Natalia's journey

To a new beginning… indeed

2009-01-20T22:12:00.005-06:00

A historical moment for America today and perhaps for the world at large as Barack Obama was sworn into power as the new President of the US. It was heartwarming to see so much hope and unity in the record outpouring masses of people who believe that a stronger US and a better world is going to come with this new President.

Is this a new beginning? Yes, to an extent, it is very new as this country never had an African American president before. While laying down on the sofa, wrapped up in blankets and overcoming yet another flu and watching the inauguration I could not get rid of the feeling that I’ve seen these familiar emotions of the masses before. And then, when the parade began it dawned on me ….. Yes, the very same feeling of new beginning was in the air when JFK was elected as a young and very promising President. And I could sense the tension of broadcasters as they explained the new security measures that have been taken to protect the president. A shadow in the car or the figure through the thick glass is all we get these days – all in efforts of preventing any sort of assassination attempt (those who watched the inauguration will understand what I mean). There is a theory that the world develops in a spiral way, repeating itself but on a new level and today I would have to agree with it as not even 50 years have passes sine JFK, and today people are experiencing similar emotions but on a new level of civilized unity and politeness not seen before. I am glad everything went smooth as planned.

If the new president would ask me what is my wish that he could fulfill (I am dreaming here, alright) I’d say to keep promulgating the message of unity and peace among all people and countries of the world; and to support this main message with actions that would mark his name in history not only as the first African American President but as the President who fulfilled and accomplished the promises he gave in his eloquent speeches during his campaign. Finally, it would be nice to get permission and funding for stem cell research that has been on moratorium for the last 8 years but in retrospect to the previous requests it’s just an added bonus.

Well, as for me, I am still here…. alive and well, December scan showed no cancer except for uptake in the sinus and throat due to never ending throat cough and flu. Andryusha started going part time to enrichment pre-school every day and since then I am on a mission to be up and about by 8 am – a very hard task for me till this day. The scheduled life is so hard on me that I had to make conscious decision to just cut some things out to allow for more rest with my increased responsibilities. It’s been 6 months since the last post and during this time we survived hurricane Ike – we’ve been blessed with only minor damage which resulted in roof replacement and kitchen remodel. We experienced a week long episode of ‘Survivor’ - an interesting week without electricity but still blessed with water and decent weather and frankly I enjoyed a week with no TV, Internet, school, phone calls, cooking or laundry. We’ve been blessed with great neighbors – everyone came out in the afternoon to chat, get updates or help each other where possible while the kids had a blast playing together like I did in the 80s. Yep, back then there were no computers or Wii and we had plays with real kids in the great outdoors and no one was afraid to be stolen or kidnapped. I am happy our neighborhood kids were forced to come out and get to know each other – they now hang out more often together.

Also, we’ve celebrated 4 birthdays – my dad turned 60, Andryusha is now 3 and we are still in our 30s (hence, all the new music in my play list). Then came the holidays with hectic school activities; I didn’t dare shopping cause it didn’t feel like recession whatsoever in our town – crowds were everywhere. Also, Raymond has been working out of town many of the weekends; and finally, in between all these happenings I’ve been still getting sick – hence, no posts for 6 months.

I suspect this new year is not going to change much but perhaps even demand more from me as I still hope to get back to work at some point in time – I am getting stronger and have more and more good days and since it’s been 2 years since the transplant I am greatly relieved emotionally knowing that my chances of relapse are only 5 percent. I am quietly happy to know that I’ve made it and perhaps some day I will be able to tell the full story without tears. May be I’ll even find the time to write the book – the blog has most of the facts but much of emotional drama is untold.

Everything happens for a reason and all for best. Cancer was very rough but it made me a better person and hopefully a better wife and mom. Hurricane did a lot of damage and destruction but united neighbors and communities. United States had a rough 8 years with struggling economy, devastating terrorist attacks and wars beyond the stretch limits but in turn it made the people ready for the change with the new party in change and history marking President. So even out of something utterly bad spirals up something beautiful and good.

I thank you all for walking along my journey – I could not have made it without you. I thank MD Anderson for saving my life. I thank my son and my husband for being there for me every minute till this day. And I thank God for showing me the meaning of life and giving me a chance to fulfill it. For now, this blog has served its purpose – it is time to close the cancer chapter of my live and live happily ever after.

Not a farewell -- just a "Good bye! Poka!"

Faith, Hope and Love

2 years in Remission - Namaste!

At MD Anderson, Houston, TX

Happy 3rd Birthday, Andryusha!

"Light the Night" walk - Lymphoma and Leukemia Society Fundraiser in the Woodlands, TX October '08

Breathless...

2008-07-01T10:09:00.008-05:00

Literally and figuratively .... You can't even imagine what we've been through since last Wednesday. No need to watch the latest drama/suspense show... I've got ER showing unannounced right here at home!

The usual scans were scheduled, life was hectic as Raymond was constantly away for an intense summer project with the youth. Wednesday rolled around and Raymond was going to take care of Andryusha while I was at MDA.... well, I got up tired after another bad night of "imitation sleep" and slowly drove off. That day was hot and I was feeling dizzier under the sun waiting for the bus to take me to MDA. I thought things were getting better once I was taken in promptly but then I had trouble gulping down all 3 cups of the contrast. Mind you, I am already on the thin version (Gastro) that's milder on the stomach but now I know my sensitive stomach can't tolerate even that. I had to stop at a little over 2 cups and went for scanning. For whatever reason, the tech lady did the scan in a different order and left me laying on the table after additional contrast infusion. I tried to tell her that I needed to get up to breathe (I get nauseous and dizzy) but she kept me down as she took the last 2 slides. Well, I could barely walk once she helped me get up and I was short of breath. The nurses were great there though - they immediately hooked me up to oxygen, took my pulse and blood pressure which was low 80s over low 50s. Once I was stabilized I went home and I was so exhausted I went straight to bed only to be up a few hours later with shivering fever. Covered with two more blankets I felt better though my stomach was not cooperating so I was up and down all night long. Thursday came along and I knew I was not right ... sick in my stomach, weak all over the body, temperature spiking up and down and Andryusha coming down with a similar fever! I think we have a strange connection -- my baby feels everything that's going on with me and gets sick in his little efforts of relieving me from pain! I guess I do the same when he gets sick and I follow him. Well, we've been through all this before and it's hardly scary anymore -- we just deal with it.

Here is when the real scare kicked in.... Thursday morning I started having some sharp chest pain and it didn't go away through the day, and in the night as I was having fevers again I realized the pain was keeping me awake and it was so sharp that I could hardly lay in bed, I couldn't lay on my left side; Friday crept in and I started having difficulties completely exhaling due to the chest pain. Fast forward this to another feverish night where I am staring into the night trying to find some reasonable explanation of what could it be, naturally thinking 'I hope it's not another pneumonia', where in the world could I get it and since I am not coughing (but I do have trouble swallowing) what else could it be..... what else? what else? ... and then it dawned on me ... and the sheer idea left me breathless for a long while! The intensity, the gripping power of this one thought left me paralyzed for more than a few minutes. Even my mind was frozen and helpless as I laid alone in the bed. Raymond was gone working with youth, Andryusha was finally asleep and I've never felt so alone and so scared in this universe! Yes, I was scared of IT coming back!

Even now, as I write this, tears are coming back and I get that sinking feeling in the stomach again.... That night, though, I didn't even have the tears ... no reaction, other than, is IT back? In October 2005, 2 weeks after my baby was born I started having a cough which turned into the chest pain that would not let me lay down on my left side or breathe freely. A week later I was told I had cancer.... do you see the parallel? The weekend was awful... I honestly told Raymond what was on my mind, he came home at once, refusing to believe but also scared. Another draggy night came on, and once Andryusha fell asleep we weeped away hugging intensely each other. Our little world was at stake ... and we are all shaken again! Is Monday ever coming?

