Sunday, March 3, 2013

DAN

Around the end of January or the beginning of February, Dan went profoundly deaf literally overnight. An MRI test at the Fargo VA and a consult with a neurologist revealed a brain tumor. At the time, we were not sure if the tumor was cancerous or benign, new or metastasized.

Dan visited his oncologist in Fargo last Wednesday and the news was grim.  She told him he is out of remission and the cancer has spread to the lining  of his brain, taking the form of leptomeningeal brain disease, a fancy way of saying cancerous meningitis. Needless to say, as a deaf patient he had a difficult time getting information about his condition, but I was able to speak to her by phone on Monday.

What is so ironic is that the original tumor at the juncture of the esophagus and stomach, after being shrunk by chemo, has not grown. It did not spread to the liver or lungs or anywhere in the chest or abdomen. Instead, in a very, very rare occurrence, a few cancer cells escaped into his bloodstream, went into his spinal column, and traveled to his brain. If this had not happened, he might have enjoyed the 4 or 5 years of remission that his oncologist had suggested might happen.

In addition to being deaf, he now experiences trouble with his gait. He shuffles when he walks and needs to grab onto things for support. All kinds of other neurological symptoms may develop. He is not, however, in any pain.

It is very likely we will not see our 39th wedding anniversary at the end of June. We have done a lot of crying, and then we went on to taking care of finances, getting paper work drawn up, talking about palliative care and hospice, etc.

All through this time (he was diagnosed on Dec. 9, 2011, five days after I started), work has been a respite for me, a chance to forget things for a while. But now things are horrid at work so there is no release for me, anywhere.

Life is hell for us and our daughter. Kristen is coming home on Thursday. She had plans to come home at Easter but the oncologist advised her to come now, because, she said,  with a brain tumor, "there's no telling when."

Please keeps us in your prayers, not for a miracle, but for the most pain free, easy passage we can give this dear husband and father.
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PS - I'd better not hear from anyone accusing me of feeling sorry for myself. You will get an earful, and your sorry comments will not be printed.

20 comments:

Kath said...

Dear Julie, I cannot imagine what you and your precious family are going through.
No words can make you feel better, but please know that there are people who have never met you, who care very much about what is happening to you and your family.
I have followed Dan's progress through your blog and you always come across as such a loving couple, with a strong family. All I can do is send you all my love too.

mxtodis123 said...

Julie, my prayers are with you and Dan. Please know that I care. (((Hugs)))
Mary

ArtSings1946 said...

Oh, I am so sorry and have tears in my eyes reading your poignant post. I have an idea what your going through, we have lost quite a few family members in these past few years and all to cancer .... I don't like it, not one bit and still get mad as heck sometimes and other times crying and crying. So, you all grieve as much as you must and for as long as you must ... only you know the answers to that my dear.

Goddess Blessings and prayers to you and your family,
Jan

blackbird said...

I will keep you and yours in my thoughts and prayers as you move through this difficult time. Please take care.

Anonymous said...

Oh my dear Julie, I knew something had to be wrong since it had been so long since you had posted, but I was hoping against hope. You and your family are thoughts and prayers.

Don't forget to take care of yourself.

Hugs,

Beth

elaineossipov said...

I have been trying to keep up with your site, and etsy, I was enjoying your celtic items very much. I haven't written before because, well, I'm a lurker, what can I say, it's in my nature, I'm really a cat. In that I just surf and mind my own business allot.

But today I want to write you.
Please accept all of my most heartfelt good wishes for only enjoyable communing and quick easy pass. Maybe that is why I am/have been lurking. Death is one entity I have had much experience with.

If you ever need to vent, and you just want to vent to a total stranger, feel free to use me as a sounding board. So Many gifts you have with your drawing and your stories, and to come near a 39th Anniversary in this day and age is the purest form of well, energy there is in this realm...39 years, So much of your life.

And so supportive too, just to write those words about your husband, some dream to hear those from their love and family for years, and here you freely give them. Such blessing you also are. Seems you give as your get. You are a rare soul indeed.

blessed be as you walk this path. I dare say it will be hardest on you whose soul is entwined with his.
39 years..this is nothing short of a miracle. Sometimes our short lives are blessed, by what? we don't knows. perhaps a god kissed our soul on the way here, but know you have been blessed, and in turn are a blessing. Know you have, even those who are strangers to you offering a supportive word, a smile, and as much room to vent as the sky's themselves during this time of transition.

~~ Blessed be. ~~

elaineossipov said...

I have been trying to keep up with your site, and etsy, I was enjoying your celtic items very much. I haven't written before because, well, I'm a lurker, what can I say, it's in my nature, I'm really a cat. In that I just surf and mind my own business allot.

But today I want to write you.
Please accept all of my most heartfelt good wishes for only enjoyable communing and quick easy pass. Maybe that is why I am/have been lurking. Death is one entity I have had much experience with.

If you ever need to vent, and you just want to vent to a total stranger, feel free to use me as a sounding board. So Many gifts you have with your drawing and your stories, and to come near a 39th Anniversary in this day and age is the purest form of well, energy there is in this realm...39 years, So much of your life.

