Living With Sarcoma.

Four years ago, the love of my life was diagnosed with uterine leiomyosarcoma (ulms). This is an EXTREMELY rare soft muscle cancer, and very aggressive, with a poor prognosis. To give you some idea of how rare it is, only 0.7 percent of malignancies are soft tissue sarcomas. Of those, only 5 to 10 percent of those are leiomyosarcomas, and a smaller number still is uterine leiomysarcomas.

The outlook for anyone with ulms is bleak. There is only a 50 percent chance of making it 5 years past diagnoses, according to those awful freaking statistics. We are at year four.

Did I say this was rare? That's why, when after my girlfriend had to have a complete hysterectomy for tumors in her uterine, we were told the chances of a malignancy, especially in a young woman, are so unlikely. You spend days hoping they are right.

Then, the news comes. At 34 years of age, she is diagnosed with this incredibly rare, deadly cancer. You are told she was just "dealt a bad hand". How do you process that?

You try to hold it together. It is your responsibility to be strong. It is your responsibility to help the woman you love more than your own life through this, you are not going to cry in front of her.

On the inside , more than anything, you feel anger. You are enraged that the universe would do this to this good person. She has suffered with bi-polar condition for a good part of her life, and now this rare cancer? You want to meet god and beat the crap out of him.

You both are given the news when she is relearning to walk after the hysterectomy. Chemotherapy must start immediately. Two weeks after having all of her reproductive organs removed, she sits having poison pumped into her veins to kill malignant microscopic cells. And hope it buys time.

Time suddenly becomes the most important thing imaginable. You stop thinking entirely of the future. Planning for old age suddenly seems preposterous. Neither of you will make it to old age. Finding small things to do, to bring happiness, that you can afford, become the Holy Grail. You spend as much time together as possible. You never want to be apart.

You spend every minute that you are able researching charities. In the USA, cancer is expensive. Rare cancer is that much more expensive. You both go deep into debt, from which you will probably never recover, and you cannot help it. You stop answering the phone when bill collectors call.

Her hair falls out. The American Cancer Society is a lifesaver in this regard. They provide, free of charge, two beautiful wigs. They almost look like real hair. They do wonders for her morale.

Her hands shake, a lot. The chemo drugs used can cause nerve damage, and she is an artist who is afraid she will never be able to use her hands again. At first, she did not want to have the chemo for this reason. You convinced her to do it, and you watch her hands shake with dread, while trying to convince her it is only temporary.

There are small comforts. You have discovered juicing. She drinks 2 large glasses a day of green juice, and one tall glass of carrot juice a day. Made from organic vegetables. This is important. You have also discovered glutamine powder. It helps cells damaged from chemo to heal. It is very, very important.

She has to take shots in the stomach for nausea. They suck, but it works. The juicing also helps. Miraculously, the vomiting after chemo is almost non existent.

It's hard for you, because you yourself are disabled ,and suffer chronic pain from multiple injuries.
You keep quiet about your own problems, but she knows you are hurting. You make a habit of being a bad liar, and telling her you are fine.

You learn that the two of you have to fight for her health. Doctors do not know everything, especially about rare diseases, but they always think they do. Her doctor insist that she take estrogen, to help with the menopause brought on the hysterectomy. You research and discover that ULMS tumors can be prone to react to estrogen, that it can make them grow. The doctor says otherwise. She refuses to take the hormone. You have an argument with the doctor. You demand that he test the tumor to see if it has estrogen receptors. Finally, he agrees to. The tumor is loaded with them. This means that , had she taken the doctors orders and continued to take the hormone, more tumors may have grown. The doctor sheepishly says that is "rare", but then agrees that she should not take it.

Ct Scans and P.E.T scans every three months are the new norm. Each new test brings crushing anxiety. Life is composed of three month cycles now, to see if the cancer has returned. We have been lucky so far, it has not.

Mysterious things happen. Lymph nodes change size, get too big, and have to have needles stuck in them to test for malignancy. Random pains shoot through the body. Symptoms that have no explanation occur frequently.

You, (I) are angry at myself, because of all I cannot give her. Before, she was an editor of a medical journal. She had only been there 7 months. Previously she had worked 13 years at a different job.

Because she had been at the journal for less than one year before getting cancer, she did not qualify for long term benefits or insurance. Her insurance runs out, and she has to go on disability. None of her family or friends seem to understand the severity of the cancer,a nd say that "she can go back to work when she beats it".

You (I) are sorry that you are not a better person that you lived recklessly and foolishly in the past rather than saving money. Now, it has come back to destroy you. Boxes and boxes of bills are stacked in the spare room. The bill collectors threaten lawsuits. They can get very nasty. They tell you you should have planned for something like cancer. They are right, but you hate them still.

She has always wanted to see Paris. She knows it is "such an American thing to say" but it is true. Sometimes, she brings it up, and shrugs. "Oh well," she says, and your heart breaks.

She has handled this better than anyone you know could handle it. Certainly better than you. She is glad, every day, to be able to go outside when it is warm enough, to be able to sew and knit, and be able to draw. She never talks about dying, and you don't either. you see no point in it.

She is your life. She is it. Your parents are dead. Your childhood home is gone. She is your life, and 4 years ago she was told the worst thing anyone could ever be told. Four years ago, you made plans also.

You will not live without her.

If anyone out there is living with sarcoma, or caring for a loved one with sarcoma, I can share links or addresses to charities and diets if needed. Or, let me know if you need to talk or vent