I've probably said this every day for weeks, but today was another emotional and eventful day. It began with a meeting between me, Jon, Staci, Levi and our estate planning attorney, Dan Farr. Although it's important and appropriate to discuss all these details it is always very difficult for each of us. I did my first will many years ago when my children were small and I wasn't faced with a serious illness. It takes on such a different context when you think you could die next week, next month, or next year. I am appreciative that we all had the opportunity to sit down together and come to an understanding of Jon's wishes and the content of his will.
Next, we all went out for breakfast at The Kettle in Enumclaw which is one of the Nichols families favorite places and an early breakfast date for Jon and I when we first started dating. We returned home in time to meet with the social worker who discussed any family, social or emotional needs that we might have. She provided with information on how to proceed at the time of Jon's death and how to plan a funeral. Thankfully, Staci is taking on some of the leg work on that for me. It seems morbid, sad and I just can't do it right now but I know Staci is right and we need to be prepared when the time comes. I am appreciative that she is willing to do this. Levi stayed most of the afternoon and had was sent with a list of errands from Jon for the rest of the day.
Next came them home-visit nurse. She discovered Jon's blood pressure had dropped to 60/40 and immediately called his oncologist to make some adjustments in his medications. They are stopping the lasix and nanadol and adding some new drug that is supposed to diminish the ammonia in his blood so he can think more clearly and help his bowels move along. Of course nothing is simple, Staci and Kristi stopped to get it on the way to the airport and the pharmacist didn't have all the information they needed to fill the appropriate prescriptions. I just received a call from the nurse that everything is ready to go and I can pick it up while Jake and Ann are here with Jon. Tony, Kristi and Tonya all stopped by today, too.
Jon continues to buy sporting goods equipment and planning camping trips. He remains determined to beat this thing. I have to admire his tenacity. Tony figured the worst case scenario is that we can set up his new wall tent in the back yard and spend the night with him out there! He also asks me every time I give him a pain pill why I just don't find a doctor who will cut out that huge tumor!? I told him I've been trying for the last 2 1/2 years and so far don't have any takers. He is and will always remain quite a character.
Tomorrow Cathy Mortell is Jon-sitting, Tonya is lined up for Thursday so Kelsey and I can do a marathon counseling session and Kristi is on for Friday. With any luck my parents will be here by Thursday night and we can settle into some type of routine.
As always, thank you to everyone for all of the phone calls, text messages and emails. I know that I suck at returning them but I truly have my hands full with juggling all this. I appreciate every one of you and will answer you when time allows.
Tuesday, April 14, 2009
Monday, April 13, 2009
Sunday, April 12, 2009
I feel like it has been weeks since I've written anything so much seems to be happening so fast. Since Friday there has been a trail of friends and family traveling through our home.
Kristi was kind enough to arrive early on Saturday morning to allow me time for a bike ride which always helps me maintain my sanity. I then was able to visit Maelie at the hospital to give her her Easter Basket (she got out today and is doing fine) and finally got myself a haircut. When I returned home Staci, Kristi, Tony Tonya, Kyle, Levi, Ericka and Wyatt were there for our Easter Eve celebration. I've learned every holiday must have an eve associated with it if we are going to make the rounds with all the families. Since I was cooking Easter dinner on Sunday we all settled for frozen lasagna, salad and french bread with hot berry pie and ice cream for dessert. Not bad for a quick, thrown together dinner.
When I first arrived home Jon was in bed with Kristi, Tonya and Staci rubbing his back and skin brushing his feet. He really has quite a harem going. We were following all of the medication instructions and I would say Jon was definitely not in pain but boy oh boy was he loopy. He is quite humorous when he's all doped up but we decided on Sunday to back things down a bit to provide a bit more lucidity.
