Vicki’s Journey

Hi everyone. It’s Elyse again.

My momma came home from a month in the hospital and rehab on Wednesday, May 13. She is now back at UCLA in the hospital.

When she came home, she was able to get out of the car and into the wheel chair, from the wheel chair to a chair in the living room, and then that’s where she stayed for 12 hours. Obviously, looking back, I shouldn’t have allowed her to stay in that chair. I kept asking if she was comfortable and she was telling me she was. She started speaking nonsense and experiencing delirium and we just couldn’t get her safely up. Our incredible friend and neighbor, Bob, came over at one in the morning to help lift her with Wade. We finally got her into the hospital bed we have downstairs. She stayed in bed from from Thursday until Sunday with the exception of being lifted into the wheel chair once. She had barely eaten anything since Wednesday. Like a bite of peaches and a sip of ensure every once in a while. We’d offer her literally anything and she just wasn’t hungry. She’s lost about 20 lbs in the last month.

We were in constant contact with her palliative doctors; trying to adjust pain meds and address the delirium she was experiencing. It’s a tricky balance.

Saturday night, her doctor told me she looked over all the blood work from the rehab institute and felt she needed to go to the hospital and get a blood work up to check for infections since she seemed to be getting weaker and they couldn’t figure out why. They told us it wasn’t an emergency, but it was their opinion that she needed to be checked out. We waited Saturday night and we had good conversation and made fun of houses for sale on Zillow, which is a favorite past time of ours. She seemed to be feeling a little better.

Sunday, she felt like she was weaker and she couldn’t even work with us and the caregiver to move out of the bed at all. We called 911 and let them know what was going on. She went to our local hospital where they did a CT of her head (because we expressed concerns with the delirium) that came back clear. She was very dehydrated and they found infection in the urinary tract. We let them know we wanted her to be at UCLA and they transferred her there last night.

I spoke to her main gyno oncologist today and he informed me they did several scans. She has an infected diverticula in her colon. He believes right now the best course of action is to treat with antibiotics and to continue to keep a close eye on her. The alternative is major surgery and he doesn’t feel like she would ever fully recover from that surgery due to how weak she is.

He let me know that the cancer seems to have reacted to the treatment, but it’s still there. Obviously, we knew that and we always planned to continue treatment, but that’s never a fun thing to hear over the phone. We are hopeful we can address these infections and continue cancer treatment. He said she’s pretty sick right now. Again, I know that and that’s why we went back to the hospital, but still hard to hear about your momma.

My heart hurts so much right now. I hope and pray I’ve done the best for my momma. She called me at 6:30 this morning and she knew she was at UCLA, but it’s obvious she’s fatigued and in pain. Did I miss something? Should I have taken her to the hospital sooner? What more could I have done? I know in my heart that I’ve tried my best, but I can’t help feeling like I’ve failed her. Why didn’t the rehab catch these things? Why did they send her home when she had such a high white blood cell count and needed to be lifted into the car by an orderly? Should I have fought them? We noticed the delirium, confusion, and depression over the phone and spoke to the doctors at the rehab, but she’s very good at performing for the doctors. She acts differently in front of them than she does with me and Preston, so the doctor didn’t seem to notice the confusion because she answers their questions appropriately. Even though we brought up our concerns, they didn’t seem to address them. Anyway, I’m rambling and I know you all don’t come here to hear about my struggles with this.

I’m also very aware that many of you are her clients and sent her your tax information and you want to know what’s going on with that. I honestly have no answer for you and I’m so sorry. I know the deadline has been extended until July and, hopefully, with all of our prayers and healing energy, she will get better and she will be able to finish out tax season. It’s just her; she doesn’t have anyone working with her, so I don’t know how to handle all this, and I appreciate your patience and grace.

The doctor last night at UCLA told me they were going to work to allow me to visit her to help with the delirium. Apparently, delirium is a common thing that happens after prolonged hospital stays, especially with no visitors. That made me feel good and made me feel like they are hearing me and taking our mental health concerns seriously this time, in addition to the very real physical issues she’s fighting.

I just wanted to update you all and once again thank you for your love and support. Please keep sending the love and healing energy. Prayers are so appreciated. She might not respond to texts, but I read her a bunch of texts she missed and she was smiling and happy to hear from you all. Some made her cry. She dictated responses for a few and i sent them. I know those help her. Praying for more positive news and that she’s home soon. I just want my momma home and happy with us. I miss her so much. I’m so frustrated she was gone so long and then home for a few days and then right back to the hospital.

