Sunday night, one of the things we dread & fear most happened.
Jay was changing our bed linens & I decided to get something from our closet across the room. I simply was not paying attention. It only took a moment-a split second to change the course of an entire night...week...who knows how long...
My right foot became entangled in the bedding on the floor & in an instant I was face down on the ground crying & writhing in some of the worst pain I’ve ever experienced. Immediately, Jay was on the ground next to me trying to assess the damages. All I could do was whisper “help us Jesus. Please help.” I couldn’t breathe & it took several minutes for jay to be able to roll me over to check the tumor situation. He noticed blood on my clothes & called our hospice to send someone out. After several more minutes Jay was able to get me into the bed & begin to see what tumor damage we were dealing with. He began unwrapping bandages & dressings & each layer was blood soaked. We truly feared the worst. The tumor, which measures approximately 8” across x 6” top to bottom. It sticks out of my abdome at least 6”, has surprisingly delicate tissues. As Jay removed the final dressing layer I heard him say “thank you God!” The bleeding had completely stopped. This has never happened before. With the amount of blood soaking the dressings, Jay truly thought he would be dealing with a fatal bleed. As Jay cleaned the tumor, the mantra on his lips was “thank you God!”
The nurse arrived as Jay was finishing the tumor cleaning. She assessed my vitals & damages. My back was bruised & swollen & I was still having a difficult time breathing. My ribs & area surrounding the tumor were very painful. My knee was bruised & swollen. Thankfully nothing appeared broken.
The adrenaline began to wear off & I began to shake uncontrollably. While the nurse went out to get ice packs, Jay put blankets in the dryer so I’d have warm blankets to combat the shivering & ice packs.
My back & knee are still very painful & not tolerating much in the form of bearing weight. Jay escorts me whenever I need to get up.
Today, we met with my nurse. For the past few weeks, we’ve been dealing with an increase in lymphedema fluid building up. We have increased the dose of diuretics, however, they haven’t proven helpful yet. My lower body is quite swollen with fluid & now the upper & lower lobes of my right lungs have fluid in them.
It’s been a very trying week, but the words on our lips continue to be “thank you God...thank you Jesus !” No matter how great the pain, we cannot ignore His hand of protection covering us.
I have always said that when my time come to fly away home, I want it to be a peaceful event. Thinking that it may end traumatically Sunday night really frightened me & Jay.
So, for now I’m only allowed out of bed with assistance & ice packs are my new bff’s. Clumsy & Cancer are a bad combination!
Blessings,
Mandy
Wednesday, December 6, 2017
Monday, November 27, 2017
Christmas Love
Lately & shamefully, I have been kvetching my limitations.
The edema-the build up of fluid - has returned. This means, I’m pretty much bed bound. I can walk/stand about 5 minutes before the pain & shortness of breath overtake me. The fluid is slightly building in my lower lungs, so any activity leaves me gasping for air.
In my 23 years of being married, this is the first time I haven’t decorated for Christmas. Christmas has always been a big deal in my home. Growing up, cutting down the tree & decorating was a fun family affair. Andy Williams, Perry Como, Bing Crosby & the like wafted from our stereo on a daily basis.
When I had my own home, my decorating grew exponentially each year, until finally, no corner of my home was safe.
Jay was the Christmas Sherpa- hauling boxes & totes in & out of the attic & garage for a solid week while I fluffed garlands, wrapped trees with lights, arranged & rearranged mantles & tables. Excessive? Probably. But I adored it.
Last year, I was a couple of months into hospice during the holidays. Carolyne was here & helped me decorate. This year I was lamenting not being able to do any decorating much less my usual level.
My Jay, however, had other plans. On Friday he decorated the large storage building that is in my view when I look out my window. He then put up & decorated a beautiful tree for the bedroom & even hung the stockings. It’s perfect!
Not many men would recognize their wife’s love of Christmas & spend the time to make her smile/happy cry. That’s the kind of man I married. He figures out what will make me smile & focuses his attention on that. The fact that he worked all week, pulled Thanksgiving together & really just wants to veg out in front of a game doesn’t matter. This will make his bride happy so this needs to be done.
Sacrificial love. We are all called to practice it, yet few actually can or do. While the world teaches us to look out for #1, Jesus teaches us to have a servants heart & think of others more highly than you do of yourself. This is what Jesus calls us all to do- Love God & Love People.
Sacrificial Love- may we all have the opportunity to serve someone in this way this week.
Blessings,
Mandy
The edema-the build up of fluid - has returned. This means, I’m pretty much bed bound. I can walk/stand about 5 minutes before the pain & shortness of breath overtake me. The fluid is slightly building in my lower lungs, so any activity leaves me gasping for air.
In my 23 years of being married, this is the first time I haven’t decorated for Christmas. Christmas has always been a big deal in my home. Growing up, cutting down the tree & decorating was a fun family affair. Andy Williams, Perry Como, Bing Crosby & the like wafted from our stereo on a daily basis.
When I had my own home, my decorating grew exponentially each year, until finally, no corner of my home was safe.
Jay was the Christmas Sherpa- hauling boxes & totes in & out of the attic & garage for a solid week while I fluffed garlands, wrapped trees with lights, arranged & rearranged mantles & tables. Excessive? Probably. But I adored it.
Last year, I was a couple of months into hospice during the holidays. Carolyne was here & helped me decorate. This year I was lamenting not being able to do any decorating much less my usual level.
My Jay, however, had other plans. On Friday he decorated the large storage building that is in my view when I look out my window. He then put up & decorated a beautiful tree for the bedroom & even hung the stockings. It’s perfect!
Not many men would recognize their wife’s love of Christmas & spend the time to make her smile/happy cry. That’s the kind of man I married. He figures out what will make me smile & focuses his attention on that. The fact that he worked all week, pulled Thanksgiving together & really just wants to veg out in front of a game doesn’t matter. This will make his bride happy so this needs to be done.
Sacrificial love. We are all called to practice it, yet few actually can or do. While the world teaches us to look out for #1, Jesus teaches us to have a servants heart & think of others more highly than you do of yourself. This is what Jesus calls us all to do- Love God & Love People.
Sacrificial Love- may we all have the opportunity to serve someone in this way this week.
Blessings,
Mandy
Saturday, October 21, 2017
Humility 101
Humility 101
Professor - Amanda Smith, PHD (Permanently Humble Disciple)
Student - Jay Smith
It's been a busy time for me lately. I have been working 60+ hours a week, caregiving for Mandy and basically cooking and trying to keep the house in order. I have been slightly lax in that last item, so today I planned to clean the house. Vacuum, mop, dust, bathroom (yuck!) and laundry.
Now, if any of you know Mandy very well, she is OCD when it comes to cleaning her house, and she always kept it clean. If any of you know me, I am the typical "guy" who can walk by dirt for a week and never even notice it. So, when this morning came around, I got up, made Mandy some coffee and a breakfast sandwich for both us. We ate together in the bedroom, then when finished, I got up and complained about having to start cleaning the house.
Need a tree cut down and cleaned up in your yard, I'm your man. Need leaves or needles raked, driveway shoveled (or snowblown) I'm the guy for you. If it involves power tools and makes lots of noise, I am all over it. But, when it comes to cleaning, I have a hard time doing a "deep clean" like Mandy does. I mean, do I really need to move EVERY tchotchke when dusting! There must be over a hundred in our house.
Anyhow, when I sighed and announce that I was going to start cleaning the house, class began. Mandy said that she would give anything to clean today. She said "I miss cleaning." At first I thought she was joking, but I could see it in her eyes, she would rather be cleaning our house than being stuck in a hospital bed in our room. Wow, I felt about 2 inches tall as I started vacuuming the floor. It only took about 2 hours to get everything finished, some of her OCD has rubbed off in the last 23 years folks, so the house wasn't a complete pigsty, c'mon people, I am not an animal!
Then, as I finished cleaning, I took a load of laundry out of the dryer and put it on Mandy's bed and she started folding it for me. The girl actually THANKED me for letting her help. That's like 400 level Humility (for all you college people) and I wanted to tell the professor her teaching material was over my head.
So today, I moved every figurine when I dusted, I scrubbed extra hard when I mopped the floor and I even took my time when cleaning the toilets making sure that I made my professor proud. When all was said and done and I announced that I was finished, the professor took a deep breath and with a smile said "I love the smell of a clean house!" Well, I love when the my professor smiles, so the lesson was heard and I was a better student for it.
Sometimes I forget what it must be like to NOT be able to do the simplest things in life like cleaning your house, but today, that lesson was brought back to my attention and I am blessed to have a humble teacher to remind me of these little things. She has had to give up doing the things she loves and relies on others to help her. There are times when I know she feels guilty that I have to "take care" of her after I have worked all day, but I keep telling her that the time will come when I will wish that I could just take care of her for one more day.
"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time." 1 Peter 5:6.
Jay
Professor - Amanda Smith, PHD (Permanently Humble Disciple)
Student - Jay Smith
It's been a busy time for me lately. I have been working 60+ hours a week, caregiving for Mandy and basically cooking and trying to keep the house in order. I have been slightly lax in that last item, so today I planned to clean the house. Vacuum, mop, dust, bathroom (yuck!) and laundry.
Now, if any of you know Mandy very well, she is OCD when it comes to cleaning her house, and she always kept it clean. If any of you know me, I am the typical "guy" who can walk by dirt for a week and never even notice it. So, when this morning came around, I got up, made Mandy some coffee and a breakfast sandwich for both us. We ate together in the bedroom, then when finished, I got up and complained about having to start cleaning the house.
Need a tree cut down and cleaned up in your yard, I'm your man. Need leaves or needles raked, driveway shoveled (or snowblown) I'm the guy for you. If it involves power tools and makes lots of noise, I am all over it. But, when it comes to cleaning, I have a hard time doing a "deep clean" like Mandy does. I mean, do I really need to move EVERY tchotchke when dusting! There must be over a hundred in our house.
Anyhow, when I sighed and announce that I was going to start cleaning the house, class began. Mandy said that she would give anything to clean today. She said "I miss cleaning." At first I thought she was joking, but I could see it in her eyes, she would rather be cleaning our house than being stuck in a hospital bed in our room. Wow, I felt about 2 inches tall as I started vacuuming the floor. It only took about 2 hours to get everything finished, some of her OCD has rubbed off in the last 23 years folks, so the house wasn't a complete pigsty, c'mon people, I am not an animal!