We managed to make it to church on Sunday morning albeit a half hour late. After church Elizabeth, Kelsey, Nadine and William Mortell did the customary Easter Egg hunt. Liz was the lucky one to find the golden egg with the $20. Cathy and I made dinner while Jon and Bill did some visiting. (I'm not sure what all Jon said but I warned Bill in advance it might not make much sense). It was great having my kids together at home for the first time in a long time and the Mortell family is always a blast.
Staci spent the evening with us and she and Jon were able to catch up on some things. She will be back tomorrow along with Rex to take care of Jon while I work.
Kelsey is still up and down. What seems to overwhelm him the most is all the conflict in emotion and the sadness feels when he sees Jon so weak and disoriented. We are receiving lots of support from his friends and their parents and we are both scheduling massage and counseling appointments this week.
Levi and Erika were able to spend Easter with Ericka's family and today was to be the big day for Wyatts first taste of rice cereal. Maelie was out of the hospital in time to spend part of Easter with them, too. Levi's stress level is still running high and I wish there was more I could do to minimize it for them.
I just took a hot bath and am ready to give Jon his nightly skin brushing. The hospice nurse visits again tomorrow.
Last but not least, Audrey is home from the doggie hospital and snuggled up with Elizabeth at home :)
Kristi was kind enough to arrive early on Saturday morning to allow me time for a bike ride which always helps me maintain my sanity. I then was able to visit Maelie at the hospital to give her her Easter Basket (she got out today and is doing fine) and finally got myself a haircut. When I returned home Staci, Kristi, Tony Tonya, Kyle, Levi, Ericka and Wyatt were there for our Easter Eve celebration. I've learned every holiday must have an eve associated with it if we are going to make the rounds with all the families. Since I was cooking Easter dinner on Sunday we all settled for frozen lasagna, salad and french bread with hot berry pie and ice cream for dessert. Not bad for a quick, thrown together dinner.
When I first arrived home Jon was in bed with Kristi, Tonya and Staci rubbing his back and skin brushing his feet. He really has quite a harem going. We were following all of the medication instructions and I would say Jon was definitely not in pain but boy oh boy was he loopy. He is quite humorous when he's all doped up but we decided on Sunday to back things down a bit to provide a bit more lucidity.
We managed to make it to church on Sunday morning albeit a half hour late. After church Elizabeth, Kelsey, Nadine and William Mortell did the customary Easter Egg hunt. Liz was the lucky one to find the golden egg with the $20. Cathy and I made dinner while Jon and Bill did some visiting. (I'm not sure what all Jon said but I warned Bill in advance it might not make much sense). It was great having my kids together at home for the first time in a long time and the Mortell family is always a blast.
Staci spent the evening with us and she and Jon were able to catch up on some things. She will be back tomorrow along with Rex to take care of Jon while I work.
Kelsey is still up and down. What seems to overwhelm him the most is all the conflict in emotion and the sadness feels when he sees Jon so weak and disoriented. We are receiving lots of support from his friends and their parents and we are both scheduling massage and counseling appointments this week.
Levi and Erika were able to spend Easter with Ericka's family and today was to be the big day for Wyatts first taste of rice cereal. Maelie was out of the hospital in time to spend part of Easter with them, too. Levi's stress level is still running high and I wish there was more I could do to minimize it for them.
I just took a hot bath and am ready to give Jon his nightly skin brushing. The hospice nurse visits again tomorrow.
Last but not least, Audrey is home from the doggie hospital and snuggled up with Elizabeth at home :)
Friday, April 10, 2009
PS
Thank you to everyone for your many phone calls, text messages and emails. I am too overwhelmed right now to answer you all individually but I want you to know that the love and support of my friends and family is what has and continues to sustain me.