If you have any questions or anything, you can text me or call me at 805 404 9853. I’m much better at responding than she is. 🙂

Sending so so much love to you all. Thank you for reading.

Elyse

Hi again! Still Elyse here.

Mom is still at the acute rehab facility. Some of you may know that today, May 12th, is her birthday! She doesn’t want any fuss made, but if you could send her a message here or a text, I’m sure she’d appreciate the love!

Things have been really difficult. She is still unable to walk without assistance because of the lymphadema. She’ll need a wheel chair when she comes home. She’s on a lot of pain meds, so she’s been sleeping a lot, and she’s been a little out of it even when she’s awake. She’s getting little bits of PT and OT here and there, but the pain makes it difficult. Her hemoglobin levels were very low, so she got a blood transfusion last Thursday night, so hopefully that will help with energy.

She’s been in the hospital and rehab since April 17th. I’ve only been able to see her in person once since then. It’s really lonely and disheartening and there’s a lot of demorialization and depression that comes with being isolated and in pain. The doctors are hoping she can be discharged tomorrow, May 13th and continue recovery at home. They think that’s probably best for her overall well being. Being alone for that long has taken a toll.

When she comes home, we will have in home OT, PT, and probably once a week home nursing to check in on her, as well as caregiving support. It’s a lot of change, but we’re hopeful we can get the pain under control and continue recovery so we can continue fighting the cancer. Working is also very important to her and I know she’s hopeful she can catch up and finish out this tax season.

We’re just trying to take everything one day at a time. It’s been a really difficult month. There’s better days and bad days. I miss my mom so much. I miss the mundane things like her nightly good night phone calls or coming to her house and seeing her working in her office. I miss watching Wheel of Fortune with her. I really miss going to Disneyland with her. I miss just seeing her walking around. Just in October we were on a cruise of the Mediterranean. We rode vespas in Rome. I feel like I took so much for granted. I pray everyday she’ll be able to walk again, but I’ve accepted that we might just have to adapt. As long as we’re together, that’s really all that matters.

Thank you for reading. If you have the time to send some birthday love to my mom, it would mean so much. Your kind words truly help more than you know!

Elyse

Hi again. It’s still Elyse here.

My mom is at an acute physical rehab facility called California Rehabilitation Institute.

She was at UCLA hospital from Friday, April 17th through Wednesday, April 22nd before moving over to CRI. She’s been in a lot of pain and has had a very difficult time moving her legs on her own, so the doctors felt she needed physical rehab before she could safely come home. They ran a myriad of tests and determined the pain is from the agressive treatment she’s had to fight the tumor that was in her pelvis. The doctors have told me that pelvic cancers are notoriously extremely painful and leave a lot of scar tissue as the tumor shrinks. They are positive this will resolve over time with strong pain management and physical therapy. That’s a lot easier said than done when you’re the patient in extreme pain.

There are bad days and better days. I speak to her everyday. It’s really horrible that I can’t see her. This has taken a huge mental and emotional toll on her, in addition to the physical toll. She’s such a strong, independent, in control person, that having to rely on others and give up so much control has been very, very difficult. My mom likes things her way and, unfortunately, things don’t always go your way in the hospital. If you know my momma, you know ;).

She called me this afternoon and was in better spirits than I’ve heard her all week. She had some physical therapy today and she said she was feeling, “pretty good.” Considering where we’ve been these last few weeks, I’ll take it.

The care she’s getting at CRI is the same as in the hospital at UCLA, but the focus here is on PT and OT. We are very hopeful that her leg pain can be managed and she can continue getting stronger with physical therapy. Typically, CRI requires a patient to agree to 3 hours of physical therapy a day, but with covid 19 they’ve relaxed their admissions in order to move people out of the hospital sooner. Usually with 3 hours of PT a day, patients leave in about 2 weeks. With the relaxed standards, they are giving as much OT and PT as the patient can tolerate. We’re praying she can tolerate a good amount each day and be back home in about 2 weeks. Only time will tell.

This has been a major setback. To say this past week and a half has been difficult would be the understatement of my life. This is not easy. She’s dealing with a lot of really difficult stuff right now, but she’s such a force. I pray we’re all home together soon.

I know it’s lonely for her without visitors, so if you’re able to comment here on the blog, send her an email, or a text, I know it will make it a little easier for her. She might not respond, but knowing people are thinking of her could really boost her mood. I have the beautiful cards you’ve sent since she’s been gone, and I will make sure she sees them.