Yes, it is ... at a turtle pace Monday came; we haven't been so anxious to see the results and Raymond wanted to come along but decided since Andryusha was just barely recovering it's was safer for boys to stay home and I would call from MDA. Finally, Liz (the nurse) came for me ... the usual questions came... any symptoms, pains, problems? And I broke down.... YES, YES, YES! I have symptoms and I am scared for life! What are my results?! And she is so sweet and understanding ... "Well, I haven't seen them yet, but let me see if I can get them NOW" in the meantime let's take your blood pressure/weight/temperature .... My blood pressure was elevated (high 90s over 60s - unusual for me since the transplant), and yes, I am dying hot to know my results. She comes out with the print out - "Here you go, it says YOU ARE ALL GOOD!"

I am good? I AM good?! I AM GOOD!! IT'S NOT CANCER! THANK YOU GOD! I hugged her and burst into happy tears ... then I called Raymond and we cried together, this time from infinite happiness! Yes, that's all it takes to be happy -- to know you still have a chance to live the LIFE! The excitement brought back the chest pain but it was now OK ... whatever it is, we can fix it! Then my favorite oncologist came in and we had a serious talk of what it could be. He examined me, asked numerous questions and finally said that it's strange that it came so late in the game but more than likely, I have pericarditis or pluratis as a result of radiation and it's good to get an EKG and see a cardiologist.

So this is the grand finale of ER episode 101: I am alive, 4 lbs lighter and CANCER FREE, I had an EKG and will see a cardiologist on Jule 24. Chest pain is under control, stomach is stable ... just some nagging pain under the right rib and liver aching (my guess is from all the stress). I may sound like a 70-80 year old lady but I am still kicking! :)

Has it been 2 months already?

2008-06-20T18:07:00.003-05:00

Thanks for everyones' e-mails and blog comments wondering where am I or if I am ok... I am here, life goes on and that's pretty much it. Raymond has been so busy with work that I have a bigger than ever share of responsibilities and that leaves no time for Internet and blogging. Besides, I am still having health issues some of which I choose not to share here. To sum up I went to see specialists at MD Anderson to evaluate if I have chemo brain (a side-effect of all the chemo I've had) and if I do (which is the case) what can be done about it... I received some suggestions of how to better organize my life and avoid stress but the bottom line is fatigue which causes stress and affects the brain. They referred me to the fatigue clinic and I am patiently waiting for my mid September appointment. In the meantime, I keep experimenting with different sleeping aids as I dream of quality sleep. Don't get me wrong, I am tired each and every day, and I am so wired that I can't fall asleep easily and when I do it's hard to stay asleep though the night.... my eye lids are closed but feel hollow and 'bright light' is haunting me through the night... you get the glimpse, right? And brightest thoughts/ideas come at night too but by the morning/day time I loose them all only to be left with the sagging feeling that chemo brain is in my way....

Moving back in to real world.... Next week I am going for scans and will have results by the first of July -- please join my prayers for boring results and check back in 10 days or so. In the meantime, I've added some random music I like to entertain you as you check in for updates only to find there are none :)

I feel the time in nearing for this journey to be called a 'happy end' story as September will be my 2 year transplant anniversary. 2 years is the silver lining that will reduce my relapse chances from 35% to 5% and it will bring huge mental relief. So if all stays clean and good then my September update will be most likely the closing chapter of this blog. Thank you for following this long yet very profound journey.

................

2008-04-09T17:56:00.006-05:00

I don't even have a title for this post cause I am just blank.

To sum up the last month is to say it hasn't been easy. Andryusha got sick right after the last post and alas I followed him. It's been 3 months since the last time we were sick (longest since transplant) and I was once again miserable to the point I had to see my oncologist. The old meds didn't work so he gave me a new prescription which finally got me over he hump. I also had troubles deciding on what drugs are better in my situation (I thought I had a choice) then to my surprise I found the office of endocrinologist was reluctant to give me infusion for the bone density; I felt they were pushing HRT (hormone replacement therapy) on me, which I wasn't ready for so I ended up contacting Patient Advocates as I could not play any back and forth games anymore. Finally, last Monday I had the infusion and has been in mild to moderate pain since then. Last Tuesday I had a fever but thanks to Raymond who quickly remembered to give me pain and fever reducers and it went away quickly. Now I am just dealing with the bone pain which brings bad memories of chemo; however, I am sort of happy to know the medicine is doing its work so I am just slowly recovering from it all. I've been very fatigued to say the least and since infusion I could not really sleep even with the sleeping pills. I just feel wired and restless while being really tired and wanting to sleep.

On the emotional side, I've been having a roller coaster as well... for one, I didn't have good fasting this year being sick and preoccupied with decisions. In my pre-cancer life I loved fasting as it offered me more time to meditate, pray and work on my relationship with God; I thought I could still have the spiritual aspect without the physical fasting but they truly go hand in hand. Then Naw-Ruz, the Baha'i New Year, came on March 21 and it brought me happiness as we spent 2 days with our dearest friend of 15 years whom we haven't seen for ages. We've known her before Raymond and I got married -- and that was a long time ago! In fact, time is an interesting phenomena - I feel it wasn't too long ago that I graduated from high school but at a closer look it's been 14 years ago; and I suspect it will not be long before I see Andryusha do the same. He is now 2.5 years old and fun as ever. Any pain I may have subsides when he calls me 'mamochka' and some nights it's him who tells me to sleep, sings and caresses my hair (what we usually do to put him to sleep). He casually says he's going to miss me as he climbs the playground and blows kisses going down the slide. And during these moments I realize that I can take all pain in the world just to be around for him. It's all well worth it in the end.

Oh, another interesting time nugget: I've been keeping this blog for 2 years now! What originally started as short updates turned into informative cancer treatment diary and surviving struggles filled with emotions of life. I hope to be of inspiration to those battling and those healthy. About a year ago I added a counter and even though I am not a very prolific poster (about once a month now) this blog has been visited to date almost 10,000 times. Thank you!

Wow... this is getting too long ... kudos to those of you who got through my entire post :) I am on to filing taxes and carrying on with life!
Texas Bluebonnets New Year '08
One of those moments ....

A little bit of everything....

2008-03-07T00:08:00.004-06:00

Good, so-so and just bad...

I feel like letting out the bad news first... I am once again heart broken with the sudden loss of a dear Baha’i friend Arturo who was diagnosed with lung cancer about a year ago. He recently completed his chemo therapy and being the optimistic and flamboyant person that he was he decided to get back to work and take on some traveling assignments and off he went to Nirobi, Kenya. Before too long he got some kind of virus/inflammation in his lugs and was hospitalized then moved to ICU there. It looked like he was going to pull it off since he got better and was able to return back to US but then it once again went for the worse.... they were on their way to a doctor in Mexico when he needed emergency care once again and they lost him yesterday on the way to the hospital....Along with his wife Virginia they hosted one of our baby showers; we also spent incredible time with him in Paris in his Champs-Elysées apartment; and remaining 6+ years we've known him was simply a blast jamming music together. He was a great musician, artist (painter) and loved to travel. Arturo was always happy, loved his family and cherished friends. This is how I will always remember him ... I am pretty sure he is already jamming in the next world, smiling upon us.

The so-so news is my visit with the dentist.... I found out they plan to use IV drips once again for my bone density treatment.... I dread it - my veins still hurt just doing blood work and I get nauseous with a thought of any sort of infusion. Only good thing is my teeth are in good shape and thus I have the minimal risk of getting the 'dead jaw' (necrosis of the jaw bone). Still, I am not looking forward to the side effects which may include nausea, diarrhea, digestive issues, bone pain (like I need more) and so on.

Finally, on to good news ... tomorrow is International Women's Day and I plan to celebrate! (…in hopes of forgetting the upcoming meeting with endocrinologist) I wish all the ladies and girls reading this to always be healthy, love and be loved -- a simple recipe for being beautiful and happy!

