Hats, Scarves and Mother Stories

What a gorgeous day today.......tomorrow, should be a cold wind. As people pull through their warm clothes they find a hat or scarf that Momma Flora made.

People stop me and ask how I'm doing. They ask me what I'm doing for the holidays. They tell me about their own mother. How they survived their first holiday after their mother passed. They tell me how their mother is still here but in ill health. How they miss their mother's cooking. Everyone has a mother story. Mother stories surround me. People feel compelled to share mother stories with me.

The holidays are here. They are all around me. Just like the hats, scarves and mother stories.

sea change

So this is a hard time for many people and it resonates in me. The holidays are coming. I'm going thru my mothers mail..... and it feels like it will never end, this constant flow of things to address.

I'm supposed to be the strong one, the one to take care of things.

Right now I feel like a little kid in a riptide. I'm swimming, swimming, swimming and still getting pulled out. I know I'm supposed to relax, swim parallel to the shore, it will drop me out. But I'm feeling like I'm going under and I need to fight it. What in the world am I doing??

Grief is not new to me, but experiencing grief without my mother is new. We always had each other in the toughest times. She was always there for me. Now I feel a little lost...well that's not true.....I'm really lost. Thank God for my friends, they have all been amazing.

I'm seeking my level, my normal. I hope there is a sea change soon.

On a small day in October

While I still struggle with my mother's loss, this week set the Outer Banks reeling with the loss of "Steve the Dream" Thomas and Ron Mcknight. Both of these men passed away, one from cancer and one from a surfing accident. I knew both of them, not well, but we were friendly.

Ron I met in the water, on my surfboard. He was always kind to me, rooting me on when I actually caught a wave. Giving me encouragement and he was always positive. If he hadn't seen me in the water for a while, he would ask how I was. Interestingly enough, I don't think I ever saw him on 'land'. But in the lineup we would chat about his life and my life. I counted him as a friend.

Steve was a performer. But he was a sweetheart with a beautiful voice. I met him personally when he was studying voice under Ruth Wyand. He loved his children, he loved music, he loved surfing. He was always kind to me. They were both, always kind to me.

On the same day that Ron's friends paddled out to celebrate his life, Steve lost his in the water. It was a small day in the water in October....2 kind souls were called home.

'normal'

So you always think that when you get thru the crisis, people know your mother has passed away, it's time to move on, stop writing the blog and get "back to normal". We all know that "normal" is a relative term (especially for me). My life will never be "normal" again. It has changed and will change in ways I have yet to discover. Being so close to my mom was a blessing....and sometimes now feels like a curse. I miss her this morning. Not that I haven't missed her, but I really miss her this morning. There are so many things I need to tell her. And yes, I know she's here with me and I talk to her all the time......I just wish she would talk a little louder because I can only faintly hear her in my memory. Telling me how it sounds like 'right timing' and 'listen to your instincts, they are good' and 'one step at a time'.

I was never completely 'normal', she always encouraged me to live my own life my own way.

I wonder what 'normal' will be now.

Yikes

So today I picked up my mothers ashes.

It seemed so strange not to pick up the phone and call her.....to tell her that Linsey's boyfriend got that job in Baltimore and they are moving. That the sun was finally shining......to ask her advice on a million things. I immediately burst into tears in the car. It was a hard realization. I have to find my mother inside my head and heart. I can hear her voice and laugh. I need to find comfort in the fact that she still speaks to me thru everything she taught me over the years. I need to live confident in the fact that I am my mother's daughter. Those are big shoes to fill.

Yikes

Going Home

So tomorrow we will celebrate the life of Momma Flora. She asked for 2 things. She wanted to be cremated and she wanted her ashes spread in the ocean, along with her beloved dog Ruth's ashes. She also wanted a service at her church for her more traditional friends. So tomorrow, we will celebrate her life at the Ark International Church in Nags Head at 1pm. Her good friend Will Fields will sing I'll Fly Away as she requested. I will be receiving people at my home after the service.

