Tuesday, September 21, 2010

No Pretending

I'm exhausted. Yesterday, Danny spoke with my radiologist's nurse and asked several questions about my recovery, the treatment options, and what's expected as this tumor grows. After processing the information, I did a lot of crying. I'm scared. I know that I'm doing okay right now, but I'm still afraid for the future.

The nurse said that because the tumor has grown into my brain mass, like little fingers, that other than radiation there won't be a lot of treatment options. Although I have the void where the majority of the tumor was removed, the tumor will most likely continue to grow both in the void, and within my gray matter. The main concern is the tumor cells growing within my gray matter. As those grow and multiply, I will start to have more and more trouble with my cognitive function. I'll progressively lose motor skills and physical abilities. It is expected that I'll lose my ability to communicate, and the ability to take care of myself.

That's a lot to take in. I realize that there are miracles, and that there's still a 1% chance that everything will be fine, but it's still hard to hear. I don't want to be treated with kid gloves, and I don't want to pretend that this isn't happening.

I'm grateful that I have the time to prepare myself for what most likely will happen. I'm grateful that I still have my cognitive abilities, my speech, and my physical health at this point. I still miss my long hair, but other than that I'm just extremely grateful for my life.

I'm lucky because a lot of people never get to plan and lessen the blow.

It's just hard, that with each piece of new information I have to analyze my life. Danny has asked me to marry him, many times now, but how can I feel good about the burden that I'm putting on him. What a horrible position for him to be in. I'm so grateful that he loves me so much. I'm still afraid to legally marry him. I know that when a single person without assets dies, their debt dies with them. If I marry Danny, when I die, he is blessed with not only anguish but what could turn into massive debt. How can I feel good about that? The cost of radiation, any new treatments, experimental treatments, traveling for treatments, medicine, physical therapy, speech therapy, his time lost from work carrying for me, paying for health care when I'm unable to function on my own during the day, then coming home and taking care of me, I'm afraid of that future. Danny doesn't deserve this reality.

8 comments:

  1. Dearest Jessica- Wow! I just read this and was too stunned to cry! An overwhelming burden for a beautiful young lady to even consider! However I think the best way to tackle this is to look at all of the possibilities, rather than the negative. If there is one thing that I have learned in my almost 62 years (I will turn that on Sat.) is that there is always a solution to everything!
    First of all- I have thought from the very beginning that you will be in that 1% who beats this and will have a full life!
    Second of all- there are many of us on Team Jess who would be glad to get donations for a medical fund for you! Also have you considered disability, state funded programs, etc.
    Thirdly- in the event that you do need more assistance physically, Team Jess will once again be there for you! I just hit retirement age and like to be in Southern California to be by my 29 year old son, but if I thought that you had no one to help you, I personally would move up there and take care of you!
    Fourth- don't stop plans with your wonderful Danny over all of this! If you feel that the legal paper of a marriage would put a financial burden on him due to your medical issues, check to find out what the legal ramifications are and possibly have a ceremony anyway to declare your love for each other! I'll help pay for it and will be a flower girl for you too! HA!
    See everything looks better when you look at the big picture!
    Also do me a favor and look up Miatake Mushrooms on the Internet- especially the supplement Miatake D Fraction. I heard about this on a cooking show and did some research and it has been used for many years in the Orient. It is known for shrinking and curing tumors. I read an article where a young lady had a golf ball sized cancerous tumor in her brain. After taking the Miatake D Fraction tablets for six months the tumor had disappeared! I'll even pay for this for you if the Doctor's say that you can have it!
    Keep your chin up- stay positive- and know that you are loved!!!
    Love, Patti
    Your Little 'Ole "Team Jess" member from So Cal

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  2. P.S.- When people work as a team they can "move mountains"! You've got the team- just let us know which mountain to move first!!!

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  3. Elizabeth Kubler-Ross: "Human beings have one great asset over all living things, and that is choice. We are not powerless specks of dust drifting around in the wind, blown by random destiny. . . . In the course of terminal illness, we can give up, we can demand attention, we can scream, we can become total invalids long before it is necessary. . . . Or we have the choice to complete our work, to function in whatever way we are capable and thereby touch many lives by our valiant sturggle and our own sense of purpose in our existence."
    Sent with love and concern from a Team Jess member.

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  4. Love is patient, love is kind . . . bears all things, believes all things, endures all things. Love never fails . . .
    . . . . . . . . . . . . . . . . . . . . . . . . .
    And now these three remain: faith, hope and love. But the greatest of these is love.

    I Corinthians 13:4,7,13

    Oh the preciousness of how Danny loves you. Your father turned me onto I Corinthians 13, and oh how he, and your family, and friends love you too.

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  5. So I don't want to be incredibly annoying and say that I saw this coming, but I did. :) Only because it's to be expected by a person like you, and I know that I would share the same feelings! How on earth could you possibly love Danny and NOT feel this way at some point? I do, however, have an advantage here. I get to be an observer and that makes all the difference in the world! Danny isn't stupid, he is well aware of all the possibilities. You KNOW that you would do the same for him. It's what love is all about. I'm so sorry you have to feel this way. How can I explain to you that you deserve it? I'm sure you are feeling it's a burden in itself. That quote above is so true, so read and repeat as necessary! ;) AND once again, I never really have any helpful words, just understanding. You are amazing and you ARE going to beat this and never have to feel this worry again!!!

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  6. I think "So Cal" Patti said everything to eloquently (sp?). What more could I add?, other then to say Ditto. Marriage really isn't about a piece of paper, is it. In fact there are people who get divorced, because of the "paper" due to the fact that they are better of financially being "single". I doesn't mean they have divorced each other mentally or in the heart or how they live. A ceramony would be great though, you'd make such a radiantly beautiful bride.

    You and Danny will figure out what's best for you two. Just know Team Jess is here to support you two in what ever way we can.
    Sent with love

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  7. Get married. Buy rings, have a beautiful ceremony, commit to spending your lives together... and file no paperwork.
    It's about what is important. The fact that Danny loves you until "death do you part" is so special. People, healthy people, go their entire lives never knowing the kind of love the two of you share.
    You are both so blessed, no matter how long you have together, and are an inspiration in how you choose to spend your every day appreciating today.

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  8. Oh, yes, yes, yes! to the above. There is legal marriage and there is spiritual/emotional marriage. When I married over 30 years ago, what I was seeking was the spiritual bonding with my life partner. I was more naive than you, so the legal ramifications really didn't register for quite a while. I believe what most of us seek in marriage is the bonding with our mate. So, if it fits for you, do the whole bit, without the paperwork, and enjoy the deepest sense of marriage.

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