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Day 8, DI, Roc Visit

July 9, 2009

Recently I saw these tweets about ports from @AbbyGarciaDrama.

  • Check out this avatar. My chemo port, circa 1997. Yeah, I kept it after they were done stickin’ me
  • When my surgeon took my port out (after three years), I told him I wanted to keep it. I paid for it, so it’s MINE! Ask and receive

At the end of this post is a link to the photo. Now as you read this post think about that port getting stuck. I also found a great photo of a lumbar puncture needle. Thanks to @manicmother for her photo. (The link is back there… go back….)  Isa does not get anesthesia she only gets morphine and versed. This is called conscious sedation.

Today was weird and surreal. It is the third time in one week that we have gone to the ROC for something. During Interim Maintenance we had so much time off.  Chemo only every ten days.

While in the waiting room the girls played with a tiny girl, maybe 6 years old, who acted as the interpreter for her parents.Officially they had a Spanish interpreter to help them through what was coming up.  She was the patient. That little girl was strong. I could feel it. She also had a generous heart. She had just gone to have blood drawn, it was her first visit, so she had a ton of stickers. She shared them with G. & Isa. It was cute to watch how the little kids can just plop down and play. My guess is that she will soon lose her long black hair.

Also not everyone got good news today. Just recently I found another ROC patient who has had a relapse with blasts in the blood. This means more chemo and more treatments. He was almost finished at three years. He will be needing a bone marrow transplant, but, NO ONE in the registry matches him. This is an excerpt from her post today at 3:45.

URGENT MESSAGE – Tyler went to clinic today and we found out the no one in the Bone Marrow Registry was a match – no sufficient matches at all.  We also learned that anyone who signs up now can have their swabs tested in time to see if they match Tyler.  So, yes – it is possible that someone reading this, or someone you tell about this, may actually be the one 10/10 match we need.

Please go to www.marrow.org and request a kit, go to your local blood bank and ask for one from them, or call 800-627-7692.Please go to
www.marrow.org and request a kit, go to your local blood bank and ask for one from them, or call 800-627-7692.

Tyler’s Caring Bridge site click here. BUT trust me, if you got get your  mouth swab done for the bone marrow registry, then I will make sure you can contact this family. It needs to be done, like NOWHe needs it now. Leukemia moves very fast.

Once I got home and started checking email and twitter and such. I found that one cancer mom I follow, whose son died of a brain tumor just three months ago, took her older son to the hospital with  a seizure. You can follow her  on Twitter too. @TeamArmstrong.

Cancer has affected my life. I have shed so many tears for other people’s children this year. More than I ever thought I would.

Today, I am tired, but grateful that Isa feels relatively good. I am grateful that she has stopped screaming so much. I am grateful that I have this blog to channel my energies. I am grateful that I’ve had this strange experience. I am grateful for cancer, because it has changed me. I believe that I will be a better person on the other side of this. Ideally, I will be a mom of a cancer survivor rather than a mom who passes her child everyday at the cemetery like @TeamArmstrong does.  I know that there are those who have gone before me. I meet them everyday.

Without the positive vibes, prayers and energy coming from family, friends, and strangers she would be feeling worse. I know this. For instance, today after her medicine was injected she got a sudden sharp pain in her flanks. It was scary to see her react so violently. Then as soon as it came on it passed in about 10 minutes.

You must keep up the prayers and positive vibes and all that. It is working.  She needs the energy now and she will need it for a good long time!

I look forward to seeing you in the Twitterverse.

Just for fun, I’ve included a little Twitter link that takes you to a profile photo of a port. To see this photo you need a Twitter account.

For those of you need it follow the directions below. No biggie. Just do it.

  1. Click on the link above
  2. Follow directions to either sign in or sign up.
  3. Look at photo. Notice the center where all the needle sticks were!
  4. Click on Find People in the upper right hand corner
  5. Type       dirtymouthmama      all in one word.
  6. Voila, there I am, click on my blue name.
  7. Then underneath my LIVESTRONG banner is the word   <Follow>  click there.

You can also follow @TeamArmstrong there too.

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