At a date yet to be determined, we will spread her and Ruth's ashes in the ocean. Then she wanted an "good old fashioned Irish Wake" where people drank to her life, told stories, played music, danced and enjoyed remembering her. She wanted people to be happy, because she didn't fear death. She knew she was going home.

Hot day in the Fall

My brother and I woke up today with complete and total body pain. Of course we attribute it to be old, playing too many sports and waking up on a rainy morning. But we both also acknowledge how much it takes out of you to watch someone you love die. He is on his way home now.....changed by this experience. Linsey (my 'daughter-figure'...ok, my daughter) checks on me via text message a lot. She's away at school.

Im making my way thru my morning fog, making necessary phone calls, making coffee, feeding her cat Princess (now mine) and the dogs. My life has changed. Not sure how yet.

On a hot day in september by mother passed away. It's only fitting that it's a cool rainy morning, washing away the pain but leaving the legacy of her love behind.

Need to be

So mom is gone. She passed today after a hard but quick battle with cancer. I will miss her more than I can say, but I am grateful that she didn't suffer long.

I'm a little lost. I walk around the quiet house not sure what to do. For the last 3 weeks, my focus has been on her. People say 'rest'. People say 'eat'. People call on the phone. People stop by. People want to help. I have no answers for them. I need to just 'be'

nurse gangbusters

So many people that Mom loves came today to see her. Her son Mat, Laurie and Emma , Shannon, MaryJane and Calvin, Margie and Cathy. Even the hospice nurse that is covering this weekend that mom referred to as "nurse gangbusters" came by to check on her. As the day wore on, she became weaker and less able to respond. She is now close to death. We have told her that we love her and to go home, away from this broken body. But she lingers to a thin thread of life. My only focus now is to be sure that she is pain free.....and to tell her that I love her.

cold hands

so 5am seems to be the time that pain has settled in relentlessly. I finally had to call the hospice nurse after nothing helped. When someone you love looks you in the eyes and tells you they are in too much pain you feel like a person in another country that doesn't understand the language. Everything you know and everything you try doesn't work. She sleeping now...... for the time being.

Her hands are cold.

slowly

Mom is at my house. We have a hospital bed which really helps. My schedule revolves around her pain medicine. It seems that everyday requires more pain medicine more frequently. She's too weak now to get out of the bed and even a bed bath is exhausting.

I saw a friend from out of town yesterday that went thru the same things. He said that the one thing he wasn't prepared for was what came after his mothers death. After everything settled down, he realized that he had no parent. He broke up with his girlfriend, quit his job and felt lost. Even though she's still here, I feel lost. I'm grateful to still have her, but I feel the loss a little more everyday. There is less and less of my mothers spirit in that broken body. Maybe that's the way she needs to go. Slowly, so my brother and I...and her friends, have the time to tell her that we love her one more time and feel her love back.

She knows she's dying and it's breaking my heart.

look up, look up

I took the dogs out for a quick walk and the mantra "look up, look up" popped thru my head. When I looked up, I saw an inky blue sky with a bright moon and evening star.

It seems to me the single most phrase I use when trying to help mom stand up is "Look up, "Look up mom, I don't want you to fall."

Us new surfers always look down at our board instead of at the wave. Zed, my instructor in Barbados always said "Where you look is where you go.....look up at your fans :)". Now, when I'm out in the water I hear "look up, look up" in my head.

I'm sure if you ask her, Momma Flora would say that I have drilled that into her head too.

I know that mom is looking up, because that's where she will go.

hospice

Today, Dr Thompson will write the order for hospice. We had a bad night again last night....a lot of pain and mom was really anxious and confused. She seems more clear and comfortable today, but weak and exhausted. I need to get to my house and start rearranging furniture. And sleep....Lord have mercy, I need to sleep.

The new man in my life, Douglas has slept in the spare bedroom for the last 2 nights and helped me get mom up to the bedside commode, feed her, etc. All Momma Flora keeps saying is "Poor Douglas". I said "Poor Douglas??? What about me?? :)" She said "No, poor Douglas, he shouldn't have to do this." He just just smiles.

