Tuesday, May 29, 2012

Scan Results [dislike]

We received some disheartening news today regarding Lisa’s most recent set of scans from last week. The images indicate that there is “a lot” of new disease present in many of Lisa’s bones primarily in the legs, pelvis, and spine. We will be meeting with Lisa’s oncologist to discuss the next available options. Please send Lisa your best.

Wednesday, May 23, 2012

Reminder - I'm taking Lisa in for the MIBG injection today to prep her for scans on Thursday. Thursday's appointments include the MIBG scan, CT scan, and bone marrow biopsy. She'll be asleep for all of it but the biopsy will leave her sore for a day or so. Please send her your best and pray for the miracle of NED, No Evidence of Disease! At the very least we are hoping for "stable" scans after witch we'll start talking about next steps.

Saturday, May 19, 2012

Marianna Yesh Dec 18, 1932 - May 18, 2012

My mother passed away yesterday May 18. I will miss her voice and having her arms around me when I need a hug. It seems hard to believe that just two Saturdays ago, I sat in her sun porch having a conversation with her. She slipped quickly after that. My father, siblings and I provided care for her in her home for three days with the help of hospice. On the fourth day, she was moved to Angela Hospice where she spent the last week of her life. Most of my time spent with her there was in one-way conversation. At times she would ask for pie, water, mumble names or whimper in pain. But other than that, I felt that she was no longer connected to us.

As the days wore on, my father, siblings and I wore thin. Last Monday, as I watched in despair and wondered how long she could go on like this, the date May 18 popped into my head. Hmmm...a little odd, but 18 was my mom's birthday and her wedding anniversary...could it be that would be the day of her death? A few close calls during the week rattled everyone, but I felt oddly calm and told a few people she was going to die on Friday, the 18th. Sure enough, she did......and when I got the news....I felt "connected" to her as if she was in "cahoots" with me and had told me the date so I could be prepared for the moment. As I drove to hospice to "support my father" (funny how all my siblings and I showed up to support my father...perhaps we all really need each other as we said our last goodbye) for the first time in a week I felt my mother and found myself having a conversation with her. It was as though she was with me....I wonder if perhaps in this last week her soul/her being has been somewhere..purgatory perhaps...somewhere that kept her spirit out of touch with us even though her physical body was still here. With her final breath, it as if her spirit has been released to the heavens and while I can no longer see or feel her physical touch, I can feel her presence.

So...rest in peace mom...I love you...I miss you and I can feel you...I know you are here in spirit and I know you will remember the words I whispered to you and will talk to God about curing Lisa.

For those of you who are interested, the viewing will be:
Monday May 21, from 2:00-9:00 pm.
Rosary at 7:00 pm.
Santeui and Sons Funeral Home
1139 Inkster Road Garden City, MI 48135
734 427-3800

The funeral Mass will be at:
Divine Child
Tuesday May 22 at 9:30

If you would like to send donation in lieu of flowers they can be sent to:

Development Office
14100 Newburgh Rd.
Livonia, MI 48154


U of M Office of Medical Development and Alumni Relations
Attn: Mike Hartwell/Blast Neuroblastoma
1000 Oakbrook Drive
Suite 100
Ann Arbor, MI 48104
Make checks payable to University of Michigan

Scan Week Coming Up & Status of Linda's Mother

Lisa remains energetic and by all outward appearances "fine". She had a great time camping last week with some of her Canton neighbors and is really enjoying the warm weather. She will have scans this week so please send her your best. Linda's mother passed on peacefully Friday morning. I've posted the arrangements here for ease of our family and friends to find. Funeral Arrangements for Marian Yesh She will be at Santeiu Funeral home for viewing on Monday May 21, from 2:00-9:00 pm. We will be saying a rosary at 7:00 pm. Her funeral Mass will be at Divine Child. At 9:30 Tuesday May 22. You can also view her at Divine Child on Tuesday morning from 9:00-9:30. Santeui and Sons funeral Home is located at 1139 Inkster Road Garden City, MI 48135 Phone 734 427-3800 www.Santeiufuneralhome.com

Tuesday, May 15, 2012

Thy will be done

Lisa is doing well.  Today is "Lees's Chicken Tuesday".  Lisa will go to school for 1/2 a day, we then pick up her lunch at Lees and head to the hospital for her check-in with her nurse and to find out if the virus has cleared her blood.

