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.
Wednesday, June 21, 2017
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
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