My state of the union

2008-02-21T00:04:00.008-06:00

Last two months have been difficult … emotionally and physically…. hence, no posts. I want to be the source of encouragement and inspiration to anyone who reads my blog and if I feel down it’s hard to do that. The year started off rough … after Shannon’s passing it didn’t get any easier, only worse as I received the saddest news of Dave and then Sarah; both of them did the transplant along with me (Dave a few weeks after me and Sarah a month after). We connected on invisible level and cheered each other along the way. The unbearable news just hit me hard and I almost went into depression. I felt so vulnerable I had to hide away from my own morbid thoughts and questions of injustice … Andryusha came to the rescue once again and I gladly poured all my love and attention at him especially since Raymond had so much work these past few months. Sarah and Dave will always have a place in my heart for they were incredibly optimistic about life, they loved life and shared it with others around; I was truly blessed to have come in touch with them.

On a bigger scale I am searching for balance in embracing the new life with all adjustments while remembering my long battle and honoring those still going through it. In all honestly, going through treatments is only half the battle; surviving and living happily to the fullest day to day IS winning the battle. Speaking of surviving, I guess I should share the LATEST SCAN RESULTS – ALL CLEAN AGAIN! Yes, still cancer free! But… always seems to be a ‘but…’ my bone density test (DEXA scan) revealed that I’ve become osteopenic since the transplant and now I urgently have to see endocrinologist who can help prevent osteoporosis and possibly reverse the osteopenia. I’ve had the bone pains throughout the year and it has been worse this winder (especially in the knees) but I felt it was such a minor side effect after cancer that it was not worth complaining about. I guess it is now… my doctor also mentioned the possibility of going on hormone replacement therapy since being menopausal also affects the bones. I am interested in finding natural ways to reverse osteopenia and achieve hormonal balance since most of the conventional medications have serious side effects like secondary breast cancer, blood clots, ‘dead jaw’ syndrome,e tc. Please share your suggestions (good and bad). I will update you all once I see endocrinologist at MD Anderson. Until then, let’s focus on all the good we have (friends, family, good weather, and so much more) and celebrate cancer free life! Here is our latest picture from my sister in law’s wedding – it was beautiful and proves that life goes on and it's never too late to enjoy it!

Happy New Year!

2008-01-01T17:42:00.000-06:00

Hope you had a Merry Christmas and that you are looking up to 2008!

I know I am excited about this New Year -- things have been getting better and better for me throughout 2007 and I intend to keep it that way :)

Sorry for being absent for so long... we've been back from Belize for almost a month now and it's been just difficult to write about the trip though it's been a good one. It's very tough to see your loved ones deteriorate and I've been thinking how hard it's been on Raymond to see me struggle with cancer and now see his mom going though memory loss. Sometimes, the focus on the sick person is so strong that others impacted remain in the shadow -- so I am trying to give Raymond attention and love he so much deserves. And thanks to everyone who sent suggestions/info on preventative care for Alzheimer's -- we took lots of vitamins, puzzles and games for our mom and hope this will slow down the memory loss process. Visiting both families has been very important yet very tiring for us -- I think we are done traveling for a while. Thus, so we really enjoyed relaxing and resting at home for both Christmas and New Year.

For Andryusha being in Belize was good too - he mingled with the kids there - he effortlessly picked up some Spanish and made great friends with his cousins. For me, this was the time to slow down and meditate about life... I think I have come to terms with cancer -- if we must die out of something, I prefer to die from cancer than say, Alzheimer's or dementia. OK, I don't want to sound depressed but I've been having ups and downs... even more down when my fellow warriors are down... like Shannon and Jesse ... and their SIX children! I can't accept the unfair fact but keep on praying for the peace and comfort for the entire family. Please say a prayer for them too!

My scans are coming up in the next month and while I am convinced that I am still clean I still appreciate your prayers -- they truly help me with anxiety before the scans. I certainly can't wait to switch to scans/checkup every six months - hopefully, this will be the case after this set of scans.

Oh, and about the pictures -- from both Belize and Moldova -- I am sad to say we lost them! Our big nice SLR camera broke down right before the trip to Moldova so we've used the cheap point and shoot camera and after I transferred pics to CD and erased the pics from the memory card I found out that the CDs got corrupted... I am so heart broken :( but will try to post some general Belize pics later - it's beautiful!

random choppy thoughts

2007-11-07T17:54:00.000-06:00

So I am sick again .. this time entire family is down (even Raymond). Andryusha is already recovering nicely and I am just lagging behind.
I know I can't complain but honestly, sometimes I wonder when will I feel normal again ... I so easily get sick it scares me.

Some other mixed news - we will be going to Belize to see Raymond's mom who is becoming rather forgetful. We are very concerned if she is developing an early Alzheimer's.... but I've been so tired lately I haven't had much chance to read up on the symptoms and potential treatment. If someone knows about it more (and what to do to slow down the process) please e-mail. I am excited to visit Belize again, it is such a beautiful place and the people are so wonderful.

And since this is turning into a rather sad post... I will add the another daunting piece of info... one of our fellow Hodge members lost her fight a few days ago. Anne-Marie was among the first people I got to meet on the Hodgkins's forum board and her insightful perspective was always encouraging and supportive. I will also remember her for the special words she wrote for Andryusha's b-day (he will read it when he turns 15). Gush, I just feel down even though I know we all have to go through this sooner or later. Besides, two of one good friends were recently diagnosed with cancer (one lung and one breast cancer) -- both came as a shocker to us. In the end, I guess we have to celebrate life in all it's forms - when it starts and when it goes. And speaking of celebrations ... Raymond along with some of our close friends in Austin threw a surprise 'Life Celebration' party for me a week ago. I wasn't prepared for any speech or gifts and got really emotional but it was really great to see all the friends who have supported us during the hard days. It was nice to be able to thank them all officially -- we had a great time.

Oh, and more exciting news ... I became a "First connection" volunteer for the Lymphoma and Leukemia Society. I always wanted to help and give back in some way and this seams to be the perfect opportunity for me -- I can talk to newly diagnosed patients over the phone and provide the so much needed support and encouragement.

Big 30 ...wow, I made it this far :)

2007-10-17T13:24:00.000-05:00

Well, today I turn the big 30 -- no sad feelings whatsoever.... there is a lot to look back at... hardships we've endured, milestones we've accomplished and all good things Life has taught us. I remember how depressed I felt when I turned 25 -- felt sooo old, like as if I knew it all and there was nothing new to experience or be excited about. Well, since then my life has definitely changed to be a roller coaster of ups and downs.... after having a great pregnancy and a nice water birth experience I was hit way low with the cancer news... actually, exactly 2 years ago, on my 28th b-day when a local ENT doc told me he was highly confident that I had cancer.... my husband thought he was plain rude but he turned out to be right. Now, after almost 2 years of hell I feel that I am starting a new life and if there is a b-day wish to make it is that I may have another 30 years to live so I can be around for my son and my husband whenever they may need me. And if I could stay healthy most of the time that would be great too :) .... I've been having some minor issues/pains for the last week or so and I just hope it's not any new side-effects that will make me go back to doctors again and again....don't want any new tests or pills. And I surely don't feel bad about being 30 ...my mid-life crisis already occurred and I know what to do with the rest of time I have, whatever that may be.

Here are a few random pics .... I will be posting more later. With Dr. Hagemeister at Lymphoma & Leukemia Society Talk

Andryusha's B-day - 2 years old!!!

Evening in downtown Kishinev, Moldova

Petting a dolphin after the show, Crimea

I am back and CANCER IS GONE!!!

2007-10-02T16:12:00.000-05:00

Well, friends, I am finally writing after being gone for 3 months!
There is so much to share, I don't even know where to start....

First, my latest results: my CT and PET are clean as a whistle and even the stubborn mass has shrank to a little over 1 cm - almost a normal node size!!! So, looks like cancer is gone, gone, gone - for good! My blood work is making incremental progress but still not quiet back to normal. This news was such a relief cause for a while I had some sort of anxiety due to some of the symptoms I had this summer. I was hoping to gain weight while being home - instead, I lost some more and got down to a scary 100 lbs (45kg). Biggest reason is that during our trip we were big time sick twice - in fact, we are sick again at the moment but not as bad as before. I saw my oncologist yesterday and he said that patients often get sick after the transplant; but come on, since I finished treatments 6 months ago I've been sick 4 times - a bit too much for me! So I definitely need to be careful this flu season - one flu is enough already!