Thank you to all for you kind words, support and prayer.  A bed at Angela hospice opened up last Friday and we were able to move my mom.  Having her at Angela instead of her home has been a great relief.   While the hours are still long and stressful,l as she spends her last days on earth, being at Angela allows us to be her "loved ones" instead of her caregivers.  I hope/think it is easier on my Dad to have her with nurses 24/7, however, each day she lingers is very heart-wrenching and draining.  She is highly medicated so we are thankful that at most times she is having little pain.  The trade-off is that the words she utters are few and often we are not sure if they mean anything.  I think my Dad is starting to feel numb.....it's hard to watch her have pain, but just as hard to watch her "sleep" in her medicated state and not know if she is hearing you.  We all have assured Dad to keep talking, that they say the hearing is the last thing to go...  Mom is now considered in the "active" phase of dying so we know that it will be soon...how soon is still in Gods hand....thy will be done.

Thursday, May 10, 2012

I hate cancer

Sorry for so long between postings, as usual, life has been a bit chaotic.  Lisa has been doing well, some complaints here and there about pain, some anxiety about school and lots of routine visits to her nurse.(So routine, that we've gotten to know the Lee's Chicken staff by name--hi Michelle- because we go every Tuesday before Lisa's appts.)

We will continue to check in with the nurse every Tuesday and have blood draws on Fridays, until there is no residual virus from the study found in her blood.  We are on hold for any treatments until then which makes me a bit nervous.  While this might make our schedule a little lighter it is nerve racking as we wonder if the cancer is going to use this time to get a grip and take off.

I've decided I really HATE cancer and other diseases.  I miss my "naive" little life where I knew nothing about cancer, chemo, side effects, hospitals.....I miss my biggest problem being that my kids didn't read at grade level or didn't clean their room or why the hell.......

Most of you know my mom was diagnosed with lung cancer that had metastasized to her liver.  She did chemo for a time and while she did survive longer than they originally gave her, the chemo stopped working and she was left with no other real courses of action.  Being that she is 79 years old, we all knew that the winner of this battle would be cancer.  Two Sundays ago, each of my mom's kids and their spouses got to share time with her and pick out a special memento to remember her by while she shared the story and history of some of her treasures.  One week ago, my brother had my mom's sister come into town for a reunion.  It had been 13 years since the sisters had seen each other.  It was nice seeing the sisters reminisce and getting to talk with my cousins who I hadn't seen since I was a teeny-bopper.  Unfortunately, my mom's sister has Alzheimer's and most likely didn't remember the evening after it happened.  My mom, her eyesight fading, had trouble seeing her sister at first.  Later, my mom's brain re-wired from the cancer and treatments remembered the evening not for its wonder, but for the things that irritated her.

This last Saturday, I got a call from my Dad in the late afternoon.  He sounded exhausted.  My mother, with her re-wired brain, was agitated and not being nice and had been suffering from a headache all morning and wouldn't take any meds.  I went over to spend the afternoon with her and to give my Dad a break.  Fortunately, my mom is/was still pleased to see me and spend time with me.  She took the meds with my coaxing and even had enough energy to sit in the sun porch and chat with mefor a while as the headache she had complained about all day subsided.  She went to bed around her normal 7pm.  She appeared restful and I actually watched a movie with my Dad...I don't think I've done that for 20+ years!

Tuesday, on my way to Lisa's appt, I got a call from my brother that my Mom was not doing well. She had not been up most of the  morning and had not eaten since late Monday.  By the time I was done with Lisa's appt and got in touch with my brother, he thought the end was very near.  Mom was now having what appeared to be "seizures" and trouble breathing.  He put out the call and my mom's children returned to the roost as we waited for the hospice nurse.  As luck may have it, Matt, my close friend, was the nurse on-call that night and was very familiar with what was going on because I had filled him in earlier that day.  Once he got there and administered meds my mom's breathing settled down and she was more peaceful. As the hours wore on, she weakly whispered she was thirsty.  I spent the night there and listened to her quiet desperate cries of "I'm thirsty...I'm falling....something is not right..." repeat thru the night.  I'm not sure how much she was really aware of and if she knew what she was saying, but I kept the vigil and gave her what I thought she needed.

Since then, we have continued the meds around the clock and gotten a hospital bed for her.  We have also established a "watch" schedule until we can get her into a bed at Angela Hospice skilled nursing.  This is hard on everyone and very heartbreaking.  This is not the way any of us want to die and I get a sense that my mom is aware that she is dying the slow death and is fearful of how long it could take.  At this point, we know its not very long, however, her vitals are still strong and that is torment as we wait for the final moment to be upon her which realistically could take up to two weeks.  As my Dad said "I can handle a lot of things, I can walk away from things that upset me, I can deal with pain....this...this watching someone die...I can't do...I watched my mother die and now I'm watching my wife die....I hate it and living this nightmare all over again....".

I ask that as Mother's day quickly approaches you send up some prayers for my Mom, my Dad and all my family.  I ask that God be merciful and quickly release my mother from this earth so that she, and we, no longer watch her suffer in this shell of a body.