It is with a sad heart I write tonight to share Vicky has passed away and now is in God's hands. She talked over the past few weeks of a trip she was going to take, there was going to be a dinner (what would she pack to wear?) and then she would ask if her room was ready for her. We couldn't answer the timeline though we knew the time was drawing near. Like much of the cancer journey she has been on she exceeded all expectations. Vicky dealt with the weeks of hospice with grace, finding joy each day in seeing family and friends as well as hearing from everyone on facebook, other social media and food/cards/etc both at the house and through the mail.
We all felt so blessed by such support during this journey. God has blessed us - we could not have made it this far without the support of so many. Vicky marked this poem for me to share... Death is Nothing at All
Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.
Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.
Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?
I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.
All is well.
by, Henry Scott Holland
I'm sure Vicky is getting ready for her dinner party and everyone is there to greet her. They will share stories and talk sharing inspiration and joy. Then it will be off to see the room God has prepared for her in his house.
After starting the care of Hospice I quickly settled into their routine and structure. My nurse whose name is Angel is just that-warm, sweet, and kind, but smart too. We've gotten along well. I was able to start on a lot of the same meds I had been taking but they bumped up my pain meds right away.
What I've noticed over the past few weeks is that as soon as a complaint is rendered by me, its quickly addressed by them. Meds are taken away, added or exchanged. My pain has steadily been increasing and we have been adjusting accordingly. It's been tough because of how much it changes from day to day. I may be feeling fine one day and see people and then next day I'm filled with pain and unable to do much at all. I am supported in all my daily needs by those around me. I feel myself getting weaker as the days go on.
It is tough to answer questions on how I am doing as it changes moment to moment. At one point we thought it would be hours or days until I passed. This week I had a boost after my brother Lee came to visit. Currently I feel the pain is increasing and I am more uncomfortable. We are still sharing our moments together with family and friends. The time will be whatever God's plan is for me.
I feel that I have been very blessed and I am so grateful to everyone for all the prayers, support and love along this journey.
Dear friends, family and love ones. I've always wondered how do this post? How beautiful or thought provoking I might be able to make it. But what about if you wait until it seems you might not be able to get it done? Now that doesn't sound like much, but please understand its what I have. I'm continuing to find the extraordinary is right here in the ordinary and I hope you'll take the time to find it as well.
On Tuesday after much reflection, thought, devotion and wonderful talks, Rick and I along with the boys determined Hospice was the best type of care for me. Hospice is "end of life," care. I will no longer go into the Sanford hospital, do chemo or radiation, see anyone at Sanford Infusion Center to have treatment of any kind. Its daunting to make this big change, but the help of our pastors from the church, I feel more and more at ease with this decision! This the right thing to do for now.
So we've done our best to reach out to many of you but not all of you know yet and we thank you for staying with us all this time in support, peace and love, plus hope and prayer.
Thank you one and all for the beautiful words you've shared with with me. How you've shared your lives so much with me. I will miss you more than I could put into words and so I won't try. I love you- to the moon and back!
All shall be well
Just a quick note: communication is difficult for me, your words uplift me, I will see them but my communication will come through Rick as we move forward in the journey.
My house has been adorned with beautiful flowers and a huge basket of fruit on the other side of it that arrived from Spokane, WA.
Jim brought me peonies that grow along the side of my mother's house and are so fragrant and beautiful.
I somehow knew that past Saturday the 2nd, without ever really knowing. It just lingered in the air, and hung against my skin and caught in my throat. Something wasn't right. And too many of those "some things" were adding up into "you must do something about your somethings." By 8 pm I was headed into the emergency room. My stomach made me look and feel about 3-4 months pregnant and there was no relief. I couldn't get comfortable in any position. My pain meds weren't alleviating the pain radiating throughout my abdominal area. And I know I hadn't had a bowel movement in 4 days.
I needed help. The er doc thought likewise and put together a plan to scan me with a ct and no dye, then go from there. For hours I waited in the prep room waiting for my turn. I'm not even sure what the final time was, sometime around 4 am I was being ushered into my room on the 8th floor.
