Save Iva

Gratitude

2010-12-19T20:43:00.001-06:00

Iva passed away 2 weeks ago now. How is it that it has been that long already? 14 days we have now lived without her. Without receiving the joy of her smile. Without worrying about her. Without anxiety about what is going to happen next. The relief brings guilt. The loss, of course, bring much sadness.

So in this time, we have been dealing with all the grief, and trying to decide what our lives are now going to be like. Our daughters have only known their lives with Iva. She has been with us for nearly 2 years, and in their short lives, that represents a good portion of their memory. Yet they have not skipped a beat.

On the day after Iva's death, our youngest, Maja, was still looking for her. "I'm going to see if Iva is sleeping in her room." Then she decided that Iva had turned into a butterfly and had flown up to heaven. The next day, Wednesday, we buried Iva at the Serbian Orthodox Cemetery in Galveston. When we got home that afternoon, Tony found a butterfly on our back door. The butterfly let him pick it up and carry it about for a bit. He then set it free. Pure magic.

It's strange that in all this time everything boils down to just a few memories. Iva making pasta. Iva cheering while watching soccer. Iva explaining friendship to our oldest daughter, Milena. Iva being completely enamored of Avatar in 3D (she watched it 3 times, at least!). Iva cutting cabbage.

We now only have memories of her. Memories of her before she was sick. How she loved the sea. How talented she was. How she loved simple things. How well she could pack a suitcase. How loving she was.

And then there are the memories of her being sick. And how it changed her. When she was first diagnosed, she struggled to understand why this had happened to her. She thought it was something she had done. Maybe she had been too prideful, which of course, was a prideful thing to think, right? To think that any of this tragedy had anything to do with you? To think that somehow the forces of fate had singled you out? But that was Iva. Flaws and all, you couldn't help but love her. She was the bravest woman you will ever know.

And then there are the things that we can't remember. Like her favorite Starbucks coffee drink. All these silly day to day details that suddenly become so important because she is gone.

And then there is the guilt. The guilt for not always understanding how hard this was for her. For expecting her to be more this or less that. For not hugging her more. For not saying more of the "right" things. For not making her cookies more often.

But in the end, we are left to resolve all that it meant and all that we didn't do. We have to go on living and doing all the things she will never do. And yet in all of this, gratitude fills me. I am grateful for how much we have received from all of you over the last 2 years. How much you have shared with us, how much you have prayed for us, how much you have just listened and supported us. How much you have opened your hearts to our family, some of you complete strangers. It is really quite astonishing. And then there are the donations--from so many of you--and without which Iva would never have been able to receive the treatments that kept her here with us for so long. We will always be grateful for that. Just as we will always miss her.

The Ending

2010-12-12T20:25:00.000-06:00

So most of you probably have already heard that our Iva has now left this earth. She died at home this past Monday at 9 in the evening. We were all here with her. The priest came, and then she passed. I have had no perspective, and so have been unable to write. This is all I can manage now.

Laku noc

2010-11-30T19:26:00.006-06:00

Iva was sent home from the hospital today. She still isn't feeling well. Right now there is no plan of treatment. We'll see how things go. . .

We started decorating the tree tonight with the girls. Unfortunately, Iva could only watch. Back to bed she went.

Here's to hoping her first night back goes smoothly and that she rests well.

Laku noc.

Cheeseburger

2010-11-27T11:11:00.002-06:00

Iva is still in the hospital. She is coming home in a couple of days, they think.

She wishes she felt well enough to eat a cheeseburger.

So do we.

Privacy

2010-11-25T15:08:00.003-06:00

We are changing the privacy settings for this blog. We are taking it from public to private. If you follow this blog and want to see future updates, please email your email address to:

sclissa@gmail.com

Thanksgiving

2010-11-25T13:45:00.004-06:00

Slava on Sunday.

Back in the hospital very early on Wednesday.

Still there for Thanksgiving.

Brief home visit

2010-11-05T18:04:00.001-05:00

I just brought Iva home. She will go back on Monday for another surgery. For now she gets to rest here, in her own bed, which I hope is enough as that is about all the good I can find right now.

Out

2010-11-03T17:16:00.001-05:00

Iva is out of surgery. Pain. She may be home in a couple of days or so.

Well looks like she will need more surgery on Monday. Tubes aren't working.

Back in the Hospital

2010-11-02T18:24:00.001-05:00

Iva is back in the hospital. Will have a second tube placed in her left lung tomorrow.

Anniversary to be forgotten

2010-10-30T19:24:00.003-05:00

Wordless Worry

2010-10-29T18:54:00.002-05:00

MD Anderson has decided that the cancer is spreading and radiation is not an option. The area is too extensive. There may be some clinical trial option, but no details on that yet.

The suffering the mother endures that has no words.

Reunion

2010-10-26T22:03:00.002-05:00

Things have not been going well, in general. Iva has been feeling bad. She drained over a whole liter of fluid from her tube today. The home is missing a component and it is not functioning well. So tonight we bought a ticket and tomorrow at this time, Tony will be home!

Home

2010-10-22T20:49:00.003-05:00

Iva is home. Still has the drain. The doctors are clueless. Another trip to MD Anderson will hopefully clear some things up.

Still

2010-10-21T20:30:00.001-05:00

Still in the hospital. Maybe tomorrow.

Unexpected

2010-10-19T17:09:00.003-05:00

Iva went in yesterday for additional draining of the fluid on her lungs since it has come back after the last procedure. Today she went in for a follow-up appointment, and her lungs were found to be full of fluid and blood. She was admitted to the hospital and is currently waiting to be settled into a room.

They will place a drain in her chest and keep her until she feels better. The last couple of weeks she has been feeling dizzy and short of breath. She has been fatigued and having lots of pain. No appetite and all that.

Our biggest concern is the bleeding. Her first tumor developed a large sack of fluid around it called a hematoma. This tendency to cause bleeding is a component of her type of sarcoma. Telangiectatic features, they call it. Worrisome to say the least.

Changes

2010-10-03T19:17:00.003-05:00

We have been undergoing changes in our household. Antonio has left us, seeking an opportunity for a life. Living here, in these walls, has not been much for him. No progress. No chance at independence. He will be missed for the lightness and stability of mood that he brought to this home of ours, but I will not miss seeing the toll it has taken on him. Watching the life being slowly sucked out of him, the aging it has caused, has been unpleasant, to say the least.

Iva goes in tomorrow for a minor procedure. They will be draining some fluid out of her left pleural space.

And in the meantime, we wait for more bad news (or not).

Mobile

2010-08-16T17:37:00.003-05:00

Iva is gaining more mobility. Her pain hasn't changed much, and she still is tired most of the day.

Today, she went to have her stitches taken out. We are waiting for her to come home.

More later.

Fever Patrol

2010-08-12T20:07:00.002-05:00

As parents, fevers are usually cause for concern, especially in very small children. It can keep you up at night, you worry when the medications don't work, and sometimes, if you are super unlucky, you end up in the ER.

Take all that concern and multiply it by 10--that is the concern we have when Iva even hints at having a fever. Today she developed a low grade fever and pain in her right chest with breathing. You pray for the best, and think of the worst. So far, we are not heading to the ER, but everyone is expecting that at any minute, that can all change.

We shall see.

Take 2

2010-08-10T22:45:00.003-05:00

Iva came home yesterday. She is still here, so it looks like this time it will stick.

Still lots of pain, fatigue, etc. But each day there is slight improvements.

Next week we go back and see the surgeon to talk about the next step. She did not tell Iva any results of the pathology--only that she would tell her on her follow-up visit. We have all pretty much figured out what that means.

Sadly, one of Zoran's co-workers was recently diagnosed with liver cancer. The doctors have told him he is not a candidate for a liver transplant because of the location/size of the tumor. He is seeking a second opinion. Ray, our hearts go out to you and your family. This disease is hell, we know. It never makes sense, and it is always unfair. Everyone is waiting for their own miracle. Sometimes miracles are incredibly small--like finding the strength to get up and carry on as usual. And sometimes miracles can be enormous--being cured. We pray for enormous miracles for Ray, for Iva, and for all those endlessly suffering in this world.

My hope is that we remember that is not for us to understand; that all this somehow is as it is suppose to be. That we do not begrudge others their victories and happiness when we have none ourselves. That we remain grateful for all that we have been left with. That we never run out of the ability to give. To never be dry and resentful.

Baby Steps

2010-08-08T11:31:00.002-05:00

Iva's stay at home was short lived. She came home Friday afternoon, and by midnight that night, we were back at the hospital. Her pain was raging and the medications were not working. She started getting IV medications again, and she has been feeling better. She sat up several times on the edge of her bed and stood up for a brief period of time. Baby steps back home again we hope.

Home Again, Home Again

2010-08-06T20:50:00.002-05:00

Iva is home! She hasn't left her bed, but she is here!

Tonight will tell if the drugs they sent her home with will do the trick. On another positive note, they only cost $65! We have fallen in love with the Professional Building Pharmacy here in Clear Lake by the Medical Center. If you ever need any medical supplies, just ask for Ernest. They have a real pharmacy where they do compounding and everything. Ernest has taken great care of us and he is just an all around outstanding human being.