Then, as I finished cleaning, I took a load of laundry out of the dryer and put it on Mandy's bed and she started folding it for me. The girl actually THANKED me for letting her help. That's like 400 level Humility (for all you college people) and I wanted to tell the professor her teaching material was over my head.
So today, I moved every figurine when I dusted, I scrubbed extra hard when I mopped the floor and I even took my time when cleaning the toilets making sure that I made my professor proud. When all was said and done and I announced that I was finished, the professor took a deep breath and with a smile said "I love the smell of a clean house!" Well, I love when the my professor smiles, so the lesson was heard and I was a better student for it.
Sometimes I forget what it must be like to NOT be able to do the simplest things in life like cleaning your house, but today, that lesson was brought back to my attention and I am blessed to have a humble teacher to remind me of these little things. She has had to give up doing the things she loves and relies on others to help her. There are times when I know she feels guilty that I have to "take care" of her after I have worked all day, but I keep telling her that the time will come when I will wish that I could just take care of her for one more day.
"Humble yourselves, therefore, under God's mighty hand, that He may lift you up in due time." 1 Peter 5:6.
Jay
Saturday, September 23, 2017
Living Well Within Four Walls
I have been on a very long blogging sabbatical, and well - I've missed y'all!
For the past couple of months, I've dealt with severe anemia and excessive lymph fluid build up. The anemia has resolved on its own very well. The lymph fluid took some finesse. My doctor placed me on a diuretic and in the past month I have lost 70 pounds of fluid. That is not a typo...70 pounds! I was miserable and didn't quite realize how much so until the fluid began leaving. My body was so swollen that I could barely move. Each movement was painful and all I could do was sleep. My body was exhausted. I continue taking the diuretic to avoid the fluid returning. My lymph system is totally broken, and without the meds, the fluid would quickly build back up.
It has officially been one year since I was admitted to hospice. It's been an incredible year, filled with so many ups and downs; love and laughter; tears and doubts, fears and testing of faith. We don't know why or how I have made it through this year. My hospice team has said more than once that they are amazed at what my body has been willing to endure.
My energy level remains low. For the most part, I'm confined to bed. Occasionally, under Jay's watchful eyes, I can walk to the living room and sit in the recliner for a few hours. It's a nice distraction and break from the four walls of the bedroom.
My cancer continues to progress - especially the exposed tumor. This tumor seems to grow before our very eyes. It has become very heavy and is placing pressure on numerous areas - especially my sternum and the base of my esophagus. The tumors in my ribs, on my liver and throughout my abdomen continue to grow and cause a great deal of pain. My hospice team is working very hard to place all the puzzle pieces together and manage the pain. It is a daily battle, but they are patient, kind and determined to make me comfortable.
Jay and I often talk about the "why" behind my long time on hospice care. We've discussed it at length with our hospice counselor and pastor as well. There are a few theories.
* My body has been in "fight mode" for so many years that it doesn't know what else to do.
* God still has plans for me. What they are - we have no idea.
* God has given me a gift of staying with my loves much longer than anticipated.
I don't think we will receive answers this side of eternity. I'm sure that God will reveal the big picture in His own time and in His own way.
For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts. Isaiah 55:9
Lately, I've been thinking about what it means to live well within four walls. I have had a lot of time to think, pray, read and study. This, in itself, has been a gift. Jay and I have had some raw and real conversations about what it is like to be a patient and dying as well as what life is like as a care giver. Both roles are often exhausting and lonely. We have each had many years in these roles, however, this is a completely new and unfamiliar season for us. We have talked about what life may look like for him when I'm gone - life choices he will eventually have to make. I'm so thankful that we can openly discuss these things, hard as they may be.
This season has definitely tested everything we know and are. We have had moments of faith shaken and moments of faith restored. We continue to cling to the hem of His robe and search every day for peace. Some days we really have to search, but it is always there.
For the past couple of months, I've dealt with severe anemia and excessive lymph fluid build up. The anemia has resolved on its own very well. The lymph fluid took some finesse. My doctor placed me on a diuretic and in the past month I have lost 70 pounds of fluid. That is not a typo...70 pounds! I was miserable and didn't quite realize how much so until the fluid began leaving. My body was so swollen that I could barely move. Each movement was painful and all I could do was sleep. My body was exhausted. I continue taking the diuretic to avoid the fluid returning. My lymph system is totally broken, and without the meds, the fluid would quickly build back up.
It has officially been one year since I was admitted to hospice. It's been an incredible year, filled with so many ups and downs; love and laughter; tears and doubts, fears and testing of faith. We don't know why or how I have made it through this year. My hospice team has said more than once that they are amazed at what my body has been willing to endure.
My energy level remains low. For the most part, I'm confined to bed. Occasionally, under Jay's watchful eyes, I can walk to the living room and sit in the recliner for a few hours. It's a nice distraction and break from the four walls of the bedroom.
My cancer continues to progress - especially the exposed tumor. This tumor seems to grow before our very eyes. It has become very heavy and is placing pressure on numerous areas - especially my sternum and the base of my esophagus. The tumors in my ribs, on my liver and throughout my abdomen continue to grow and cause a great deal of pain. My hospice team is working very hard to place all the puzzle pieces together and manage the pain. It is a daily battle, but they are patient, kind and determined to make me comfortable.
Jay and I often talk about the "why" behind my long time on hospice care. We've discussed it at length with our hospice counselor and pastor as well. There are a few theories.
* My body has been in "fight mode" for so many years that it doesn't know what else to do.
* God still has plans for me. What they are - we have no idea.
* God has given me a gift of staying with my loves much longer than anticipated.
I don't think we will receive answers this side of eternity. I'm sure that God will reveal the big picture in His own time and in His own way.
For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts. Isaiah 55:9
Lately, I've been thinking about what it means to live well within four walls. I have had a lot of time to think, pray, read and study. This, in itself, has been a gift. Jay and I have had some raw and real conversations about what it is like to be a patient and dying as well as what life is like as a care giver. Both roles are often exhausting and lonely. We have each had many years in these roles, however, this is a completely new and unfamiliar season for us. We have talked about what life may look like for him when I'm gone - life choices he will eventually have to make. I'm so thankful that we can openly discuss these things, hard as they may be.
This season has definitely tested everything we know and are. We have had moments of faith shaken and moments of faith restored. We continue to cling to the hem of His robe and search every day for peace. Some days we really have to search, but it is always there.
Wednesday, June 21, 2017
"bleeder!"
Note: Some contents not suitable for the faint of heart when it comes to blood.
Saturday, June 17th, 2017 was a rough day. It started out like our usual days lately with Mandy resting in bed until about 11:30 or 12:00. I wake her up to take her medicine and make her a fried egg sandwich to start her day. She comes out to the living room and hangs out and watches some t.v. Her dad and step-mom were here, so she was trying to stay awake longer to be able to visit with them. By 2:30 or 3:00 she will normally take a nap until 5:00, and on this particular day we grilled hamburgers and made tater tots, so she was up and able to enjoy dinner. After dinner, Mandy was ready for bed, so she went to bathroom to get ready and next thing I knew she was calling me to help her with a "bleeder."
Let's take a step back in time for a moment. Almost two years ago, the tumor in Mandy's abdomen had grown enough to show up as a golf ball size lump in her abdomen. The doctors at CTCA suggested radiation to see if it would shrink the tumor since chemo was no longer working. We were waiting for the radiologist when the nurse came in and was talking to Mandy about her tumor and said that if the tumor kept growing, it could actually break through the skin. Mandy's eyes got big and she made up her mind right then and there that she would zap that sucker to keep it from doing that! The radiation did not shrink the tumor, but may have "slowed" the growth for awhile, however, about a year after the radiation, the tumor made its debut to the outside world. Ta-da! At first, it was just a small hole, but the hole kept getting larger. Once it reached the size of about a dime, we experienced our first "bleeder." Mandy was in the shower and started yelling for me, as I came in, all I saw was blood everywhere. All over her, all over the shower, it was a scene right out of Psycho! I got a towel over her tumor to control the bleeding and got her dressed and we raced to the ER. I just knew she was going to bleed to death before I could get her there. Once there, it continued to bleed a small stream of blood all through triage. The nurses worked fast and got us back to a room quickly. The doctor came in reading her chart with a puzzled look on his face. Typical doctor, he had never experienced this, so he was excited to take a look. Unfortunately for him, but fortunate for Mandy, the bleeding had finally stopped. It had lasted for over an hour at that point and I was figuring they would need to do a blood transfusion. The ER doc chuckled and said that she didn't really lose that much blood. He said comparatively speaking, this is nothing to what he has seen when it comes to blood loss in the ER. Well, to a Forester, it was a major loss of blood! Little did I know what was to come.
These bleeding episodes continued about every week for several weeks and as with most things cancer related, Mandy and I grew accustomed to it and learned how to handle them on our own for the most part, but still had to go to the ER a few more times when we couldn't get the bleeding to stop on our own. The last time we went, the bleeding lasted 2 hours. It looked like a pin hole in a balloon full of water, except it was a vein in a tumor, full of blood.
Mandy decided to try radiation again last July and August to see if it would help with these "bleeders," and it did. After radiation, Mandy decided to go onto Hospice, and after a couple of months the tumor growth began again and we started to learn the term "fungating tumor." Without going into detail, a fungating tumor is a tumor that has broke through the skin and you actually get to see the tumor exposed. This brought on the "learning how to do wound care" part of being a caregiver so that it would not get infected. Not sure what this says about doctors and nurses, but every time one of them looked at the tumor, and they ALL wanted to look at it, they commented about how "good" it looked. Well, as the tumor continued to grow, veins would come to the surface and then retreat, but since the veins and the surrounding tissue is so fragile, they would sometimes break open and bleed. That's when the term "bleeder" became a regular part of our vocabulary. "Hey honey, we got a bleeder" or "got another bleeder" were words I dreaded to hear. It meant getting Mandy into bed to where I could put a cloth diaper (we discovered this wonderful tool on our own) on it until I could get it to stop bleeding. Then, I would clean the tumor and put a new dressing on it and wrap it up to secure it all. On a real fun night, we would get a bleeder, get it stopped, cleaned up and a new dressing, just to have it start bleeding again. At this point, we were getting so used to blood, that we didn't even blink an eye at it. We just went through the motions and took care of it. That is until Saturday night.