The scan revealed a lot of blocked up stool and what looked like a narrow opening to my colon. These two things were working against any movement of bowel in my system and needed to be resolved. So Monday a list of arduous scans and tests began. From procedures with my colon, to scans, and several enemas, I was continuously being taken down for another procedure. I have to say they were some of the most pain filled days I've had in awhile. I requested my breakthrough pain drug non-stop it seems. A lot of tears were shed. But the team of doctors was empathetic and continuously trying to help.
We finally got a distinct view of the narrowing of the one tube leading to the colon. All I know is the diameter was down to the size of a straw. So for me, it was like trying to push stool through a straw! No wonder I was in so much pain. I needed another stent for my bowel area. Within hours of them telling me, I was whisked away for the very procedure I needed. But unlike bladder stents, I felt so much of it, and it was extremely uncomfortable.
But it seems to have worked a little anyways. I will go in on Tuesday the 12th to see Dr. Panwalkar to determine how its working. Then we'll decide if I can proceed with chemo on this body that is still in recovery mode.
My head is still spinning from the rollercoaster I've been hanging onto for dear life. I couldn't even get a coherent note out to all of you. The news changed minute to minute at times- it was just crazy.
I went 5 days with no food or water. Then suddenly not only was I allowed to drink and take a few bites of food on Wednesday- I was given the green light to go home! I couldn't believe it. I was pretty weak and would be relying on Rick for help with dressing and getting ready for the day, but we managed somehow. Im slowly learning how to make food I can eat, and figure out all the new medications I have. I have a couple that are pretty uncomfortable and do not like the effect they have on me, but its for my good and so I'm mustering up the energy to try and tackle them. I don't have much in the way of choices left. My main desire is to truly just feel comfortable again.
I have no idea what kind of appointment we will have tomorrow or what we will discuss. But when I can muster the energy again to sit and put it all into words, I'll be here to share with all of you.
The stunning view out my 8th floor window from the hospital.
I also had the extreme honor of being a part of this beautiful story, right before we headed into all of the medical issues. I'm trying to post it, and I'm sorry if my efforts are in vain. It ran on May 29th on WDAY. com under the title "woman fighting seven years receives big surprise." Try using the link below for the story.
I can't thank Angie enough for spearheading this whole vigil that took place at my house. My pastor and our worship band came, there were prayers, and tears, and singing, and worshipping and community and overflowing hearts of love and joy. Its the best possible way to tie this all up because it goes to show that despite everything- joy shows up. Always. Blessings flow. Joy is contagious. and there were way more hugs and love than grief and sorrow. Dr. Panwalkar even showed up- and that was just the icing on the cake. Thank you Angie- your giving and generosity know no bounds!
When I stepped into the exam room to see Dr. Panwalkar, I had no idea just how much everything was about to turn upside down. Just two days prior I made it out to not just one, but two graduation parties. The photo was taken by my cousin's house and yes, I was feeling pretty good. I had used my oxygen for hours before I left the house and just felt pretty good to venture out. The parties were great and I got to see so many friends and lots of family.
So I was feeling ok about my appointment and it started off with tackling each of the things I've been dealing with. Dr. P had also figured some things out and prescribed all kinds of new things to help me. Then we finally got to my labs and I mentioned how my kidneys were still so "mad at me." When he saw the numbers on the screen for the first time, he quickly changed his demeanor.
"Oh thats bad, really bad. Lets get on this right now. He sat and thought a bit and then said. "I think you need another stent placed. One on the left side that works like it does on the right side." I'll call Dr. Williams and we'll get going right away."
