Sunday, January 28, 2018

The Continuing Saga

Well... after we drove to the beach house and stayed a few days, we headed south to Simi Valley to see my mom. To pick up where we left off, we had to drive inland about 60 miles and get on Interstate 5 heading south to avoid the mudslide area in Montecito. It is not the most interesting of journeys, and we much prefer driving the coast south, but we did get to see miles and miles of pump jacks in the Lost Hills oil fields of Kern County. Weirdly modern and prehistoric looking at the same time, like crazy metal dinosaurs.
Pump Jacks
We made it to my sister's on January 16th and visited with my mom right away. She was very sleepy and mostly stayed in her bed. Our plan was to take her for her thoracentesis, the removal of the fluid between her lungs and chest wall, on January 18th. She also had a CT scan and blood draw lab work on the same day. It all went well and a very timely fashion. We decided that day to stay in Simi Valley until my mom's follow-up appointment with the oncologist on January 23rd to get some idea of what the prognosis would be. Now that was the VISIT FROM HELL.

To start with, the staff had booked my mother's appointment (and three other patients) for 1:00 pm. The problem was that the doc doesn't start seeing afternoon patients until 2:00. It was a simple error, but a total bummer. Then, when we did see the oncologist she had not seen the test results, the CT scan report, or lab results. She was utterly unprepared to discuss my mom's latest health issues. Truly disappointing in every way. So, we took her back to the Memory Care Facility and planned our trip back to the beach house.
My mom on January 20th
My mom's decline is noticeable in every way. She spent most of her time in bed when we visited, which we did twice a day. She could only put up with us for an hour or so before needing to take a nap. I asked her if she remembered how many children she had, and she did. She said, "I have four." I asked her if she knew their names. She said, "Marc, Michael, Lynn, and the other one." That other one would be me. We had a good laugh about that.

We spent eight days in southern California and headed back to the beach house on Wednesday, January 24th. We were absolutely thrilled that we hadn't gotten the flu while we were there in over-populated flu epidemic land. We were literally living in fear of that the entire time we were there. Then, on Thursday the staff at the Memory Care Facility called my sister to say our mom was not feeling well. By Friday she was in the ER, diagnosed with the flu and the pleural effusion had already returned. As I type this she is in isolation in the oncology ward of the local hospital. We're waiting to hear the prognosis.

One way I lift my spirits, I run out in the morning to photograph sun rising over Monterey Bay. I am utterly grateful for these moments.




33 comments:

  1. I am holding you in my thoughts.

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  2. I'm so sorry to read this latest news about the flu and the return of the pleural effusion. Sending my love to all of you.

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    1. bev-- I think my mom is going to be referred to Hospice care today. My siblings and I believe this is the best course of action. Sigh.

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    2. Hi Robin - I'm sorry to see this note about your mom being referred to Hospice. Did that happen? I suspect you are right and this is the kindest option for your mom.

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    3. bev-- The referral hasn't happened yet. My mom's doctor has been out of the office and so the referral hasn't been made. Lots going on, but we're hoping that my mom will be released and have hospice care at my sister's.

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  3. Ah, Robin. This is such a heart wrenching chapter. But every time you go I'm glad for you because I know how important this time together is- especially the lucid moments. I never wrote about it on FB for privacy reasons but I've been working at hospice in Asheville for a while now. I had to leave the lovely man I was home visiting to come here to be with Rich and it was really painful, not knowing how the next days and weeks would unfold for him. I'm thinking of you and your sweet mother (I like that photo of her, very much.)

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    1. amarkonmywall-- I have considered volunteering for hospice. It seems like such an important and sincerely community-inspired thing to do. Kind hearts make all the difference in the world.

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  4. You know how much I love you and your mom. I'm glad you got to spend the time with her, despite the doctor fuck ups etc. Please let me know if I can help in any way. You can call any time.

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    1. Tara-- Thank you so much for your love and kind offers. We're in a holding pattern at the moment.

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  5. Sending love. What would we do without the beauty of the natural world? Beautiful photo of your mother and of the sun rising. Glad you both made it home without getting the flu.

