Hospice

So on Monday January 23rd, I woke up at home, and knew, that today would be a rough day...Today was the day I was to get my Boy to hospice, so he can begin his passage home...I went and dropped my car off at the hospice house, and my MIL picked me up, and we went to the hospital to get Boy...Boy was not doing well this morning...having a very difficult time breathing...we waited and waited and waited for what seemed like days for the ambulance crew to get to us, for the transport...All I kept thinking was that I have GOT to keep my promise to Boy, to not let him die in a hospital....Luckily, he held strong, and the ambulance guys finally got to us...It was to be simple, get Boy and Girl into the ambulance, and it would be a short 5-10 minute drive to the hospice house...But there were no guarantees...no one could tell me for sure that he would not die on the way...I signed what felt like a million pieces of paper, basically saying, "Lets do this!"...

I think we got to the hospice facility in record time!!!

As soon as we arrived, we were taken to our room.  At this point, Boy was out in to regular street clothes...all fluids were stopped.  The only thing he had in him now, was oxygen, and a pain pump, where he could administer himself hydromorphone (10 X stronger than morphine) anytime he wanted.  He rested for awhile...The trip over took a lot out of him...When he woke up an hour or so later, he looked batter than he had in the past week...I made everyone leave the room, so we could talk...I asked him what he wanted..I explained again, that he would only have a few hours to a day or two left to live, and that I would do and get him anything he wanted...He said he wanted his son and daughter to come see him, and that he wanted pizza and beer...LOL...my baby...he hasnt eaten solid food in months, but that is what he wanted....I told him to rest, and I would get it done...I called his aunt, asked her to go get our Bug from school and bring her to us...I called his son in MO, and told him that he, his wife, and our grandkids needed to come up...and I sent his mom to the store to stock us up on beer...And I sat....and didnt leave his side.....and I held his hand, and rubbed his head....And eventually, people started flooding in to see my Boy...

It was a wonderful night....it was so much more than I could have EVER asked for, for him...there were old friends...cousins....his son and our Bug...his daughter in law....his grandkids....and there was pizza and beer....he told me to update all of our online friends as to what we were doing that night....and we had SO many people from all of the world celebrating his life with us...people commenting, and posting pictures, and having pizza and beer with us....

We have been blessed to have SO many dear friends and family members all over, that have been there with us and for us on this horrible journey that we have had to take...We can never thank you all enough or tell you all enough how much you mean to us....

Breathing time.........

And Yet............

While Boy was resting on that Sunday, on our anniversary, I got to meet with the Dr...He said that Boy seemed to be doing somewhat better once we had relieved some of the fluids out of his body...He asked my permission to give him another half of a dose of that medication...I gave my permission...The Dr also told me, that if Boy continued to remain stable, we could transport him to a hospice facility on Monday...He could not guarantee me that he would survive the ambulance trip, but with this medication and releasing the fluids from his body, this would be his ONLY chance to leave the hospital...I told him I would talk with Boy when he woke, and let the nurses know of our plans...Boy finally woke after hours of sleep...He was wearing down...he kept looking more frail, and more tired...It was time, time for me to have THAT talk with him...I reminded him of what the Dr's have told us...That this cancer was going to kill him...that there was no option for chemo....no option to prolong his life...and then I asked him the hardest question I think I ever have...I asked my Boy, where he wanted to be when he died...He cried...he sobbed....he told me he wanted to go home...I told him that wasnt an option...He was too far gone for in home care, and that it wouldnt be fair to Tana, to bring him home once again from a hospital, to have him die in our house within hours or days...So we talked, and we cried and we hugged, and we finally decided to go to a hospice home here in town...I told the nursing staff of our decision and they made the calls to have someone come down to the hospital and meet with me...Boy held me tight...he begged me and pleaded with me, to not let him die in a hospital...he had spent SO much of his life in a hospital over the last 6 months, that he did not want to die in one...I wiped his tears, and kissed his forehead, and told him I would do everything in my power, to not let that happen...So our day went on...I sat by his side...I took care of him...I did everything I could, to make him comfortable, and above all, and always, to love him...

This day, above all, I kept thinking about our lives together...we had made it to ten beautiful years of marriage...we had had our difficulties in the past, but for the last few years, we were good, we were solid, we were a team...He had been a stay at home dad for the last few years...he was the house cleaner, the taxi dad, the parent who went to all of the school functions...he was the parent to play with Tana everyday after school, and all of her breaks off of school...he was her rock...they would fish, and color, and play in the water, he would bathe her and feed her, and help her clean...He went to church with her, and helped her practice softball and basketball and swimming...They are an amazing duo...I started thinking of all of the things he will miss in our lives, when he passes...all of the things he will never get to see....I was beside myself...I didnt want him to leave me...I didnt want to be a widow at 35 years old...I didnt want to be a single mom...i didnt want to be alone....