So as he typed away on the computer, I sought some clarification as I was not sure I was reading all of this right. So I took a big breath and asked, " am I nearing kidney failure?" and he stopped typing and turned to me and said, "yes. I'm sorry to say you are and I can't tell you why or where its coming from. Its very bad." As we got up to go, he asked if there was anything else he could do for me.. and I thought of the only thing that it seem I needed- Could I have hug from you?" I asked. He looked so surprised and broke into a smile. "Sure! we can do that!" And boy did he give me the closest, longest, meaningful hug I've had in a long time. I tried to express my gratitude towards all he does for me as I didn't want him to carry the weight of feeling like he had somehow let me down. The tension in the room deflated and I felt I'd go on despite how serious every thing was.
So... it shouldn't have surprised me as much as it did, but not only was I going to get not 1 but 2 units of blood transfused that day, I soon found out I was being prepped for surgery the very next day! Dr. Williams knew how bad my kidney lab results were and that surgery was a Hail Mary to try and rectify the damaged kidneys. So he agreed to squeeze me in the next day. I still had chemo, then was squeezed into a blood transfusion, then hurried home later that evening to prepare for surgery the next day! Whew. I was overwhelmed with a flood of emotions.
But the craziest part is how much energy and life was restored to me through those 2 blood transfusions. Holy cow! Not only was I able to move without oxygen, I had desire and drive to do so much. My house is very cluttered due to Rick having his busy season in work. I've been slowly sorting an cleaning all over, just one day after surgery. It feels so good to be here typing away, So I hope it helps you for the next part I have to share. I'm just being honest and hopefully putting us all on the same page.
I arrived at the new Sanford Hospital for surgery around 8 am in the morning. Because I was being squeezed in I spent a lot of time resting in my prep room with Rick. Dr. Williams peeked his head in the door and then came in. He is so warm and personable. He looked tan, and refreshed and it was so good to see. He sat down and took off his surgical hat. Then he shook his head as he started to speak. "Your numbers are awful. I'm preparing myself for what I may see when I go in. But you do seem to have a little infection. I should be able to assess what I can see. I'll just deal with it once I go in. But I have to tell you, I don't think a stent is the answer. I'm sorry to say, I think the damage is likely chemo related or some other treatment maybe, I don't know. But lets give this a try and see. He smiled when he went he went off and I thanked him as he hurried out the door. It was the last I saw him that day, but he did meet with Rick.
Dr. Williams showed how sad he was when he talked to Rick as I was wheeled into recovery. Rick said he was teary eyed and told him "it looked terrible inside. So many tumors had grown everywhere and he could only shake his head. He even said it was now growing in my bladder and there really isn't anything they can do for it. He also said my kidneys are in very rough shape. Really bad shape. And yes, its common to not have many outward signs that anything is happening. So all he could do was put me back in the hands of Dr. Panwalkar and see what he wants to do. Rick says he always says the nicest things about me. He expressed again how this shouldn't be happening and its not fair when these hard things happen to good people. His compassion is so real and authentic and helps us feel supported all the way through.
So I'm home again. Feeling physically better than I have in awhile. So I"m bury myself right now in cleaning, and sorting and organizing. And a huge stack of cards arrived cheering me up so- thank you, thank you! I have a hard time keeping up with my gratitude and thank yous for all you have done for me and for Rick and the boys too. I could not do this alone.
I still have hope. No wonder it picked me for this year's word. I need huge hope right now. Will you hope along with me? We can do this together! No matter what it is we have to do, together is the only way.
I woke up to hear Rick's voice whisper to me "Happy Mother's Day." I smiled as he sauntered off to make coffee. But then I went to sit up and my stomach lurched. The nausea washes over me in a deep surge. I begin to cough, and cough. "Oh no, I think, here it comes!" I then begin to heave and gag. Vomit looms as I clutch at the side of the chair shifting my position. Its a good 10 minutes before it unceremoniously subsides. I'm sweaty and my heart is beating fast. But I didn't vomit this time. I let my stomach settle and am about to get up to go to the kitchen when the movement once again sets off another attack. Here we go again. And yet, just another few minutes and I'm able to sit and sip at my coffee as if nothing has happened. This time I got off lucky. Earlier this week, I had 3 hours of repeated vomiting and heaving and I was unable to do anything else that day, even when the grips of it all left me spent. But we managed a few hours of watching as Rick planted flowers outside in my flower beds, and bought a vase full of fresh cut flowers for my to enjoy inside. My family was in and around me throughout a busy day, and I loved how they met me right where I was.