"We have a bleeder" was all I remember Mandy saying. When I walked into the bedroom, there was blood running all over her. She was getting into bed but the cloth diaper she had couldn't contain all the blood. I grabbed some more diapers and our basket of "tumor cleaning supplies" and started to do my normal routine. After we soaked through the first 5 diapers, I started to get a little worried. By diaper 15, I was out of diapers and really getting worried. The tumor had been bleeding for about 20 minutes now. I looked around and grabbed some Depends guards that we use to "pad" the tumor normally. I started putting them on the area of the tumor that was bleeding and watched them soak up blood rapidly. After about 7-8 pads getting soaked, I new I had to do something. Normally the "bleeder" slows down, loses pressure and clots itself, but not tonight. I grabbed some military grade blood stopper cloth, the kind they use on the battlefield to help stop soldiers with bullet wounds from bleeding out, I cut several pieces of it and started putting them at the spot where the blood was coming from. It immediately soaked through two pieces, so I took the top one off and put a third one on. After about 5 minutes, we lifted our last diaper and thanked God that the bleeding was finally slowing down. Another 5 minutes and the bleeding had stopped. An hour and fifteen minutes had gone by and this time I knew Mandy had lost a lot of blood. After about 30 minutes, we stood her up to try to get her blood soaked pajamas off and she almost passed out. We laid her back down, called the Hospice nurse and waited. Her blood pressure was 110/49 with a resting hear rate of 115. Her body was trying to compensate for the blood loss. The nurse estimated she lost at least a pint of blood if not a little more. I vote for the "a little more!"
Mandy was white as a ghost and started having more pain around the tumor following the "bleeder." Between the pain and the anxiety that goes along with it, she is taking a lot of morphine and Ativan. It is now 4 days later, and she has yet to leave the bedroom. I have to help her up to get to the bathroom (about 5' away from her bed) and it takes everything she has to get back into bed. When I wake her up to take her meds, she can hardly keep her eyes open and when she tries to ask me a question about my day, more often than not, she falls back asleep while I am answering her. Now, I know I'm not the most interesting man in the world, but it starts to give a guy a complex. Seriously, this one scared us both. Enough so, that we have discussed how another episode like this could be her last.
Why tell you all of this? Well, for one thing, Mandy wanted to keep everyone updated so that as you say your prayers on our behalf, you know specifically what to pray for. And secondly, I wanted to let people know that whatever situation you are in, God is faithful to get you through it. I told Mandy afterwards that I had to go into nurse/patient mode during all of that or I would not have been able to handle it. If I had looked at her as my beautiful wife, literally bleeding to death, I don't think I could have figured out a way to stop the bleeding. About 30 minutes afterwards, while I was waiting on the nurse to show up, the adrenaline started going away and I started shaking. I thanked God for getting me through this and for helping me find a way to stop the bleeding. I didn't pray to God while it was happening, I didn't call on His name, but I didn't have to. He was right there with me, keeping me calm and clear minded. It is a great comfort knowing that even when I am not focused on God, He is focused on me!
Please keep Mandy in your prayers. Jay.
Saturday, June 17th, 2017 was a rough day. It started out like our usual days lately with Mandy resting in bed until about 11:30 or 12:00. I wake her up to take her medicine and make her a fried egg sandwich to start her day. She comes out to the living room and hangs out and watches some t.v. Her dad and step-mom were here, so she was trying to stay awake longer to be able to visit with them. By 2:30 or 3:00 she will normally take a nap until 5:00, and on this particular day we grilled hamburgers and made tater tots, so she was up and able to enjoy dinner. After dinner, Mandy was ready for bed, so she went to bathroom to get ready and next thing I knew she was calling me to help her with a "bleeder."
Let's take a step back in time for a moment. Almost two years ago, the tumor in Mandy's abdomen had grown enough to show up as a golf ball size lump in her abdomen. The doctors at CTCA suggested radiation to see if it would shrink the tumor since chemo was no longer working. We were waiting for the radiologist when the nurse came in and was talking to Mandy about her tumor and said that if the tumor kept growing, it could actually break through the skin. Mandy's eyes got big and she made up her mind right then and there that she would zap that sucker to keep it from doing that! The radiation did not shrink the tumor, but may have "slowed" the growth for awhile, however, about a year after the radiation, the tumor made its debut to the outside world. Ta-da! At first, it was just a small hole, but the hole kept getting larger. Once it reached the size of about a dime, we experienced our first "bleeder." Mandy was in the shower and started yelling for me, as I came in, all I saw was blood everywhere. All over her, all over the shower, it was a scene right out of Psycho! I got a towel over her tumor to control the bleeding and got her dressed and we raced to the ER. I just knew she was going to bleed to death before I could get her there. Once there, it continued to bleed a small stream of blood all through triage. The nurses worked fast and got us back to a room quickly. The doctor came in reading her chart with a puzzled look on his face. Typical doctor, he had never experienced this, so he was excited to take a look. Unfortunately for him, but fortunate for Mandy, the bleeding had finally stopped. It had lasted for over an hour at that point and I was figuring they would need to do a blood transfusion. The ER doc chuckled and said that she didn't really lose that much blood. He said comparatively speaking, this is nothing to what he has seen when it comes to blood loss in the ER. Well, to a Forester, it was a major loss of blood! Little did I know what was to come.
These bleeding episodes continued about every week for several weeks and as with most things cancer related, Mandy and I grew accustomed to it and learned how to handle them on our own for the most part, but still had to go to the ER a few more times when we couldn't get the bleeding to stop on our own. The last time we went, the bleeding lasted 2 hours. It looked like a pin hole in a balloon full of water, except it was a vein in a tumor, full of blood.
Mandy decided to try radiation again last July and August to see if it would help with these "bleeders," and it did. After radiation, Mandy decided to go onto Hospice, and after a couple of months the tumor growth began again and we started to learn the term "fungating tumor." Without going into detail, a fungating tumor is a tumor that has broke through the skin and you actually get to see the tumor exposed. This brought on the "learning how to do wound care" part of being a caregiver so that it would not get infected. Not sure what this says about doctors and nurses, but every time one of them looked at the tumor, and they ALL wanted to look at it, they commented about how "good" it looked. Well, as the tumor continued to grow, veins would come to the surface and then retreat, but since the veins and the surrounding tissue is so fragile, they would sometimes break open and bleed. That's when the term "bleeder" became a regular part of our vocabulary. "Hey honey, we got a bleeder" or "got another bleeder" were words I dreaded to hear. It meant getting Mandy into bed to where I could put a cloth diaper (we discovered this wonderful tool on our own) on it until I could get it to stop bleeding. Then, I would clean the tumor and put a new dressing on it and wrap it up to secure it all. On a real fun night, we would get a bleeder, get it stopped, cleaned up and a new dressing, just to have it start bleeding again. At this point, we were getting so used to blood, that we didn't even blink an eye at it. We just went through the motions and took care of it. That is until Saturday night.
"We have a bleeder" was all I remember Mandy saying. When I walked into the bedroom, there was blood running all over her. She was getting into bed but the cloth diaper she had couldn't contain all the blood. I grabbed some more diapers and our basket of "tumor cleaning supplies" and started to do my normal routine. After we soaked through the first 5 diapers, I started to get a little worried. By diaper 15, I was out of diapers and really getting worried. The tumor had been bleeding for about 20 minutes now. I looked around and grabbed some Depends guards that we use to "pad" the tumor normally. I started putting them on the area of the tumor that was bleeding and watched them soak up blood rapidly. After about 7-8 pads getting soaked, I new I had to do something. Normally the "bleeder" slows down, loses pressure and clots itself, but not tonight. I grabbed some military grade blood stopper cloth, the kind they use on the battlefield to help stop soldiers with bullet wounds from bleeding out, I cut several pieces of it and started putting them at the spot where the blood was coming from. It immediately soaked through two pieces, so I took the top one off and put a third one on. After about 5 minutes, we lifted our last diaper and thanked God that the bleeding was finally slowing down. Another 5 minutes and the bleeding had stopped. An hour and fifteen minutes had gone by and this time I knew Mandy had lost a lot of blood. After about 30 minutes, we stood her up to try to get her blood soaked pajamas off and she almost passed out. We laid her back down, called the Hospice nurse and waited. Her blood pressure was 110/49 with a resting hear rate of 115. Her body was trying to compensate for the blood loss. The nurse estimated she lost at least a pint of blood if not a little more. I vote for the "a little more!"
Mandy was white as a ghost and started having more pain around the tumor following the "bleeder." Between the pain and the anxiety that goes along with it, she is taking a lot of morphine and Ativan. It is now 4 days later, and she has yet to leave the bedroom. I have to help her up to get to the bathroom (about 5' away from her bed) and it takes everything she has to get back into bed. When I wake her up to take her meds, she can hardly keep her eyes open and when she tries to ask me a question about my day, more often than not, she falls back asleep while I am answering her. Now, I know I'm not the most interesting man in the world, but it starts to give a guy a complex. Seriously, this one scared us both. Enough so, that we have discussed how another episode like this could be her last.
Why tell you all of this? Well, for one thing, Mandy wanted to keep everyone updated so that as you say your prayers on our behalf, you know specifically what to pray for. And secondly, I wanted to let people know that whatever situation you are in, God is faithful to get you through it. I told Mandy afterwards that I had to go into nurse/patient mode during all of that or I would not have been able to handle it. If I had looked at her as my beautiful wife, literally bleeding to death, I don't think I could have figured out a way to stop the bleeding. About 30 minutes afterwards, while I was waiting on the nurse to show up, the adrenaline started going away and I started shaking. I thanked God for getting me through this and for helping me find a way to stop the bleeding. I didn't pray to God while it was happening, I didn't call on His name, but I didn't have to. He was right there with me, keeping me calm and clear minded. It is a great comfort knowing that even when I am not focused on God, He is focused on me!
Please keep Mandy in your prayers. Jay.
Sunday, June 4, 2017
Conversations.......
It's been awhile since we posted anything and we wanted to give a quick update and to share some of our conversations.
Mandy's cancer has continued to show progression and is causing her to sleep as much as 18 hours in a day. We have had several visitors the last few weeks and Mandy has enjoyed the visits and feels bad that she has to sleep so much. Her tumor is still growing and pushing upward into her diaphragm causing her to get short of breath anytime she has to get out of bed or out of her chair. Her tumor was bleeding a lot causing her to become anemic which caused a lot of concern from our nurse. However, the last couple of weeks, the tumor has stopped bleeding heavily which has allowed Mandy to get her iron levels back up and to feel a little better.
Over the last 20 years of fighting cancer, Mandy and I have had countless conversations about life and more recently about death, and we would like to share some of them with you, so here goes.....