Anyway, that has been one of the greatest things throughout this whole last year and a half. The people we have met that we would not have ordinarily had reason to. The people who have shared their time and resources with us, the people that pray for Iva and have not ever met her. The friends who bring us dinner despite the demands of their own lives. The friends who take our daughters for a day so we can be at the hospital with Iva. The friends who tirelessly pass the word around of Iva and her fight. Those that never tire of listening. I don't know if we will ever have a chance to show them all how much we appreciate them, but each and every one of them has lightened our load and filled our hearts.

Sometimes we struggle to have appreciation in life, to see that there is more than just endless suffering. Each and every one of you has made it that much easier for us, and for that, we will always be grateful.

Finally

2010-08-05T20:09:00.002-05:00

I have been wanting so badly to report something positive. For days, I have had nothing good to report, because Iva has been absolutely miserable. She was having immense pain, she was bed-ridden, and she was mentally a mess. The pain medications have been causing all sorts of problems. All the doctors have been really mystified, truly. Her last surgery was on Thursday and as of yesterday, she had not improved at all. Not one iota. I sat with her all Saturday, watching her suffer, waiting for any moment where I could see that she might be better. But nothing. Pain, hallucinations, dizziness, cryingl, suffering, suffering, suffering.

Yesterday, she finally agreed to take all medications as prescribed, to just forget that they were making her feel drugged, and as I had hoped, today she felt a bit better. They are now talking about sending her home tomorrow. YEAH!

Transfusion

2010-08-01T00:01:00.002-05:00

I just left Iva at the hospital. She is getting a blood transfusion right now. They think it should help some of her symptoms. They decreased some of her pain medications and changed others. Double vision greatly improved, so has lightheadedness, but she is still having breathing difficulties and can't move from her bed. She is still needing oxygen.

This day has been immensely difficult and exhausting. We could all use a transfusion of hope, faith, and energy.

Sleep well sweet Iva. We will see you tomorrow!

Improvement

2010-07-31T13:31:00.004-05:00

Iva was moved to a room last night. She now has all IVs out and the surgical drain. She is still on epidural pain meds. She is feeling dizzy and has been having double vision all day today. We are waiting for the pain management doctor to come. He seems to be the only one who has been able to help her these last few days. She is having a rough time right now, but I have been reassuring her that it will get easier. Her poor body has been through so much, it is only expected that she would be feeling bad right now.

Pain doctor just left. He has adjusted her meds. We shall see.

Day 5

2010-07-30T11:57:00.003-05:00

Iva woke up on her 5th day in the ICU. Yesterday, they removed the rest of her 7th and 8th ribs, rib 9, and a bunch of soft tissue surrounding that (on her back, left side). They placed a piece of kevlar where they removed the ribs to provide support, protection, etc.

The disappointing part is that the margins were still positive for cancer cells. There are no formed tumors, but there are many many cells completely infecting her chest wall, waiting to become tumors. They cannot take it all out because she needs her chest wall--the muscles and such--to breathe. That is the saddest news. We really were hoping this would eradicate her cancer for a while, that she was be able to breathe, to live, to remember what it is like to be a normal 20 something woman. To be carefree, happy, hopeful again. All this we hoped for. And now, we feel. . . what? Numb. Yes. Angry. Yes. Filled with disbelief. Yes. Devoid of hope. Yes. Waiting to wake from this terrible terrible nightmare. Yes.

The world is full of injustice and tragedy. When you are young, you have the luxury (usually) of thinking it doesn't apply to you. None of us has that luxury any longer.

More Surgery

2010-07-28T10:27:00.001-05:00

We just found out Iva will need more surgery tomorrow. The thoracic surgeon and a nuerosurgeon will go and remove a larger area of her chest wall and the two affected ribs. That is all we know for now. No word on pathology, but this must mean they didn't get a wide enough area. We have previously read that for sarcoma, it is imperative to get a wide excision for greater chance of success. Poor Iva. This is heartbreaking, really.

Still Waiting

2010-07-27T20:36:00.002-05:00

Iva is still in the intensive care unit. We have no updates from the doctor on the pathology results yet, so we still don't know if she will need more surgery.

Basically they removed four tumors--2 from each lung. They found an unexpected 5th metastasis on her chest wall and had to remove that tissue plus part of two of her ribs--on the left side. Our theory is that the prior surgeon in April who tried to repair her collapsed lung contaminated her chest wall with tumor cells. This all because he didn't know jack shit about sarcoma and was either too idiotic or arrogant to research what the hell he was doing prior to poking around in her chest. If he had bothered to admit that he didn't know what he was doing, he could have learned that that type of surgery is the exact kind you do not do on a patient with sarcoma tumors in the lung. And for this very reason. Shame on him!

She is doing fairly well. She has lots of pain that is keeping her from breathing very deeply. This is giving her the sensation that she is suffocating, which of course, is making her anxious. She is able to talk with us for the brief visiting periods. She is drinking juice. She sat up today in a cardiac chair for three hours. She is getting an MRI of the chest tonight. Tomorrow is tumor board and they will decide what to do. If the margins of the resected tissue are clean, then she won't need any additional surgery. If there are tumor cells in the margins or there isn't a wide enough "clean" area, then they have to go back in and remove more tissue. The surgeon couldn't do it last night since she wasn't expecting it and did not have a neurosurgeon available. She will need one to assist with removal of the additional rib tissue because it extends into the area of spinal nerves and such.

Of course, we are all hoping for clean pathology results with no bone involvement. If the ribs are affected, well, let us know think of that.

ICU

2010-07-27T05:28:00.001-05:00

Iva made it through. Found more than they were expecting. Maybe more surgery later this week. More later.

Surgery

2010-07-26T08:42:00.002-05:00

Today is the big day! Double lung metastasectomy.

Deposit

2010-07-23T20:56:00.002-05:00

Dropped $16,000 today at The Methodist Hospital and almost $5,000 to the surgeon. Iva is scheduled to have surgery Monday, July 26th at 10 a.m. It will take about 5 hours. The surgeon will be deflating each of her lungs. Dangerous business, but not as dangerous as doing nothing.

Approval

2010-07-09T16:34:00.002-05:00

We have been approved for Iva's surgery, meaning, they have accepted our offer. It felt much like buying a house, which is really a crazy analogy, but it was just like that. They told us the asking price, we negotiated a down payment and a payment plan for the remaining balance. So now we have to cough up $21,000 between the hospital and doctor's fees, and then she will have surgery on the 26th. We will then need to make payments of $3000 a month until the remaining balance is paid off. The estimate for the total costs is around $50,000+.

We are hoping to kick start some fund raising again. Things have really slowed down to a trickle. It is hard to keep people excited about saving a life of someone they don't see everyday, or maybe even someone they don't know. But in addition to all of our other life duties. this is our other occupation--Saving Iva.

Please tell anyone and everyone you know who may be able to help. We have seen before what word of mouth can do and how generous people can be. She has made it this far only because people have opened their hearts to her. We can only hope that it continues to be so.

Take off

2010-06-27T20:15:00.001-05:00

Iva and Tony left today. They should be in Macedonia tomorrow. They are staying there for three weeks. Enjoy them, Macedonia!

Postponed

2010-06-24T15:52:00.002-05:00

Iva's surgery has been postponed until late July. The surgeon has agreed to do both lungs in a single surgery, which is riskier, but cheaper.

So now Iva is going back to Macedonia to get her passport renewed. This will also get her out of the US before her current visa expires. In the mean time, we have to negotiate a price for the surgery.

Why does everything have to be so fucking hard and complicated?

Rejected

2010-06-23T20:53:00.002-05:00

Iva has been rejected for financial assistance from the Methodist Hospital. No surgery this week. We have some ideas, but it is hard to find energy to try.

Nothing Yet

2010-06-19T14:26:00.002-05:00

No decision from Methodist yet. Boo!

Big garage sale today with our awesome neighbors. Made several hundred dollars for Iva. Yay!

Tomorrow

2010-06-17T16:50:00.003-05:00

We met with the financial counselor today at The Methodist Hospital. He is going to present Iva's case to the charity board and we should have a decision tomorrow. It feels as if her life is being decided. Not the most comfortable of feelings.

Tomorrow!

Week Delay

2010-06-16T20:27:00.005-05:00

This is what a $125 past due bill looks like. I like the threatening tone. Its really ingenious. One almost gets the sense that there is actually something they can do to Iva if she doesn't pay. According to this notice, they just can't figure out why Iva has refused to pay them. Hmmmm . . . We finally gathered the courage tonight to add up all of Iva's known outstanding bills. The grand total is only about $40,000. Add this to everything we have already paid--which is about another $180,000-- and then you start to approximate how much one year of a life is worth.

Well, onto the latest on Iva's impending surgery. She found out today that if she pays them a $10,000 deposit, they will submit her bill for their charity program. Tomorrow she is going in to give them all required documents, which includes our household income and letters of support. When considered in normal circumstances, Zoran and I make very decent money. I am forever grateful for the blessings of our jobs--what most people wouldn't give to have what we do! But, when you consider that our salaries have to support 5 adults (3 of whom have no income) and 2 kids, plus all that we have paid into her healthcare already, well hopefully, it doesn't disqualify Iva from their program.

