I'll See You Again My Love

I am already crying and I haven't even typed a word yet. This has been such a difficult journey and my emotions go from being heartbroken to relief knowing he is not in pain, to joy when I see a part of him in the 3 beautiful gifts he left for us on this Earth. The kids seem to be doing ok and stepping in when I ask. They have complied with my "head of the household" decisions and have been very caring when I want to share a story or just be. They have each other and I know that they are have me too!

I was so touched by the people who came to pay the family their respects. There were people from Tom's class that introduced themselves to me as well as people he had worked with in his various jobs, people from our community and of course our "framily"!. Both of our parents introduced friends & some of their classmates, our distant relatives (meaning 2nd cousins & the Canucks), and a classmate of mine that I haven't seen in about 20 years. As many stood in line to give their condolences a memory would pop in my head that I had to share with them. It was good therapy for me to return a word/memory about how much they meant to Tom as well.

In this past week I have taken my time to go through the cards sent and moved at a turtles speed. I feel exhausted and know that this is just a part of the grief process, just the start. I have made many phone call and started to move accounts over to my name. I knew this would take a while, but I am just beginning to understand all the things Tom did for our family that I have not thought about in years. As many of you know he was the organized one in our household. A month back we went into our office and he was helping me with the bills. I live in organized chaos so papers/folder strewn everywhere is my "normal" Tom sat beside me and after a few minutes of me "finding" papers he looked at me and said "Oh baby, this is what I am so worried about" I looked at him and smiled and replied "It may not be done the way you would do it but I'll get it done, I've got this"

Thank you all for your love and prayers; not sure how I'd make it through without each of you! I have continued to have so much support from both friends and family. They have helped around the house and planning the next event. I am now focusing on Cody's open house and am glad that I have something to keep my mind occupied. This is also helping me to be motivated to do stuff around the house. I think that otherwise I would let the world go by for a while and I am not sure that is the healthiest thing in too much moderation! I will work to make him proud of what he's started. One of his last trips out of the hospital as we were on our way home Tom stated that he just wanted me to be happy.....I'll try for you.....I'll try. What helps me is knowing that this is not our final goodbye. There are still things to be done on this Earth, children to support and yet raise. However, someday I know that he is waiting for me to meet him where he will forever be pain free! I wrote this about a week ago and posted it on Facebook but thought it would be a appropriate way to end this blog:

I am Yours and You are Mine

A girl met a boy when in their late teens fate made its mark
A true love story when love lit the spark
She was 16 going on 17 and he almost 20 years old
A lifetime that they would have, neither one of them could have foretold
I am Yours and You are Mine

A couple years of dating it became serious quite fast
We were so young many people didn’t think it would last
We plowed onto together, always a partnership, hand in hand
Life had its bumps but on our feet we would land
I am Yours and You are Mine

Our wedding day was wonderful bright smiles & happy tears
We had great fun playing in Michigan for about 6 years
Then we bought our first home and had a bouncing baby boy
You so confident in your new role as a father which brought me great joy
I am Yours and You are Mine

Fourteen month later we became a family of four
You worked so hard & I was a more confident mom in our little home in Dorr
You loved your boys it was so plain to see
A few years later we completed our family with baby number three
I am Yours and You are Mine

We had some hard times too this I can not deny
Life had it challenges but we always seemed to get by
Many times I teased you and said you made me laugh more than cry
Always working for our family & playing hard too giving life your best try
I am Yours and You are Mine

Cancer took its best from you but you wouldn’t stay down
I did not hear you complain nor live life with a frown
You made the best of your years, you gave it all you had
Making memories for your family a great husband & dad
I am Yours and You are Mine

Even through your sickness you gave to your community too
Being involved in EMS, Relay for Life, Boosters President to name a few
A mark you would leave not realizing the footprints you would set
Amazing many with your drive more than we will ever know I bet
I am Yours and You are Mine

Twenty six years of marriage we were able to share
Living life to the fullest while giving Cancer its biggest dare
In sickness and health until death do us part
Knowing that someday in Heaven again I’ll give you my heart
because I know that forever I am Yours and You are Mine

Preprations

I have not been able to get through all the text, phone calls, and comments on Facebook. It has been a difficult day. I have spent the day preparing to say my final goodbye with my children by my side. The plans have been set and are as follows:

Viewing on Saturday June 6 from 2 - 4 and also from 6 - 8
Kubiak Cook
Wayland Chapel
312 N. Main St., Wayland, MI 49348

Memorial Service Sunday June 7 @ 2:30 with lunch to follow
Wayland Methodist Church
200 Church St, Wayland, MI 49348

Thank you again for your support & the loving comments that I was able to read. I know our family is surrounded with love!