Hospice
Today was another eventful day. Krist was here first thing in the morning with a extra hot latte for me and a mango vivano for Jon. I went into work for a few hours just to get the necessities done and was home by 11 to meet with the Hospice nurse. She was very kind and informative. We discussed our goals (managing Jon's pain, improving his appetite.) She went over his meds and was absolutely mortified to find that the last pharmacy had given him the wrong long acting Oxycontin, instead it was just a higher dose of the short acting that he was already taken. The way it was labeled was absolutely impossible to tell the difference until she looked at the pills themselves. So basically he has been under medicated all last week. No wonder he has been so miserable! I thought the nurse was actually going to break into tears knowing how much Jon has been suffering. She held his hand, looked him in the eye and said "Jon, you don't have to hurt like this." She phoned in the correct prescriptions and Granny and Steve picked them up for me on their way to visit.
We started him on the new dose of long-acting Oxycontin and he had some immediate improvement in his pain. He is very loopy and confused...he even tried to get me to put his suspenders on his address book??!! but he does not have any pain to speak of. I gave him a bath (yikes was that bathwater black!), a good skin brushing, and a bowl of ice cream with strawberries. He is the most relaxed I have seen him in months. He is being very sweet and appreciative. When he was in the tub he looked at me and said "Doc, I can't believe how beautiful you are." It nearly made me cry.
Kristi continues to be our angel. She spent the day helping with Jon, fed us dinner, and is now on the way to pick up Staci from the airport.
Kelsey is feeling overwhelmed with emotion and is processing in his own way...time alone and the time with his friends. He says he's OK and dealing with it all but I worry constantly about him.
Levi just returned from the hospital where Maelie was just admitted for intestinal ileacus. She has been vomiting and in pain all week. Emilie has had her back and forth to the doctors who finally admitted her today for tests. They are planning on keeping her overnight for IV fluids and bowel rest. Levi, Ericka, and Wyatt are all snuggled at home for a little bit of piece and quite. Today was Ericka's day for a complete meltdown and Levi was right behind her.
Elizabeth has stopped vomiting but her little dog Audrey is very sick from being neutered earlier this week. She is currently taking her from the regular vet to the emergency vet for constant monitoring over the weekend. Please add our little dog to our long, long list of prayer request.
The hospice nurse expects that Jon will be pretty loopy for about three days but then seriously expects him to be more functional when he gets used to the higher dose of oxycodone/Oxycontin. I am really appreciating the pain being under control and the turn-around in his demeanor. It makes me cry to think he has been suffering like this needlessly. I am hoping for a few better days ahead.
As for me, I am just putting one foot in front of the other.
We started him on the new dose of long-acting Oxycontin and he had some immediate improvement in his pain. He is very loopy and confused...he even tried to get me to put his suspenders on his address book??!! but he does not have any pain to speak of. I gave him a bath (yikes was that bathwater black!), a good skin brushing, and a bowl of ice cream with strawberries. He is the most relaxed I have seen him in months. He is being very sweet and appreciative. When he was in the tub he looked at me and said "Doc, I can't believe how beautiful you are." It nearly made me cry.
Kristi continues to be our angel. She spent the day helping with Jon, fed us dinner, and is now on the way to pick up Staci from the airport.
Kelsey is feeling overwhelmed with emotion and is processing in his own way...time alone and the time with his friends. He says he's OK and dealing with it all but I worry constantly about him.
Levi just returned from the hospital where Maelie was just admitted for intestinal ileacus. She has been vomiting and in pain all week. Emilie has had her back and forth to the doctors who finally admitted her today for tests. They are planning on keeping her overnight for IV fluids and bowel rest. Levi, Ericka, and Wyatt are all snuggled at home for a little bit of piece and quite. Today was Ericka's day for a complete meltdown and Levi was right behind her.
Elizabeth has stopped vomiting but her little dog Audrey is very sick from being neutered earlier this week. She is currently taking her from the regular vet to the emergency vet for constant monitoring over the weekend. Please add our little dog to our long, long list of prayer request.
The hospice nurse expects that Jon will be pretty loopy for about three days but then seriously expects him to be more functional when he gets used to the higher dose of oxycodone/Oxycontin. I am really appreciating the pain being under control and the turn-around in his demeanor. It makes me cry to think he has been suffering like this needlessly. I am hoping for a few better days ahead.