And so supportive too, just to write those words about your husband, some dream to hear those from their love and family for years, and here you freely give them. Such blessing you also are. Seems you give as your get. You are a rare soul indeed.

blessed be as you walk this path. I dare say it will be hardest on you whose soul is entwined with his.
39 years..this is nothing short of a miracle. Sometimes our short lives are blessed, by what? we don't knows. perhaps a god kissed our soul on the way here, but know you have been blessed, and in turn are a blessing. Know you have, even those who are strangers to you offering a supportive word, a smile, and as much room to vent as the sky's themselves during this time of transition.

~~ Blessed be. ~~

WOL said...

We went through this with my late sister-in-law, and you have my profound sympathy, and my prayers. Your health care people (doctors, nurses, etc), can be so helpful. I think you will find there are angels hidden everywhere, who will suddenly appear when you need them. The palliative care team is a very potent resource. Let them guide you to people who can help you deal with this life-shattering event. No two people cope with something like this in the same way. If there are grief counselors available, make use of them. They can help you know what to expect and how to cope with your feelings, which will be overwhelming at times. Again, my thoughts and prayers are with you.

Julie said...

Thanks to everyone so far who has left kind thoughts. Elaine, thanks for the comment about being a rare soul. I have to confront my boss today, and when I speak to her I will carry inside me the thought that I am indeed a rare soul and anything negative she says about me could not possibly carry any weight.

Mac n' Janet said...

Bless your heart, my prayers are with you, and pray that the Lord will give you peace and ease your pain.

Mary said...

Oh dear Julie! The happiness of seeing your post pop up today was short-lived after reading - and then just re-reading out loud, with tears, to Bob who is in another room right now. We are both so very sad to learn of Dan's condition and the apparent lack of any type of cure. May this sweet man suffer no pain and be able to enjoy his remaining time with you and Kristen...........I know you will make the days and weeks special, full of love and lovely times.

We will for certain be thinking of you all these coming weeks, perhaps months, and know you will cope being the strong woman you are. Dan is so fortunate to have you and Kristen. You will be in our prayers at this difficult time, and you take good care of yourself too. Although we've never met, you and Dan have always been a couple I've admired.

I hold thoughts of you close to my heart today -
With love, Mary


Conversations with the Muses said...

Hello dear lady... I have not left any comments before, though I have enjoyed your blog very much. Like the comment from elaineossipov, I am sometimes a lurker. Not today. I want you to know that you, your husband and daughter have my prayers for an easy passing and grace to deal with the grief. I lost my mother to cancer when I was young so I understand how tough it can be. I am so glad he is not in any pain, that is a blessing. I felt compelled to write you to tell you of a book I just read called "Dying To Be Me" by Anita Moorjani with a forward by Dr. Wayne Dyer. It speaks of her profound and rather long near death experience after suffering with cancer for quite a while. In her passing she experienced pure love and bliss and relays that in such beautiful detail. I think it might be of comfort to you, Dan and Kristen. It is not a religious book per say, no preaching, no religions, just deeply spiritual. She has a miraculous recovery which might be too painful to read about. If that is so then just read the chapters where she relays her experience of dying and leave off at that. The chapters are 7, 8 and 9. I offer this too you as a means of coping for all of you. God bless you,
Tricia

Shopgirl said...

There are no words, just feelings. Life is filled with roads not traveled, you are on one hell of a trip right now. I will pray for you and Dan as you say this long good-bye. Love, Mary

Tristan Goodfellow said...

Julie....I felt something was terribly wrong. I am so sorry to hear your news. Please know that so many people care and are sending their loving energies to you and your family.
Please know to rest and try to take care of yourself.
Lawrie

Leanne said...

Oh julie, I am so so sorry. I cant write here,I am stunned by this. I will send an email.

Leanne xx

Kim Covell-Campbell said...

Julie-I am so sorry about this turn of events. You all are in my prayers. (((((hugs)))) to you all and I am here if you need to vent.

JoAnn ( Scene Through My Eyes) said...

Oh honey - you go right ahead and feel sorry for yourself - this is indeed a sad thing and my heart aches for you. I have no words to help you - this is the sort of thing that stuns everyone. I'm so sorry I've been out of touch - I had emergency back surgery in November and the recuperation is long and tedious. My plight seems so unimportant in the face of what you are going through. I wish I was closer - I'd be right over there to help in any little way I could - or just to listen - or to help you yell and shout and punch things - whatever works for you.
Hugs for you and Dan and your lovely daughter - we are sending good thoughts for whatever it is that you all need to get through this time. It is all we can do.

Anonymous said...

Dear Julie,

Like Elaine I visit your blog often, but i've never left any comments. You are an incredibly strong and passionate woman and im certain not many would have survived what you've survived over the years. There really is no words to help you feel beter, but i'm certain that he loved you and your daughter with all his heart. Whatever journey lies ahead for you, he will miss you and your daughter immensely. I hope that your journey ahead only holds success, love and harmony.

With all my love
Cherise
(PS english is not my native language apologies for any mistakes in my tenses)

Leanne said...

Just popping in again to say that I am still holding all three of you in my thoughts and prayers Julie.
blessings to you, Leanne x

Enie Dub said...

Happened upon your blog and read your sad news about your husband. You are in my thoughts and I hope you and your family get to spend quality time enjoying each other.