I had to go home that night...I needed to pack up some of our things to have with us at the hospice house...I did not plan on leaving that house, until the very end...I needed to get a good nights sleep, in our bed...I needed to write....that night at home, I wrote this letter to my Boy, and posted it on his Facebook page...

I know you will never see this...But I love you so deeply, with all of my heart...I know soon, I will have to let you go forever...I know it, and you know it...I just want you to know, and I know for a fact, after today, that you do, that the last ten years of my life, with you, have been more than I could have ever imagined when I first laid eyes on you...We have THAT kind of love...it will never be replaced...I know you have told anyone who would listen in the past couple of days, that you need me to remarry, so I can be taken care of...I am good hunney...I am strong, and I will take care of me and our baby...I love how, you somehow woke up about 12:10am today, and was able to tell me happy anniversary....I love how later, you couldnt get enough breath to speak, but you touched your heart and pointed to me...I told you I loved you too...I love how in the morning, when you woke again, that you pushed the button and called all of your nurses in, and we so adamant that they had to get you in the shower, to get you clean, for our anniversary...I told them it was okay, and to do that for you...You are still, always thinking of me...they had to wheel you into the shower, and clean you and wheel you back to bed, but after this long hard week, you had to be clean for me, for our anniversary...Your daughter in law Kaela  helped me understand, that for a reason unknown to us all, your angels need you now, more than I do...she truly believes, and i do as well, that you need to not be on earth, to protect bug and I...that you have to be up above, to be able to protect us like you want to...And I am okay with that...I know that all of the men in our lives, are waiting there, to welcome you in...I know that you will no longer feel any pain...I know that up there, you will be whole again, and you will be so happy...If it were not for our Bug, please know that I would end my life as you ended yours, so that i could still be with you...but I cant...there is so much I need to be here on earth for...So much I need to teach our bug, but know, once that is complete, I will once again, come be with you...Of my so far short 35 years, I have been blessed to have been able to spend 10 of them with you, loving you...If you make it through the night, and if you make the transport with me tomorrow to the hospice house, we hopefully will still have a couple of days...and I will have been able to keep my promise to you, to not let you die in a hospital...I know you understand why I am not with you now...and why I had to get away, and take care of me, and try to sleep...I feel there is still so much I need to say to you, but I know, if you go, I also, have said enough to make you comfortable...I am forever in your arms Troy, with the deepest love ever possible, Kendra…. 

Tomorrow will be the big day.....

The story continues....

So on 1/17/12, I got up to the hospital to meet my Boy...They had already gotten in an IV, and were giving him antibiotics, and fluids...that line blew his vein, and as I walked up to his ER room, his mom was outside crying...She said they just kept poking him, and digging in his arm to try to get a new IV started, and he was in so much pain, she had to step outside...Oh hell no....So I walked in just as Boy was screaming as the nurse was digging in his arm looking for a vein...I told her to back the fuck off, and call in the PIC line team...She started to object, and I made sure she knew I wasnt playing around...I told her she is not allowed to stick him anymore...Get the PIC line team up here, and put in a new PIC line....So that is what she did...After awhile, the PIC line team came in, got a line in him and they were able to continue running antibiotics and fluids...I got to finally meet his internal Doc, as well as his new oncology Doc...both seemed very nice...We were basically told, Boys labored breathing was due to either pneumonia, or the cancer that has spread into his lungs...They will run antibiotics pretty much 24/7 for the next few days, and if it was in fact due to pneumonia, he will get better....his breathing will get better...If it does not, then it is all due to the cancerous tumors in his lungs...SO we shall wait and see, let the Docs do their job, and see how it goes....

Over the next few days, I did not leave the hospital...Boy had another blood transfusion, due to low hemoglobin levels...He also had very high (over 30,000) white blood cell counts...Boy did not improve much at all, and I was scared...He signed the papers, and I got medical power of attorney over him, in order to make any tough decisions should they happen and he was unable to...He had some great visits with our Tana during these days...She was able to come up to the hospital almost every day after school and see he and I...Probably the main thing I remember from Tuesday through Saturday, is how much Boy kept telling me he didnt want to die, he wanted to go home, and he wanted to do chemo to give himself more time...

