Natalia's journey

In reality our entire family news will be shared through this blog as our baby grows and as we fight cancer.

Friday, January 26, 2007

I am going to glow starting next week!

Well, my insurance will not pay for proton therapy so MD Anderson will do regular MRT radiation on my chest. This Tuesday I went for a simulation and had one of the worse days in the year that I've been going there. No, it's not the doctors or staff, it's the PARKING! It was raining by the time I got there and they didn't have any capacity at the valet parking or the garage. I ended up circling the 10 levels of the garage for an HOUR driving myself into enormous stress, exhaust and frustration of being unable to get to the appointment. Apparently, several more people complained that day that they were refused the valet service, which is a huge blow to any patient. The parking service manger called to apologize and said they should have parked my car since I am the MD Anderson patient but it was too late for me ... I was so stressed and sick I had developed a chest pain that is still with me whenever I inhale deep, not to mentione a headache and a drop dead condition.... once I slept for an hour in a room waiting for the new appointment I felt strong enough to go through the simulation, which went almost fine. Why almost? Well, no one told me they would put 3 tattoos on me -- it came as a surprise and it was so painful, I don't know how anyone wants and ends up doing them! And it looks like it will be a huge area that's going to be radiated -- about 8 cm round = 3+ inches (at I thought it would be about 5 cm at max).

So I am still concerned about my lugs, my heart and my breasts short and long term .... wish me lots of positive and healthy vibes as I start a 3 week glowing journey!

Friday, January 19, 2007

CT still shows some residual pneumonia...

Well, what can I say? It looks like it's a hard-to-die kind of pneumonia... I just have to be patient and not let it into my head. In the meantime, the oncs feel comfortable enough to proceed with the radiation starting next week. Not sure what kind it will be just yet, but I will keep you posted. Honestly, I am still kind of scared of pneumonia coming back during or after rads .... and I would hate to do the pneumonia treatment again -- for me, it was as hard as chemo; I am still so drained and the cold weather isn't helping at all!
I've tried to be more involved with my baby (more active so my back has been aching a lot more than ever). But, I am not going to let the pain get to me -- my dad is here 3 more weeks so I have to stay strong and positive! And thank you all for the encouragement and support - I really need it!

For now, my new mantra is: "I am almost there - this is the last stretch!"

Friday, January 12, 2007

Results ... or lack of them

I spent entire day (8:00 am - 6:30 pm) at MD Anderson and it really drained me! Someone made a costly mistake of not scheduling my CT scan and while I inquired about it 2 days beforehand it still didn't get done, so this ordeal resulted in me being scheduled for a 9 pm scan - I had to beg the staff to take me in as early as possible as I could not eat anything before the scan so I was getting light headed... I am still tired, honestly, and I don't know if my pneumonia is gone -- hope to know results next week, I guess.

I also saw OBGYN about fertility preservation -- apparently, there is a trial study with 2 hormone shots but no one knew about it! I am sensitive about this issue as I feel this is such an important subject for all going through SCT; yet they seam to be so preoccupied with saving a patients life they forget about anything else - like quality life with kids and family!

And on the good side, I met the radiation oncologist - a young doctor of Indian descent who was incredibly informed. In my case, with my disease being refractory (meaning stubborn) they all want radiation -- question is what kind? My 3 options are: 1) standard radiation 2) IMRT radiation 3) new proton therapy. At the moment they are researching what's best for me but it looks like the choice will be 1 or 3. Apparently, IMRT would do more damage to the breast tissue (it touches more tissue from different directions) and thus increase my chances of secondary breast cancer. And the proton is so new, no one knows for sure ... but again, it shoots from the front only and would probably pick up extra tissue too... And to top it off, who knows if the insurance would approve the proton therapy... So in the meantime I wait for CT results on pneumonia and plan on about 3-4 weeks of radiation thereafter .... Oh, decisions, decisions but the end of treatments is near!

Thursday, January 04, 2007

What is wrong with us?

The title may sound hush but we just received some shocking news that I jut can't get over... one of our good friends just lost his 20 year old daughter on Christmas day ... she died here in the Woodlands at a Christmas party where they had a competition of who could drink more...she got over intoxicated ...what? why? I just don't get it...

Here I am desperately trying to survive and make it for my baby and my family; and here is a beautiful healthy girl gone out of no reason... She had a kind heart - loved Andryusha, wanted to have a family and a lot of kids; loved life and all of a sudden gone... how does this happen? Why? Who's fault is it? Is it mine, the parents or society at large? Why do we drink or put up with it if we know it's bad for us all and those around us? I don't protest or say anything .... in fact, most of us just let it go and let it happen.... next, we loose our children because they copy our weaknesses as they don't know better -- they don't know life and they don't value life! It seems we are a society pushing the extremes.

Anyway, I am so lost and heart broken ... sorry, if I offended anyone but I just had to pore it out. So that's the news... I've been very tired ... don't know if it's from the holidays or just the news or all of the above... Holidays are over, no more breaks... next week I'll be going for the scans and a radiation consult ... I'll keep you posted.