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A rough day October 30, 2018

Posted by Judy in Musings.
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I hugged both of my oncologists today.  We both did, hubs and I.  I broke down and sobbed in the radiation oncologist’s office today.  We both did, hubs and I.  We all cried and squeezed each other’s hands, hubs, my cancer doula (a very good friend), and myself.  It was a rough day.

Over the weekend, I was in the hospital because of tachycardia (really high pulse), 150 to be exact.  We discovered that I was woefully dehydrated, which was part of the reason for the tachycardia.  But also discovered that my right lung is in a really bad way, so much so that it’s pushing my heart to the left, which is the other reason I was tachycardic.

So the story of my lungs is this:  Back in January, I started having shortness of breath which was attributed to a right-sided pleural effusion.  I was drained a few times, then took some really strong chemo over the summer that dried it up.  Starting at the beginning of September, I started to feel not so great.  A CT scan on 9/20 revealed that the effusion was back as well as some thickening of the pleura.  What I missed then is that there was a tumor growing on the outside of the lung in the pleura.  I also missed that the tumor was covering 1/3 of my lung.  The decision was made to start weekly Taxol to deal with that and a new liver progression.  I had a CT scan in the ER this weekend, which was roughly a month later, and that showed that the fluid had increased, as had the thickening, and the tumor had grown such that it occupied the space of 2/3 of my lung.  That is some wicked fast growth for one month!

I was told by the on call oncologist that I needed radiation to the area.  I asked her what happened if radiation couldn’t help.  She just looked at me and said “I’m sorry.”  So there I had it, my first “your death is near” conversation.  Hubs and I spent about an hour talking to the radiation oncologist on duty that weekend, discussing whether or not it would be useful to do radiation.  Basically he thought that now we were measuring in weeks to months, if we could do successful radiation, then we’d be measuring in months.  My second “your death is near” conversation.

Today I saw my regular radiation onc.  He hadn’t seen the images, but he looked at them as I chatted.  He was rather quiet as he looked.  Once he’d seen the images, he said that he felt very confident drafting a plan for radiation, even though he didn’t really think it was going to help much, maybe 1%.  He suggested that seeing a pulmonologist  who could get me some oxygen would be the best option.  He also said and that we were measuring in weeks.  My third “your death is near” conversation.  And then there were a lot of words that I honestly don’t remember because I was just trying to keep it together and not burst into tears.

At one point, he asked if I wanted to do radiation or not.  I couldn’t speak, I just broke down.  He suggested that he’d go see another patient to give us time to discuss.  My cancer doula stepped out, hubs and I hugged and cried, wailed more like it, and we talked very earnestly.

When the doc returned, we had decided no lung radiation, which also meant no brain radiation.  At this point, the lung progression is so rapid that it just doesn’t make sense to continue brain radiation.  Additionally, the radiation was detracting from my quality of life and I wasn’t able to do the treatment today because lying on my back made me feel like I was suffocating.  So, quitting makes sense.

My visit with my oncologist was different.  We agreed that harsh chemicals were not the way to go.  They were hard on my body and were not working quickly enough.  So no more chemo.  He gave me the option to continue the immunotherapy, which has a small chance of working.  I’m still thinking that through.  He also suggested hospice, knowing that if I wanted to do immunotherapy, I could come out of hospice.  He loaded me up with the right pain meds and meds to help me with the panic of not being able to breathe, said to see how I feel in the next 10 days, and then see him again, but only if I wanted to.  So I’m going to meet with hospice to see what they can and cannot do for me, and still keep talking with my onc.  He did not say what our measurement unit was, but definitely set me up so that I could prepare for the end.

Phew!  How are ya’ll doin’?  It’s a whole lot to take in.  I know some of you will want to rush over to visit.  While I can manage visitors, I can’t manage unexpected visitors.  Please send me a text.  Talking is a challenge for me now, so a text is best.  Also, be prepared to dunk yourself in sanitizer and I may not be giving hugs just because I’m really susceptible to infection right now.  If the sanitizer and no hugs is too much for you, I am more than happy to chat via email or text or FB messenger.  Or the Marco Polo app.  I love you all so much and don’t want to push you away.  I know my limits, though, and I tire easily.  I want to stay in touch, it just may not always be face to face, okay?  ❤ ❤

I hugged both of my oncologists today.  I broke down and sobbed in the radiation oncologist’s office today.  It was a rough day.

 

Comments»

1. lbabb - October 30, 2018

Perla,  we are praying for you daily as well as your family.  I would like to come visit if your willing and able to see me or both Gary and I.  I asked Rick’s parents Sabbath about you and they said you were in the hospital  and were getting fluids.  We wanted to come see you Sabbath but did not know if we should intrude.  Please let me know if I can help in any way. 

Prayers and hugs to all of you.

Lisa and Gary Babb

2. Jessica - October 30, 2018

You are loved. I too cry with you and my prayers are over you and your family. You don’t know how much influence you have on every life you touch (in person or online!). God will see you through this and I will continue to lift you up!!!
Jessica in West Texas

3. Mary Slayton - October 30, 2018

Dear Lord, Perla is your child and you love her. Of this we can be confident so we trust her future and the future of her family to you. Help her to continue her brave walk with you through each day of this worrisome time. Be close to those who love her(which are many!). Please bless and show her and her dear family your care and love as only you can! May each of us be as brave as Perla as we face our daily lives. Thank you for always hearing our requests. We love you and we love Perla and her dear ones. In Jesus name, Amen.

4. Jenny Lugardo - October 31, 2018

Praying for you and your family asking that the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

5. Trina - November 1, 2018

Querida Perla,
We are crying with you. And every day thinking of you and praying for you and your family.
Un abrazo fuerte,
Trina


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