Anniversary

It has just occurred to me that it was about one year ago now that Iva first began to experience her symptoms. For a whole year now she has been sick. When she looks back over this last year, she sees nothing but loss. I can't say I would feel differently, if I were her. But since I am not, I have a slightly different perspective. I see a woman who has made it through some pretty insurmontable obstacles. I see triumph. I see accomplishment. Just in her being here still. Unfortunately, my perspective does not matter. It only matters what Iva feels in her heart. And in her heart she is still lost. She is still mourning. She is still deeply deeply sad.

What good does it do to have life if you can't live it under your own terms? That is the real issue. What good does all her past experiences do her when she can do nothing with them? For example, her degrees in organic farming. Due to her physical limitations there is no way she can be out on a farm using her skills and knowledge. She can't even teach because it also requires hands on research.

She can't just pick up and go places, carefree and spontaneously. She can't stand the way she looks. She doesn't see that her eyes and smile are still infectious and beautiful. She only sees what is not. She only sees her limitations. It is easy when you are dealing with them day in and day out to have what you can't do be all that you can see. I reread some of my earlier posts and was struck by how incredible it was when she did little things, like lifting her feet off the floor and onto the couch. How we quietly celebrated those small victories! Now she can walk all over without crutches. She can pretty much eat anything. The reasons she spends so much time in bed these days are not so much for physical reasons.

Our Iva is badly battered and bruised. I was not aware of it. I went to work every day. I came home and took care of the usual chores. I cared for the kids. We stressed over money. We stressed over being to pay for her needs. We became consumed by these things. We were going about our new routines. It is easy once you settle into a routine to not see things that are always there. You become acclimated to their shining brilliance, so much so that you no longer notice them. And that is what has happened with Iva. She is always here now, doing these things she has been doing for months now, and I failed to see her.

Her heart is aching and I don't know how to help. It is pure tragedy.

Looking to the future

Well this week was suppose to be another chemo week. But Iva successfully dodged it. She has not been wanting to take this last round ever since it was first proposed. Back in July when the MD Anderson doctor suggested another 3 rounds of chemo, she immediately began the bargaining process. She has adamantly insisted that she could only fathom doing 2 more rounds. She has now completed those 2 rounds.

And along comes the Jazz Cruise. She leaves for the cruise on November 8th--much too soon to take a round of chemo now. She would more than likely be at her worst during the cruise if she were to take chemo now, so her oncologist has agreed to hold off for now. When she comes back she will have scans and go in to see the MD Anderson sarcoma specialist. If we can pay them. We owe them $13,000. They have sent Iva to a collection agency, I am told. HA! What are they going to do? Ruin her credit? Good luck with that!

Anyway, on Sunday Mimi, Iva's mother, is leaving to go back to Macedonia. She is on a mission to squeeze some money out of the Macedonian Government. They have a Medical Fund, which will pay for your treatment in a foreign country if the treatment is not available in Macedonia. Well, they denied Iva's claim because they already had paid for care in Austria and the Austrian doctors would not give us a statement saying it was recommended Iva came to America. Damn doctor egos. They told Iva that her records showed her coming to the US was her own personal choice. Yes, it was. It was a choice to live! It was a choice to be close to family and a support system. It was a choice to come to the best sarcoma clinic in the world. I mean, really! How can they say that choosing one's life isn't medically necessary? Ridiculous. So now Mimi is going there to move the appeal along. Beg, bribe, whatever it takes. Iva may be done with chemo for now, but she has expenses that are unpaid. She will be having more expenses incurred with additional scans next month, possible surgery to remove the lung tumor, possible radiation to treat the spine tumor. . .on and on it goes.

In the midst of all of this, Iva is looking to the future. She is searching for herself. She is searching for her confidence. She is searching to replace some of what she has lost. She isn't quite sure where to find it, but it is great to see her trying. She has applied to a handful of jobs. She is considering going back to school. She is planning and thinking. I desperately hope she finds what she needs.

Doing without

Iva has had a headache for two days. It is the headache that comes with anemia. She has been sleeping a lot and tires easily, as you would expect when you have no blood count. It would be lovely to take her to get the medications to boost her red and white blood cell production, but those things cost a ton. And there are choices we have to make right now between medication to combat the ill effects of chemo and the chemo medications themselves. And this "choice" we make based on money. So she is going without.

Money is the dictator of our life right now. It decides what medicine Iva can take, which doctors she can she, and what other therapies she will undergo. We have brought her all this way. Submitted her to all these treatments. And now what? It feels as if we are somehow failing her.

The herbal medication she has been taking in between rounds of chemo cost $3,000-$4,000. She has been going without some of these as well.

There are places Iva would like to go and things she would like to do. And we know that sometimes she does not choose these things because of money.

It is a tragedy to not be able to afford the medicine that can keep one comfortable in life. It is even more tragic to not be able to afford the medicine that can keep one alive. Then there is the tragedy of not being able to live while you still can.

Another round

Iva is undergoing another round (her fourth) of chemotherapy. She will finish on Tuesday. So far she has been feeling tired and just plain yucky.

She told me today that she does not want to take the last round of chemo. She was suppose to take 6 rounds and then see about surgery and/or radiation. She doesn't see the point in taking that last round, and really just wants to not do it. Chemo is harder on her than any of us understand. She doesn't believe in it. She is enduring it just to please her family. I really don't think she believes it is helping her at all. There is something about it that really upsets her. She doesn't confide in me that much, but I get the sense that she is not coping with this new life all that well. I mean, really, it is a lot for anyone to handle.

Before she came here, I had only met Iva twice and had spent only a few days with her. Not enough to know her. So this whole time I have been thinking how great she is handling this whole thing, and now I have seen that I was mistaken. She doesn't want to go places because of the physical changes she has undergone. She has no confidence in this new body of hers. She doesn't feel like a person, I don't think, and definitely does not feel like a woman any longer. She has lost a whole lot of herself and the bits that are left she does not feel good about. It is tragic. So terribly tragic, because she doesn't seem to have the strength to keep on fighting. I worry for her. I worry for her life. I worry for her heart. I just hope she finds some value in what she has left. Enough at least to endure the fight ahead.

Checking

Are you out there?

We could use some support.

Delay

Iva was suppose to start chemotherapy, but her blood levels were not where they needed to be. Maybe tomorrow.