So that is tomorrow. They have rescheduled her surgery until next Thursday to allow for time to decide if she is worthy of charity. There are three options. One, they will approve her and surgery will happen on Thursday. Two, they will miss their own deadline for a decision, and the surgery will still happen without any agreement on the bill. Third, and the least desirable, Iva will be denied and will have to agree to whatever terms they insist. One more week of agony!

Really?

2010-06-15T22:03:00.002-05:00

We thought MD Anderson was expensive. They wanted $67,000 for the one lung surgery. No discounts, no payment plans nothing.

Enter The Methodist Hospital. They are offering a 40% discount for being a "cash" customer. They only want $65,000, plus another $3000 just for the physician.

Where do they come up with these prices? I mean, really! What more do we have to do?

Not So Fast

2010-06-14T18:31:00.002-05:00

Well we really thought we had finally caught a break. Lord knows we could use one. And then, not surprisingly, another road block.

Iva's surgery may not happen. And as usual, money is the culprit. We thought by going to a private hospital, that they would have some sort of charity program to assist with the financing of her surgery. She has been told their foreign patient fund is depleted. Road block.

We tried to get her an American Social Security number to assist with applying with other programs. She was told she doesn't qualify to get one. Road block.

She was informed she would have to make a deposit, but no one can tell her how much the surgery will cost. She waited hours on hold. Waited hours for someone to return her call. Waded endlessly through the bureaucracy that is the American medical system. And all she knows for all her trouble, is that she will get a 40% discount and that she will have to pay an unknown portion of an unknown total amount. Road block.

Tomorrow we will have to make an appearance there to try our best to convince them that Iva deserves this chance. That this is her only chance. And that if they could just make a humane decision, rather than a business one, well, there is nothing in it for them except the peace that they did the right thing.

In the meantime, if anyone has an extra $50,000 and wants to contribute to a very worthy cause . . .

Cutting Away

2010-06-11T07:31:00.002-05:00

There have been many theories on treating Iva's cancer. You all have shared some that you have heard of or read about. The doctor's in Austria had suggested a plan of treatment. MD Anderson, here in America, suggested another. Iva's own family members each has his or her own idea about what the next best thing to do is. Sadly, we can never know for sure who to listen to or which path to chose.

BUT--this is the first chance we have had in all this time at getting Iva cancer-free. Next Thursday she is scheduled to have her right lung operated on to remove any and all masses. Two weeks later on June 30th, she is having the left lung done. She has no other known metastases. As we found out earlier this week, the spine lesion is not a tumor. Having metastatic disease to only one body system (the respiratory) is way better than having it in two.

And why not Iva? Why is she not worthy of this miracle that we have all prayed for so hard this last year and half? She doesn't have the courage to hope for it, but I do. And why not? What do we lose? We have had each other each and every day for the last 14 months. That has been an amazing blessing. Looking back at how far Iva has come--the mere fact that getting her here when we did was an amazing feat! What obstacles! It is not too late to proclaim full victory--to cut away all this evilness from her body and her spirit. It is not too late for Iva to heal herself. To start seeing what she has accomplished, rather than what she has lost. To see what blessings she has, rather than what she has been burdened with. To start rejoicing and embracing the day, rather than cowering in fear of what the day may bring.

Goodish News

2010-06-09T09:58:00.003-05:00

Iva met with the spine surgeon this morning. He looked at her scans and informed her that the spot on her L1 vertebra is not a metastasis! It is an hemangioma, not cancer! Sweet day.

Tomorrow is back to the thoracic surgeon to see if last Friday's CT scan supports surgery. If her lung tumors are stable (no progression since the prior scans), then surgery will be scheduled. She has been off chemo for about 2 months now, so we will see.

More to come tomorrow . . .

Fatigue

2010-06-04T19:41:00.003-05:00

Iva got news from MD Anderson. "We are not sure," was the general consensus. "Let's wait until you get worse." Dissatisfied with that line of reasoning, Iva called the oncologist back and asked why he didn't feel being more aggressive was a good next move. He ultimately set her up to see the thoracic surgeon, the guy that could possibly remove her lung metastases. We met with him on Tues. He has her scheduled for surgery on Wednesday, June 9th. He wants to resect the right lower lobe of her lung where her largest tumor is--it's about 1 cm in size. He would then work around the rest of her lung, squishing as he went, looking for additional tumors. He calls it "palpating," but squishing is a much better description, don't you think? He would then place a chest tube in to reinflate her left lung, which still remains partially collapsed even after her last surgery. If it reinflates, he will be able to better see if there is any tumors there--again by employing the sophisticated squishing method. However, the left lung surgery would be done at a later date. It all sounded very good and promising, but at the cost of nearly $70,000 for just the one surgery, we can't afford him. So we asked if he knew of anyone else qualified to perform such an operation. He recommended someone and Iva saw her yesterday. She is at the Methodist Hospital here in Houston, which is a private hospital and therefore, has a charity program. We are super hopeful that they will not only cost less, but also that Iva can get approved for financial assistance with them. The Methodist Hospital also has a spine surgeon she is consulting with on Wednesday next week to see if he can perform the operation on the spine tumor. It is not a confirmed tumor, but they think it should be scheduled for removal, just in case.

All of this is very good, but unfortunately, no one is celebrating. Tension is high. We have all been dealing with our little bits of this tragedy for well over a year now. Fatigue is setting in.

Appointment

2010-04-15T12:21:00.002-05:00

Just dropped the latest CT scans off at MD Anderson. We should know what they show in the next few days. We were hoping to have an appointment this week, but it looks like that won't happen. Maybe early next week. The suspense is crazy hard.

Pressure

2010-04-14T21:36:00.002-05:00

Everyone is under immense pressure. The strain is getting to Iva. A very bad day today. Very bad, indeed. Pray for peace to find itself back with her spirit.

The Great Collapse

2010-03-14T17:38:00.002-05:00

There has been an ongoing issue with Iva's left lung, and it isn't cancer. Her left upper lobe was partially collapsed, we discovered, about a month ago. She was not, however, having any symptoms. So she was just getting monitored with chest x-rays. The last x-ray, taken a couple of weeks ago, showed the pneumothorax was mostly resolved. Then, suddenly the other day, she began to feel short of breath. She wasn't sure if she was really feeling short of breath or if she was just fatigued. She had done a lot the day before, but around 5 p.m. it was clear that she couldn't even finish a short sentence without having to take a breath.

So Iva and I went to the emergency room and within a 1/2 hour she had had a chest x-ray and they were telling us she needed a chest tube. She spent a couple of days in the hospital. It now seems to be resolved, but there is no real explanation why it happened; no one knows for sure. Neither the pulmonologist nor her oncologist thinks it is tumor-related. For all their years of education and experience, none can say what the heck is causing her problem. Yeah!!

None of us can wait to see what happens next!

Time

2010-03-01T20:18:00.003-06:00

Our time is measured. Sometimes in hours, sometimes in months. For us, it is measured by the distance between scans. This distance can be immense. We are trying now to enjoy this interval, this period when we can believe we are winning the war. But with every fight comes a new day and a new opportunity for your opponent to show you how smart he has become. No one is talking about it, but it is always lingering, always waiting for you when you are quiet and still. So the goal is to never be still. To always be pressing forward to the next big hurdle.

And that hurdle for us right now is surgery. We have been researching facilities that are qualified to perform the type of surgeries Iva will require. And (unfortunately) we have been asking ourselves how on earth we will pay for it. But all that will come. We pray, anyway.

We have recently discovered a charity program through Iva's cancer clinic that is paying part of her chemo costs. We will be trying to contact the maker of the other drug to see about getting it partially (or wholly!) paid for as well.

Small victory

2010-02-11T20:53:00.001-06:00

So the kinder, gentler chemo works after all! Iva's lung tumors are half the size they were in November. For two months, we can enjoy this small victory.

More waiting

2010-01-20T19:44:00.002-06:00

Just enjoying dinners and "quiet" time together. Iva has finished her two rounds of the new chemo and some time in the next week, we are hoping to get her new scans taken. Depending on what is going on with her lung tumor(s), they will recommend the next step. And the waiting will then begin.

Good Day

2010-01-16T20:43:00.002-06:00

Daiquiris, fajitas, and now, lots of laughter. Today is a good day.

Home

2010-01-09T21:36:00.003-06:00

Mimi is still in Macedonia. Still dealing with the bureaucracy of the government. Still without success. And in the end, she will have to sell the family home--the apartment that her mother owned and that she has lived in for the last years. Even if the government agrees to pay for some of Iva's care, the most they will pay is 80 percent of the estimate we gave them for two rounds of chemo and the additional scans. The trick is that you have to pay the remaining 20 percent yourself upfront before they give you their share. Hence the need to sell the apartment. It is sad to see it have to go, but what choice is there, really?

Front

2010-01-02T08:00:00.002-06:00

Iva is feeling pretty well. Getting out some. All is quiet on the front. . .

Holidays

2009-12-21T20:11:00.002-06:00

We have been getting ready for Christmas. Iva has started a new chemo regiment. A kinder, gentler chemo.