On Friday afternoon, I met with a child counselor at the hospital...They have a program in place, to help families explain to young children about death, and what is happening with their parent...I asked for their help in telling Tana...Friday afternoon I picked Tana up from school, we went and grabbed something to eat, and then went back to the hospital...About 5 minutes before the counselor was going to come get us, for our 'talk', Tana was joking with Papa, and telling him that as soon as he got better, they would go to Sleepy Hollow and go sledding...Ugh....jab a knife in my heart...So the counselor came in and Tana, Jeanne and I went out into the waiting room area with her, to have the talk with Tana...The counselor was wonderful...She helped guide me with my words, and let Tana know it was okay to be sad that her dad was going to die...It feels like we talked for hours, but it was probably much shorter...When we were all done talking, the three of us girls were able to each pick out a special blanket that volunteers had made for the hospital, to let Boy use until he was to die, then it would be ours to keep forever...I went home that night, for the first time in days, and slept with Tana...

About 7:30 Saturday morning, I got a call from the hospital, saying Boy was not doing well at all, and I should get back up to the hospital...He was having a very difficult time breathing, and kept getting anxious and excited, which would make his breathing worse...I asked them to increase his pain meds, and anxiety meds, to calm him down...he did, and finally rested some...A few hours later, we met with the oncologist again...He said the antibiotics were not working, ie, it is the cancer causing Boy so many problems, not pneumonia...He said, in his opinion, Boy will not get well enough to do chemo again...He estimated a matter of hours to a few days, before my Boy would die, and leave us forever...He said he has one more thing he can try...He can give Boy a medication, that will get rid of all of the excess fluids in his body, in hopes that it would help him breathe better, by getting some fluid off of his lungs...I told him to do that...Doc said if this did not work, Boy would not be able to leave the hospital to go home or to Hospice, as he more than likely, would not survive the trip...he advised us to call family members to come say their last goodbyes...This is what we did...And I hoped and prayed, Boy would make it until Sunday, so we could have our 10 year wedding anniversary together...

We called in the pastors of his church, aunts, uncles, cousins, friends and his grandmother...Besides her own hospital stay for a fall, his grandmother had not been inside a hospital since his grandpa passed away in 1995...We all figured she would not come...she hated hospitals, and wanted nothing to do with them...And grandma finally came...She looked so afraid, and so out of place, but she came, and she cried...something else i have never seen her do...So everyone took turns coming up to the hospital over the next 24'ish hours, to see Boy...He recognized every single person that came into his room to visit with him...he was able to have a little bit of conversation with everyone...I tried my best, to let him have time with his visitors...I didnt want to intrude, or hear any personal conversations...Every now and then, Boy would get scared, or nervous, and have someone come out and get me...He needed to know I was right there with him...I dont know how many times in a short few days, that I told him "I am right outside the door, it's okay, I'm right here"...

I was sleeping on and off in a chair at boys bedside Saturday late night...At about 12:05 Sunday morning, 1/22/12, Boy woke right up, sat up in bed, woke me up, and told me happy anniversary...It was our 10 year wedding anniversary...I told him happy anniversary too, and got him comfy back in bed, and we fell back asleep for about an hour or so...At roughly 2:00 am, Boy sat up in bed again, wide awake...he was having a VERY hard time breathing...he couldnt muster any words to me, but he pointed to his heart, then to me....I told him that I know he loves me, and that I loved him too...I had went out about 5:00 am to get some coffee...trust me, hospital coffee is NOT all that great, especially after days of it...When I got back about 15-20 minutes later, Boy was upset, and throwing a fit about something...Neither the nurses or his mom could understand what he wanted...I leaned in close, and listened to him tell me what he wanted...he wanted the nurses to get him out of bed, and give him a full shower...He hadnt been out of bed much at all since Tuesday, and had only had bedside sponge baths since he came in...He said, for our anniversary, I need to be clean and smell good for you...my heart was breaking...So the nurses got him out of bed, in a wheel chair and got him into the bathroom and gave him a nice hot, long shower....Then they wheeled him back into bed...He  then went to sleep, and rested for awhile....

Again....time for Girl to take a breather.......

Boy Gets Scared....

So, my Boy has been having a rough time breathing the past couple of days...Whether it is from the cancer in the lungs, pneumonia, or the other infection, he doesn't feel well...This am, he went to go lay down in bed, and yelled...I ran in there, and he was almost in tears...He got scared, because his breathing became VERY hard...I kept our Bug out of school today, due to snow, and due to I want her home with us...So I called Boy's mom...Told her what was going on, and told her she could either come take him, or come take our Bug...She came to get Boy...Which is good...She is better at driving in the snow than I am...So Boy is, yet once again, on his way to the hospital...This will be time 4 in a little less than one month...I will go meet them in a bit...