Next news is that tomorrow Andryusha will turn the big TWO! He is no longer a baby but a little young man full of curiosity, charisma and character! He is learning every minute - words come by easily and now that we are back in US he is building his English vocabulary in addition to Russian. Here is just a small example of how smart this new generation of kids is: We were at the pond and Andryusha saw a turtle. So he shouted to a cute little girl near by: "Cherepashka!" Well, she looked puzzled and didn't respond - he repeated 'cherepashka' a few times more, then looked at Papa, looked back at the girl and murmured back to her: "Turtle!" He only heard the English version once or twice from Raymond, but what was amazing is that he himself figured out the need for translation and used it appropriately! So each day is exciting and THANK GOD I AM ALIVE to witness my son's growth!

Finally, a few words about our trip: it would have been a great trip if we weren't so sick twice and if it wouldn't have been the hottest summer ever. We had some sort of a viral infection that resulted in every possible complication at once: nasal congestion, sore throat, temperature, diarrhea and even nausea and vomiting. The first time we were sick Andryusha and I couldn't eat for about 4-5 days. I also noticed he generally recovers faster then I do -- I guess it's because his immune system is a year older than mine! And since my throat wouldn't get better we ended up going to Crimea and took some treatments at a military sanatorium -- thank God they were able to clear up my throat and lugs as we were worried if I was having another pneumonia. And it felt as if the Houston summer (without humidity) came along with us; but guess what - there aren't ACs there as they never needed them before. On the good side, I finally got the tooth crown I needed so badly. Other than that, it was great to see the family and friends, most of whom have kids so I experienced a new dimension of growing up - when you realize those effortless and carefree days of youthfulness are forever gone! We could no longer hang out till the last trolley -- everyone had to be back home by 9 pm at the latest to feed, bathe and put our little ones to sleep. Andryusha would easily make acquaintances with the kids at the playgrounds where we spent a few hours every day. He learned to walk a lot, go up and down the stairs and watch where he is walking (too many pits and ditches in the pavements). And he started speaking Russian pretty well so all in all this was a tiring, strenuous yet fairly productive trip. And knowing now how hard it is to travel with a child I know we will not be traveling back for another 2-3 years so it was important we saw my family.

I will try and post some pics from the trip within the next week and plan to regularly update the blog. Since my next scans and follow up are in 4 months I will mostly share personal stuff -- of course through the cancer prism of LIFE AFTER CANCER!! YEAH!

Latest and GREATEST results!

2007-05-30T10:33:00.000-05:00

Once again, I've gone for my PET/CT/bloodwork/ex-ray tests and as of now I am all CLEAN!! What more could I ask for? I am HAPPY!

There are still some residual opacities in my lungs but since they aren't growing or moving my doctors feel confident I am ok. And while my bloodwork is still below the normal levels it's made some incremental improvement and since a slow recovery is expected after the transplant I am happy with any progress. My major concerns are still the fatigue and some dizziness when I bend down (due to low blood pressure in the 80s/50s range). Thus, celebration this time is not as excubirant as before; in fact, I can no longer be childishly happy because I know that sometimes victory is just a matter of luck -- I am sad when I think of Alese and even more sad when I think of my two fellow Hodgkins board members who had their transplant at about the same time as I did but who unfortunately relapsed. Dave has 2 kids (4 and 8) and Sarah has Lorainne (her partner) and 7-8 pets. I wish they'll find some way to cure them or at least buy them another 10-15 years of life. Both Sarah and Dave have great positive spirits, love life and so deserve to be cured.

So while I proudly wear my new t-shirt :) (see below) I do acknowledge the bittersweat taste of my small victories of every 3 months....I am so glad to be reliefed for this long and hope that my fatigue will improve and that I can start the "new normal" life working and raising a family in the next 6-8 months.

Enjoy the upcoming summer! Now that I finally have the doctor's permission to travel I will be leaving for Moldova and so my posts will be not as frequent but I'll try to post once a month. Hugs to everyone!

How I hate this disease....

2007-05-07T23:03:00.000-05:00

I am shocked and heart-broken over Alese's passing ...
It looked like she would pull through once again but no ... I know pneumonia can be life threatening and that her body was all worn out after all the treatments (for me the pneumonia treatment was just as hard as the chemo) yet it's still too hard for me to comprehend why this happened to her. Her mom so eloquently summed it up: "...Heal our hearts and allow us to move forward with the same courage, grace and dignity that Alese lived her life." I can only hope that my remaining journey will be on the path of service to others filled with courage, grace and dignity.

The only other positive news is that our friend Aman successfully completed the marathon this weekend; Raymond and I are so amazed - he did a total of 56.5 km and together they've raised $5,256!!! Now, their goal is $10,000 and Elizabeth will be doing her marathon in June so there is still time to support them. Here is their web page where you can contribute securely online - THANK YOU!!! http://www.active.com/donate/tntgsf/EandA

what happened...

2007-04-27T19:37:00.000-05:00

Several of you called to make sure we are ok... thank you!
I usually update once a week and it's been a few weeks so sorry for leaving you lost... this time, it wasn't me but all about Andryusha.
A few days after visiting our pediatrician, Andryusha started to develop a weird rash between his legs... it progressed further and spread to the fingers and toes and he then developed a low grade fever.... we were baffled as this has never happened before. Yes, our baby has a very sensitive skin and gets diaper rashes easily but these were little blisters and he looked sick...
At the same time, Raymond had to leave for work to Dallas for 4 days (first time ever) and I was all by myself taking care of the baby and it's been rough on me. The pediatrician said that only time would tell if this was an allergy or chickenpox... of course, we were scared. I called home to see if I was at risk; luckily, I had chickenpox when I was a child ... after a few more days and lots of Benadryl it started to fade away -- it appears that we've experienced some sort of an allergic reaction. Then this week just as we were getting better he got a major diarrhea and a severe diaper rash with lots of pain. Oh, how blessed we were during my struggles with cancer; I don't know that we could have handled two sick people in the household. Only now, I look and I say "Thank you, God!" for keeping our baby healthy all this time -- I prefer to be sick than see him suffer! Anyway, we are almost back to normal now -- that's our scoop....

Oh, one more important update: a very amazing surprise ... our dear friends in Cali are participating in a triathlon benefiting Leukemia and Lymphoma society, and I am one of the honorees! The race is on May 5 - May 6, 2007. The Wildflower Triathlons is the second-largest triathlon in the world! They are doing 1.2-mile swim, 56-mile bike and 13.1-mile run and their goal is $10,000 -- I was amazed to find out that they are at $4,200! (for some reason the web only shows the web donations and not the grand total). At one point I wanted to get involved and train for some sort of marathon and pretty quickly realized I am just not ready yet....so on my behalf please support them if you can!!! THANK YOU!!!

Priceless memories

2007-04-04T10:32:00.000-05:00

Yesterday, Andryusha turned 1 year and a half! How will it be memorable?
Well, I will surely remember because 3 day ago he broke my tooth - while we playing he accidentally hit me in the jaw. So I went to the dentist and now I need a crown - as MasterCard commercial would say "Broken tooth - $1,000, playing fun memories - priceless". So enjoy some recent pictures of our priceless joy!

Another interesting memory comes to mind: 2 years ago on April 1 we arrived in India for work - I was 3 months pregnant and we didn't know how it would go there; the trip turned out to be a very interesting adventure and in many ways life touching -- it was there that I first noticed a lump on my neck -- I was about 5 months pregnant and just finished teaching a class and was discussing something with a co-worker when I felt it while checking a necklace on my neck. I think next week I'll try and post some of the India pictures - stay tuned :)

Otherwise, we are doing fine - at the moment we are expanding the back yard deck so Andryusha can play safely (we finally put in a fence too). And this minor project along with keeping up with Andryusha keeps us more than busy -- without exaggeration I am dead tired every single day. For some reason, I've been also having liver pain again (on and off) but I am still super happy! What's in our future?

Off I go...

Gde luna? - Where is the moon?

Like father like son :)

200+ days and still clean!

