The doctors need to be paid
We fought the first round with the highest hopes. "We are going to beat this, this is nothing." We, well she, endured the mastectomy of her left breast. We fought through the sickness that came with chemo. We kept our chins up, we will beat this. We went through the MRIs, the blood tests, the X-rays, just like we were supposed to. We finally got the good news that we were in remission. We rejoiced, we beat it.
Less than a year later we found the lump in her right breast. My heart fell away. Mastectomy for that breast, it took two weeks till the surgery. Nearly every day the lump grew until surgery. Alli was 3 by then. "Yes mommy is very sick" Alli was so brave, so caring "Mommy it'll be ok, can I kiss your boo boo?"
More tests, second opinion at Dana-Farber "Yes your doctor is following the prescribed path for your diagnosis." "We have to wait and see if the treatment is effective."
The cancer has metastasized to her bones now. It is all throughout her skeletal system. The chemo from the first round wasn't effective, we are doing hormone suppression therapy now. Every day her health declines. She has pain in new areas of her body. The pain increases in the bones that already hurt. She tells her friends and family that it isn't that bad. I see her when she gets in to bed. I see her when she gets out of bed. It's worse than she tells them. It's worse than she let's herself believe.
Her health gets worse every day. The only answer we get is "We have to wait and see how her body reacts to the treatment.
She has been out of work for four months now. In the meantime the house has been letting us down. We had to have major plumbing work done. That led to the discovery that we needed major electrical work done. We knew about the structural work (remove sliding door, replace with standard door.) Now Winter approaches and we need to buy oil.
Amidst this, the car decided to die. We bought a used SUV to replace it.
We were all ready for the normal life. Ready to pay the bills and move on, be happy. Then cancer happened. I feel like I was smacked in the head with a 10 ton hammer. We were going to have more children, we were going to travel, we were going to be normal. Now we are in limbo. Patti is going do die, she is 41. Our daughter is 3. Patti's other daughter is 15. This isn't what is supposed to happen. Patti's fervent wish is to take her daughters to Disney while she is still able. Please help her do that. Please.
Now comes the not so fun part. paying the medical bills that weren't covered and the basic bills that Patti couldn't cover due to being out of work.
I can't put a timeline on her life. None of the doctors we have spoken with have given us a life expectancy for Patti. But living with her, I am watching her die.
We have prepared for most of it. She will not die in hospice. She wants to pass in her own home. I am so afraid of the day that will come, the day that she needs me to feed her, bathe her and take care of her sanitary needs. I saw my grandmother do this for my grandfather. He was 92. Patti is 41.
The initial course of treatment in this second round was the mastectomy (Dr. Reid) followed by radiation in her chest to destroy any remaining cancer (Dr. Patel). Dr. Patel wanted an MRI of her chest to find the target area. The problem was the pain was so bad that Patti couldn't raise her arm high enough due to pain for the technician to get a clear picture of her chest. Patti had pain in her neck back and that shoulder at this point.
Dr. Patel decided to do a round of radiation on the bones in her shoulder to kill the cancer there that was causing her so much pain. It worked. Patti was able to raise her arm above her head again. Patti began to have increasing pain in her neck and hips. Over this time period Patti frequently woke up several times over the course of the night due to pain. Dr. Patel recommended that Patti begin systemic treatment at this point. He recommended chemo.
As we already knew from the oncologist chemo was doing nothing for Patti. The oncologist (Dr. Popkin - wonderful man) put Patti on Zolmeta for bone pain, Lupron for hormone suppression, Arimadex for hormone suppression, vicadin for pain. Patti's cancer feeds on hormones so Dr. Popkin essentially put her in to early menopause. The Dr. appointments are 2 weeks apart, so this is over the course of a couple months. In the meantime her pain increased. Dr. Popkin prescribed Fentanyl patches to level out the pain. They are good for 3 days. He continued the Vicodin which is for spikes in pain.
During all of this Dr. Popkin could give us no prognosis, no timeline - will Patti live 2 more months or 20 more years? No idea. Will she be able to walk next week? We don't know. How much worse will the pain get? Again no answers.
So we set up a second appointment with Dr. Scheib at Dana-Farber. The first was at the beginning of the treatments. She told us that Dr. Popkin was following the prescribed course of treatment. The chemo didn't work, so the next thing to do was hormone supression.
Patti has had four blood tests for her cancer markers. That was in April her cancer markers were at 75. No test in May. After the radiation treatment in June the markers went to 168. In July they went to 96. No test in August. In September they went to 80.
She can't have any more radiation treatments as a body can handle only so much radiation in a short time. As you can see her cancer markers are dropping. The problem is that her health is deteriorating at a quicker rate than her cancer pointers are dropping. The hope is that she will go in to remission before her body gives out. Is that likely? Well that is the frustrating question. Her doctors, as wonderful as they are, can not give us an answer. That is one of the horrible aspects of this disease, there is so much that is unpredictable and not known.
What do I want from this site? Patti worries constantly about money. She worries about groceries for the kids. She worries about the car payment and the mortgage. She worries about the oil bill and the electric bill. So what do I want? I want her to not have to worry about that. She gets a bit of money, a fraction of her paycheck, from her disability payment. We had the bills split up pretty evenly, but now more of my paycheck goes to the bills that she used to take care of.
So this is our current situation. Hoping and praying that she goes in to remission before her body gives out. Patti has such a strong spirit, she will not give up, she is a fighter. If you ask her how she is doing she will tell you she is fine. I think the lie is half for you and half for her. If you ask me. I will tell you the truth. I watch my wife, the mother of my child, my best friend in the whole world ... I am watching her die. I watch her die a little more every day and there is not a damn thing I can do about it. She is slipping away and I can't stop it.
I want to cram the next 40 years of the life we are supposed to have. The full life that most people have. I need to cram that in to the next year - I hope - maybe less. But of course money gets in the way. If we had that full life we would be able to chip away at the bills. We would be able to save up for those vacations. There are places she wants to see. Things she wants to do with the kids. We need to do all of this soon. Our time together is measured, now our time is more precious than ever.
I thank each and every one of you who have Donated to this site. I am in complete Awe of the generosity that has been shown to us. I have been and still am completely speechless. Some of my dreams will come true all of them involve my Husband and Daughters thanks to you all. Much Love and Hope to all. Patti Omo
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