Miracles - Early on this was a regular topic of conversation, between Mandy and I and the countless number of people praying for her. Funny word "miracle", does it refer to someone being completely healed from a disease, or does someone surviving 4 times the expected lifespan after diagnosis count? Our conversation lately has revolved around the idea of being healed completely and what that would be like. On the one hand, Mandy and I could continue our love story and experience more things together. But in Mandy's words, "I'm not sure if I would want to have to experience this "dying" thing again." We discussed how both of us have focused less on a miracle and more on Mandy's hope of heaven and having no more pain, and more importantly, being in the presence of the Almighty. Have we given up on God? On the contrary, we are putting our complete trust in His promise. I do not want to experience my wife's death, but seeing her suffer in pain and struggle to even get out of bed, I find comfort in the promise of heaven.
Speaking of Heaven - We talk a lot about heaven! What will it will be like, will Mandy get her own baby sloth when she gets there? Looking forward to seeing loved ones that are there, and all those people that she will meet for the first time. What will it look like? How wonderful it will be to no longer have any pain whatsoever!!!!!! There are more questions than answers, but the hope of heaven is enough.
Wanting to stay, wanting to go - Mandy has a strong will to live, maybe the understatement of the year! Even in her pain and struggle, I can see it in her eyes. I would have given up a long time ago, but she keeps fighting. But, within that fight, I see a longing for it all to end. For the peace that comes with heaven. She struggles with leaving me alone, with her parents having to deal with losing a child, with not being able to see season 11 of the Big Bang Theory! I struggle with this also. I want to grow old together. I think about all the things I will miss about her being here and all the laughs we could have. Then I watch her face grimace as her tumor shoots pain throughout her body. I see her struggle to walk due to the lymphedema and how she gasps for breathe just from walking fifteen feet and I think how selfish it is for me to want her to be here longer. She will be in a much better place once she leaves this world, and I will find peace in that.
Death/Dying - Wow, I never thought I would spend as much time talking about this at our age, but here we are and we talk about it a lot. What will dying be like? We have read several hospice books trying to learn what dying will be like, but only determined that each person dies in their own special way. I have concluded that I can either accept it and be there to help Mandy or I can deny it and miss out in the last moments I will get with her this side of heaven. I choose to be there for her! Mandy has said on numerous occasions that "dying is hard work!" For the last 6 months, we have been given several timelines for her life expectancy, from 3-4 months to 1-2 weeks to even "just a few days" at one point. It was explained that her health would most likely stay at a certain level and then go down quickly. Well, Mandy has done just the opposite. She has had to endure a slowly growing tumor, fluid build-up in her legs and abdomen, the struggle with breathing and having to give up doing just the smallest of tasks. She spends most of her time sleeping and wonders at times "what am I even doing here?"
Life after Mandy - This is one of the tougher conversations for me. Mandy has made me promise not to become a hermit. I have to keep interacting with people, and not just the people behind the counter at Jimmy Johns! I can't sit around all day watching sports and eating wings in the dark, she said. We have two fur babies that have to be taken care of after all. I have told her that one of my concerns is that I will become a workaholic to keep my mind busy. Frankly, I'm not sure how I will react or how I will "handle" myself, but I do know it will be difficult and that I will miss her so much. Beyond that, I have let Mandy know that I will be OK, I will think of her often and probably cry every time I see a bluebird. I see a lot of hiking in my future, I can be in my happy place and do something that Mandy and I loved to do together, explore new places.
Appreciation - I told Mandy the other day that I didn't appreciate her enough in all the things she did for me throughout our marriage. She worked a full-time job, planned and cooked almost all our meals, cleaned the house and basically took care of me. Now it's my turn to do the same for her and I have realized how hard it is! It is a privilege to take care of Mandy and even though there are times when I am exhausted and just want to sit down and relax, I know that one day I will wish for one more day of getting her medicine, or washing her hair, or getting her dressed. I would challenge every husband out there to observe their wives and see all that they do for you, and then do those things for her for one month. I guarantee that at the end of that month, you will have a deeper love for your wife and appreciate all that she does for you and hopefully will continue to help out going forward.
I am glad that Mandy and I have felt comfortable discussing some very uncomfortable topics, but we both are determined to "experience" this part of our lives together. Trust me, there have been times when I would like to ignore that my wife is dying and try to act like nothing is happening, but if I did, I would be missing out on precious time that I will never get back.
We are so thankful for all your thoughts and prayers on our behalf and thanks for listening in on our conversations.......
Love you all......Jay
Mandy's cancer has continued to show progression and is causing her to sleep as much as 18 hours in a day. We have had several visitors the last few weeks and Mandy has enjoyed the visits and feels bad that she has to sleep so much. Her tumor is still growing and pushing upward into her diaphragm causing her to get short of breath anytime she has to get out of bed or out of her chair. Her tumor was bleeding a lot causing her to become anemic which caused a lot of concern from our nurse. However, the last couple of weeks, the tumor has stopped bleeding heavily which has allowed Mandy to get her iron levels back up and to feel a little better.
Over the last 20 years of fighting cancer, Mandy and I have had countless conversations about life and more recently about death, and we would like to share some of them with you, so here goes.....
Miracles - Early on this was a regular topic of conversation, between Mandy and I and the countless number of people praying for her. Funny word "miracle", does it refer to someone being completely healed from a disease, or does someone surviving 4 times the expected lifespan after diagnosis count? Our conversation lately has revolved around the idea of being healed completely and what that would be like. On the one hand, Mandy and I could continue our love story and experience more things together. But in Mandy's words, "I'm not sure if I would want to have to experience this "dying" thing again." We discussed how both of us have focused less on a miracle and more on Mandy's hope of heaven and having no more pain, and more importantly, being in the presence of the Almighty. Have we given up on God? On the contrary, we are putting our complete trust in His promise. I do not want to experience my wife's death, but seeing her suffer in pain and struggle to even get out of bed, I find comfort in the promise of heaven.
Speaking of Heaven - We talk a lot about heaven! What will it will be like, will Mandy get her own baby sloth when she gets there? Looking forward to seeing loved ones that are there, and all those people that she will meet for the first time. What will it look like? How wonderful it will be to no longer have any pain whatsoever!!!!!! There are more questions than answers, but the hope of heaven is enough.
Wanting to stay, wanting to go - Mandy has a strong will to live, maybe the understatement of the year! Even in her pain and struggle, I can see it in her eyes. I would have given up a long time ago, but she keeps fighting. But, within that fight, I see a longing for it all to end. For the peace that comes with heaven. She struggles with leaving me alone, with her parents having to deal with losing a child, with not being able to see season 11 of the Big Bang Theory! I struggle with this also. I want to grow old together. I think about all the things I will miss about her being here and all the laughs we could have. Then I watch her face grimace as her tumor shoots pain throughout her body. I see her struggle to walk due to the lymphedema and how she gasps for breathe just from walking fifteen feet and I think how selfish it is for me to want her to be here longer. She will be in a much better place once she leaves this world, and I will find peace in that.
Death/Dying - Wow, I never thought I would spend as much time talking about this at our age, but here we are and we talk about it a lot. What will dying be like? We have read several hospice books trying to learn what dying will be like, but only determined that each person dies in their own special way. I have concluded that I can either accept it and be there to help Mandy or I can deny it and miss out in the last moments I will get with her this side of heaven. I choose to be there for her! Mandy has said on numerous occasions that "dying is hard work!" For the last 6 months, we have been given several timelines for her life expectancy, from 3-4 months to 1-2 weeks to even "just a few days" at one point. It was explained that her health would most likely stay at a certain level and then go down quickly. Well, Mandy has done just the opposite. She has had to endure a slowly growing tumor, fluid build-up in her legs and abdomen, the struggle with breathing and having to give up doing just the smallest of tasks. She spends most of her time sleeping and wonders at times "what am I even doing here?"
Life after Mandy - This is one of the tougher conversations for me. Mandy has made me promise not to become a hermit. I have to keep interacting with people, and not just the people behind the counter at Jimmy Johns! I can't sit around all day watching sports and eating wings in the dark, she said. We have two fur babies that have to be taken care of after all. I have told her that one of my concerns is that I will become a workaholic to keep my mind busy. Frankly, I'm not sure how I will react or how I will "handle" myself, but I do know it will be difficult and that I will miss her so much. Beyond that, I have let Mandy know that I will be OK, I will think of her often and probably cry every time I see a bluebird. I see a lot of hiking in my future, I can be in my happy place and do something that Mandy and I loved to do together, explore new places.
Appreciation - I told Mandy the other day that I didn't appreciate her enough in all the things she did for me throughout our marriage. She worked a full-time job, planned and cooked almost all our meals, cleaned the house and basically took care of me. Now it's my turn to do the same for her and I have realized how hard it is! It is a privilege to take care of Mandy and even though there are times when I am exhausted and just want to sit down and relax, I know that one day I will wish for one more day of getting her medicine, or washing her hair, or getting her dressed. I would challenge every husband out there to observe their wives and see all that they do for you, and then do those things for her for one month. I guarantee that at the end of that month, you will have a deeper love for your wife and appreciate all that she does for you and hopefully will continue to help out going forward.
I am glad that Mandy and I have felt comfortable discussing some very uncomfortable topics, but we both are determined to "experience" this part of our lives together. Trust me, there have been times when I would like to ignore that my wife is dying and try to act like nothing is happening, but if I did, I would be missing out on precious time that I will never get back.
We are so thankful for all your thoughts and prayers on our behalf and thanks for listening in on our conversations.......
Love you all......Jay
Friday, April 21, 2017
Roller Coaster
An Enigma...The Exception to Every Rule...
These are what Jay and my nurse Stacy have recently called me.
In August, I was given six months. In September, that changed to three months. We celebrated Thanksgiving and Christmas, certain I wouldn't see much of the new year. In March, I was given one month. We've surpassed the one month timeline. We have all been subjected to an emotional roller coaster and my hospice team is rather befuddled right now.
I am grateful God has allowed me more time than we anticipated. I'm so blessed to be spending time with precious friends and my family. We've had "real" talks that included many tears and much laughter. I've seen several beautiful snow storms and crossed many items off my short bucket list.
Because my time is limited, I have worked on being more open and real with people. There are many parts of this journey that have flat-out sucked. Normally, I would never say that. I would just smile through it and say it's okay. I've been able to express to God and others that I don't really think this is all okay. It is not okay to make my husband a young widower...it is not okay to make my parents out-live their daughter...it is not okay that we have all been through an emotional wringer more times than we can count. It is not okay - IT SUCKS!