2007-03-28T17:35:00.000-05:00

It's all good and I am soooo happy! My right lung is all clean and the left one has a few tiny "clouds" left -- the doctor is not concerned and so I am not worried either! My mass is about the same size as before so I guess I'll just have a war medal in my chest forever :) And, I was taken off 2 of the pills, which have been keeping my blood counts low but again, my doctor is not worried because the counts have been steady and he thinks in about 2-4 weeks they will improve and so will my energy and appetite. He was concerned about my weight (I am now at 107 lbs) and honestly, I have no clue why I am this way as I am eating more and more so I am personally not too preoccupied -- you know, weight gain has never been an issue in this country! Hugs and kisses to everyone!!! Thank you for your prayers!!!

Oh, and thank you all for the prayers for Alese - she is out of ICU and back home!!!

Happy New Year!

2007-03-21T16:04:00.000-05:00

Today is spring equinox - official new life beginning for our Mother Nature and an official Holiday for the Bahai's who call New Year "Naw-Ruz". My belly is still stuffed with the awesome food in abundance last night -- can we celebrate more often?! And this has been a new life beginning for me as well... I've had a lot of prayer requests during the fast and to my surprise 3 big ones already came true in the last few days! So looks like this will be a very promising and exciting year. At the moment I am waiting to be called for my CAT scan at MD Anderson and I am pretty calm - I know it will all be good, if anything, I am curious to see how much more my residual mass shrank - I'd be super happy if it's around 1 cm or less. And I am confident I am still CANCER-FREE. I even believe that the residual pneumonia is gone :) It's good to believe but facts are nice as well (for extra support) so I'll know the results next Tuesday -- stay tuned!

And thank you for all the prayers for Alese -- I know my prayer for her has been answered and though she is still in ICU I am confident she will make it. I also wish they'd choose MD Anderson -- the quality of care would be better in my humble opinion. She has a rough road ahead of her - second SCT (transplant) -- I wish her all the mighty strength!

Calling for your help for a Miracle to happen!

2007-03-18T15:04:00.000-05:00

I am very heart broken about Alese's news yet I am very determined to help in any way I can. I firmly believe in the power of prayer and positive thoughts and I ask every one who reads this blog to take a minute out of your busy day and send the most powerful positive vibrations of healing and recovery to Alese. I've added a counter to the site 3 months ago and looks like our blog gets about 1,000 visits a month so imagine the power of at least 250 people praying and thinking of Alese. Her dad called me when our own lives where in crumbles due to cancer, when we were lost, confused and disheartened. He was extremely supportive and exhibited lots of good will that energized me and I know Alese is the same way -- she does not give up even in face of death yet at this time she needs any extra healing support you can give.And I know I should be detached from all that may happen but I can't -- I cried reading about her sufferings and could not help but blame that doctor who made such a stupid mistake installing a catheter -- it's not that of a difficult procedure -- I've had it done 3 times and 2 went very smooth so I am just devastated for her. I think it's even more intense for me because I've been having sleep issues again for the last week or so. We've had other tests and difficulties that aren't cancer related but I feel I have no right to complain so just keep us along in your hearts and thoughts as you pray for Alese. THANK YOU SO MUCH!!!

Happy Women's Day!

2007-03-08T14:26:00.000-06:00

I wish all the women and girls reading this blog to stay forever young and forever beautiful, be full of vibrant energy with good humor and positive attitude about life! March 8 is big in Russia -- it's actually a day off so I hope that everyone can treat themselves to something nice after a long day at work or school :)

Cancer-wise, I will be attending a retreat for women touched by cancer tomorrow at MD Anderson -- I am looking forward to doing something pleasant and relaxing at MDA -- I have mixed emotions about the place since most of the time being there is no fun. And my CAT scan is coming up in two weeks but for the time being I am just simply not thinking about it.

Spring is in the air!

2007-03-01T22:47:00.000-06:00

It's March and spring is here! It's one week since I am done with the radiation -- my throat is fine now and so is my skin though I am very sensitive to the sun. My skin was burning yesterday since we spent a few hours outside. I think it will be tough for me to remember to apply sunscreen all the time -- so please remind me whenever you see me!

It strikes me that every culture and/or religion likes to celebrate spring in it's own way ... for example, in my home country Moldova, there is this wonderful tradition of 'Martsishor' where for the first few weeks of spring everyone wears a small ornament of white and red flowers which are a symbols of a long time legend about life and love that are renewed each spring. At the end of 2 weeks those in love exchange the martsishors, others hang them on the trees for good luck.... I came across one three years ago when we were home -- it's in my hand in the picture below.

And in my Faith, I am a Baha'i, there's 4 days of celebration where everyone exchanges gifts and loads up on good food, cause fasting comes next (in fact, it starts tomorrow and will go on for 19 days). Fasting is the time of spiritual and physical purification for the soul and body, a time to meditate upon the year that's about to end while setting new goals for the year to come. Of course, while I can't do the physical part of the fast this year I've got a lot to pray about -- the gratitude of another year to live and see my baby grow, my husband who stood by my side in the good, the bad and the most ugly days of my life, my co-workers who've supported me and my family throughout the treatment, my friends that I truly know are 'friends indeed' and all the random new people that have entered our life for a not so random purpose of help in need.

Likewise, in the Russian Orthodox tradition, there is a period of "Maslenitsa" right before the Great Lent where for a week everyone enjoys bliny (a cross between crepes and pancakes), with the last day of maslenitsa being the Forgiveness day, when we say to each other "God forgives so I forgive". In fact, we had a mini celebration of maslenitsa and my end of treatment a week ago with a few girlfriends of mine .... see another picture below and notice the huge contrast of my hair then and now!

Martsishor on the cherry blosom tree

Celebrating Russian Maslenitsa

"For whom the bell tolls"?

2007-02-21T21:58:00.000-06:00

For me!!!!!

Yes, everything has to come to an end ... the brutal war, the chemo, SCT, radiation ... every saga has it's end and mine was yesterday. I rang the hell out of the bell in front of the radiation staff and a few other patients and my voice sounded like a first grader's as I was reading the 'End of treatment' poem. I actually haven't heard anyone else ring the bell during my entire 3+ weeks of radiation treatment so it was very emotional and exciting for me.
As Hemingway puts it "The Sun also rises" and so my Sun is rising as well! We are so excited to start a new life -- I am going to be shining for my boys and all the friends around, and even strangers around cause I AM SO DONE WITH CANCER!!! Yes, I have a few nagging side effects like abdominal pain (liver?), chest pain (heart?), fatigue and dizziness but how would you know it's sunny if it wouldn't be for a few clouds? So yeah, despite my physical limitations at the moment, my soul is soaring high and I could not be happier. I even get a 4 week break till the next CAT scan -- a great opportunity to rest, recover and enjoy the sunshine!

Here are a few pics from my radiation (sorry if it's too much for you -- viewer's discretion advised) and if you really want to feel how I feel check out this 'Team in training".

Peace and Love to all!
My radiation team
My last glow!
The after effect :)
The MASS (can you believe it was even bigger?)

Our Valentine's Day 2 years ago - 2005

2007-02-14T15:06:00.000-06:00

On top of Sacre d'Cour
The long and winding road Montparnasse
Dali's Museum

All we need is Love!!

2007-02-14T14:16:00.000-06:00

"All together now:
All we need is love...."

"Love is all we need!" Happy Valentine's Day!
Whether you are single or married I wish you peace and comfort, love and joy of the day's simple pleasures ...some sunshine, warm cup of tea or coffee, smiles with friends and loved ones.