As for me, I am just putting one foot in front of the other.
Thursday, April 9, 2009
I'm back for now
Hi everyone. It's been a while since I have had anything to say. Mostly because I have been having a complete emotional, physical and psychological breakdown. I had some time with my family back east (my sister, Barbara and her family) and I have now regrouped and am able to move forward with this most difficult portion of our lives.
Jon has been slipping rapidly in the last few weeks. He is very confused and paranoid (secondary to liver failure and narcotics) and in tremendous pain. He sleeps 20 hours a day and for the last week could maybe get up for a few hours to do some work at his desk or watch TV. Monday and Tuesday seemed the usual, but on Wed he slipped to a much more serious level. When I left for work I had asked him if he wanted some breakfast. He replied, "No, I'll get up in an hour and make it myself" (his usual MO). When I called to check on him at lunch he said that he hadn't been up, needed to eat, couldn't get up to feed himself, and hadn't taken any pain meds. I started calling family members to help and was able to reach our niece, Ann Lenting, who was close by and went over to feed Jon. When I came home form work he shared a light dinner with me of cheese, crackers and fruit then went to be early. His pain was reasonably under control at that point.
In the middle of the night he awoke in pain and said, "Doc, I just can't take this anymore. I hurt all of the time, I can't think and I can't get out of bed." I asked him what I could do for him and he said "End it". I cried all night and we lamented the fact that we both thought we could beat anything together but as Jon says, "It is what it is." I had to chuckle when right before we fell back asleep he said, "Maybe I'll feel better in the morning." Every day since he has been diagnosed he kept thinking that one day he would wake up and feel better, like when you've had a bad flu for a week.
This morning we had an appointment for blood draw, Dr. Linn and chemotherapy. It was apparent that he was really weak and fortunately Kristi accompanied us to the visit. The blood draw was first and then we saw the doctor. Jon's blood chemistry's were so bad that the doctor refused the chemo. I told him that Jon has had difficulty controlling his pain and I did not think the oral meds were adequate. At that point the doctor asked if we had considered in home Hospice. I asked him to explain exactly what that meant and basically we would have a nurse come to our home twice a week to manage IV meds for Jon (dialauded, his favorite) and address any medical, home or social needs that we have. We have an appointment with the hospice nurse tomorrow morning.
Jon received IV hydration and the meds that bind his elevated calcium so hopefully tomorrow he will be a little more cognizant. We came home and he immediately went to bed. Tonya and Tony came over to make dinner and Levi, Ericka, and Wyatt came by for dinner and a visit. Just to add to the drama of the day Elizabeth ended up with violent food poisoning and her teacup Yorkie was sick after surgery on Monday. Kelsey went up to Bellevue to take care of his sister and get her dog back to the hospital. He should be home any minute.
Right now we are all just physically and emotionally exhausted. My Mom and Dad are on there way out as soon as they can get a flight as is Staci. Hospice will provide us some support but we are now organizing friends and family members to sit with Jon 24/7. I can do most of it, but still need to work MWF so we are working out a schedule for those days.
Thanks for everyone who telephoned today, I'm sorry but I just wasn't up for much conversation. I am on my way to bed for the night.
Thanks to everyone for your continued prayer and support.
Jon has been slipping rapidly in the last few weeks. He is very confused and paranoid (secondary to liver failure and narcotics) and in tremendous pain. He sleeps 20 hours a day and for the last week could maybe get up for a few hours to do some work at his desk or watch TV. Monday and Tuesday seemed the usual, but on Wed he slipped to a much more serious level. When I left for work I had asked him if he wanted some breakfast. He replied, "No, I'll get up in an hour and make it myself" (his usual MO). When I called to check on him at lunch he said that he hadn't been up, needed to eat, couldn't get up to feed himself, and hadn't taken any pain meds. I started calling family members to help and was able to reach our niece, Ann Lenting, who was close by and went over to feed Jon. When I came home form work he shared a light dinner with me of cheese, crackers and fruit then went to be early. His pain was reasonably under control at that point.