You know what? God gets it. He really does. This was not His plan. His plan was paradise - Eden. His plan was to walk among His creation, talking with them and enjoying a beautiful close relationship with them. Well - we humans messed it up but that didn't stop Him from loving us deeply. The circumstances we face may be horrible, life-alteringly sad and devastating, but that shouldn't change our love for God.
God loves us so greatly that He couldn't bear the thought of being separated from us. Imagine that! The same God who placed the planets in the universe and spoke our world into being, loves us so much, He wants to be with us always.
There's just one problem - sin. We sin-we're all sinners. It's a sad fact. It's also a fact that God cannot live in the presence of sin - hence the eviction of Adam and Eve from Eden.
God had only one choice - an agonizing choice, but the ONLY way you and I could be reunited with Him and live in His presence now and forever in heaven. He needed a perfect, spotless sacrificial lamb to take the place of our disgusting sin. The only one capable of this task - His one and only Son, Jesus. So God sent Jesus here, knowing full well what He was sending Him to do.
Throughout His entire life, Jesus showed us love, light and life - perfectly and without a single sin.
Jesus also knew the reason His Father sent Him here - to face down a punishment that was meant for me and you.
After hours of agonizing prayer, begging and pleading for God to find another way - to find another answer to our sin problem, He knew that He must be faithful to His Father's will. Instead of fleeing from the fear of this, He laid down on that cross willingly. As he hung there, every sin of every person then, now and to come, was placed on Him. Jesus - the perfect lamb of God was now being held in place with spikes and all of our foul, repulsive and rotten sin was being cast on Him. It became too much for the Father to witness.
When Jesus died and rose again - our salvation was set securely. Through His supreme act of faith, obedience and love, when we accept His precious gift of salvation, He removes our sins from us. Now, when God sees us - He sees the blood of His beautiful Son washing us clean. We can now be pure and clean in the presence of God.
Don't allow your circumstances to dictate how you see and feel about God. Allow your faith and love for God to dictate how you handle your circumstances.
Apparently, my timeline is a complete mystery. I asked a friend why God wasn't ready for me yet. She replied "you may not be ready for heaven yet." There may be more refining God has planned for me, or there are plans unfinished that He needs me to accomplish. Either way, the One who knows the exact number of my days and set them into motion before I was born, will see to it that I have everything I need here until He calls me Home to Paradise.
Blessings,
Mandy
These are what Jay and my nurse Stacy have recently called me.
In August, I was given six months. In September, that changed to three months. We celebrated Thanksgiving and Christmas, certain I wouldn't see much of the new year. In March, I was given one month. We've surpassed the one month timeline. We have all been subjected to an emotional roller coaster and my hospice team is rather befuddled right now.
I am grateful God has allowed me more time than we anticipated. I'm so blessed to be spending time with precious friends and my family. We've had "real" talks that included many tears and much laughter. I've seen several beautiful snow storms and crossed many items off my short bucket list.
Because my time is limited, I have worked on being more open and real with people. There are many parts of this journey that have flat-out sucked. Normally, I would never say that. I would just smile through it and say it's okay. I've been able to express to God and others that I don't really think this is all okay. It is not okay to make my husband a young widower...it is not okay to make my parents out-live their daughter...it is not okay that we have all been through an emotional wringer more times than we can count. It is not okay - IT SUCKS!
You know what? God gets it. He really does. This was not His plan. His plan was paradise - Eden. His plan was to walk among His creation, talking with them and enjoying a beautiful close relationship with them. Well - we humans messed it up but that didn't stop Him from loving us deeply. The circumstances we face may be horrible, life-alteringly sad and devastating, but that shouldn't change our love for God.
God loves us so greatly that He couldn't bear the thought of being separated from us. Imagine that! The same God who placed the planets in the universe and spoke our world into being, loves us so much, He wants to be with us always.
There's just one problem - sin. We sin-we're all sinners. It's a sad fact. It's also a fact that God cannot live in the presence of sin - hence the eviction of Adam and Eve from Eden.
God had only one choice - an agonizing choice, but the ONLY way you and I could be reunited with Him and live in His presence now and forever in heaven. He needed a perfect, spotless sacrificial lamb to take the place of our disgusting sin. The only one capable of this task - His one and only Son, Jesus. So God sent Jesus here, knowing full well what He was sending Him to do.
Throughout His entire life, Jesus showed us love, light and life - perfectly and without a single sin.
Jesus also knew the reason His Father sent Him here - to face down a punishment that was meant for me and you.
After hours of agonizing prayer, begging and pleading for God to find another way - to find another answer to our sin problem, He knew that He must be faithful to His Father's will. Instead of fleeing from the fear of this, He laid down on that cross willingly. As he hung there, every sin of every person then, now and to come, was placed on Him. Jesus - the perfect lamb of God was now being held in place with spikes and all of our foul, repulsive and rotten sin was being cast on Him. It became too much for the Father to witness.
When Jesus died and rose again - our salvation was set securely. Through His supreme act of faith, obedience and love, when we accept His precious gift of salvation, He removes our sins from us. Now, when God sees us - He sees the blood of His beautiful Son washing us clean. We can now be pure and clean in the presence of God.
Don't allow your circumstances to dictate how you see and feel about God. Allow your faith and love for God to dictate how you handle your circumstances.
Apparently, my timeline is a complete mystery. I asked a friend why God wasn't ready for me yet. She replied "you may not be ready for heaven yet." There may be more refining God has planned for me, or there are plans unfinished that He needs me to accomplish. Either way, the One who knows the exact number of my days and set them into motion before I was born, will see to it that I have everything I need here until He calls me Home to Paradise.
Blessings,
Mandy
Sunday, March 26, 2017
The Blame Game
How often, when something bad happens, do you quickly look for someone or something to blame? Yeah me too! It almost becomes second nature. If we can find someone, or something, else to blame for our misfortune, it makes it much easier to accept. According to Google, which knows everything, it is called "blame culture."
For the last 21 years or so, cancer has been THE "thorn" in Mandy and my life. A couple of nights ago, after helping Mandy to bed, I laid down in our bed which is right next to her hospital bed, and asked her if she has ever blamed God for any of this. Now, I had asked myself this same question earlier that day and realized that I had come up with plenty of ideas of where to place blame for our situation over the past 21 years. First I thought about genetics.......nope, ovarian cancer does not run in her family and she tested negative for the BRCA 1 and BRCA 2 genes, so that's not it. Hmmmm, Mandy was born in northern Arizona, which was affected by the wind drift of the nuclear testing that was done in Nevada years ago. They call the people affected, the Downwinders, and the government pays $50,000 to anyone who develops certain types of cancer and lived for two years in certain counties in Arizona, Nevada and Utah from 1951 to 1962. Strike two, Mandy wasn't born until 1973, so that can't be it. In today's climate, it would be perfect to blame the government for all of this and Trump hasn't tweeted anything about ovarian cancer, YET. What about talcum powder???? Just recently a woman's family was awarded millions of dollars for her untimely death due to ovarian cancer from years of use of talcum powder. Mandy used talcum powder. I might actually have to look into this one! What about Big pharma, they are an easy target to blame. There is a large portion of the population that believes big pharma can cure cancer, however, they make so much money in treating cancer that it would be "bad business" to actually cure it! For example, one of Mandy's chemo drugs cost $80,000 per treatment! Maybe we can blame the family doctor who failed to properly diagnose Mandy which delayed her initial treatment by months as she attempted to treat Mandy for a multitude of "other" conditions. What about blaming the cancer itself? But, that would be like blaming the bed for hurting my big toe when I kicked it in the dark the other night, as if the bed did that on purpose.
No, not one of those brings satisfaction to our situation. However, as Mandy and I separately pondered over our situation, we both concluded that we had never blamed God for this. We have both had some serious conversations with God asking "why?" But not once have we blamed Him for all of this. On the contrary, God has been the One who has kept us together and helped us get through all of this. He knew before Mandy and I even met that we would have a love that would be strong enough to endure all of this. Just think about that for a second, God, the hopeless romantic, knew that with His guidance, we could write a love story worthy of a blog!
As we laid there discussing this, I had the strongest feeling that I needed to do something. I needed to FORGIVE cancer. So, for the past 7,574 days that cancer has been an uninvited guest in our house, for all the times I have cursed it, I want to, no I need to say "Cancer......I forgive you!"
I don't want to spend anymore of our precious time or energy by hating cancer or figuring out who or what to blame for this disease that ultimately will end my beautiful wife's time here on earth. I would rather celebrate our life together and all the fun and love that we have been able to share with each other and with our tribe! So, in the spirit of Jesus' teaching, I will forgive 1,082 x 7, because that is how I can move forward.
One of the things Mandy has enjoyed most is cooking and baking. It was one of my favorite things too! If you were lucky enough to have partaken of a meal or dessert prepared by Mandy, then you know what I am talking about. Yesterday Mandy presented me with a handwritten cookbook of all of our favorite recipes and a few new ones for me to try. I told her that she probably should have included some take-out menus from some of our favorite eateries in Flagstaff! She continues to take care of me and wants me to be able to fend for myself, so she patiently sat next to me guiding me through preparing one of our favorite meals that she adapted from Pioneer Woman called "Marlboro Man" sandwiches. Mandy grew up learning how to cook from her French-Cajun grandmother who, whenever we visited in Louisiana, always made sure we left 10 pounds heavier. Mandy was always happiest creating a masterpiece in the kitchen. I am glad to report that my cooking was edible and we enjoyed the sandwiches immensely.
Just recently, Mandy created what will likely be her last bucket list, and this one consists of all the foods she wants to eat before she goes! I love this woman! The list has 13 foods/restaurants on it, of which we have checked off one so far.
I know I can't hold a candle to the hurricane that is Mandy's writings, but this is something that I just had to get off of my chest. Thank you for indulging me and for your continued prayers for Mandy and myself.