But when I highlight these types of yucky events for Dr. Panwalkar? Theres nothing he can offer me. Compassion and concern line his face, but his words are sparse. "You're in unchartered territory. I don't know what we can do for you." His words referring to my PET scan was that it was overall "much worse." I had many new areas of progression throughout my system. The part that likely has to do with the vomiting or vaso vagal spells, is a tumor or mass that is by my colon/bowels that is triggered when my bowels move. It puts me in a precarious situation most of the time. How do you go anywhere when these symptoms crop up announced? And they're so unpleasant to have and for anyone to witness. Rick is such a trooper, offering Kleenex or water, meds, or Nausene to see me through. But these spells won't likely go away on their own. They loom in front of me all day long.
Dr. P simply says we will switch my treatment to to the immunotherapy drug called Keytruda. I mistakenly thought it was oral, but its infused. I had my first infusion two weeks ago and it went well. I simply don't feel well, despite the new treatment, not because of it likely.
So how do you plan your day? I hover between my chair and the bathroom mostly. I'm just hanging in there, trying to string together a few hours that I feel ok. But its a struggle. I've had to cancel many visits at the last minute, as my stomach sits churning. I will see Dr. P again in a week and will report the worsening effects but not sure there will be much we can do if I want to continue on with treatment. Its a hard place to be. And its why I'm so quiet in this space. I still long to know that somehow I have something to offer in this time I've been given. The boys seek me out daily and I love all the time we spend chatting away. They're affected by all of this, and yet resilient at the same time. I love them so.
As a couple of days pass, the nausea bouts are still prevalent but I get through them more quickly it seems. But now its my shortness of breath concerning us all. I'm quite swollen in my legs and feet and my arm on the right side. Maybe its affecting my lung as well? Despite using Oxygen supplementation during my waking hours, I still get so short of breath all of a sudden. I will find out more when I see Dr. Panwalkar on Tuesday. But that is as far out as I can look right now.
I'm grateful for the overwhelming abundance that has found a way through our door. Whether its a card, or the gift of scripture cards, or food, or a short visit- it all adds up beyond measure. It's hard to make "plans" for anything. And I have my days of not being fully dressed and made presentable, as my house sits in varying degrees of disorderliness. But we open our doors when we're able and pray others can avert their eyes from the mess, and just see me. I'm still in this shell of myself peering out through those swollen and hollow looking eyes. But, I'm still here. And I'm eternally grateful for all who so tirelessly work to meet me in this space- often so new for both of us.
I have sat down so often, writing a little bit of an update, but it never feels quite finished so I wait. And begin again another day. But no two days are alike anymore. I'm in a continuous cycle of dealing with new physical challenges each day it seems, and I just don't ever seem to go back to "normal." Its a "new normal" everyday. But here goes just a little of what it's been like.
I last saw Dr. Panwalkar on a Tuesday in late March. He teased me as he fired up the computer saying "3 whole weeks have gone by and I haven't heard you ring my phone once! How can that be?"
It sets a pleasant tone instantly and I banter a response right back. Our whole visit is a series of questions and answers and I try to affirm each time that really I'm doing ok. Until he asks about shortness of breath. And between Rick and I we paint the picture, without realizing the ball we've set in motion.
I just can't always get very far walking, without running out of breath. And I certainly can't clean, or dress, or do normal activities for any length of time without also struggling for air.
Dr. Panwalkar assures me we will get to the bottom of it with some help from the Pulmonary department. While a simple xray doesn't show any big differences from the last one, Dr. P still wants me to have testing done. As he walks me out to infusion that day, I happen to remember and whisper to him, "I just passed my seven year anniversary since diagnosis on the 16th, thanks to you." He smiles big and wraps an arm around me as he ushers me into a seat carefully. He whispers right back... " and we'll just keep hoping for more..." His voice trails off as he turns to leave. I sit, flooded with warmth and hope.
