Donna J Nelson

First post: Jun 20, 2020 Latest post: May 8, 2021
 (https://www.caringbridge.org/visit/donnajnelson3/journal/view/id/5eedf56ef33a09132b89132e)Journal entry by Donna J Nelson — 2 minutes ago

Starting around the beginning of March 2020

I thought my challenges started with a respiratory virus around the beginning of March (fever that came and went, shortness of breath). Then, about a week later, I felt like I inhaled a bit of food a little too far, which caused a bubbling, then crackling in my right lung. Because I was so busy with work, and because the idea at the time was to try not to go to health centers unless you thought you had COVID, I monitored myself at home.

Finally, after a month of this, I realized things weren't getting better, so I sought treatment at the local health clinic in Fairfield around mid-April. They diagnosed me with double pneumonia, along with pleural effusion (fluid in the space around the lungs), put me in the hospital briefly, then sent me home to continue taking antibiotics.
 
I got a little better from 3 rounds of antibiotics over a month, but overall was getting worse -- and was now having greater difficulty breathing, as well as a lot of pain and other symptoms.
 
When everything kept getting worse, my breathing was with great difficulty, and I couldn't get into the U of I Pulmonary Clinic until June, I went ahead and drove myself up to the Univ. of Iowa ER in Iowa City on Friday, May 15. 

After an x-ray and CT scan, they suspected that what I'm battling was probably the same type of tumor I battled 4 years ago in my uterus, which had traveled to my lung and now flared up. It was probably already beginning to be problematic in my lung during the other issues.
 
Thankfully, in the ER, they also drained a bunch of fluid from around my lung (which allowed me to breath again!) and put me in the hospital. A few days later, they did a biopsy of the tumor, to be 100% sure what it was. Yes, their suspicions were correct -- it is a "high grade" late-stage leiomyosarcoma that had metastasized from my uterus to my lung (which is not a good place to be).

The main doctor they assigned me to, Dr. Varun Monga, is one of only 40 experts on this rare type of sarcoma (leimyosarcoma) in the US. So I was happy to be under his expert care and guidance. 

To try and shrink the tumor, the original plan was to do 3 doses of chemo, 3 weeks apart. Then 10 sessions of radiation, starting right after the first chemo. Possibly surgery at some point. 

I was given the first does of IV chemo, while in the hospital, on May 27-28. The 10 radiation sessions began Friday, May 29. On Sat., May 30, I was sent home, to come back for more radiation on Monday.

As soon as I got in my car to drive home, the intense nausea set in... Sat. and Sunday at home were consumed by nausea. Mon., June 1, I went back to Iowa City for more daily radiation sessions (provided with a free luxury hotel suite to stay in, so I could stay close by!). Sadly, I only spent two days at the nice luxury suite, because -- not being able to keep down any food or liquid -- I was readmitted to the hospital.

The next two weeks were a miserable time. None of the anti-nausea drugs worked. Couldn't keep down any painkillers... or anything! Because of the chemo and some previous painkillers, my bowels were now "asleep" (non-functional), adding to the nausea.

During the 4 weeks of hospitalization at the U of I, every several days my breathing would start to become more difficult. Then the doctors would have to drain the accumulated fluid from the pleural space around my right lung. Finally, they decided to surgically place a catheter that sits at the bottom of the right pleural space, then makes its way up and out my side. Via the use of a very clever kit, the fluid can now be drained every other day -- from home!! This is making a HUGE difference in comfort and also decreases the amount of fluid pressing on the right (and left) lungs.

After the last dose of radiation on June 11, I was sent home to more non-ending nausea & not keeping anything down...

Despite all of this, I've decided the only way to approach this is to keep my mind 100% positive and expect only the best possible outcome -- in every way. So, I'm asking everyone who knows me to do the same. Miracles do happen. As Master Qigong healer Chunyi Lin says, everything is just energy... and what we call disease is just energy that is blocked. So that means everything can be healed.
 
If you think of me, please think 100% positively! It's challenging, but I'll get on top of this!

Good luck to ALL OF YOU in staying safe and healthy right now! What a challenging time for everyone!!
- heart

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