Jay
For the last 21 years or so, cancer has been THE "thorn" in Mandy and my life. A couple of nights ago, after helping Mandy to bed, I laid down in our bed which is right next to her hospital bed, and asked her if she has ever blamed God for any of this. Now, I had asked myself this same question earlier that day and realized that I had come up with plenty of ideas of where to place blame for our situation over the past 21 years. First I thought about genetics.......nope, ovarian cancer does not run in her family and she tested negative for the BRCA 1 and BRCA 2 genes, so that's not it. Hmmmm, Mandy was born in northern Arizona, which was affected by the wind drift of the nuclear testing that was done in Nevada years ago. They call the people affected, the Downwinders, and the government pays $50,000 to anyone who develops certain types of cancer and lived for two years in certain counties in Arizona, Nevada and Utah from 1951 to 1962. Strike two, Mandy wasn't born until 1973, so that can't be it. In today's climate, it would be perfect to blame the government for all of this and Trump hasn't tweeted anything about ovarian cancer, YET. What about talcum powder???? Just recently a woman's family was awarded millions of dollars for her untimely death due to ovarian cancer from years of use of talcum powder. Mandy used talcum powder. I might actually have to look into this one! What about Big pharma, they are an easy target to blame. There is a large portion of the population that believes big pharma can cure cancer, however, they make so much money in treating cancer that it would be "bad business" to actually cure it! For example, one of Mandy's chemo drugs cost $80,000 per treatment! Maybe we can blame the family doctor who failed to properly diagnose Mandy which delayed her initial treatment by months as she attempted to treat Mandy for a multitude of "other" conditions. What about blaming the cancer itself? But, that would be like blaming the bed for hurting my big toe when I kicked it in the dark the other night, as if the bed did that on purpose.
No, not one of those brings satisfaction to our situation. However, as Mandy and I separately pondered over our situation, we both concluded that we had never blamed God for this. We have both had some serious conversations with God asking "why?" But not once have we blamed Him for all of this. On the contrary, God has been the One who has kept us together and helped us get through all of this. He knew before Mandy and I even met that we would have a love that would be strong enough to endure all of this. Just think about that for a second, God, the hopeless romantic, knew that with His guidance, we could write a love story worthy of a blog!
As we laid there discussing this, I had the strongest feeling that I needed to do something. I needed to FORGIVE cancer. So, for the past 7,574 days that cancer has been an uninvited guest in our house, for all the times I have cursed it, I want to, no I need to say "Cancer......I forgive you!"
I don't want to spend anymore of our precious time or energy by hating cancer or figuring out who or what to blame for this disease that ultimately will end my beautiful wife's time here on earth. I would rather celebrate our life together and all the fun and love that we have been able to share with each other and with our tribe! So, in the spirit of Jesus' teaching, I will forgive 1,082 x 7, because that is how I can move forward.
One of the things Mandy has enjoyed most is cooking and baking. It was one of my favorite things too! If you were lucky enough to have partaken of a meal or dessert prepared by Mandy, then you know what I am talking about. Yesterday Mandy presented me with a handwritten cookbook of all of our favorite recipes and a few new ones for me to try. I told her that she probably should have included some take-out menus from some of our favorite eateries in Flagstaff! She continues to take care of me and wants me to be able to fend for myself, so she patiently sat next to me guiding me through preparing one of our favorite meals that she adapted from Pioneer Woman called "Marlboro Man" sandwiches. Mandy grew up learning how to cook from her French-Cajun grandmother who, whenever we visited in Louisiana, always made sure we left 10 pounds heavier. Mandy was always happiest creating a masterpiece in the kitchen. I am glad to report that my cooking was edible and we enjoyed the sandwiches immensely.
Just recently, Mandy created what will likely be her last bucket list, and this one consists of all the foods she wants to eat before she goes! I love this woman! The list has 13 foods/restaurants on it, of which we have checked off one so far.
I know I can't hold a candle to the hurricane that is Mandy's writings, but this is something that I just had to get off of my chest. Thank you for indulging me and for your continued prayers for Mandy and myself.
Jay
Sunday, March 19, 2017
This World is Not My Home....Passing the Blog Baton
When I read Hebrews 9:27 and see that it is appointed for man to die...I think..I can comprehend that. The truth is, that it feels so far into the future and it is so non-specific, it is easy to acknowledge and ignore.
When my Doctor and Nurse both agree they feel I have a certain number of days remaining, it becomes much more specific, yet no easier to comprehend. I would think that being this close, I would be able to wrap my head around it, but I cannot.
We live our lives "knowing" way in the back of our minds, that, unless Jesus returns first, we will all die. However, until you are given an actual timeline, it rarely feels real. Heck, even when you are given the timeline, it still doesn't feel quite real.
I have no way of truly grasping this concept. One moment I think I have peace and understanding and in the blink of an eye, that all shatters and I am left staring down at the broken shards, wondering what to do.
What I truly want, as I see this life and realm fading, is for the heavenly realms to open and reveal themselves - giving me a glimpse of what awaits me. I can only imagine what that would be like, but, faith doesn't ask me to believe in what I see, faith asks me to believe in the unseen promises.
Jay and I discussed pain levels a few days ago while talking about pain medications. We realized that I have not had a pain free day in over 20 years. I cannot even fathom what no pain feels like - it is truly all I know.
I thought about the dramatic difference I would feel once I reach heaven - no pain, no sorrow, no fear - all GONE, thanks to JESUS!
I have decided to start thanking and praising Him now for the mercies He will give me when I meet Him. 20 years of pain traded for an eternity of perfection - the least I can do is be thankful and praise Him.
This will most likely be my last blog. My swollen body is beginning to ebb. I find myself sleeping more and more. I have a hard time focusing on even small tasks. Even writing this, I have dozed off a couple of times.
I want to thank each of you for reading our story and for responding with such love and compassion. Jay and I are forever grateful for each of you.
Jay has agreed to take over the blog for me. He is an incredibly gifted writer and will faithfully keep you all posted as our story and journey continue to unfold.
May God bless and keep each one of you in His strong arms of love always.
Blessings,
Mandy
When my Doctor and Nurse both agree they feel I have a certain number of days remaining, it becomes much more specific, yet no easier to comprehend. I would think that being this close, I would be able to wrap my head around it, but I cannot.
We live our lives "knowing" way in the back of our minds, that, unless Jesus returns first, we will all die. However, until you are given an actual timeline, it rarely feels real. Heck, even when you are given the timeline, it still doesn't feel quite real.
I have no way of truly grasping this concept. One moment I think I have peace and understanding and in the blink of an eye, that all shatters and I am left staring down at the broken shards, wondering what to do.
Jay and I discussed pain levels a few days ago while talking about pain medications. We realized that I have not had a pain free day in over 20 years. I cannot even fathom what no pain feels like - it is truly all I know.
I thought about the dramatic difference I would feel once I reach heaven - no pain, no sorrow, no fear - all GONE, thanks to JESUS!
I have decided to start thanking and praising Him now for the mercies He will give me when I meet Him. 20 years of pain traded for an eternity of perfection - the least I can do is be thankful and praise Him.
This will most likely be my last blog. My swollen body is beginning to ebb. I find myself sleeping more and more. I have a hard time focusing on even small tasks. Even writing this, I have dozed off a couple of times.
I want to thank each of you for reading our story and for responding with such love and compassion. Jay and I are forever grateful for each of you.
Jay has agreed to take over the blog for me. He is an incredibly gifted writer and will faithfully keep you all posted as our story and journey continue to unfold.
May God bless and keep each one of you in His strong arms of love always.
Blessings,
Mandy
Saturday, March 11, 2017
Walking Me Home
Yesterday we met with Dr. Monroy - the Hospice Doctor. She's extremely kind and calm. She thoroughly explains things. We made the decision a few weeks ago, to just see the Hospice Doctor instead of having a Palliative Care Doctor and a Hospice Doctor. Too many docs and things were getting a bit muddled.
Nurse Stacy
Yesterday, we discussed new symptoms and possible treatments. I'm experiencing pretty severe lymphedema in my legs and feet. We tried lasix a few weeks ago, however, my potassium bottomed out and caused some serious side effects. We may be able to try a more mild diuretic in the future. We will also try a newer type of banding than the compression socks. We are praying something works - this stuff is miserable. I weighed yesterday and in two weeks, I've gained 12 pounds of fluid. If the banding or diuretics do not work, the fluid will become too much for the tissues to bear, and will begin to weep through the pores in my legs. Yep - it is gross....Cancer is gross!!
Jay & Lisa helping with my compression socks
There are a couple of possible reasons for the lymphedema. It could be due to the tumor burden in my abdomen that has basically "broken" my lymph system. It could also be a possible blood clot in my pelvis. There are no treatment options available for either. If it is a blood clot, the treatment would be blood thinners, however, the large abdominal tumor has begun some bleeding episodes again, and we cannot risk the use of blood thinners.
My Heart
We have had some wonderful visits the past couple of months. Mark and Carolyne came out for a couple of days then spent some time in Sedona. They were set to come back to stay with us a few days, however, Carolyne caught a nasty cold and the decision was made for them to head back home rather than risk infecting me.
Steiners' Visit
Jay's family has made several day trips up to see us and Jay's mom spent a few days with us. It was a blessing having her here when my potassium levels bottomed out - having a nurse on hand 24/7 was great.
My Mom came up and spent a few days here. She gave me foot rubs, and we spent time laughing and crying and telling old stories.
Foot Rubs
Ginger was here last week - as always, we spent much time crafting and just enjoyed being together.
Laughing with Ginger
My Dad, Charla and Somer will be here next week. Somer recently got engaged so we cannot wait to browse through bridal magazines and Pinterest!
All the visits bring so much love and joy to our lives. We enjoy the time we are able to spend together while I am awake and coherent and able to enjoy their company.
My Doctor explained to us there are a few ways my disease may progress:
a) symptoms could slowly increase and my health could steadily and slowly decrease. This means more suffering for me, however, it would be much easier for my family.
b) quick decline: this would be easier for me, yet harder for my family.
We are hoping for a combination: slow enough to gather my tribe around me and quick at the end. That's not too much to ask.
c) If it is a blood clot, the decline could be instantaneous. My Doctor told Jay that should it happen that way, to remember that although it will be more difficult for him, it is one of the easiest ways for dying to happen.
Out for a Stroll
With the lymphedema, it is now very difficult to walk and the fatigue is steadily increasing. I nap often during the day and find myself dozing off and not being able to focus on tasks because I'm too sleepy.
Blog Writing
We have now reached a noticeable point where my tribe is walking me home. Every day as I edge closer to the door of heaven, my tribe walks near to my side. They love me with foot rubs, crafting time, sweet conversations, laughter, tears and grace.
These people have never wavered in their love, compassion and willingness to do whatever is needed to gently ease our burdens. Our lives would not be the same without them.