What does mean? Well, mainly that the meaner chemo wasn't working.

Big Day

2009-11-07T16:43:00.002-06:00

So tomorrow is the day. Iva goes on her cruise. They leave out of Ft. Lauderdale and over the 7 days, they stop in Grand Turk, St. Thomas, St. Barths, and Half Moon Cay. She is packing as I write this. So exciting! Thanks again, Jazz Cruises! You guys rock!

Cruise

2009-11-03T18:45:00.003-06:00

As I posted a while back, The Jazz Cruise donated Iva a cabin on their Caribbean cruise in November. She had her PICC line removed (again) today since she is more than likely done with chemotherapy for a while. When she gets back from the cruise she will undergo scans and if we can pay MD Anderson the $13,000 we owe them, she will get to see the the specialist to see what is to be done next.

So in the meantime, she will be leaving for the cruise this Sunday. She will be gone for 7 days. Since she no longer has her PICC line, she will get to swim, showers will be infinitely easier, and there will be one less route for an infection. All around, very good stuff!

The girls went trick or treating on Halloween and stopped for a photo op with teta Iva and nani.

Departure

2009-11-01T18:23:00.002-06:00

Mimi has left us to go back to Skopje for the month. Hopefully, she will be successful in her mission of getting some much needed financial assistance from the Macedonian government.

Pray for her safe passage and her success!

Anniversary

2009-10-31T08:11:00.002-05:00

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

2009-10-29T20:14:00.002-05:00

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

2009-10-20T05:30:00.003-05:00

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

2009-10-11T22:01:00.002-05:00

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

2009-10-06T21:50:00.000-05:00

Are you out there?

We could use some support.

Delay

2009-10-05T19:11:00.002-05:00

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

Pandemic

2009-09-30T16:24:00.004-05:00

The flu has struck. Iva has been sick the last couple of days. She went to the doctor yesterday and today. Looks like it isn't serious, just terribly uncomfortable. Aches, coughs, etc. Chemo is scheduled to start on Monday again.

Now comes the part we have been worried about for weeks. Iva is running out of donated monies. We don't know how her chemo is going to be paid for. We don't know how we will pay for the medicine she will need after the 5 days of chemo is done. Or the countless other medical expenses she incurs just being here. Being Iva is not cheap. It is not easy. She requires medical appliances. She requires medical supplies. PICC line changing kits. Urostomy bags. And on and on. And none of it is cheap.

What we do know is that there are people out there willing to help. We have seen it. But people forget. Causes come and go like fashion. Please don't let Iva's life be a fad. Don't let it be something you were passionate about this summer, but tossed aside in the fall. We have a Facebook group that has over 13,000 members. If every one of those people donated just $20 . . . and then told 5 people who each who donated $20 . . . It isn't too much really. It is a drop in the bucket compared to what Iva has given and has to give every day just to keep living.

I mean, really. So many people in her position would be bitter. They would be angry. They would be in despair. But she isn't. For those of you who have had the privilege of knowing Iva personally, you know that her spirit shines bright. What frustrates us so much is that no matter how many words we write, or how many emails we send, or how many calls we make, we can never communicate how worthy Iva is of your time and money. She is the product we try to sell every day. And our poor feeble attempts fall short time and again. But we can't stop. It's all we know to do.

Flu

2009-09-27T01:13:00.002-05:00

The flu has struck the Milenkovic home. Just praying Iva does not get it. This is a particularly wicked strain.

Bikers Ball and such

2009-09-22T18:19:00.007-05:00

So some friends of ours, Matt and Dayna, who also happen to be great neighbors, talented photographers, bikers, and all-around fantastic people, donated tickets so Iva could attend their annual fundraising Bikers Ball. Thanks, Deacons of Deadwood!

Iva was a bit under the weather. She had a low grade fever and was a bit chilled all night. The next couple of days were no better, and yesterday she was almost hospitalized. Thanks to not having insurance, the doctor decided her fever was 1/2 a degree shy of requiring hospitalization, and today, she felt so much better she was out shopping for groceries and other necessities. What a difference a day makes!

Last Tuesday she finished up a round of chemo and these next few days Iva will be occupied with very practical matters. Getting a French visa for the cruise, applying for an extension on her American visa, etc.

Cliffs Notes

2009-09-09T10:36:00.004-05:00

Apparantly I failed to make myself clear. Too many thoughts, too many words.

So the Reader's Digest version of the previous update:

Iva' s tumor shrank.

She starts chemotherapy again today.

The End.

PICC Line

2009-09-08T17:49:00.002-05:00

PICC line successfully placed today. Iva's arm hurts more this time than the previous two, so we'll have to watch it carefully the next couple of days. More chemo tomorrow.

Anyone who can, please consider making a donation today. We have a lot of medical bills that need to be paid and upcoming charges that need to be covered. Today's procedure was about $3,000. Each day of chemo costs $1,500 for the next 5 days. Any and all help is greatly appreciated. Thank-you all for the support!

Visit us at Save Iva.

Results

2009-09-04T12:55:00.009-05:00

Last night was the benefit concert for Iva. Ivana Ristova and Krume Andreevski played really amazing pieces by Ravel, Liszt, and Chopin. That was amazing enough--and then they treated us all to some improvised traditional Macedonian folk songs.

So the turnout wasn't quite the raging success we were hoping for, but given our lack of experience and time in organizing this event, we are counting it as a success. And at least we broke even.

The night before the concert we picked Ivana up at the airport and she spent time with our family.

This morning Iva, Mimi, and Antonio got up early to head out to the airport. A family friend has sponsored a weekend visit to South Padre Island.

Next week Iva starts chemotherapy again. Which is big news, because the last update I posted was that the tumor had grown, which meant she was not responding to the chemotherapy. We went into MD Anderson last week expecting to discuss other treatment options. That was Wednesday. The day before this appointment, we had Iva get another CT scan of the lungs.

From the very beginning of her illness Iva has been stumping the doctors. When her symptoms first began this past November, Iva was sent for scans of the growth that was forming in her rectum. The doctors did not know what it was, and therefore, did not want to treat her.

She again stumped the doctors in Austria who had never seen a tumor behave as hers did. Even after a full cycle of chemotherapy, her tumor grew so rapidly, that the scans showed daily progression in size.

And now Iva has stumped the doctors here in the U.S. Her lung metastasis was 1 cm in size in the May 2009 scans. Then she had 2 cycles of chemotherapy. When she had her CT scan in July, initially the radiologist at Clear Lake Regional Medical Center read the scans and said the tumor was necrotic (dead) and cystic looking. They weren't even entirely sure that the growth was ever a tumor. So we were happy, of course, to get this great news. We gave the July scans to MD Anderson, expecting they would be equally optimistic. Iva started another cycle of chemo while waiting to hear from the MD Anderson doctors.

Then came the news. Not only was the growth definitely a tumor, it had grown! Since there was progression of the tumor, there was no need for any additional chemotherapy. Iva's PICC line was removed and we went to go talk to MD Anderson about clinical trials, surgical options, etc. We took the new scans with us.

When we first got there, we of course had to deal with the usual money issues. The business office wanted to know what we were going to do about the outstanding balance of $26,000 we still owed them for Iva's hospitalization back in May. Zoran offered them half, which was almost all the money Iva has left from donations in her medical fund. They settled for this amount and let us see the doctor.

So Dr. Ludwig comes in and starts talking to Iva about what has happened since he last saw her in May. We asked him if he had seen the scans from the day before that we brought with us. He hadn't looked at them, so he left to do so. He came back 15 minutes or so later.

He tried to show us the pictures, but his computer wouldn't let him open our disc, so he showed us the ones from May and July. Side by side you could completely see that there was noticeable growth in the lung tumor. No question. It was about 2 cm and dense looking. How Clear Lake Regional's radiologist couldn't tell is a mystery.

So then he tells us the amazing part--the new scans show the tumor has reduced back down to its former size. It was about 1 cm again as it was in May! He told us that he had no medical explanation for this. He had no explanation for why chemo after 2 cycles would not work and then suddenly would work after one more cycle.

Right after Iva found out the chemo wasn't working, she ordered a bunch of herbal remedies online. She had been taking these for only one week when the new scans were taken. Dr. Ludwig said that it was doubtful the reduction in tumor size could be attributed to the herbs, since even the most effective chemotherapies take about 2 weeks to cause any noticeable tumor reduction.

He consulted with his radiologist and on Tuesday, he told us the radiologist agreed the tumor was definitely smaller again. And still he had no medical explanation. "Whatever you are doing is working," he said. So after this weekend, Iva will again get a PICC line and begin chemotherapy. She is to have 3 more cycles, for a total of 6, and then we will have scans taken to reassess things. Depending on what is shown in those scans, she could have surgery, radiation to the spine tumor, or nothing.

So now we just have to figure out how we are going to pay for everything. We still owe MD Anderson about $13,000. We owe Clear Lake Regional approximately $15,ooo. Then there are other smaller bills for another few thousand dollars. Right now we are tapped out and aren't quite sure how we will pay for everything Iva needs next week, but we know that we have already received more than we could have ever expected. Including this latest miracle.