After chemo, I get a wheelchair ride over to the Pulmonary Clinic and proceed to get hooked up to a device that will track my airflow as I simply walk up and down the halls. I take off walking and seem to do just fine, but after several trips of walking in a circular fashion, I'm short on breath and cue the technician its time I sit down. She grabs a nasal canula and oxygen streams into my lungs through my nose. I sit breathing deep as she announces that my oxygen saturation has suddenly plunged to the mid-80's. My eyes search her face for an answer to what this means. Oh, you failed the test, she says. But that qualifies you for oxygen therapy.
Just. Like. That. And I'm home, on oxygen therapy. Its a long appointment with a respiratory therapist at our house. He first goes over the concentrator that will sit in the living room area with ample hose attached to a nasal cannula for me to wear. Then he goes over the unit I can wear across my body. Except, I instantly discover its quite heavy for me and cumbersome to wear. It exacerbates the pain on my left side, no matter how I situate the unit. It'll take some maneuvering on my part to be able to wear it out.
Over the course of the last couple of weeks, having oxygen therapy has taken some time getting used to. I don't need it around the the clock. I don't need it if I'm just up and walking to and from one area of the house to the next. But as the day goes on and I need to perform some activity, I require more use of the O2. Its quite drying to the lining of my nose, despite the constant post-nasal drip I have as a side effect of my chemo. And I've had some headaches that may go with it. But otherwise its a pleasant feeling not to have to fight for air at times and the panic that can go with it when you don't feel like you'll recover your ability to breathe.
So just when I felt like I had the breathing part figured out, last week I couldn't shake a sense of light headedness. I had to go into Roger Maris for a booster shot and told them how I was feeling. The nurse could tell something wasn't right with my color or my blood pressure. Soon Lori was sent back to see me, and she went to run everything past Dr. P. They felt I was dehydrated and needed some iv fluids at the infusion center. I was lucky, a cancellation had just occurred and I got to go right in. After a good 1 liter bag was infused a couple of hours later, I was cleared to go home as long as I took it easy and rested. We just had to laugh that it seems lately its always something, but what will happen next?
It took me awhile to bounce all the way back. My counts may have been pretty low and had to restore themselves with help from the booster shots. In the meantime, I've also been dealing with some episodes of a vasovagal response. I don't actually pass out, I manage to stay conscious, but my stomach heaves for several intense minutes. I have intense nausea and it can end in vomiting repeatedly for awhile. I sweat profusely and shake and then after a good 10 minutes or so, it passes quickly and I recover. But when and where these episodes may occur, is unpredictable, and hard to manage. Add all of these things together and you can see why no two days are the same anymore.
So each day, I try to just succeed at a basic level. If I can dress, eat, get up and be with my family, etc., that is the aim of a good day for me. But sometimes, even those basic things can just be a tall order. Its the way things seem to go right now. And that is where all the wonderful things you send me, help more than I can say. I so often have to reach outside of myself, clinging to the bits and pieces of hope that are thrown my way. I love the Anne Lamott quote... "Because hope is medicine..." Its definitely something I've come to learn from my one word for 2018.
We finally got to see the airing of our story in Dream. State. Wow! They did such a great job of piecing together a wonderful story about our family. We have continually felt so blessed and honored to have been asked to be a part of this show. I tired embedded the show below and hope it works if you'd like to view it. Our part starts about 3 minutes in and runs for a few minutes! I'm so proud of the boys and how well they shared from their hearts about what they live on a daily basis. It was very fitting the show aired at the same time I passed my 7 year cancer survivorship milestone!
Thank you to everyone who has sent me notes inquiring about how I am doing. The outpouring of care and concern continues to bless us and humble us. Meals still show up at our door and nourish us both physically and emotionally. Plants, flowers, cards, letters- they bolster us so and we can't say enough thank you's for all that is done for us!