Blessings,
Mandy
Yesterday, we discussed new symptoms and possible treatments. I'm experiencing pretty severe lymphedema in my legs and feet. We tried lasix a few weeks ago, however, my potassium bottomed out and caused some serious side effects. We may be able to try a more mild diuretic in the future. We will also try a newer type of banding than the compression socks. We are praying something works - this stuff is miserable. I weighed yesterday and in two weeks, I've gained 12 pounds of fluid. If the banding or diuretics do not work, the fluid will become too much for the tissues to bear, and will begin to weep through the pores in my legs. Yep - it is gross....Cancer is gross!!
There are a couple of possible reasons for the lymphedema. It could be due to the tumor burden in my abdomen that has basically "broken" my lymph system. It could also be a possible blood clot in my pelvis. There are no treatment options available for either. If it is a blood clot, the treatment would be blood thinners, however, the large abdominal tumor has begun some bleeding episodes again, and we cannot risk the use of blood thinners.
We have had some wonderful visits the past couple of months. Mark and Carolyne came out for a couple of days then spent some time in Sedona. They were set to come back to stay with us a few days, however, Carolyne caught a nasty cold and the decision was made for them to head back home rather than risk infecting me.
Jay's family has made several day trips up to see us and Jay's mom spent a few days with us. It was a blessing having her here when my potassium levels bottomed out - having a nurse on hand 24/7 was great.
My Mom came up and spent a few days here. She gave me foot rubs, and we spent time laughing and crying and telling old stories.
Ginger was here last week - as always, we spent much time crafting and just enjoyed being together.
My Dad, Charla and Somer will be here next week. Somer recently got engaged so we cannot wait to browse through bridal magazines and Pinterest!
All the visits bring so much love and joy to our lives. We enjoy the time we are able to spend together while I am awake and coherent and able to enjoy their company.
My Doctor explained to us there are a few ways my disease may progress:
a) symptoms could slowly increase and my health could steadily and slowly decrease. This means more suffering for me, however, it would be much easier for my family.
b) quick decline: this would be easier for me, yet harder for my family.
We are hoping for a combination: slow enough to gather my tribe around me and quick at the end. That's not too much to ask.
c) If it is a blood clot, the decline could be instantaneous. My Doctor told Jay that should it happen that way, to remember that although it will be more difficult for him, it is one of the easiest ways for dying to happen.
With the lymphedema, it is now very difficult to walk and the fatigue is steadily increasing. I nap often during the day and find myself dozing off and not being able to focus on tasks because I'm too sleepy.
We have now reached a noticeable point where my tribe is walking me home. Every day as I edge closer to the door of heaven, my tribe walks near to my side. They love me with foot rubs, crafting time, sweet conversations, laughter, tears and grace.
These people have never wavered in their love, compassion and willingness to do whatever is needed to gently ease our burdens. Our lives would not be the same without them.
Mandy
Sunday, February 12, 2017
HOPE
Since this is my 3rd dance with the "C" word, the closing of my life isn't a completely foreign concept to me. With each new recurrence, surgery and treatment plan, death was always a real possibility.
So - with 20+ years of staring down the barrel of death, why am I so surprised by my feelings of shock, anger and grief? One word - HOPE.
Each new attempt at outsmarting the cancer cells, each new infusion of poison designed to eradicate, each meeting with the best oncologists in the country afforded us a new measure of Hope.
Hope kept death at bay; Hope allowed us to view new scars as a warrior's badge of courage; Hope allowed us to accept each new toxic cocktail being pumped into my body as an eventual life source.
Hope was able to mask the fear that gripped our hearts and Hope allowed us to dream of a sweet future where we grow old together and cancer is just an unpleasant, distant memory.
Now - that Hope is gone. The cancer cells proved to be sneakier and smarter than the treatments. No amount of poison, surgery or PhD's hanging on an office wall were able to outwit them.
Now, we have a new Hope. A different and better Hope. Instead of physical healing, our Hope is for emotional and spiritual healing. Healing from the grief, anger and sadness that have become part of our days. Hope that God will show us mercy through suffering. Hope that good will come of our story. Hope that our lives and our home will be sheltered under His peaceful wing. Hope that, despite our circumstances, His presence and golden glow can be felt by all who enter our lives.
Hope that when Jesus says my time here is completed, that He will greet me with arms wide open and welcome me into an eternity of walking with Him through the gardens of paradise.
Hope that when I'm gone, His sweet, peaceful presence will cover my tribe in love. Hope that they will have happy memories to focus on and that laughter will quickly replace sorrow.
Blessings,
Mandy
So - with 20+ years of staring down the barrel of death, why am I so surprised by my feelings of shock, anger and grief? One word - HOPE.
Each new attempt at outsmarting the cancer cells, each new infusion of poison designed to eradicate, each meeting with the best oncologists in the country afforded us a new measure of Hope.
Hope kept death at bay; Hope allowed us to view new scars as a warrior's badge of courage; Hope allowed us to accept each new toxic cocktail being pumped into my body as an eventual life source.
Hope was able to mask the fear that gripped our hearts and Hope allowed us to dream of a sweet future where we grow old together and cancer is just an unpleasant, distant memory.
Now - that Hope is gone. The cancer cells proved to be sneakier and smarter than the treatments. No amount of poison, surgery or PhD's hanging on an office wall were able to outwit them.
Now, we have a new Hope. A different and better Hope. Instead of physical healing, our Hope is for emotional and spiritual healing. Healing from the grief, anger and sadness that have become part of our days. Hope that God will show us mercy through suffering. Hope that good will come of our story. Hope that our lives and our home will be sheltered under His peaceful wing. Hope that, despite our circumstances, His presence and golden glow can be felt by all who enter our lives.
Hope that when Jesus says my time here is completed, that He will greet me with arms wide open and welcome me into an eternity of walking with Him through the gardens of paradise.
Hope that when I'm gone, His sweet, peaceful presence will cover my tribe in love. Hope that they will have happy memories to focus on and that laughter will quickly replace sorrow.
Blessings,
Mandy
Thursday, February 9, 2017
HAPPY BIRTHDAY MY HEART
I have been honored to know and love this remarkable man for 22+ of his 46 years. Here are a few things you should know about Jay:
Rocky Mountain National Park
My boy is wicked smart! He loves to read and is constantly absorbing and learning new things. He adores God's word and is especially fascinated with the Jewish life and nature of Jesus.
When Jay loves someone - it is forever and always. He loves deeply and completely. He is fiercely protective of those he loves.
Jay is a naturally gifted athlete. He picks up sports ridiculously easy (so easy it borders on annoying for those of us not athletically gifted). He loves baseball, basketball, skiing and swimming. When not playing sports, he loves to watch sports...all sports. He has an amazing knowledge of most sport - I've told him he should have been a sports announcer.
Jay is happiest when outdoors. From the time he was a toddler, he just wanted to spend his days outside exploring. Camping and hiking are his two favorite ways to spend time. The man is part mountain goat - he can out-walk and out-hike most people half his age.
Smoky Mountains
Jay loves music - all types. I have never seen a more eclectic compilation on I Tunes before. Music speaks to him in a way few other things can. It calms him, centers him and focuses him. He can remember song lyrics from the most random and obscure songs. I've always said, if I want him to remember something important, I need to sing it to him.
Jay is an "old soul". He was born old. He has always been mature and reasonable. He didn't go through the ridiculous, rebellious teen issues most of us did. While the rest of us were acting like morons, Jay was working and being a responsible person. He is level-headed and extremely diplomatic. The perfect compliment to my sarcastic, say-anything personality.
Maui
Jay is an amazing caregiver. He can give shots, do dressing changes, manage wound care. He can walk at a sloth-like pace around nurses stations for hours on end. He can sleep on those hideous hospital room sofas and reach over to silence the IV alarm without opening his eyes. He knows his way around hospitals better than most of the employees. He can shave a Mohawk into your hair before it all falls out. He is a gate-keeper, knowing when to allow visitors and when I need rest. He is a chef, a housekeeper and a grocery shopper. He is a pharmacist and apothecary.
If I had all the time in the world, I couldn't tell you all the amazing things about Jay. The most important of all is his love. His love for his Savior, his love for his family and friends. His love for his wife that has never wavered.
My Heart - I wish for you a day filled with only goodness, laughter and love.
All my Love,
Mandy
Sunday, February 5, 2017
My Circumstances...His Truths
Hearing and believing God's truths are not reliant on my circumstances.
This is the lesson He has recently been teaching me. Attempting to search for contentment anywhere outside of Him is useless.
I recently entered a season of jealousy and discontentment. These feelings are unlike anything I've ever known - and I deeply dislike them.
I would see and hear people casually planning their days, weeks, even years - giving no thought as to whether or not they will see those plans fulfilled. I watched the lives of others from the sidelines and found myself overwhelmed with emotions. I viewed seemingly picture perfect lives and longed for a time when planning a life and a future were a real possibility. Planning our next travel adventure; building our dream cabin in the mountains; retirement options; growing old together and enjoying our lives long into our golden years.
Now, we are simply attempting to capture as much life and living as possible in a very short amount of time and within a very limited space. The envy and discontent would rear their ugly heads when I viewed the lives of others through the lenses of my grief and sadness. Deep down, I understood that everyone has struggles and that no life is perfect. Real life, daily life is usually messy and completely filter-free. It looks nothing like Facebook and Instagram photos. It's so easy to put all of the beautiful, filtered images out there for people to see. I am definitely guilty of this. The challenge is allowing others to see real life - the un-perfect, messy, beautiful lives that we all live.
Once I opened my heart to God and honestly shared with Him, I realized that I was choosing to believe a Chrome-filtered lie. Ashamed, I stepped back. I had allowed my peace and contentment to become dependent not only on my circumstances, but on the outward surface of life. I realized that I was wasting precious time and energy - that's what the enemy wants. Waste all of the time I have left on things that take my heart far away from God. The more I focus on the outward surface, the harder it becomes to see the glory of God that surrounds me in so many ways. Looking beyond this life and into the next life - our REAL, TRUE life, is what will keep me connected to the heart of my Abba Father and only then will I understand and obtain true contentment and peace.
Blessings,
Mandy
This is the lesson He has recently been teaching me. Attempting to search for contentment anywhere outside of Him is useless.
I recently entered a season of jealousy and discontentment. These feelings are unlike anything I've ever known - and I deeply dislike them.
I would see and hear people casually planning their days, weeks, even years - giving no thought as to whether or not they will see those plans fulfilled. I watched the lives of others from the sidelines and found myself overwhelmed with emotions. I viewed seemingly picture perfect lives and longed for a time when planning a life and a future were a real possibility. Planning our next travel adventure; building our dream cabin in the mountains; retirement options; growing old together and enjoying our lives long into our golden years.