All we can do now is rejoice in the gift of Iva's continued healing. We can be grateful that she is still here with us, that she is getting to lie on the beach right now as I write this. That we have met so many incredible people during this journey, including Ivana and Krume, all of who continue to amaze us with their ability to give of themselves, their talents, and their hearts.

Tonight!

2009-09-03T07:32:00.004-05:00

Tonight is the concert--finally! 88.7 KUHF interviewed Zoran, Ivana, and Krume on their program, The Front Row, yesterday. If you missed the live broadcast, you can hear it here.

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door. You can also prepay by credit card through PayPal at www.saveiva.org.

Please note that the venue does not have a credit card machine. We will be trying to do online transactions through PayPal at the door, but do not know yet if we will have Internet access there. If you can, bring cash or a check.

Tomorrow

2009-08-25T20:31:00.002-05:00

Tomorrow we go to MD Anderson to meet with the sarcoma specialist. He will be telling us what Iva's options are. Sometimes choice isn't as great as it is cracked up to be. Like what if all options suck equally? What if one choice excludes you later from switching to the other option? What if you just don't know what to choose?

Hoping for great choices that don't complicate or confuse. . .

Benefit Concert

2009-08-20T18:58:00.002-05:00

Just a reminder to everyone who can attend:

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door. You can also contact us directly and get prepaid vouchers for tickets.

Waiting Again

2009-08-20T01:08:00.002-05:00

Since last Wednesday when we learned the chemotherapy wasn't working, we have been discussing what should be done. The first notion, obviously, was the clinical trial as I already wrote about. But what about surgery? Iva's oncologist that has been administering her chemotherapy told us that in order to form a metastasis, the tumor cells traveled through the blood, thereby infecting her blood with cancer cells. Well if the tumor wasn't responding to the chemo, neither are these rampant tumor cells that they can't see. In other types of cancer they can check the blood for tumor markers to help determine if treatment is working, how much these cancer cells are present in the blood, etc. Unfortunately, for sarcoma there is no such marker test yet. So when Iva asked her about removing the lung tumor, Dr. Kodali indicated that usually they would not do this since it wasn't responding to treatment. Maybe in their experience it doesn't prolong life, maybe the risks are greater than the benefits in most cases, whatever. But this is not the usual case. Iva's cancer has always been very aggressive. Her primary tumor rapidly grew--so rapidly it almost killed her. By the time they finally began her treatment in Austria this past winter, the tumor had begun to grow so large it began obstructing her other organs. The doctors there were stumped. They scratched their heads and proclaimed they had never seen anything like it. Well if that is the case, then this is not the usual case and the usual approach not only won't work, but should be avoided! Right?

So we were trying to get into to see the sarcoma specialist at MD Anderson. The only option anyone was discussing was the clinical trial. So what about surgery? The first appointment they offered us was at least 3 weeks away. Three weeks without treatment of a tumor that is known to be growing even on chemo seemed to us, especially to Iva, to be too long. It was just as in Austria--she felt her tumor growing, told the doctors there, but they always told her the same thing, "come back in 3 weeks, and we'll see what to do." So naturally waiting is the last thing any of us wants to do. We do not want to repeat the nightmare that already was endured due to their delays.

Fortunately we had Dr. Ludwig's cell number (the sarcoma specialist we were trying to get into). He had given it to us when we first met with him, but we had never really used it before. So we called him today. He calls us back and told us that he was going to see Iva on Wednesday. He is squeezing her in! He will do some research, see what clinical trial is available for her, and come up with a couple of options. He also told us that if the business office gave us any problems, to call him. We still owe them $20,000+ for Iva's hospital stay back in May. We applied to the Macedonian government fund for these medical costs, but it appears that due to bureaucracy and other issues, this won't happen. So now the question becomes, even if Dr. Ludwig has a great plan, can we afford it? and will they treat her since we already owe them so much?

On top of not getting anything from the Macedonian government, our fundraising donations have slowed to a trickle. We are organizing the benefit concert for September 3rd in hopes of raising a lot at one time. The success of that, obviously, lies in selling tickets. We are trying several marketing ideas. Hopefully it pays off. If not, I am sure we will think of something, but God! how much can we really take?

More Jazz

2009-08-17T13:20:00.005-05:00

So I just got an email update from The Jazz Cruise.

This is totally like those commercials where the announcer keeps telling you, "But wait! There's more!"

"Hi Melissa,

I’m so excited to report that we will be assigning them a stateroom with a balcony as well!

You will be hearing from me soon! "

So I don't know anything about cruises, but doesn't the stateroom just sound great?!? I mean, really!

Beachin'

2009-08-15T20:33:00.002-05:00

We went down to Galveston today, which is about 30 minutes from our home. We rented an umbrella and chairs and spent a few hours enjoying the day. The water was as warm as a bath, which is my favorite kind of water, and in the shade with the breeze--it was nice. Iva was not able to swim because she still has her PICC line. We are looking forward to her having that out; now that she won't be getting chemo, she doesn't need it. And that will simplfy things greatly for her. She will be able to shower more easily. She will be able to swim with our kids in the local pool. She will be able to do her aquatherapy for her legs. And just the hassle of caring for it will be gone.

Simply--it was a good day.

And All That Jazz

2009-08-14T14:33:00.005-05:00

So 2 days ago, after getting her bad news, Iva mentioned that there was a jazz cruise she wanted to go on. It is a 7 day Caribbean Cruise that leaves out of Florida on November 8th. The main problem with this is the cost--about $2000 per person. But I decided to call to see of they would give us a discount, the most I hoped for was at least Iva's share of the cabin would be free. Her companion's we could pay for. So I called them Wednesday and they said, "No."

Basically they have already sold out next year's cruise, so a discount on this year's was not possible. I told the woman, Patty, about Iva anyway. I gushed out random bits of her story. Patty was geniunely interested, but unable to give me anything. I told her about our website and she asked me to call her back directly if we figured out a way to buy the tickets.

Zoran and I talked it over yesterday and we decided to try to get approval for their payment plan. I called today and asked for Patty, who, I was told, was not in today. I asked if she would be back Monday. The woman, Paula, said she would, but was there something she could help me with? So I told her how I had called Patty on Wednesday about tickets for my SIL and she had told me that no discount was possible, but my husband and I thought we could pay for the tickets using their payment plan, so could she tell me what we had to do for this? She asked me if this was for Iva?

Well they had talked it over and they decided to give Iva a cabin for free! All we have to pay (besides travel fees to get to Florida, of course) are the port fees of $285 a person!

Well I completely lost it at that point, and between sobs and exclamations of gratitude, she told me to call her back with more information.

I immediately called Iva and told her. She was elated and incredulous. All of us are, really. The generosity of others never ceases to amaze. Even in these dark times we can find things to be grateful for, which really is one of the many lessons of the day.

So Iva is going on her jazz cruise!

On another note, MD Anderson is so booked up on appointments, we won't be able to get in until September. This will give Iva the time she wants to cleanse herself of the toxins left behind from chemo and start fresh with a clean, well functioning immune system (we hope!)

From there, we just pray that Iva gets into the clinical trial, that she accepts the therapy as the right course for herself, and most importantly, that she is one of the ones who respond to the therapy.

And in the meantime, we have something amazing to look forward to! Today is an awesome day!

Progression

2009-08-13T05:56:00.001-05:00

MD Anderson read Iva's scans and decided that the tumor in her lung has grown. This means the chemotherapy is not working. And that means, she will discontinue chemotherapy. We are waiting to get an appointment with MD Anderson to discuss Iva being put into their clinical trial for antibody therapy, which works miraculously well, but for only a small percentage of people. (I recall it being 20% of the people. Zoran recalls only 10%.)

Save Iva Benefit Concert Update

2009-08-04T21:09:00.003-05:00

So here are the details:

WHAT: Save Iva Benefit Concert

WHERE: Houston Baptist University, Dunham Theater, 7502 Fondren Houston TX

WHEN: September 3rd, 8 p.m.- 10 p.m.

Pianists Ivana Ristova and Krume Andreevski. Featuring the music of Chopin, Liszt, and Ravel. Tickets are $50 each and sold at the door only.

We are trying to sell 1,100 tickets, so in addition to attending, we need everyone's help in promoting this event. If you belong to a church or other organization, ask if they could place this event in a newsletter or bulletin. Please tell friends, family, co-workers, etc. This is a great opportunity for everyone to support Iva in her fight and enjoy a relaxing evening of great music!

Waiting

2009-08-02T19:28:00.004-05:00

So we have been celebrating birthdays since May. First Maja's, then Mimi's (Iva's mother), then Antonio's, then Zoran's, the Iva's, and last week was Milena's. It is good to have a reason to celebrate these days.

Iva just finished another 5 days of chemotherapy. And now we are waiting, as always, to hear from the doctors.