In the middle of the night he awoke in pain and said, "Doc, I just can't take this anymore. I hurt all of the time, I can't think and I can't get out of bed." I asked him what I could do for him and he said "End it". I cried all night and we lamented the fact that we both thought we could beat anything together but as Jon says, "It is what it is." I had to chuckle when right before we fell back asleep he said, "Maybe I'll feel better in the morning." Every day since he has been diagnosed he kept thinking that one day he would wake up and feel better, like when you've had a bad flu for a week.
This morning we had an appointment for blood draw, Dr. Linn and chemotherapy. It was apparent that he was really weak and fortunately Kristi accompanied us to the visit. The blood draw was first and then we saw the doctor. Jon's blood chemistry's were so bad that the doctor refused the chemo. I told him that Jon has had difficulty controlling his pain and I did not think the oral meds were adequate. At that point the doctor asked if we had considered in home Hospice. I asked him to explain exactly what that meant and basically we would have a nurse come to our home twice a week to manage IV meds for Jon (dialauded, his favorite) and address any medical, home or social needs that we have. We have an appointment with the hospice nurse tomorrow morning.
Jon received IV hydration and the meds that bind his elevated calcium so hopefully tomorrow he will be a little more cognizant. We came home and he immediately went to bed. Tonya and Tony came over to make dinner and Levi, Ericka, and Wyatt came by for dinner and a visit. Just to add to the drama of the day Elizabeth ended up with violent food poisoning and her teacup Yorkie was sick after surgery on Monday. Kelsey went up to Bellevue to take care of his sister and get her dog back to the hospital. He should be home any minute.
Right now we are all just physically and emotionally exhausted. My Mom and Dad are on there way out as soon as they can get a flight as is Staci. Hospice will provide us some support but we are now organizing friends and family members to sit with Jon 24/7. I can do most of it, but still need to work MWF so we are working out a schedule for those days.
Thanks for everyone who telephoned today, I'm sorry but I just wasn't up for much conversation. I am on my way to bed for the night.
Thanks to everyone for your continued prayer and support.
Wednesday, April 8, 2009
An email I received today from Gus and Koreen Lamoureaux
COURAGE
Lorri,
Koreen and I just wanted to drop you a note and let you know that we have read Jon's blog from just about day one. We feel kind of helpless being so far away and both wish we were in the area to help out. I have called a couple of times but worry that maybe I depress Jon because eventually the conversation turns to his health. From reading the blog I can tell his health is slipping and just wanted you to give Jon a hug for us and wanted to let you know how courageous we think you are for standing by a man you knew for a very short time prior to his getting seriously ill. You will always be a hero to us.
As for jon a short life is probably inevitable so tell him when he gets to the other side to have a big one all tracked down for me. I'll be looking to shoot something.
I hope you keep up the hard work and that God gives you the stamina to see this through no matter the out come. I keep praying for that miracle, hopefully, it is just slow to come. Take care.
Love,
Gus and Koreen Lamoureux
Lorri,
Koreen and I just wanted to drop you a note and let you know that we have read Jon's blog from just about day one. We feel kind of helpless being so far away and both wish we were in the area to help out. I have called a couple of times but worry that maybe I depress Jon because eventually the conversation turns to his health. From reading the blog I can tell his health is slipping and just wanted you to give Jon a hug for us and wanted to let you know how courageous we think you are for standing by a man you knew for a very short time prior to his getting seriously ill. You will always be a hero to us.
As for jon a short life is probably inevitable so tell him when he gets to the other side to have a big one all tracked down for me. I'll be looking to shoot something.
I hope you keep up the hard work and that God gives you the stamina to see this through no matter the out come. I keep praying for that miracle, hopefully, it is just slow to come. Take care.
Love,
Gus and Koreen Lamoureux
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