Now, we are simply attempting to capture as much life and living as possible in a very short amount of time and within a very limited space. The envy and discontent would rear their ugly heads when I viewed the lives of others through the lenses of my grief and sadness. Deep down, I understood that everyone has struggles and that no life is perfect. Real life, daily life is usually messy and completely filter-free. It looks nothing like Facebook and Instagram photos. It's so easy to put all of the beautiful, filtered images out there for people to see. I am definitely guilty of this. The challenge is allowing others to see real life - the un-perfect, messy, beautiful lives that we all live.
Once I opened my heart to God and honestly shared with Him, I realized that I was choosing to believe a Chrome-filtered lie. Ashamed, I stepped back. I had allowed my peace and contentment to become dependent not only on my circumstances, but on the outward surface of life. I realized that I was wasting precious time and energy - that's what the enemy wants. Waste all of the time I have left on things that take my heart far away from God. The more I focus on the outward surface, the harder it becomes to see the glory of God that surrounds me in so many ways. Looking beyond this life and into the next life - our REAL, TRUE life, is what will keep me connected to the heart of my Abba Father and only then will I understand and obtain true contentment and peace.
Blessings,
Mandy
When I am Weak, He is Strong
...When I am weak, He is strong...
His strength is magnified through my weakness;
His love shines through my pain;
His joy is illuminated through my grief;
His peace radiates through my uncertainty
How? How is this even possible?
In the gut-wrenching middle of my pain and sorrow, His strength and glory shine? I certainly do not feel shiny in those moments. I feel lost, hopeless and often abandoned.
The golden glow of His presence often feels far away.
Thankfully - His love, strength and presence are not contingent upon my feelings. In circumstances of sadness and pain, my feelings are not reliable. Feelings of despair and abandonment are actually lies the enemy uses to assure me that God has stepped away and left me to face the darkness and hopelessness on my own. Listening to those lies only ushers in fear, which blinds me to the real truth.
Regardless of what I feel, the truth is this...
* God will never leave me.
* God's love is everlasting.
* Nothing can separate me from God's love.
* God is aware of my circumstances and He cares a great deal.
* God hurts when I hurt.
* God records each of my sorrows and tears.
* God will send His golden glow of peace - often in unexpected ways.
* God's presence surrounds me - I only have to look past this work and into the heavenly realms.
Finding his truths and His peace are not reliant on my circumstances. Troubles here are momentary but my life with Him will be forever. His strength is the all sustaining force that will keep us focused on truth, not lies.
Blessings,
Mandy
His strength is magnified through my weakness;
His love shines through my pain;
His joy is illuminated through my grief;
His peace radiates through my uncertainty
How? How is this even possible?
In the gut-wrenching middle of my pain and sorrow, His strength and glory shine? I certainly do not feel shiny in those moments. I feel lost, hopeless and often abandoned.
The golden glow of His presence often feels far away.
Thankfully - His love, strength and presence are not contingent upon my feelings. In circumstances of sadness and pain, my feelings are not reliable. Feelings of despair and abandonment are actually lies the enemy uses to assure me that God has stepped away and left me to face the darkness and hopelessness on my own. Listening to those lies only ushers in fear, which blinds me to the real truth.
Regardless of what I feel, the truth is this...
* God will never leave me.
* God's love is everlasting.
* Nothing can separate me from God's love.
* God is aware of my circumstances and He cares a great deal.
* God hurts when I hurt.
* God records each of my sorrows and tears.
* God will send His golden glow of peace - often in unexpected ways.
* God's presence surrounds me - I only have to look past this work and into the heavenly realms.
Finding his truths and His peace are not reliant on my circumstances. Troubles here are momentary but my life with Him will be forever. His strength is the all sustaining force that will keep us focused on truth, not lies.
Blessings,
Mandy
Wednesday, January 11, 2017
Re-Focus....Re-Prioritize
Continuing to see my lovely Doctor was so important to us, we've chosen to pay out of pocket in order to have her manage my hospice care. Her guidance through this journey has been a tremendous blessing and I couldn't bear the thought of continuing without her.
We were able to meet with her this week. We discussed the increasing symptoms, pain and fatigue. I've also been experiencing abdominal and back spasms. The abdominal tumors and those in my ribs have begun a constant painful assault. The abdominal spasms are located in an area where a tumor has wrapped itself around the muscle. We've been trying to manage these through pain meds and muscle relaxers. Unfortunately, the pain and spasms continue to worsen.
The large tumor is beginning to push further upward into my sternum area - this is not only painful, it is causing wicked reflux.
We are adjusting my med routine to try and manage all of this, however, this is where my stubbornness also kicks in. At this time, I refuse to be stuck in a drug-addled stupor all day. I want to be as lucid as possible for as long as possible. One day, my body won't give me a choice and the pain will win out - until then, I'm digging in my heels.
We also discussed an increase in anxiety that has manifested in the last couple of weeks. I told her that I was unsure where it was coming from. She calmly and softly informed me that it is grief. As soon as she said it, I knew she was correct. She told me that I am grieving my old life. She handed me the box of kleenex and I told her that I am grieving - I am grieving the person I once was; the life I once lived; and what will never be again. It is incredibly heart wrenching to come to terms with the fact that my life will now be spent on the couch, in the bed and occasionally, I will get out of the house for a doctors appointment and if I'm feeling particularly spunky - Target.
My Doctor stated that it all comes down to perceived control, when in actuality, we have no control whatsoever, over any of this. She encouraged me to determine what I really, truly need to accomplish / complete - do it and literally let the rest go.
It's time to re-prioritize. I think this is what having a terminal illness is about - constantly re-prioritizing and allowing this path to shape us - one-final-time.
She urged me to see myself as I truly am - a soul and a light walking this earth. She stated that I am not the pieces of jewelry I once created; I am not the pastries I once baked; I am not the job I once held; or the home I once kept. Those things are not who I am. I am a human-being, not a human-doing. After a good cry and hugs, we ended our visit.
I am a human-being....not a human-doing.
Not long after returning home, our Doctor called. She said the amount of pain and spasms were troubling her, as they would only continue to worsen. She had given the matter considerable thought and wanted us to meet with my Radiation Oncologist to discuss another round of palliative radiation to possibly aid in managing the pain.
Today, we met with my Radiologist. He pulled up my scans and charts and after determining the exact areas causing the most pain, determined that additional radiation to those areas will not be possible. We have done the maximum amount of radiation to those areas that my body will allow. To do additional treatments would cause more harm than good. It could very possibly cause harm to surrounding organs or cause a bowel perforation - none of those are good outcomes. So, we will continue our current course.
It is time to re-prioritize and re-focus. It's time to focus my dwindling energy where it can do the most good....sending love, prayers and light out to and for others. Spend time in prayer and meditation to understand just what I am supposed to be learning at this stage - Just when you think you cannot possibly delve deeper on this journey, you realize, you haven't even scratched the surface.
This can be such an emotional roller coaster just when you think you have reached a place of peace and acceptance, you have a day when you think, "well this totally sucks!", and you find yourself working through the grief and sadness all over again.
As I walk and often stumble my way through this, I will be working hard on letting go of my illusion of control, spending more time in prayer and sending much love and light to all of you!
Blessings,
Mandy
We were able to meet with her this week. We discussed the increasing symptoms, pain and fatigue. I've also been experiencing abdominal and back spasms. The abdominal tumors and those in my ribs have begun a constant painful assault. The abdominal spasms are located in an area where a tumor has wrapped itself around the muscle. We've been trying to manage these through pain meds and muscle relaxers. Unfortunately, the pain and spasms continue to worsen.
The large tumor is beginning to push further upward into my sternum area - this is not only painful, it is causing wicked reflux.
We are adjusting my med routine to try and manage all of this, however, this is where my stubbornness also kicks in. At this time, I refuse to be stuck in a drug-addled stupor all day. I want to be as lucid as possible for as long as possible. One day, my body won't give me a choice and the pain will win out - until then, I'm digging in my heels.
We also discussed an increase in anxiety that has manifested in the last couple of weeks. I told her that I was unsure where it was coming from. She calmly and softly informed me that it is grief. As soon as she said it, I knew she was correct. She told me that I am grieving my old life. She handed me the box of kleenex and I told her that I am grieving - I am grieving the person I once was; the life I once lived; and what will never be again. It is incredibly heart wrenching to come to terms with the fact that my life will now be spent on the couch, in the bed and occasionally, I will get out of the house for a doctors appointment and if I'm feeling particularly spunky - Target.
My Doctor stated that it all comes down to perceived control, when in actuality, we have no control whatsoever, over any of this. She encouraged me to determine what I really, truly need to accomplish / complete - do it and literally let the rest go.
It's time to re-prioritize. I think this is what having a terminal illness is about - constantly re-prioritizing and allowing this path to shape us - one-final-time.
She urged me to see myself as I truly am - a soul and a light walking this earth. She stated that I am not the pieces of jewelry I once created; I am not the pastries I once baked; I am not the job I once held; or the home I once kept. Those things are not who I am. I am a human-being, not a human-doing. After a good cry and hugs, we ended our visit.
I am a human-being....not a human-doing.
Not long after returning home, our Doctor called. She said the amount of pain and spasms were troubling her, as they would only continue to worsen. She had given the matter considerable thought and wanted us to meet with my Radiation Oncologist to discuss another round of palliative radiation to possibly aid in managing the pain.
Today, we met with my Radiologist. He pulled up my scans and charts and after determining the exact areas causing the most pain, determined that additional radiation to those areas will not be possible. We have done the maximum amount of radiation to those areas that my body will allow. To do additional treatments would cause more harm than good. It could very possibly cause harm to surrounding organs or cause a bowel perforation - none of those are good outcomes. So, we will continue our current course.
It is time to re-prioritize and re-focus. It's time to focus my dwindling energy where it can do the most good....sending love, prayers and light out to and for others. Spend time in prayer and meditation to understand just what I am supposed to be learning at this stage - Just when you think you cannot possibly delve deeper on this journey, you realize, you haven't even scratched the surface.
This can be such an emotional roller coaster just when you think you have reached a place of peace and acceptance, you have a day when you think, "well this totally sucks!", and you find yourself working through the grief and sadness all over again.
As I walk and often stumble my way through this, I will be working hard on letting go of my illusion of control, spending more time in prayer and sending much love and light to all of you!
Blessings,
Mandy
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