I must confess, I am having a new affair!
Yes, it's weird...I always thought my heart was too small to fit another love besides Raymond... well, what do I know about love and life at 29? I guess, not much... cause I am in love like never before. I've always loved Raymond's eyes for the kindness and warmth that they emitted; and now I am melting when I get the same sweet kind look with a naughty twist of an innocent child - my Andryusha! Oh, how much we love this little cupid!
Back in 2005, Raymond and I fled to Paris for the Valentine's to celebrate our newly found surprise - I was almost 2 months pregnant; and gush, we never thought it would be this way 2 years later....a love triangle that we really love!
Below are a few pics from that trip to Paris.... as for our plans today, well, Raymond was working in Florida last week and arrived home sick just as Andryusha and I got better... and now, we are on a new flu cycle, smudging kisses and flu all over each other :) Oh well, it's not very romantic but it's not as bad as last week - no chills and fevers, or major congestion. And tomorrow, I am going to MDA to see how I am doing ... I'll be done with radiation next week -- compared to chemo, it's been indeed a walk in the park but I am so ready to be done with any kind of treatments. I'll keep you posted.
Tour Eiffel
Luvre
Old Paris
Luvre

"Getting better all the time" :)

2007-02-07T22:05:00.000-06:00

I got loaded on medications, Indian herb tea and Russian balm rubs so now I feel a lot better and I am continuing with the radiation.

So many of you wanted to see new pics ... sorry for the delay ...I finally got around to it. Here are a few of us with my dad who will be leaving back home this Saturday :(

And how do you like my new short hair? I feel like a bunny since every one wants to pet me when they see my hair :)
Dad and us Zharevich!

Always ready - bring it on!!

I am big but love to cuddle with milk :)

Sick!

2007-02-05T17:20:00.000-06:00

I am so sorry to report that I am sick ... it finally got me ... since I've started radiation I felt a little sore throat and swelling and I hoped it would go away since they told me it's a bit too fast for those symptoms to come, yet it just progressed into a full size flu with head congestion and light headiness.... and the machine was down today for some reason so I didn't have any treatment. And so I wonder two things: 1) could radiation have weakened my immune system and thus the cold/flu or is it totally unrelated 2) will they continue treating me while I am sick. I guess I will know tomorrow when I go to MDA.

And since I am dwelling on how fragile life is, I want to share the sad news of a young man Lee who recently passed away fighting Hodgkin's lymphoma in UK .... we all followed his progress for over a year and a half and I was very optimistic for the positive outcome since he just turned 18. A little over a week ago he started to have chest pain and difficulty breathing and next thing he was gone.... and I just keep thinking of him while I am sick. Here is what his brother Kev had to say about Lee ... I just hope I could be this brave and strong when my time comes....
"I wanted to thank you all for your very touching posts. To know there are others of you out there that can appreciate and share our pain is comforting, although I don't wish to make you sad you understand.In making some sense of this totally overwhelming feeling of loss I believe Lee may be one of the lucky ones and it is those of us who remain that suffer.I'm convinced there is something out there beyond this life that is just so fantastic; and that one day we will all experience what we have been missing.Lee was an exceptional young man. His courage to the very end leaves me lost for words. He passed away just a few days after his eighteenth birthday and in true Lee style, without a tear, he told us before he went that he had had everything he could wish for in that time and was excited to be moving on. Lee said he had the looks (which he did in spades), the girls, money, an extraordinary family and a talent for his golfing that bought him a 'fame' in the local golfing communities.Lee did nothing by halves and his Lymphoma was no exception. From the outset the odds were stacked against us. However, this remains a disease that is highly curable and I wish you every success in your battles.Thank you all once again, so much."

I am going to glow starting next week!

2007-01-26T16:58:00.000-06:00

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!

CT still shows some residual pneumonia...

2007-01-19T13:57:00.000-06:00

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!"

Results ... or lack of them

2007-01-12T16:58:00.000-06:00

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!

What is wrong with us?

2007-01-04T23:38:00.000-06:00

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.

De-ported!

2006-12-28T22:48:00.000-06:00

Yes, I am finally done with the drips for pneumonia treatment and today my PICC line was removed at MD Anderson. I saved the catheter as my little trophy (this was a long one - 44 cm, about 1.5 ft and in case you are wondering what this catheter is like check out the pics from a fellow warrior Cliff who was brave enough to document his allo transplant). Gosh! These little milestones make me feel so good, and I can't wait to take a real shower and even a bath :)

Even though we will not know the results until the scans are complete in two week I feel very positive that we've knocked the pneumonia off. After all, we've done 2 extra weeks - it should be gone, right?! I feel like I really deserve a break before I move on to radiation - I was just too tired from the constant medications; and so tomorrow my dad and I will come by my office so he can see what my life was like before cancer and meet some of my co-workers :) It's kind of funny, he just arrived but he is already invited for New Year party while we will most likely stay home and take it easy. So Happy New Year everyone - it sounds like a very promising one!

100 days and still Cancer-Free!

2006-12-22T23:19:00.000-06:00

Isn’t that the fabulous news for the 100 day survivor ready to celebrate the holidays?!
It does not matter that I’ve been having liver and stomach issues, diarrhea and body cramps topped of with extreme fatigue because it’s a small price to pay for being cancer-free. I still remember the silent horror thoughts of not being able to get into remission and not making it for my family and in retrospect my current physical issues are nothing compared to the mental scare just 6 month ago.

I’ve been so drained with the scans and other tests that I didn’t even get to share another sweet piece of news: my dad got a multi-entry visa last week and safely arrived this Wednesday. It’s amazing how dreams come true once you are detached from them. 7 years ago I really wanted my parents to come over and see how I live and how we’ve come along; now both of them came over without me begging them about it :)

And so I wish you all a very Merry Christmas and a very happy New Year! May all your wishes and dreams come true (just be detached), and may you be blessed with health and love, good friends and family in abundance! The rest – prosperity, peace and happiness will naturally come along :)

Moving along

2006-12-08T12:50:00.000-06:00

So the results are in … pneumonia is going away and my lungs improved about 50%. My onc feels good about it – he says it takes about 6 weeks for CMV to go away and I did about 3 weeks now so I am on track. It’s good I don’t have fevers or other symptoms though my chest hurts a bit and my body aches a lot while my digestive system is being worn out a great deal from all the medications; so I still need to go on with the meds but at reduced frequency which is wonderful. We’ve been pretty stoned last few weeks and are looking forward to more rest. My extreme fatigue showed in my counts, which plunged down again so they monitor me closely (full blood work every other day). Other good news, my hair and eyelashes started to grow – it looked really light at first but it’s now starting to show some color. I don’t really care what color or shape it will be as long as it’s hair! (though some curls would be nice :))
And it’s hard to believe but the big 100 day mark is fast approaching. I will be having full body scans in about 10 days and the bone marrow biopsy. This time it will be under full anesthesia as I don’t have any pain tolerance left (I still remember limping for about 5 days as my hips were recovering from all the “drilling” in my bones). So wish me big time luck – I am confident I am still CANCER-FREE, I just pray for no more new surprises/issues. That would be the best gift for the holidays!

Not much news

2006-12-03T13:03:00.000-06:00

Sorry for not posting for a while… I usually try to update once a week but not much new has been happening for the last 10 days; we are pretty tired of antibiotics I am getting for pneumonia as they don’t let us sleep well and I still drive every other day to MDA so all in all it’s taking a toll on us. Even on Thanksgiving day we were at MDA for about 3 hours or so. Tuesday I will be doing scans to see if pneumonia is gone so I will give an update Thursday or so. Apparently my type of pneumonia (CMV) is pretty rare among autologus transplant patients and among allo patients it can be deadly; so we definitely pray to be relieved of this test. Besides, it’s so cold now I have to be extra careful to not catch any cold or inflammation of some sort.

Other than that, we are doing ok – Andryusha amazes us with new things every day, he can mimic words pretty well (does that count for talking?!) and a few days ago he learned to walk backwards and to walk uphill and downhill – he seams to get very happy with every new accomplishment and so are we! Oh, and he loves to walk, I think yesterday he walked at least half a mile all by himself! No wonder he knows how to say in Russian ‘go for a walk’ – ‘gulyat’! Next time, I’ll try to post some fresh pics of Andryusha as a polar teddy bear :)

Happy Thanksgiving!

2006-11-22T15:13:00.000-06:00

At the moment I am still feeling down because the new antibiotics are really hard on me; they have to be administered 3 times a day (6 am, 2 and 10 pm) and they run over 3+ hours so I don't rest enough. And since I got a new PICC line in my arm (a catheter that goes into my chest) I've had clotting issues with it and we spent entire weekend at ER and MD Anderson trying to get it fixed. I was very miserable the last week but I am still THANKFUL to be home with my family and not at the hospital.

