or really don’t sweat the small stuff. I bet if you walked a day in my shoes, you would really see things differently for yourself, your children, your family, your friends….I will continue to take things day by day and hoping for control of the cancer.

 

 

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3 Responses to “Control the Cancer and walk a day in my shoes”

  1. Linda Kirsch Says:

    I’m hoping right along with you and seeding love.
    Linda

  2. terry fierle Says:

    NEGU Joanie.

  3. Valerie Gelb Says:

    You continue to amaze me with your strength and determination! Hang in there and I will do as you said and work harder to not worry about the small stuff. Thank you for the reminder.
    Live in the hope!
    Valerie

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