A couple of weeks ago, Iva went through the restaging process--CT scans of the chest and pelvis and an MRI of the spine. These pictures tell the doctors whether the chemotherapy is working. Her oncologist at Deke Slayton, the clinic that administers her chemo, gave us pretty optomistic news after she had reviewed them. She said the spine tumor hadn't grown, and the spot in the lung was necrotic (dead tissue) and she wasn't entirely sure it was ever a tumor. We gave the discs with these same images to the sarcoma specialist at MD Anderson who had evaluated Iva when she first came to the U.S. in April. His enthusiasm was not as great. He agreed that the spot on the spine was not any bigger, but the spot in the lung was. He also said it wasn't clear whether the spot in the lung was growing due to necrosis, becoming cyst-like or whatever, or whether it was growing as a tumor. She also had several very small spots in her lungs (3 mm in size) that he didn't think we large enough to bother discussing. So their tumor board, which meets every Thursday afternoon, was to discuss her case this last Thursday and they would let us know. We haven't heard anything yet.

What they decide is whether Iva's response to chemotherapy is "acceptable," meaning that it is working and she will continue. If not, she will have a chance to join their clinical trial on an antibody therapy, which works remarkably well, but for only a very low percentage of patients.

This whole tragedy has taught us all so much. First, there are the usual things--life is short, etc. It has taught us that there are many people who really do genuinely care about helping others. And there are those other things you never really want to know about--like what kind of person you become under pressure. What constant stress does to you. What it is like to have nothing left to give.

There is a man at my work who just returned to the office after a prolonged sick leave due to cancer. He is very frail, thin, and all sorts of wrong colors afflict his face. I cannot even bring myself to talk to him, because I know I would be a hot mess if I did. And that is a damn shame, because I know that when people are experiencing tragedy, a lot of people have a natural instinct to distance themselves from the person. And this can really cause people to feel isolated and alone at the very time when they need others the most. I know I have been totally guilty of this in the past. Maybe I just didn't know what to say. Maybe I just didn't want to be the 20th person to make them tell their story that day. Who knows.

Part of the reason I haven't been writing so much these days is just that. I don't want to make Iva's struggle about me. There are always those people who no matter what you are going through, they seem to make every situation about themselves. I just don't want to do that. But the thing I have learned these last few weeks is that inevitably Iva's struggle is about me. And it is about her mother, and it is about her brother, and it is about our daughters, and it is about her fiancee. It can't help but affect us. It just does.

And so I have to continue to write even on the days when I am just consumed about myself and when there is nothing else to report. We have all been having a rough time in our own ways and although there is no change in any demonstrable way, we have all been irreversibly changed. As for me, I may still avoid things, such as an ailing co-worker, but not because I don't care enough or feel anything for him (which I think is the truth of the past), but because I feel everything too much these days.

Benefit Concert Postponed

2009-08-02T13:52:00.003-05:00

The concert that was suppose to happen tonight has been postponed.

We have rescheduled it for September 3rd.

More information will be forthcoming.

Just a bit

2009-07-20T21:40:00.002-05:00

Just a bit about the latest.

We are having a benefit concert for Iva here in Houston at UH Cullen Performance Center on August 2nd at 5 p.m. This is a classical piano concert. This event is only in a couple of weeks so we need as much help as possible with organizing a mass of people to attend. We are aiming for 1500 tickets to be sold. They are $50 each and will be available at the door. More to come, but please tell everyone you know!

Iva went to physical therapy today for an evaluation. They are going to do some strengthening for her legs and such.

She also went to the oncologist, who was her to have a new PICC line in tomorrow and start chemo the next day. The "tumor" in the lung is either dead or was never a tumor to begin with. It is not clear. The spot on the spine is essentially unchanged, which is progress if you look at it properly. The MD Anderson sarcoma specialist who initially evaluated Iva said he would be satisfied if the tumor did not grow. So we are choosing to count this as a victory.

More to come. Kids are crying!

Birthday

2009-07-17T12:00:00.003-05:00

Iva's birthday was this past Sunday. We had a small gathering of friends, ate great food, and just enjoyed the day. For her gift, we wanted Iva to go pick out a wig. She has been a bit disgusted by her appearance and we were hoping a wig would help. Amazingly, it has. She feels great in the two she picked out and I will post pictures soon.

As for Iva's medical progress, she is suppose to have an MRI tonight. That will tell us what the spine tumor is doing. If there are favorable signs of response to chemo, she will get a new PICC line next week and start two more rounds of chemotherapy.

Great News

2009-07-08T22:17:00.002-05:00

Iva's CT scan results are back, and the doctor said that there are no new spots. The spot on her lung looks like it is necrotic (dead), and in fact, the oncologist isn't sure it was/is a tumor afterall. Or that is what Iva understood her to say.

So all that remains is an MRI of the spine so we can see what is going on with that tumor. We are rejoicing a bit, but are still hesitant to sound the victory bell just yet.

Iva is even more hesitant than us to feel any relief, but hopefully after the MRI she can have some moments that replenish her for the fight to come. For the best news (that the tumors are responding) means more chemotherapy. There will be several more rounds to come. 5 days of chemo, then 2 weeks rest, 5 more days of chemo, then more scans. This process will be repeated for several months, more than likely. And in between, when she has no immune system, then more potential infections and other risk for complications. There will never be a time, at least not in the immediate future, when we will be without some feeling that something else is lurking. We pray for that day to come, but realistically, I know it won't be any time soon. But it is what it is. As long as we are in the fight, that means there is life. And as long as there is the strength of faith, then there is the will to fight.

Whenever anything tragic occurs, the most human response is to try to find meaning in it. The optimistic thing to do is to look for the "silver lining." In just these last 2.5 months, we have received support from so many of you, some of you whom we already knew, but many of you we did not. The fact that a complete stranger can be affected by Iva's story and moved to support her in her fight is a truly astonishing thing. This is our silver lining.

As an example, there is a pianist who lives in Chicago and is organizing a concert to be put on here in Houston for Iva. She has never met Iva or any of us, but is a friend of a friend of Iva's from years ago.

For all of our Houston supporters, save August 6th in your calendars. There will be tickets going on sale soon for this event, the proceeds of which will go to Iva's cause. More info to come.

And on a more immediate note: Iva is suppose to be coming home tomorrow. After one week in the hospital, she is ready!

Hospitalized

2009-07-06T21:11:00.002-05:00

Iva is still in the hospital. She had another really high fever--about 103 for 5 hours today. She shivered so much and for so long, her muscles ached, especially her leg that has been bothering her.

The hospital finance people have been by to see Iva at least twice to discuss the all important issue of "How are you going to pay for this?" They have already said she does not qualify for state or county assistance, which is no surprise since she is not a resident, but interestingly, the hospital has its own charity program that she can apply for. In 6 weeks we will find out if she is a charity case or not.

Tonight she had a CT scan for the restaging. Since she was already in the hospital, her doctor ordered the test. She was too weak to go by wheelchair, so she went to the test by hospital bed. She drank half of the contrast and promptly threw it up. So they gave her the IV contrast instead. Hopefully tomorrow we will know the results. This test will show whether she has any new metastases or growth in the 2 existing tumors. She may still need an MRI for the spine metastasis. No one has told us for sure.

The blood cultures so far have not been consistent with the type of infection they thought she had. Initially, the oncologist assumed it was a PICC line infection, since it is common. However, the cultures are more consistent with a urinary tract or digestive tract bacteria. So they are changing her antibiotics and we will see. We can only pray that they know what they are doing and that this new fever does not represent a new infection picked up at the hospital, which is, unfortunately, more common an occurrence than it should be.

The house has been still and less full. None of us is enjoying it. We pray that Iva is home soon.

Set back

2009-07-04T15:15:00.002-05:00

Last night about 6 p.m. Iva spiked a fever. After talking to her oncologist, we rushed her off to the hospital. We didn't want to go through the emergency room since they would just charge us more and since we knew she had to be admitted. We didn't need an ER doctor to tell us that. Unfortunately, we had to wait for an hour in the ER waiting room for her hospital room to be ready. They were disinfecting everything getting ready for her, which is great, but at that same time she was miserable, shivering from fever, working up a monster headache, and feeling like total shit. Difficult to be understanding and patient in that situation. But we did our best.

She was started on a mixture of antibiotics. They think it is an infection in her picc line, but they won't know for sure until the blood cultures come back, which takes 3 days. In the meantime she has to go fever free for 48 hours before she can be released. She still had fever this morning, so she will be there for at least another couple of days.

The good news is that Iva's white blood cell count has finally rebounded. From 0 a few days ago to 12 today. That's at least something we can feel good about.

Leg

2009-07-01T05:52:00.002-05:00

Iva went to the orthopedic doctor on Monday. Although she has been handling the side effects of chemotherapy pretty well, she still has some real problems with walking. A couple of weeks ago she had undergone a bunch of scans of her pelvis, hip, and upper leg to see what was going on. The good news is that there is no new tumor growth in any of those areas, and her problems are all related to the surgery she had back in February. Her gluteal muscles and pelvic muscles are a real mess. So her hamstrings, especially in the left leg, are very weak and not working properly. So she can go to physical therapy to strengthen these.

The not so good news is that she has 0 immune system. Despite trying a new (very expensive) drug this time to stimulate white blood cell production, she has 0 neutrophils.

So to do physical therapy at this point and expose herself to the big, germy world out there seems like a bad idea.