My Beloved

It is with a heavy heart and great sadness that I must announce my love has passed away this morning @ 2:35. Thank you for respecting our need for family time. More will be announced at a later date.

Serenity

It has been another difficult week, I will not sugar coat it and tell everyone that I'm doing "Fine" Tom's new word is OK and that is at his best. This week I've realized that he should not be left alone. He was pulling himself up the stairs using the railing like it was a rope. I told him that from now on he's not to go downstairs for pain meds in the middle of the night but to wake me up. He has been good at listening to me. However he seems to get confused very easily as we have gone over his med list and times again and again. The kids are also coming into the living room to spend more time with Tom. I see the looks they give me when trying to converse with him. I am not trying to make this heartbreaking, but to honestly say how life is right now.

After Tom's trip to get his infusion on Tuesday and the troubles he had, we made the decision to call Hospice. Wednesday morning I got up and sat in the living room for the longest time telling myself I have to make this call. My heart didn't want to, but I know that this is what is best for Tom. However, for me it's just another piece of reality that we are onto the final stage. Luckily I had a soft kitty in my lap who didn't seem to mind my mindless petting as my heart and head had their little fight. Tom had wanted the infusion on Friday and so Hospice could not start until we had decided to stop the infusions. Hospice came into our home today and we have signed the necessary papers.

I believe that someday when I look back I will be glad that we called them and know that it was the right time. In some ways this is a relief knowing that Tom no longer needs to leave the home to get his medical care. All medicines as well as any equipment can be shipped to us. Back on Friday Tom told me that he wanted a wheelchair to be brought up to the infusion room. This was the first time he did not make the trip on his own accord. It was hard to push (anybody at work that has seen me push our departments cart can attest to the fact I don't drive well). But also to realize once again the road we are heading down. He was in such pain while sitting there that I was glad this time I remembered to bring his pain meds, but they still were only knocking his pain down to a 6 - 8. On Friday I looked around the room knowing that this would be one of our last trips and saw all walks of life. Cancer is not particular to who it gets. I saw many older couples but the one that got me was a young looking couple. She was on the bed and her husband sat kitty corner from me. I thought "that could of been us 20 years ago" and almost cried for them right then and there. I try to remember how blessed I am to have Tom by my side for 26 years.

I told the kids to be ready for people to be coming and going from our home. Tom seems to be at peace with this decision, but keeps checking with me to make sure that I am ok with it. I am more worried about what it is doing to the kids. Part of Hospice service is that we will have a social worker coming to the home and I hope that this will help us all as we transition into this last phase and beyond.

I want to thank all those who have been so generous to our family and the kind words that have been said. I know that I have a lot of prayer warriors that are asking for peace for all of us during this time. Tom has been able to talk to many classmates and old friends have called or stopped by. It has been good/hard for him but I keep reminding him that these people need a chance to talk with him as much as he has things to say to them. Tom has stopped using his cellphone as his hands are too shaky to type. I have his service on for a couple more days and try to look at it once a day which is about as much as I look at mine. After the 7th the phone will officially be turned off.

When Tom was in the hospital the second time and we had our first discussion with Hospice my mind kept going back to one of the prayers I had on my bulletin board above my head in my room growing up. It was the Serenity prayer and it helped me through many difficult times as a young teenager and into my adult life. I told a coworker about that when I came back to work. She printed it out for me and I posted it above my computer monitors at work. I look at it many times a day and repeat it to myself:

Goal 1 ~ We Made It

School is winding down fast and Summer is fast approaching. Katie has completed her track season & unfortunately was not able to participate much as she was injured. She had her last spring Orchestra concert and has one more banquet & two more weeks of class before her Freshman year is officially over. "The boys" have both completed school for this year. Cody graduated last night! It is such a bittersweet moment to watch the child you have fretted, corrected, cheered, and yes even threatened move into the "adult" world. What a proud and emotional time. Kyle and Cody both have summer temporary jobs and will be working this summer in the Holland/Zeeland area. I keep singing the song ~ Ain't It Fun ~ and especially the lyrics that goes through my mind "Don't go crying to you mama 'cause you're on your own in the real world". What songs they play nowadays :)

Tom continues to struggle most days. His INR levels bounce from 5 to 8 & the Oncologist prescribed as of today twice a week a dose of Vitamin K pill to hopefully bring & keep that number down to 4. Tom's bili number has been an average of 11. Every Tuesday and Friday Tom goes to the Cancer Center for Saline infusions as he is not able to drink enough liquids to keep his Kidney functioning at an appropriate level. The goal is to keep Tom home & out of the hospital and to help him be able to be here for Cody's open house in June. The plan is to continue this treatment plan into June and then call hospice after the open house. Tom is determined to see family and friends one last time. We talked with the Oncologist today celebrating that Tom's first goal of seeing his son graduate has been accomplished.