If you would like to send flowers or cards directly to her during her stay, the address is:

California Rehabilition Institute

Attn: Victoria Condos (8th floor)

2070 Century Park East

Los Angeles, CA 90067

Most importantly, please keep my mom and our family in your thoughts. We thrive on your well wishes. It’s so comforting to me, and I know it helps my mom keep fighting when she sees your love. Thank you for all the love, prayers, healing energy, and positive vibes you’ve sent so far! Please keep sending them! She needs them!

Elyse

Hi! This is Vicki’s daughter, Elyse, updating for my momma.

She’s back at UCLA getting treated inpatient for her pain.

She’s had a very difficult time since she was in the hospital for the brachytherapy almost 2 weeks ago. Brachytherapy is extremely agressive. She is very grateful to have access to this treatment, but all that radiation comes at a cost. Ever since she came home on April 9th, she’s been really swollen and her pain has gotten worse and worse. It got to the point where she could barely move. Wednesday night she had a low grade fever. We called 911 and she went to our local ER. They ruled out anything life threatening and sent her home.

She was home all day Thursday, but nothing was getting better. I spoke with her pain management doctor. We upped her pain meds, and she let me know that it’s not uncommon for cancer patients to come in to the hospital to have their pain managed.

After a very painful, awful morning for her Friday morning, we decided to get the ball rolling on getting her admitted to UCLA. With everything going on with covid, this was not easy, but I spoke with her OBGYN oncologist and the pain management doctor and they made it happen.

It was extremely difficult to coordinate getting her to UCLA as it’s about 30 miles away from home, and her mobility was close to 0, but I know in my heart we made the right call. I’ve spoken to her several times today and she’s doing ok. She’s on strong pain meds. She’s got compression wear on, she’s eating, and she worked with a physical therapist. They ran all sorts of blood work to try and figure out why she’s having so much pain and if there’s an infection. So far, everything has come back negative.

When I spoke to the doctors, they seem to feel this is her body responding to all the treatment she’s had. Everyone responds differently. The oncologist said there was a lot of cancer in there and her body has worked so hard to shrink the tumor. She was diagnosed barely 2 months ago and started treatment less than 2 months ago. Less than 60 days. It’s hard to believe. She’s been through so much in such a short amount of time.

My mom is my best friend. She’s so strong and sassy and fun. I miss her so much right now, and I can’t wait until she’s better. This has been hell for all of us. My boyfriend (she likes to call him her son in law. We’ve been together for 16 years.), Wade, and I have been with her round the clock, except when she’s in the hospital. My brother, Preston, lives in Oregon and is unable to be with us because of the pandemic and my mom’s compromised immune system. This truly is awful timing. Not like there’s any good time for cancer. I can’t be with her in the hospital, and it’s really hard and scary. I mean it when I say your comments and kind words about my momma mean so much to her and to all of us.

Thank you from the bottom of my heart for loving my momma and for reading her blog. Cancer sucks, but I don’t think she truly understood how loved she is until all of this began. She sees all your comments, and she’s often moved to tears. She has all the cards you’ve all sent hanging on the mirror in the entryway. You’ve all helped more than you know. Please keep sending your love and prayers and positivity. We all need it now more than ever. Thank you.

Elyse

Hi everyone!

This morning I received the results of the MRI I had yesterday. The tumor in my pelvis has shrunk significantly! It started at 37mm x 25mm when it was measured on February 6th, and yesterday it measured at 21mm x 13mm!! I can’t tell you what a relief it was to read this news this morning. There was a lot of medical information in the report, but basically some parts of the tumor are no longer even measurable and words like “resolved” and “normalized” were used.

My doctor wrote a note on the top of the report telling me how happy she is with my progress. That was great to see.

The MRI yesterday was really hard. I was in there for 2 hours. I was uncomfortable and it felt like it would never end, but these results remind me that while this journey is not easy, it’s very worth it.

There’s still a long road ahead. I have my brachytherapy April 6th, and while I know I’ve been coughing much less, we haven’t checked in on the tumors in my lungs since February. The doctors were mainly concerned with the tumor in my pelvis, so that’s what we’ve attacked first. I know there’s a lot of fight left, but I’ve got a lot of fight in me, and I‘ll just keep taking it one day at a time!

I figured we could use some good news with all the strange things going on in our world right now. Thank you for all the positivity and prayers! I can’t tell you how great it’s been to hear from so many people. Please keep sending those positive vibes!

Love to you all,

Vicki