The thing about cancer is that there is always something. Always something new to worry about. Always some other test result to wait on. You can never really ever take a deep breath and say, "OK, things are good right now." Cause you never really know. In Iva's case, we still don't know if chemo is working and what this whole immune system thing means. Later this week or next week, she will undergo a full scan to see if the tumor in her lung and spine are responding. If they are, then she will get 2 more rounds of chemo followed by more scans. If at any point, her tumors grow or multiply while getting chemo, then they stop the therapy. And that is the reason we cannot breathe.

Finally

2009-06-18T21:30:00.003-05:00

Iva started chemotherapy yesterday. She has three more days and then this cycle will be done. So far, she is feeling pretty well. She is just more tired than usual. She has been making us the most lovely of all pastas for dinner. It is so great to see her up and around doing these domestic things.

Saturday and Sunday the oncology clinic that has been treating her is closed, so she will have to go to the hospital to get her chemotherapy those days. Then it is more tests and scans to see if it is working. Dr. Ludwig at MD Anderson will assist in reading the films to decide what to do next.

Monday Iva has an appointment to go see an orthopedist about her leg. He will be telling her what he thinks is the main cause and whether there is anything to be done.

Our Iva has been enduring so much and yet her spirit is shining on. We love you, dear Iva!

Another delay

2009-06-15T18:24:00.002-05:00

So another false start today. No chemotherapy due to white blood cell count being too low again. The goodish news is that the scans showed no new tumors, but they did show the seroma has returned and is now two. The walls encapsulating the seromas are too thick to puncture with a drain as the risk of excessive bleeding is too great. The only way to remove them is through an open procedure (a.k.a. an operation). Since her immune system is too battered and she is to be getting more chemo, I don't think it is possible at this time. So the discomfort will probably continue. The problem is that the seroma forms because there aren't enough white blood cells, which are responsible for "eating" the serum. This causes the seroma to keep returning. At least that is how it as explained to us.

Today and tomorrow she will be getting immune-boosting medications (the same ones that already did nothing) and on Wednesday they will test her again. These delays are immensely draining for all of us, and we hope there won't be another.

Art-tastic

2009-06-14T20:15:00.003-05:00

Today Iva decided she wanted to go to church, so she and Tony and Zoki went down to Galveston to the Serbian Orthodox Church. Zoki said the priest had a new robe, and he could tell he felt inspired. Good stuff.

Then we decided to head into town to go to a museum I have been wanting to go to since I heard of it nearly 5 years ago. The Menil Collection is not too terribly big, but it has a great selection from Medieval pieces (even 2 from Macedonia!) to 20th century modern stuff. There was one particular temporary exhibit that none of us got--a bunch of lewd and intentionally shocking pieces that seemed old hat really--vaginas, boobs, dead people, etc. (One of the pieces was, in fact, titled "Dead Girl.") So unimaginative, really. Perhaps it was her obsession with death that was so incomprehensible to us--we who have been focusing nothing but on life.

So the best part is that we got to get out and do something to enjoy the day before she starts chemotherapy again tomorrow. It was a typical hot Houston day, but it was time well spent.

Latest

2009-06-13T18:42:00.004-05:00

Iva finished the first round of chemo and everything seemed like it was going well. Then she developed increased leg pain and swelling and the old pain with sitting returned. She has been undergoing tests of her pelvis and leg these last few days, and so far we know nothing that explains the pain. Her seroma is returning, but that doesn't explain the pain, weakness, and swelling of her leg. Today we went the last of the test, an MRI of the pelvis and upper leg--a $2,100 test. (And that doesn't include the fee for the radiologist to read the results.)

This past Monday Iva was suppose to start chemotherapy. After running blood tests, they decided her white blood cell count was too low. So despite giving her the medications to boost production, her immune system had been wrecked. Interestingly though, we have had an outbreak of a summer cold here, but thank God, Iva did not get it!

So Monday she is suppose to start again. Five more days and then more tests to see if everything is working.

In the mean time, we have been spending time together, eating and trying to forget. Tonight Iva is making us pasta and a lasagna for tomorrow.

Hot Bliss

2009-05-26T18:44:00.004-05:00

Iva has been feeling well, but the heat doesn't agree with her. We went to Kemah, which is a boardwalk on the water where you can sit at a restaurant and watch boats float by from their covered patios, or you can sit by a large water fountain where children play in the water, and really awful (sometimes) cover bands try to recreate the magic of CCR and other 70s rock bands. It was too hot for her, as you can see by her expression in the first photo. Even though we were in the shade, she was miserable.

Today we went to the doctor for blood work and they found (as expected) that she is anemic and her white blood cells are too low. So she got 2 injections of medications to help stimulate both red and white blood cell production. This is all very science fiction-esque. The fact that she even has the option to receive these medications makes her move here to the US such a blessing. The only drawback, is that today cost more than a day of chemotherapy. Her chemo has been costing us about $1500 a day, on average. Today, with labs and the 2 shots only, it cost $2000. The moral of the story: science fiction costs a lot.

But the silver lining: I hear her in the other room playing with my daughters and it is the most amazing sounds in the world. I have goosebumps from the overwhelming sense of joy. My oldest daughter, Milena, has especially developed a bond with Iva. She wants nothing more than to be sitting in teta Iva's lap, being kissed and hugged, and experiencing nothing short of pure bliss.

Thank-you everyone for your donations and prayers that continue to make this all possible. You are the reason she can have this life, this time, this hot bliss!

Stronger

2009-05-22T16:22:00.003-05:00

When Iva was in Vienna, she was mostly bedridden. She was too weak to sit up for any period of time, and definitely too weak to walk. After her surgery, she had briefly been able to walk up and down the hallways at the hospital, but as soon as she started chemotherapy, she was back in bed. When she left the hospital at the end of her chemotherapy, she was still too weak and debilitated to walk or sit. She was too nauseous to eat. She vomited all the time. Her heart felt like it was beating too slowly to support her movements, and she couldn't breathe too deeply. This was Iva's idea of chemotherapy.

When we went to visit her in Vienna and in the weeks following, I kept promising that here in the US it would be different. Not only would she not be in the hospital while getting her chemo, but that she would feel immensely better. She would not be vomiting all the time. She would not be so weak that she couldn't leave her bed. I was about 90% sure of that based on the people I have known who go through chemo and finish without having lost any weight (even though some of them had a lot to loose.) Well anyway, I don't think she much believed me. But a couple of nights ago, as she was finishing her dinner, which consisted of a pork chop, rice, spinach, and bread, I enjoyed an "I-told-you-so" moment. She flashed me one of her gorgeous smiles (for those of you who know Iva--you guys know what I am talking about.)

And then this week, even though she is getting chemotherapy, we have witnessed many improvements in her level of strength. She got into the car all by herself a few days ago. While sitting on the couch, she was able to raise her feet off the floor onto the couch. Two weeks ago she could not do these things. What a blessing to have her here in the US with us!

So she finished these first 5 days of treatment. Now is a 3 week rest, and then another 5 days of chemicals being pumped into her body. Then all kinds of tests to see if this whole thing is working. The suspense is neverending!

Chemo Take 3

2009-05-20T21:12:00.002-05:00

So on Monday Iva began her chemotherapy. So far she has had some headaches, very mild nausea, and general fatigue. Nothing too bad. We are hoping this is the worst it gets.

She has been eating lots of pasta. Some hamburgers and hotdogs. She had a bit of a donut this morning as well. Crazy diet. But whatever makes her feel good is a great thing.

Iva still is not 100% sold on the idea that chemo is the right therapy. Healing through making you sicker is counter-intuitive, for sure. But really, when you have stage IV sarcoma, what choice is there?

We are just praying that in a few weeks when they do her re-staging, it will be shown that the "evil pharmaceutical companies" have it right. Where one decides to place one's faith is a personal choice. There is no real way of knowing if it is the right choice. But that is the whole concept of faith, right? Believing without seeing? Right now we have chosen to believe the chemotherapy drugs will heal Iva--that she will rise from this destruction of her body and live more of her life.

Kickin' It

2009-05-17T22:16:00.004-05:00

Iva starts her chemotherapy tomorrow, if the doctors give the green light. We have to wait to hear what her labs from Friday showed first, but either way, she is having a PICC line placed in the morning. Then off to see Dr. Kodali and possibly her first of many rounds of chemo to come.

Fortunately, we have been witnessing a great improvement in her strength levels these days. She has been able to walk a lot more and use her legs more than she previously could. She felt so good that we decided to take a day's trip to see some more of Texas. We loaded everyone up in our sexy minivan and headed out to see some of the countryside surrounding Houston. It isn't much to look at, but it was nice to get out and forget about things (sort of) for a while. On the way back today, we got some lunch at a gourmet restaurant, also known as McDonalds, and Iva ate a whole Big Mac meal. Last year at this time, Iva was a vegetarian. Now, she craves hamburgers.

Tonight she cooked us some pasta and now we are just waiting anxiously for tomorrow to start. We pray that the chemo does what it is suppose to do and kicks some cancer ass!

2009-05-16T07:21:00.002-05:00

We went back to MD Anderson yesterday to follow-up with the radiologists about her surgical drain. They removed it and we took the opportunity to visit a nice little oasis Antonio discovered in his quest for a smoke.