So now I need to get my head straight, drink some coffee and start to make a plan about moving Momma Flora to my house.

Blue eyes

So we had a discussion this morning about Hospice. Mom is weaker still and just doesn't think she can keep doing this. "This is no way to live" she said today. I don't blame her.

The new home health nurse came to see her today and was very concerned about her state of health. Mom greeted her and then said she wouldn't be alive much longer. The home health nurse agreed that she looked too weak and needed to be on hospice. She agreed to help me get the ball rolling quickly. Looks like we'll get a hospital bed and move mom to my house at some point soon. I'll be grateful for the pain control.

When I look at her this afternoon she looks very pale. Her blue eyes are fading. She holds my hand.

Bed of a million pillows

So we've a couple of tough days. Her pain seems to be a little better controlled but mom still have breakthrough pain and she get's really confused.

We have some decisions to make about her care. She's getting weaker and more frustrated. We were hoping to try to get her strength back after the pain was under control but I feel like we are losing ground. It's a hard reality.

She can't really sleep laying back much, it's too hard on her breathing and swallowing. So she stays in various stages of sitting up. We are constantly rearranging her to keep her comfortable. I call her bed the 'bed of a million pillows'.

Hats for Bela

So my brother Matt came and spent the evening with mom yesterday. She was so happy to see him. He gave me a break to go out to dinner with Douglas and my good friends Erik and Christine in from Chicago. It was nice to get out of the house and yet I still had guilt about needing time away. In my head I know that it's a must to get a break, but in my heart I feel like I should be there for every little thing. It's a crazy mix of emotions and tough to explain.

When I returned, the pain was rearing it's head again and it took a little while to get it under control. Matt did a great job with her.

Life throws a lot at us. Lately, here on the Outer Banks, there have been too many sad stories. Isabela Rainey being one. If you hadn't heard, Isabela is my neighbor. She is 13 years old and had a malformation in her brain that no one knew about. She's had multiple brain surgeries and mom wanted to do something. Momma Flora made her 2 hats before she became too weak to crochet. She wanted to make sure that they were really soft and not too tight. She thought Fenton, her sister, might want one too so she made two. I haven't had a chance to get those hats to Bela's family.

That just shows who Momma Flora is. She had just found out that she probably had cancer and she's making hats for someone else. What a great example.

Call me "the remote"

My brother always called himself the black sheep of the family. It would be a lie if I told you that he was conventional, because Lord knows he's not. He is on his way to see mom and she is thrilled.

We had a couple of rough patches today, but we got past them. She's comfortable now. Most of you that know me socially see me as easy going. Most of you that know me at the hospital know that I'm kind of intense when there's something important to get done. Imagine me now :)

I have written up lists of all her med's, 2 different ways. One for when they are to be given, One for what they treat....oh yeah, and one list for if you can crush them or not. I suppose that's three lists. I have a record of all medication times given and I have highlighted the times for my brother to give medications. Geez, you'd think I was a nurse!

Momma Flora has been happily distracted by college football. Too bad the remote stopped working, maybe she made too many phone calls on the remote :) You can call me 'the remote'

Pain Pain go away

I think it's hard to imagine how cancer can cause such intense pain. Most of us have had our own brush's with pain.....Injuries, surgery, migraines. But nothing compares to this. We battled the pain demon last night. It seemed like no matter what we did, we couldn't control mom's pain. Neither of us slept. I cried. We were both so tired and frustrated. It's just no way to live.

Home Health came in today to do an assessment and determine what services they can give momma Flora. Sounds like we will see a physical therapist to help her get her strength back and a nutritionist to help with her intake. But again, all of these things hinge on pain control.

We started something new today and right now she's actually comfortable.

Pain pain go away.....

Dogs and Horses

Momma Flora is lucky to live in Wanchese. She is surrounded by great friends. All of whom have at least one dog and at the most a menagerie of Horses, Dogs and Cats. So as a lover of animals she seems to be in the best place. Everyone has been checking on her and she can see the horses out the window.