Boy Loves Girl, Girl Loves Boy...

A Rant I Had....

Here is a rant I had at the hotel, the night we found out Boy would lose his life to this cancer:

This may be my last rant of the night...it may not be....for those who dont know me, I have lived through a lot....i have been raped...I have been beaten...i have been mentally abused..I have lived with mental problems...I have lived through drug overdose, and being in a coma...I have lived through many stays at mental hospitals, and way too many psych meds....I have lived with the fact that my fathers heart blew up within a week of me leaving the state...I have lived through my mother having strokes, and ultimately brain surgery which led her to live with me and my family when my Bug was only 9 months old....I have lived through my husbands addictions, rehabs, and out of our home stays....I have NEVER once in my life, said that 'this isn't fair'...........until now...........and guess what? THIS ISNT FUCKING FAIR!!!!!! WE have never had a chance to be a fucking family..........it isnt fucking fair, that the love of my life will not be able to see his daughter grow up....it isnt fucking fair, that I will become a widow in my 30's.....it isnt fucking fair, that I will become a single mom....I will say it now....and I will say it again...this isnt fucking fair...........
***FUCK CANCER***

And the story continues....

So, Girl got to bring Boy home, just in time for Thanksgiving...It was amazing...I made two different kinds of soup...On Thanksgiving day, we invited Boys mom over to celebrate with us...I think, even though he wasnt feeling well, that was good for him...We all ate, Boy even ate a little bit!!! And we laughed, and joked...

Here we are, done with treatment!!! Boy should start feeling better soon, eating more, gaining strength, spending more time with Bug...That didnt happen...

Boy would have good days, and Boy would have bad days...Some days he would try to eat real food, some days he wouldnt...some days he would ask me to help him go sit outside in the sun, and some days he wouldnt...some days he would be awake for the majority of the day, and some days he wouldnt...

On 12.19.11, Boy asked me to take him to the ER...he was REALLY not feeling well, he had passed out a couple of times, and his chest was hurting him...Off we went to our local ER...We get in there, explain his situation, medical issues, etc...The Dr's start running tests...Chest Xrays...Blood draws...Get an IV in him (Thank you to the Mercy Flight Team Captain <3)...Chest xray comes back bad...They are thinking he has a bad case of bacterial pneumonia that his body is trying to fight...Lets do a PET scan, to look around...Blood work comes back bad...Hemoglobin level is extremely low...Now they are talking blood transfusion...We will be admitted (fucking duh)...PET scan comes back bad...

For those who don't know, in Boy's case, a PET is very important...They give him something special to drink, wait a little while, and then put him through the machine...The drink they give him, can attach (in a sense) to cancer cells, tumors, etc, and light up...

Without any other tests, we are told Boy has 'abnormalities' showing up on his PET scan in his lungs, liver, kidneys, and bones...One thing we knew, was it was time to cry...Boy has NEVER had an abnormality show up on a PET scan, that wasnt cancer...

Boy ends up staying in the hospital for five days...Blood transfusion...Liver and Lung biopsies...Buttloads of antibiotics...Girl gets to take Boy home for Christmas...

Christmas day 2011, was a good day...Boy got to see his grandma for the first time in a LONG time...Girl cooked...Bug played...Boy rested....

12.26.11...Girl goes early morning day after Christmas shopping to find some good deals...Girl gets call from Boys Doc...Liver biopsy is back...it is cancer...Same type of cancer as before...Girl has to go home and tell Boy...

Boy handles the news okay...he said he knew...in his heart he already knew...Girl and Boy cry...

12.29.11  Girl takes Boy back to the hospital...Boy had passed out a couple more times...This time we went to the ER at his cancer hospital in Iowa City...We took with us, all of his test results from the hospital by home...Boy's pneumonia is getting worse...white blood cell count very high...Boys body is fighting both the pneumonia and some other type of infection the docs dont know...Docs change up his antibiotics, puts Boy on 5 different ones...Docs also change up his pain meds, due to the confirmed liver cancer...Girl takes Boy home for New Year's Eve...

Girl and Boy and Bug spend as much time together as possible...Girl cooks...We watch TV...We laugh...