This past week we had our 26th anniversary. It's amazing the difference in thinking about our celebration of last year. Last year we were in FL walking the boardwalk and enjoying the sun. This year we spent time together in our home. Tom had no appetite and only took two bites of the little cakes we had to share. I have told others in the past that I would do this all over again in a minute. However, I do have to admit that I am glad I was blissfully unaware of where we would be today. Tom has stopped using Facebook and mostly his phone as his shaking has gotten so bad that it frustrates him to talk/type. His interest in the "world" has diminished and he uses his energy to talk about what needs to be done for graduation and what I and the kids will need beyond that. With all the pain medications that Tom is taking it has greatly affected his speech. He seems to always have a dry mouth and does not enunciate his words as before. Tom claims that everything sounds so loud. He speaks very softly due to this & with my hearing I feel terrible asking him to repeat himself when the task of talking is already difficult. Tom also seems to have difficulty processing thoughts. I will ask him a question and many times I need to repeat or wait while he tries to figure out his answer. A few times I have asked him and question and a while later (it feels like it's out of the blue to me) he will have a short answer. I have learned that even though I have let the question go, he seems to process it all the while I'm onto something else.

I have done my best to try to prepare myself and the kids that time is running short. I admitted to Katie last weekend: "It's so hard to watch your dad struggle, but yet I'm not ready to say goodbye. I would like to pick ~ none of the above~ but that is not how it goes...Either way Cancer Sucks" Kyle and I had a serious conversation about how Tom is struggling with life. Last night as I woke up in the middle of the night and released my tears I reminded myself again though I will get through this, it will not be easy. I think it was a good thing to have a good cry and at least this time I was not driving!

Last night after Cody walked off the stage Tom leaned over to me & said "We made it"!

Lamentations 2:19 "Rise in the night and cry to your God. Pour out your hearts like water to the Lord; lift up your hands to him"

Decision Time

Today I was able to take Tom back home. His Bili number has dropped to a 9 (from a high of 17) and his INR number this am stayed at a steady 2.9. This is in the normal range for a person who takes Blood thinning shots. He was very dehydrated and that caused his Liver & Kidney functions to spin out of wack. Now that levels are acceptable he was able to be released and will need to go to GR twice weekly for Saline infusions to help him not cascade down that road. This is the easy part to talk about, but lets go back to Friday....

We had a visit from Tom's Oncologist on Friday and had a very difficult discussion. As I stated there is no chemo for Tom to take as his Liver is not functioning properly. U of M was consulting on whether to re-stint and try to eliminate the external tube, however this was ruled out by Friday. It was also offered to proceed with 5 radiation treatments. It was discussed as to what the radiation would do for Tom. It would in time lessen Tom's pain but it was confirmed that it would do nothing to prolong and fix the lesions in his liver. The discussion became, would you rather exert your energy on a "fix" or would you rather spend your time at home and with your family. As these outings are becoming excruciatingly hard for Tom it was a something that we took into consideration. We also had Hospice come in to talk about their services and "what they are about". It was clear to me that Tom had fought a very hard battle for these 7 years and that he was losing the strength to continue this fight. I wanted to scream "KEEP FIGHTING" but my heart saw his struggles and his decline in these past couple of weeks and my heart knew what to say even though I didn't want to. Friday was a lot of tears and hand holding and truths of what the disease has been doing to Tom.

When Tom came home on Sunday the kids were told first. They took it pretty hard, especially Kyle was broken up. I tried to explain that Dad wanted to be there and tell them himself. We talked about the future plan and what Hospice will do for dad and the family. We were all in tears but Tom assured them he was no going anywhere tomorrow. We talked about the kids responsibilities and how things were going to change and dad can't do all the at he did. Then at 6:30 we had Tom's family & mine over to tell them all the same thing at the same time. More tears were shed and the family thanked us for doing this for them.

Though a part of me still honestly wants to "fight" I know that we need to move to the next phase and I plan/hope to be what Tom needs during this transition. It is hard to explain all the goes through my mind, but I also know the support I have and with my faith, I feel comfort that this too will not be a something that I will face alone. As we have done for over 25 years, we will walk this path together until we part.

Psalms 55:22 "Give your burdens to the Lord. He will carry them."