I have been staying at my moms and bringing the dogs with me. They have never seen a horse up close and personal and Miko is especially interested in meeting one. Tyson, my mom's favorite horse was out today. Miko and Hilo pulled me over to the fence so excited. Hilo is usually the biggest animal in the room, so he was nervous about meeting something bigger. Miko just danced right over and lifted her head, Tyson lowered his gently. Miko and Tyson touched noses and stood still for what seemed about 10 minutes.

When I told mom this story her face lit up for minute. She smiled at the thought of it. She then went back to sleep.

The deputy at the door

S0 mom needs someone with her 24 hours. She is not clear or strong enough to take care of herself. The dogs and I have been spending the night and then her friends have been coming by so that I can run some errands. When I leave, I make sure that everyone has my cell phone number in case they need me.

I was gone for 3 hours today. About 10 minutes after I returned, there was a knock on the door. It was a Dare County Deputy. Apparently, while I was gone, she hit the speed dial for 911 by accident. The deputy was very understanding, took her information and let us know to call if we needed anything.

I'm sure she will, lol

Hello Hello?

So we had kind of a rough day. Early on mom did pretty good, but this afternoon she had a lot of pain and we did a lot of work to get it under control. She seemed a little more like herself this afternoon. Still not able to walk to the bathroom on her own, but mom still has a sense of humor through it all. Every now and then she'll get you with a zinger. Every now and then the pain medicine makes her hysterically funny.

I walked in to Momma Flora's bedroom to find her trying to call my cell phone with the TV remote control. Really, I couldn't help but laugh :)

home

So we made it home last night. It seems the trip took alot out of her. She is pretty weak so getting her up and down is a lot more work. I see her fading and she is just tired of of dealing wiht the pain and swallowing issues. My whole focus is her comfort. But I was reminded by a kind friend that I'll be no good to her if I don't sleep. It's been a while. Personally though, I think that's why God made coffee.
Last night Flora slept with her kitty named Precious. They were really happy to see each other.

monday night football

So mom went for her biopsy. The 'mass' was on her thyroid. The radiologist said it was fluid filled and they essentially drained it for the biopsy and it is not pressing on her esophagus or trachea right now, thank goodness. Generally speaking fluid filled cysts and benign so we will wait to see what comes back. The good news is that the cyst is drained and we get to come home.

Mom is still on a lot of pain and on a lot of pain medicine, but she did surface enough to tell me that there was monday night football tonight :)

good swell

So, the very kind Dr Reeves and his PA Roselynd came in this morning to tell us that the pathology report from her kidney biopsy is back and it is as they suspected, transitional cell carcinoma. Unfortunately it is a high grade, very aggressive form. They are concerned about her level of pain and how weak she is. He doesn't want her to come for surgery and never get back home. She agrees. We still have to see what the biopsy result are on her neck and how we can manage that. We are waiting for them to take her for that procedure.

She reiterated to the doctor that she wants to be comfortable and she wants me to take her to the ocean one last time. He smiled and said that he thought that was a good idea. He said that there should be some good swell this weekend (surfers!).

relief is in the work

When I'm helping mom to the bathroom, or adjusting the pillows, or getting the nurse....that's when I get relief. I'm in the moment and doing the most honorable thing, helping my mom. But when she sleeps and I'm alone in the room, that's the hardest work of all. I think of all the things to do, all the things she wants and doesn't want.....and I think about life without my mom.

I'm lucky. I have a great relationship with my mom. She knows me (and yes, still loves me:). There are so many things that can go unsaid between us.....with one look we can crack each other up. Our relationship is a gift. And I'm grateful, but this awful, horrible, unfair, painful, mean....it sucks.

Are you ready for some Football?

So it's the opening of the NFL season. Between the US Open, College Football and Professional Football there has been alot to distract us. So the Redskins play the Cowboys tonight and we have no fan gear with us......not even any clothing close to the correct color. So off to Target I went, found a burgundy throw blanket for mom and a shirt for me. Now we are ready for some football.