01.05.12 Girl takes Boy back to the hospital...Boy started showing signs of a stroke...Head tilted largely to the left...Drool coming out of the left side of his mouth...Cant hardly use his left arm or hand...Talking nonsense talk...Not being able to stay awake for long...

More Chest xrays...more blood draws...oxygen...Neurological exams...Head CT Scan...We, again, get admitted...Chest xrays come back worse than they looked in mid-December...Infections are not going away...Docs have no concluded, that Boy did not have a stroke...his liver was not filtering out his pain meds as it should...They cut back on his pain meds ALOT...Said the other docs has prescribed way too high of a dose...Another change in antibiotics...Girl gets to take Boy home 3-4 days later...

01.13.12 The day we have been waiting for...The day we get to go meet with all 3 of our docs in Iowa City, to find out more about this spread of cancer...It has been nerve wrecking to have to wait this long...We go to have blood draws first, then plan on going to meet with radiation doc, and then neck surgeon doc, then circling back around to meet with chemo doc, who would have had time to read Boys blood draws...That didnt happen...Went to have blood draws, and chemo docs nurse said they cancelled our other appointments for the day, and that chemo doc would see us now...

Chemo doc is great...comes in, asks us what we know so far, so we tell him all we know...He says it isnt good...The cancer that we confirmed in the liver, is also attacking the lungs, kidneys, and bones...They dont need to do biopsies to know this...We need to have a bone scan done, to see how much it has spread into the bones...If it has not spread too much into the bones, we can do chemotherapy...It would be a once a week chemo treatment and every third week, Boy would wear home a chemo fanny pack, that would give him a lot of extra chemo for a few days...If the cancer has spread too far into the bones, we dont think the chemo option will be on the table anymore...

Odds?  Chemo doc was right...No one has an expiration date on them...No one can tell anyone when they will die...Best estimates based on previous patients that chemo doc has had...With no chemo, a few weeks, to a few months...With the chemo treatment, could be up to a year...Boy grabs Girls hand, and cries...

This suggested chemo treatment, will not kill Boys cancer...It will prolong boys life, but eventually, the cancer will win...Chemo doc says Boys quality of life will actually improve with this type of chemo...Once it gets into Boys body, and starts attacking the cancer, Boy will have less pain...For some reason which I still dont quite understand, this chemo will give Boy more of an appetite...Worst side effect, a bad rash...

Girl and Boy get a hotel room in Iowa City for the night...Neither one of us could even attempt the two hour drive home...Girl drinks, Boy takes his pain pills...Girl and Boy cry and hold each other all night...That night, I said the hardest words to Boy that Ive ever had to say...I told him that I will stand by his side and fight for as long as he wants to fight, and when he wants to be done fighting, we, as a team, will be done fighting cancer...

Boy wants to do the chemo treatments...Current day 01.16.12...We will call boys docs in Iowa City tomorrow am when they open, and ask for a referral to a cancer hospital here in town...We will not (hopefully) have to go back to Iowa City...

Breathing time.............

Boy Loves Girl, Girl Loves Boy...

http://www.youtube.com/watch?v=S-aPyU1o8iM&list=FLEhpGP7-
vlm3t7e3bR6EmFg&index=20&feature=plpp_video

http://www.youtube.com/watch?v=DmBSGlXqC4Q&feature=fvwrel

So here I was, cleaning the kitchen, and thought I had something to say....

So, true story, no shit....there I was, cleaning the kitchen, and realized, I had something to say....the kitchen cleaning, came to an abrupt halt...

For those who don't know the whole story, I will go back...

With my Higher Power's help, Boy and Girl will celebrate our 10th wedding anniversary in exactly 7 days...01.22.12...01.22.02...that is the date...When we got married, we had no money...we were living in Phoenix at the time...two of our best friends on Earth were our witnesses...we went to the justice of the peace...Boy wore nice jeans and a sweater, Girl wore a black mini skirt, a nice sweater type of top, and Harley Davidson boots...And we would have never had it any other way...

On our wedding day, we took the normal, regular vows most people take...To love and honor, in sickness and in health, etc, etc...

On our 10th Anniversary, I will take different vows with Boy...I will vow to:
...Make you laugh multiple times a day
...To you how very much I love you, with all of my heart, every possible chance I get
...Wipe the sweat from your brow, dry your tears, clean you, and make you as comfortable as possible
...Cook you whatever food possible, that you want to eat
...Help you with your lists and your letters you want to write
...Help our daughter grow into the very best woman she can be
...Help you with every last wish you have

Boy and Girl have this love
http://www.youtube.com/watch?v=ZDXZQTCLdrM