Thanksgiving is a truly American tradition and since we don't have any family here it never really hit home for us ... until this year. Over the last year so many of you have treated us like family, helping out in every possible way, giving your unconditional love and support; and so we GIVE OUR THANKS to YOU and wish you health, love and peace for these are the greatest blessings we have in this life and we should truly cherish them. Happy Thanksgiving!

For better or worse...

2006-11-17T17:30:00.000-06:00

Well, you tell me what you think. I spent almost entire week at MDA doing CT scans, bronchoscopy, blood work and seeing doctors (except Wednesday since it was Raymond's b-day) and here are the news: Thank God I do not have cancer in my lungs; unfortunately, I have an asymptomatic migrating CMV pneumonia (cytomegalovirus) - not a good one. Yesterday my transplant onc mentioned that we caught it early, otherwise it could have become deadly. With that news he sent me straight for a 4 hour infusion in my poor little veins till 11 pm and the next morning (today) I got a new PICC line in my arm - I still hurt emotionally and physically. I tried to be so careful - what did I do wrong? What a payback -- I will be getting daily treatments for a month and have to make trips to MDA every other day (the IV antibiotics affect liver and kidneys so they have to monitor my blood work). So that's the story ... I guess I am not in the hospital and that's good. I am thankful it's not as bad as it could have been -- so Happy Thanksgiving, everyone!

Best news of the day

2006-11-08T22:13:00.000-06:00

Oh my goodness, what a day today - Andryusha is WALKING!!!! Yes, he walks all over the place, firmly yet graciously and can't seam to want to stop -- we are ecstatic and his proud smiles just send us over the top -- we smile and cheer him as we cry from happiness! I can't believe that all these years we were clueless of the joys of parenthood :)

Apart from that ... last Thursday I had a CAT scan and basically there was some improvement in my lugs BUT some new shadows/spots came up; so I've been on this new drug that blurs my vision and messes with my stomach but I am still happy -- as long as it's not reoccurring/new cancer we will somehow get rid of it! Monday I will go for more scans and hopefully by next Thursday (11/16) we will know the results. I think a clean scan would be an original birthday gift for Raymond. He isn't aging at all but somehow is going to turn 37 on November 15 (send him a cheer if you can -- he truly deserve it!)

Light the Night Walk

2006-10-29T20:48:00.000-06:00

We had a wonderful day today -- the Leukemia and Lymphoma Society was doing a fund raiser in the Woodlands today and thanks to a friend we got to know about it and participate in it. I was brave enough to walk without a wig and sevaral folks came up to ask how I was doing and cheered me on. And I was happy to see those who went through a tranplant and were now living cancer-free lives 7 and 10+ years later. It's sooo encouraging -- I am still very emotional yet very very happy! It's amazing how supporting everyone is to fight cancer! Please consider donating if you can. Raymond and I are now thinking how we can raise some funds for research once I get well ... feel free to e-mail us your ideas.

And, please say a little prayer for us on Thursday -- I will be doing scans again to see if my lungs have cleared. Those antibiotics were making me sick again and I am ready to be off of some of them. And finally, here are some pics from Andryusha's 1st B-day -- Enjoy!

Post SCT results

2006-10-19T21:08:00.000-05:00

So today I got my results: the good part is that PET is still negative on the lymph nodes; the so so news is that the mass didn't shrink much more -- it's about 2.7 by 2.8 cm just as before the transplant; and the not so good news is that there is a low-grade uptake in both of my lungs ..."in keeping with an inflammatory process; nonspecific opacity in right one and stable nodule in the left one." PET people think it's infection; CT thinks it is infection but also stated it could be recurrent lymphoma ... my SCT oncologist thinks it's infection and started me on some antibiotics and we sure hope in two weeks when I am due for scans again it will be all clean and clear. He also stated that once I am stabilized he'd like me to go for radiation. So as much as I'd like to be done it looks like my journey is not yet over. Well, at least I know the hardest part is behind. :)

Other than that, on Tuesday I turned 29 ... the only thought that came to mind is 'Gush, I am ALIVE!' And then I recalled that exactly a year ago on my 28 b-day an ENT doc just plainly stated that he thinks I have lymphoma and that he wants to do a full biopsy the next day at 6 am.... and with a 2 week infant in my hands I was stoned to say the least and for the first time ever really scared. Now, a year later, I think I am very grateful that he took charge and was so proactive and did his best to diagnose me right the first time. Isn't this life amazing?

Recovery process...

2006-10-14T19:57:00.000-05:00

is what my life is in a nutshell ... I drive to MD Anderson twice a week for blood work and visits with the APN (chief nurse). My counts were pretty good last week but this week they've been dropping (especially platelets) so they monitor me closely. I am back on some shots and drugs; my nausea is constantly there but vomiting seams to always come as a surprise (twice this week). Yesterday I had a CT scan and now my stomach is all upset again .... Monday I will have a PET scan and I should know the latest and surely gratest results next Thursday; so all in all I am better but nowhere near where I thought I'd be. It also came a bit as a shock to learn the lasting power effect of the transplant: it will take about 6-9 months for my counts to rebound and about a year for the immune system to get back to normal; as for fatigue ... well, that may take as long as 2-3 years; and I am not going to mention about infertility ... we'll just hope and pray for another miracle (my life seams to be one miracle after another so I count on God remaining kind to us).
Apart from that, Andryusha got a flu on Sunday and it took him a few days to get well so when we saw our pediatrician on Wednesday we were happy to hear he is still doing great and keeping up in the top 5% (that's 95th percentile all around - very proportionate :)
And oh yes, we've received an amazing number of birthday wishes (didn't count but looks like well over 50) -- they are all so touching and very special; Thank you so very much! This will be one fat time capsule :)

What a special day Ocotber 3 is

2006-10-03T16:16:00.000-05:00

Today is Andryusha's big 1st B-day -- but we aren't doing anything big. Only special thing is a time capsule -- we are collecting everyone's birthday wishes and congratulations and we are storing them till his 15th B-day. We want him to know what a year this has been so he can really appreciate it once he can understand... if anyone wants to send a birthday wish, please feel free to e-mail me ... I'll send you our address and you can just hand write something on a plain piece of paper (no need for a post cards). This is the best gift you can do for him -- THANK YOU!!!

Other than that, yesterday was a long but still a happy day - my blood work is pretty good and they felt confident that I no longer need the catheter thus I had it taken out yesterday!!! YEAH!!! You know, I kept my port and now I have a catheter - guess what I am doing with it? I am going to have it hanging around my mirror in the car as a reminder of how special life is and so I drive slower :)

I am home and I am done!

2006-09-28T12:28:00.000-05:00

Yes, I made it! I was actually released from hospital on Tuesday, 9/26.
I am too weak to say much about the experience … really, there are no words ... other than a human body can be stretched a whole lot and I’ve witnessed it myself after not eating or drinking anything for 8 days straight. I never thought this was possible but I am alive though 15 pounds lighter, very light headed and weak. I still have nausea and vomiting (mostly because of medications) and my throat hurts but I don’t complain. I am just happy to be done! My son is healthy and beautiful, and husband is so loving and kind – what more could I want?!

Natalie's condition

2006-09-11T13:35:00.000-05:00

Dear friends, thank you for all the calls. Natalie is in good condition so far and she is allowed visitors (2 at a time). Her room at MD Anderson is G1165. They do not allow any flowers or plants on the floor; she is also not allowed any fresh fruits or vegetables or raw nuts but she may have them only if they are thoroughly cooked. Also, if you are sick or suspect you may have any infection or virus it's probably better to not visit at this time. Thank you for your support and willingness to help!

raymond

Wish me luck!

2006-09-07T11:36:00.000-05:00

Well, folks, today I will be checking in to the MD Anderson hospital for the auto transplant. I can do it!! Some of you did it and you are my inspiration and encouragement. In fact, I hope to emerge as a better person in all aspects: more spiritual, more virtuous (patient, kind and loving) and surely healthier than before. I don't know if I will be able to write or update but will do my best if I can.