They moved us to another room.....this is our third room here, we are on the tour. We get to keep our nurses (yeah) and this room actually has a foldout twin bed attached to the wall. I must be living right.

I talked to both the ENT and the Oncology doc today. She's scheduled to have the biopsy in the morning and they are both ok sending her home if Dr Reeves (urologist) is ok with it. They will set us up with a pain regimen at home. I asked the ENT if he would be comfortable giving us the results of the biopsy over the phone because it's too hard for her to travel. He said yes.

So, unless something new comes along we will load up our stuff and head for beach tomorrow. We are both homesick for the beach.

Pancakes and Sausage

So my friends with babies tell me that when the babies sleep, you sleep. Otherwise you never sleep. I think that is sound advise for me as well.

Last night was better. They did an awesome job keeping her pain under control. She slept for about 4 hours at a time. I would periodically wake up in the chair and find myself in the most contorted positions. But mostly I would wake up grateful for her sleep.

She woke up this morning after dreaming of eating pancakes and sausage. She said that she could even smell it. That was not a wish I could fulfill since she's having trouble swallowing. But they did bring her some grits and she was happy. She was born south of the Mason-Dixon line you know.

Cleavage and Earthquakes

So mom relished telling me this story. About 2 months ago a religious man in Iran made the news saying that women who wear revealing clothing are the reason for earthquakes in the world. So every time she see's someone with cleavage, she wonders where the ground will be shaking next.

After she woke up from her sleep this morning, she looked at me with bleary eyes and said "Wonder who's gonna have an earthquake today?" She tried to summon up a devilish grin but it was tough. It immediately made me look at my cleavage and laugh. I've caused a lot of damage over the years :)

one bad apple

So morning came along with the calvary. The doc on call, charge nurse and RN came in together and we had a nice conversation, cleared the air, and they immediately got her pain under control. She slept for 4 hours straight. It was nice to see her that comfortable.

Still, I got my own coffee.

The nurses were nice enough to find me an empty room to take a shower in (so I didn't wake up mom). They probably did that as much for them as for me :) Warm fuzzies for the staff returned along with my hot shower.

Her Doctor consulted with an oncologist and she came around lunchtime. Basically, she and her resident reviewed the medications and history, did the 'cancer dance' (you know....well it could be benign, unrelated, easy to remove...or....it could be cancer...but really it might not be). Momma Flora told them "I'm not afraid of the word 'cancer', just tell me what you think".

What they do know is that they will do the biopsy on monday with a large bore needle to make sure that they get a good sample. They should have some idea monday what we are looking at. They changed her pain medications (Lord have Mercy) and hopefully it will all work.

She was moved to a room on the surgical floor, south 113. I'm sure that my reputation precedes me...at least I hope so.

So far, it appears that one bad apple hasn't spoiled the whole bunch. Whew, what a relief

Service Recovery

So I was lucky enough to meet the House Supervisor at 1am. Magically, mom was made comfortable enough sleep for about 2 hours. The supervisor tells mom that she's lucky to have a strong advocate in me. That is 'service recovery speak' for 'your daughter is a bitch but we want you to be comfortable'. The evil Belinda (the nurse) no longer makes eye contact with me. Mom tells me not to eat or drink anything she brings me, it will probably be poison.

So, little sleep......... might not make it back to the outer banks today. She needs to feel a little more confident in the staff.

I'd better get my own coffee.....

Sleep

So sometimes mom says that she's afraid to sleep because she's afraid she won't wake up. I'm afraid to sleep because I want to make sure that she's ok.

It's taking a lot of medication to keep her pain and spasms under control. I just had words with a nurse to get her pain medication. The nurse thought that she was getting enough pain medicine and you know, we should wait and see what is going on with her. My response? 'WE TREAT PAIN. tell my mother, who is pale, sweating, nauseous and complaining of pain that she's had enough. Oh by the way, call your supervisor. " Mom got her medicine and I'm sure I'll be talking to a supervisor.

