Hot Bliss

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

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

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

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!

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

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

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

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

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

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

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

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.

Noggins

Since Zoran shaved his head, he and Iva have come to realize how much genetically they have in common. For example, the contours of their heads, the shape and fullness of their lips. It is all the same. Zoran took Iva to the bank today to set up a trust fund for the donations we are hoping to receive, and the lady asked them if they were twins. Funny.

Iva is getting more tests Tuesday. They are taking a pelvis x-ray and MRI of the spine. Then Wednesday, it is the doctor again and probably chemo. We pray for clear reports on all accounts.

In the meantime, we are enjoying just being together. Eating, laughing, playing with the kids. What a blessing!