Tomorrow

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

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

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

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'

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

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

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

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

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

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

We have rescheduled it for September 3rd.

More information will be forthcoming.