WVU beat Marshall in overtime. She was pulling for Marshall

weekend warrior

So they want to keep mom over the weekend and do the biopsy on her mediastinal mass on monday morning.

Her urologist called me to tell me that he was very concerned about how weak and frail she appeared in the few days since she has been here. He is very concerned that this newly found mass is related to the renal mass and that these procedures are taking their toll on her.

I think we are both a little relieved that the Doctors see how ill she is....... and They are making sure that she knows they are not sending her home like this.

She is adamant that I go home over tomorrow and come back sunday so I can get some rest and surf.....seriously, she said that. Oh yeah, and find some other clothes, lol.

She's making a list of the things I need to bring back......Washington Redskins blanket, some yarn and crochet needles.....you know, all the important stuff.

Another Plane

We met the ENT, he's scheduling an ultrasound guided needle biopsy of the mass in her chest/neck tonight or tomorrow, so we are spending another night in Greenville. Of course he states that this could be totally unrelated to the kidney, but honestly, when I asked, he stated that it is more likely that it was related.

She's having more trouble swallowing today and they feel that it is the mass pressing on her esophagus. The nurse practitioner from the urology practice came in and and kind of filled mom in on the plan. After she left Momma Flora asked "What did she say? I'm kind of on another plane right now"

Good Morning Thyroid

I hate it when the phone rings in the morning before I'm moving. Mom called the hotel room and said that they were taking her for a thyroid ultrasound this morning. She wasn't clear on all of the reasons, but the doctor has been in and she said we have alot to talk about.

I spoke with the PA from Dr Reeves office. The MRI was clear but the CT Scan showed a 3 cm mediastinal mass that appears the pressing on her esophagus and possibly compressing part of the main bronchus of her lung. So now the question is.....does she have cancer from another site? Is the renal tumor secondary or primary?

This mass would explain her swallowing problems. So they will get some blood, and try some other medication for her swallowing. We still expect to go home today. If she can swallow.

Tennis and Cancer

So before she went into surgery, my mom wanted the Anesthesiologist to know that she needed to be awake enough for the opening of the NFL games tonight...."It's New Orleans against the Vikings you know, the Superbowl showdown. Brett Farve is back, even though he's kind of in bad shape.....injury wise." The doctor smiled and shook his head. She then instructed me to watch the Tennis matches today so I could tell her all about it.

When she woke up, I had to tell her about Tennis.....and Cancer. They found a tumor, Transitional Cell Carcinoma. It was obstructing a large part of her kidney, hence the pain. They placed a shunt to bypass the blockage. That should relieve the pain for now. They need to remove your kidney and run additional tests to see if it's spread.

You know what she said? "Are you ok?"

Closet Space

You know I always lament my lack of closet space. I live in a beach box with not much storage space.

While we wait this morning for surgery, it occurs to me that I have alot of stuff that I don't really need. In these circumstances it brings you to back to what is really important.

On the trip to Greenville, mom said she just wanted to feel well enough to put her toes in the sand and see the ocean. It all comes down to living the kind of life that gives you joy and having the health to do it. Both of us are so grateful for the friends that have become our family, for all the good things in our life.

So as we wait for her procedure, she lightly dozes. Her pain is under control right now. So we wait for the next step........ As Momma Flora Says "one step at a time, we'll see what's next".

Special

So I know that people will tell me that my story is not unique, But I say it is. My mom is special. She is not special because she's my mom, she's special because of who she is....And right now she is under siege. Right now she is at Pitt County Memorial Hospital waiting for surgery. She has a mass in her kidney. Maybe tomorrow we will know what it is and she will get some relief from the relentless pain.

During the day I watched her energy and spirit wane. The drive from the beach, the wait at the doctors office and the wait to get into her room were almost more than she could take. But through it all she found humor in every situation, had a smile and a kind word for each person that she met. Now she is resting.......and so will I.

So I'm thanking everyone for their love and prayers for her. And I'm thanking the Universe for all the good things that will happen tomorrow for Momma Flora.

Because she is special..........really, she is........