    The first time I ever experienced snow was in the Lost Hills in the 1950s. Because my father worked for Chevron (Standard Oil in those days), we lived in Kern County, in just outside the city of Taft, from when I was 5 years old until I was 7 years old. We lived in the midst of oil wells. Our father drove our little family up Highway 33 to see the rare snow that almost promptly melted. It had been a light snowfall. I can still see the scene in my mind. The sun wasn't shining, and we didn't have warm enough clothes to stay outside for long. It was something entirely new and not particularly pleasant for a child who had lived all her life in the warmth and sunshine of the coastal and central lowlands of California.

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    1. am-- I am so grateful for the beauty of our world as the natural balance to all else. I LOVE your story of your time in Kern County. What an "other-worldly" place that is!

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  6. It sounds like your having a tough time and, having been through similar myself so recently, I can imagine just how hard it is. I'm thinking of you.

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    1. John-- I have been thinking of my blogging friends who have walked this path lately with their much-loved mothers. Thank you for your good thoughts.

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  7. Robin, I'm so sorry to hear it's been such a stressful time. What is UP with that oncologist and her office? I hope your mom's condition is stable and she kicks this flu bug.

    I love the photo of the oil derricks. What a landscape. I'd love to photograph that myself!

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    1. Steve-- You should have heard my sister and me ranting up a storm outside of the medical building while we waited for Roger to bring the car around for my mom! People steered clear of us. LOL. Glad you liked those oil derricks. It really is quite an other-worldly sight.

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  8. Love the sunrise photo. I hope things turn around for your mom and her doctors get their act together. Hang in there the other one. :)

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    1. Dave-- You made me laugh out loud with "hang in there the other one." Thank you so much for that. Glad you liked the sunrise photo. This morning was grand as well!

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  9. Aww robin, I am so sorry that nasty flu bug has found your Mom. She doesn't need that and I hope they are on top of it and can get her through it. Positive thoughts and hugs.

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    1. Patti-- We're still waiting for a prognosis. There's so much going on and my mom is not handling being in the hospital well at all. My twin brother is driving down tomorrow to give my sister a break. Whew.

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  10. Oh Robin, what a sad chain of events. My thoughts are with you and your mother. This is tough.

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    1. Sabine-- It truly is a sad chain of events. I wish we were still there, but things seemed much calmer and stable when we left. At least my brother is heading down in the morning. We're close enough to do another quick trip if necessary.

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  11. Love the photo of your mom. So sorry to hear of her struggles and then the lousy flu. Maybe she'll make a comeback? It's often so very hard to get to the end, but hospice, as you know, is a wonderful service for the patient and the family if you end up going that route. My dad had that care at home and it sure helped out (supportive care and educational) my dad, mom, brother and me at the time. Thinking of you, Roger, your mom, and your siblings. So glad you made it through strange lands for the visit and that you have involved siblings. Kim in PA

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    1. Kim-- We're waiting for the hospice referral. My mom is still in the hospital and her regular GP has been out of the office. Lots going on, and it's an emotional challenge trying to figure out when to drive the 350 miles south again. Thank you so much for your good thoughts.

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  12. Thinking about you, sending you peace...

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    1. isabelita-- I've been thinking about you too. Hope all is well for you.

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  13. Robin, I am sorry to hear of sad events...
    My thoughts are with you and your dear mother.
    Lots of hugs.

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    1. Sonia-- The events get sadder each day. Thank you for your good thoughts.

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  14. Incan only hope things get better but you are not the only one in the same boat. In the last two weeks my Father in law has been in hospital twice the second time was a wonderful wedding anniversary present for my wife. We are now wondering what will happen next. Keep smiling and "always looking the bright side of life"

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    1. Bill-- I am so sorry to hear about your father-in-law. Hope all is well for him. We do keep on smiling and looking on the bright side. Thank you for your good thoughts.

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  15. How funny! I was born in Simi Valley. California sure has had a crazy year between all the fires and the mudslides. So sorry for all the stress in regards to your mother. It is so hard watching those we love suffer. Praying for better care !

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    1. Kelleyn-- Interesting that you were born in Simi Valley. It's got some very cool mountains and landscapes there. Thank you for stopping by and your kind thoughts.

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  16. Oh Robin. Just seeing this now. Holding you and your mom in my heart. Sending prayers and love.

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