We then went to the new oncologist, who will be administering Iva's chemotherapy. It looks like she will be starting chemotherapy on Monday!

Today we are just going to all spend time together as a family, enjoying time with Iva while she is feeling relatively good.

Home Again Home Again

2009-05-12T21:44:00.003-05:00

Iva came home from the hospital today. I went up there expecting to have to battle with the business office. They had told Iva she couldn't check out of the hospital until she paid them the $35,000 bill. The whole thing is outrageous. They know she doesn't have money, and yet they threaten her like she is some kind of criminal. My God! Like they were going to hold her for a ransom, and if I didn't fork over the $35k all in unmarked bills, placed in a bag, in the trunk of my car, and left in parking garage 10 south on the 5th floor, then that was it, they would keep her in the hospital and keep treating her indefinitely! What a threat! I mean, really!

In the end, we left without anyone saying anything about money.

The good news is that she has been without a fever for a couple of days. They so-so news is that she still has the drain in place, which is a bit uncomfortable, and disappointing for her. The healthcare system here in the United States is a bit different than what she is used to, I think. You are sent home with apparatus (like a drain) that you would never be sent home with in places like Vienna. Not that one is worse than the other, it just takes getting used to. There is a certain level of self-sufficiency and self-doctoring that is required here.

The bad news is that MD Anderson decided not to work with us on the price or the payments. They said that since the medications she needs can be received at other medical clinics in Houston, they had no reason to reduce their rates. (Plus due to the economic crisis, they have been laying off some of their employees. They rely heavily on donations and have recently experienced a dramatic reduction in the amount they receive.)

The other good news is that we have found a clinic that will work with us. It is really close to our home. The doctor is not a specialist, but is only a general oncologist, b. However, the sarcoma specialist (Dr. Ludwig) at MD Anderson will oversee things and assist in the decisions in Iva's care. He will also be available to review test results, such as CT scans. This is all very good. They told us they would charge 1/2 of the regular price since she is uninsured. What we don't know is what the regular price is. We will find out later this week.

So for now, we are all home again. Together. That is the best news of all.

Blame the Arabs

2009-05-11T22:14:00.004-05:00

Today we went to talk to anyone who could help us at MD Anderson. We started with the Social Work department. Total waste of time. "If she is a foreign patient, you need to speak with the International Center." We went to speak to her International Patient Coordinator, a really lovely woman named Elnar, and she told us we could speak with the patient advocate, which we already had on the list, so that was good. She said she would also speak to her own boss, since she carried more clout, and they would get back with us. We spoke with the patient advocate next, another reasonable woman, who told us that there was one thing, it is called a medical override. Apparently, the doctors in the hospital's Vice President's office can authorize this if they are so compelled to. It would mean a better payment plan.

Then Iva's doctor came to visit her, after the patient advocate had told him all of this. He asked again about her going back to Macedonia and having them administer the treatment with him coordinating her care. We tried our best to explain to him how completely unacceptable that is just because the medical community there is unprepared to deal with any complications she might have. Then he brought up Austria again, which is also not a viable solution, because of the time issue. It would take time to get visas again, if they even could, and they would have to find a place to live, and they would have to wait for the hospital to have "room" for her (a problem in the past, which caused several delays in her treatment), etc. etc. Also there is the cost factor there. It isn't that much less expensive than here. The number one problem with Vienna, though, is there constant lack of urgency in Iva's case. There was just too much inaction on their part to ever make us comfortable with entrusting her in their care again. No thanks.

So Dr. Ludwig had the idea that he could ask them to treat Iva for a fairer price, he said "as if they weren't trying to make $100,000 off of her case," or something like that. He wasn't too optimistic. Unfortunately. He told us all about MD Anderson being a state hospital, about them trying to stay afloat economically, about their priorities being with Americans, blah, blah, blah. And interestingly, he told us that the self-pay foreign patients are always handled this way because most of them come from the middle east and have the cash. Just like the price of gas, you can blame the cost of care at MD Anderson on the Arabs too. :)

Tomorrow we are suppose to hear what they decide. Another fret-filled day.

Update

2009-05-10T09:41:00.002-05:00

Iva is still at the hospital. Friday she underwent a small procedure to drain the abscess that has been causing her fever, and left a tube in to drain any remaining fluid. She is doing well and we hope that this will improve her ability to sit more comfortably.

Tomorrow Zoran and I are going into the hospital to fight for Iva. Friday we met with the business center who gave us the cost estimate. Not only was the price outrageous, but they want 80% of if up front. They told us that the prices were the self-pay prices, and the 80% was required because she is a self-pay patient.

What that means is that if you don't have insurance, then you are required to fork over almost all of your cost up front, and you get charged more for each item/service than the person who has insurance. It is a double whammy.

So the way they figure the cost is by every 2 cycles of chemotherapy, which is a 6 week period consisting of 5 days of chemo, 2 weeks rest, repeat once, and then CTs and such to re-stage the cancer. For each of these 6 week cycles, they want $122,000! That means for someone with Iva's needs, if she were to get the amount of chemo she needs (40 weeks), she would be paying over $1 million. And that is if everything goes smoothly without hospitalization, surgeries, or other unforseen events. Before they will begin treatment on Monday, they want us to give them about $100,000. Who has that much cash available to them? And what is worse is that you are dealing with a patient who has no financial means, who is supported through friends and family, and who is from a country that doesn't have the medical resources to care for her. What is wrong with this picture?

We offered to make payments on her bills, but they refused. Their suggestion? Can't she go back home and get treatment?

MD Anderson has a slogan, "Making Cancer History." Apparently, they will make cancer history only for those patients who have deep pockets.

This is why tomorrow we are going to talk to as many people as we can to tell them Iva's story and how ridiculous they are being. All we ask is for a fair price and a reasonable schedule of payment. Oh yeah, and just the little thing of them saving her life.

Emergency

2009-05-07T23:00:00.004-05:00

So all day Iva had a fever around 39 Celsius (about 102 Fahrenheit, I think) and nausea, etc. We tried to reach her clinical team at MD Anderson starting around 9 a.m. Finally afer severl more calls with no response, at 5:30 p.m. the nurse calls and says she spoke with the doctor, please bring Iva to the emergency room.

Yesterday, the doctor told us Iva has a seroma. It wasn't too concerning since we were also learning about the spot on her spine and confirming the spot on her lung. Those two things eclipsed this other sack of fluid in the pelvis, because the doctor didn't seem too concerned about it. Afterall, it isn't cancer. But because of the fever, he thought it might have become infected.

So we get there, they do an x-ray, take her blood, and then lie her on a bed in the hallway. There are no rooms available, it seems. All rooms are full of sick cancer patients. Some of them are pacing around. Some of their family members are stopping at the ice/water machine right next to where Iva is laying. Some of the patients are vomiting loudly. And all this time, hospital employees pass by, most of who avoid eye contact, out of the distinct hope that you won't make any demands of them. After an hour or so of this, no one had told us what is going on, so I stopped a nurse and asked her, "Who can I ask about her case?" She finds Iva's nurse, and in a few more minutes the nurse comes over, "Did she just get here?" she asks. "If you consider an hour ago the same as just having arrived, then yes," I replied. So then the doctor comes and asks some good and some stupid questions ("Does it hurt when you pee?") She has a urostomy, for God's sake! Then the IVs are started and we are told she is to be admitted into the hospital for a few days. Once they have the results of her blood cultures, they will know if there is an infection and whether the seroma has to be drained. Antonio, fortunately, is able to stay with her. So another night for them together in a hospital. I told them that for the rest of their lives together, hospitals will make them feel strangely romantic.

Unforseen complication, but overall it does not appear to be too terrible. Just very uncomfortable for poor Iva. Ugh!

Mixed Bag

2009-05-07T06:57:00.004-05:00

So there is a spot on the lung and a spot on the L1 vertebra, both believed to be metastases. On the positive side, the spot on the lung has not grown since February, and the spot on the spine appears to have been responding to the chemo she got in Vienna.

Iva isn't sure she wants to go through chemotherapy if they best they can give her is a 5% chace. Why make yourself sick for that?

How can you argue with that? I don't know what else to say.

Cinco de Maja

2009-05-05T21:54:00.004-05:00

Today was Maja's birthday, and she got to eat cake and just be with teta Iva. How great a gift is that?

Tonight she is getting more tests done, the MRI of the spine. And tomorrow we will have a nervous day, I am sure, as we await the time to see the doctor who will tell us what he sees and what he plans to do about it.

Disbelief

2009-05-04T21:29:00.006-05:00

So these last few days have been a bit dark. Iva was faced with that pessimistic number--5%. And armed with feelings of doubt fed by the doctor-father who assured her that if the lung images were sliced at different layers than previously, the radiologist wouldn't be able to see spots that were really there. Pessimism and doubt.

We, however, are claiming her victory. We are claiming that she can be healed. We are claiming that she will be a sister, a daughter, a wife for years to come. This we believe. This we must believe, even when the hard rationality of 5% is staring us in the face. That rationale, that reality, we chose to disbelieve. And fortunately, it appears that Iva is coming around to that disbelief as well.