Thank you all for all the prayers, the positive vibes and the flood of e-mails and post cards. I cherish them all and I would not be here with out all of you. I am still on 7th heaven (felt so good to cry out of happiness) :) . I wish you all the very best!

Yes - REMISSION at last!!!

2006-09-01T00:09:00.000-05:00

I am so happy and so ecstatic – today is the best day of the year thus far!!! We’ve been waiting to hear this for 10 long months!

My PET is NEGATIVE and my oncologists think I am in remission and ready for transplant. I also saw the BMT onc -- they want to proceed with the auto SCT ASAP since I finally achieved remission. So far, looks like I'll start the transplant next Thursday -- I'll get a new combination of drugs (trial study) for the monster chemo: Busulfan & Melphalan (BM) instead of the traditional BEAM. I should be done by the end of the month in time of Andryusha’s first birthday; we thank God for my awesome manager Michelle who offered to host and organize a party for Andryusha – we obviously would not be able to pull this off ourselves.

And another sweet piece of news: my only brother is a PERFECT match! Can you believe it! Not that I need it now (I’ll be using my own cells) but it’s good to know in case the auto SCT fails (which is 30% chance so they always need to have plan B). So all this good news in one day!!! We are going to Austin to celebrate. I hope I can sleep tonight -- I feel like I’ve been having a mini heart stroke all day long. A huge THANK YOU to everyone for all the prayers, positive thoughts, encouragement and all kinds of support – it all worked!!! Love and hugs, and kisses to everyone!!!

P.S.: here are some pics from our 10th aniversary and the bold me.

special day today

2006-08-17T15:11:00.000-05:00

Life is amazing ... today is our 10 year Anniversary and not even in my wildest dreams would I imagine my today's condition. I envisioned how we would have a grand party and dressed in full white we would renew our simple vows: "We will all, verily, abide by the Will of God" under the famous Beatles' song "All you need is LOVE". I was even going to try to fit into my wedding dress... we would dance and celebrate into the night the very special gift of marriage. And yet today, I am just getting strong enough to walk (though my knees hurt tremendously) and our grand affair will culminate as simple romantic dinner for two. So I have a good incentive to make it another 10 years to properly celebrate our 20 year anniversary … I’ll be 38 then and may be I can still fit in my dress – I kept it all these years – I better use it again! The key though is that I want to have enough energy to dance with my beloved men… in ten years Andryusha may be as tall as I and my handsome Raymond may be silver headed!

Apart from the special day, during the chemo weekend I’ve gone to be totally bald … it was very sad ... I’ve cried my share and I am now over it (tell me if you want to see the scary pictures ... I am not sure anyone would want to, except for my neighbor who loves me being bald). Anyway, somehow, I see being bald as a symbol of cancer being gone. I really feel confident that this time there is not one cancer cell alive. I am almost dead so cancer better be dead... really, I am paying such a high price – my body is completely worn out, I don’t think I can take any more chemos so this better be it. I have to save my energy for the Moster Chemo (BEAM) that’s part of the transplant. I am ready to fight it – I need to be done with the transplant by October 3 – Andryusha’s 1st birthday. Gosh, it’s hard to believe I’ve been in such deep mess for almost a year!

So here is to many more cancer-free anniversaries and birthdays!

update + please help in any way you can

2006-08-12T23:32:00.000-05:00

I just got some blood transfusion and feel pretty perky and awake (I was down and weak since yesterday and after vomiting unexpectedly I ended up sleeping most of the day - I am doing ok now).

So here is latest update: Last Monday I ended up collecting some more cells (I guess the doctors felt my fear that it was not enough) and now I have 4.9 mln cells frozen and waiting for me whenever I am ready (a little short of the target of 5 mln but oh well...). They will test them to see if they have any bacteria or virus since I was so sick during collection and if there is infection then I'll get some strong antibiotics at the time of stem cell infusion. So I am stuck with my cells and I'll "reap the harvest I've sown" (Pink Floyd) :)

Apart from that, I saw my oncologist (Dr. Hagemeister) - he is indeed a genius, I am so fascinated with his talks and wish I could attend his lectures some day. He ordered full restaging scans after this chemo and we should know the results of the 2 IGeVs in about 3 weeks. He also touched my heart by saying Raymond 'is a good man for me' - I could not get a better compliment!

And last, but not least I'd like to ask for help for a girl in NY - she needs a donor from her ethnic background - Ashkenazi Jews ( details are here: http://www.alesecoco.org/lindsey.html ). Even if you can spread the link around that would be fantastic! THANK YOU!!!

pics

2006-08-05T22:18:00.000-05:00

at least enjoy 2 news pics of Andryusha and aged Raymond and ugly new me and keep us in your prayers and thoughts.

I’ve been in HELL …

2006-08-05T17:48:00.000-05:00

…. I am glad to be coming out of it. Remember I told you IGeV was the best chemo I’ve had … and I wondered why did they give me ESHAP first when it was so much harder that IGeV. Well, I know now – the hard way. They warned me the biggest side effect is low low counts and that I’d need transfusions to avoid bleeding and major infections. Well, I got it last Friday … then Saturday I felt some scratchy throat and weakness; then Sunday I knew I was coming down with flu. My Monday counts also went up and they said I am ready to be pherised (collect stem cells) so Tuesday I came back even though I still felt sick and I had a temperature. By the end of the day I was a major disaster with a fever and non stop runny nose and congestion. Oh, yes – another juicy nugget some might enjoy – I’ve been giving Neupogen shots to myself twice a day and the amount of lower body pain I’ve had can amount to a birth of another baby. So with the Neupogen shots and prior chemos I could not get anything over the counter and Raymond left my doc a message on Wednesday pleading for help. The protocol is to go to Emergency if I was over 101.0 but I was on the border below. Anyway, I got some antibiotics on Thursday and with continued rubs I am now much better. The bad news is I don’t know if I managed to collect enough of cells. I need 5 million so I really thought I would rock this in 2-3 days, yet I kept declining every day. And as of yesterday I only had 4 million. They gave me FOUR shots yesterday in hopes I’d do better today. But honestly, I don’t know. I did only 0.5 mln yesterday and I don’t know if I came up today … I have temperature, low blood pressure, high pulse and headache… I fear for the quality of the cells -- I don’t want my sick cells back any more! So that’s that … I don’t know what they will want to do. I’ll see the SCT guy on Tuesday and will update you then (and somewhere next week I am supposed to get another IGeV even though the mass didn’t shrink … I am so afraid of what will happen after it … will I die of chemo? I’d rather die of chemo than cancer …

Slowing down … again

2006-07-29T10:21:00.000-05:00

Well, things can’t be going good all the time, especially in our scenario, right?
That’s what I tell myself to keep it cool and collected. I saw my transplant oncologist on Tuesday and the donor transplant idea came up again and the conversation left me worried. I thought we had a plan where I am getting a transplant in a few weeks and it turns out that it’s all subject to change. Basically, next week I am going for scans and as long as the mass is shrinking (and I am sure it will move at least a mm down) I will be getting one more round of IGeV (so 4 more days in the hospital!). How naïve of me to think I was done with chemos! This also means that the transplant itself is at least a month away from now. My BMT oncologist seriously believes I am a good candidate for donor transplant – he says patients who can’t achieve remission with chemos or take really long to get there (like myself) are really ought to go for allo. Some new study results suggest that a jump straight to allo may be better for the long term cure that dragging though each possible chemo and transplant first. Of course, results are better if patient has been in remission when going for the transplant. So I was somewhat disturbed by this new information. Then I was fixed on wanting to know how well I did this last round – turns out my insurance only pays for a PET scan once a month and I just had one 2 weeks ago. Then I talked to my lymphoma oncologist and he brought peace back to me. I have to let go any kind of forecasting and planning. I just need to think about now and today. Without saying it out loud I felt his determination to get me in remission one way or another and go for auto transplant (my own one). He says he is aware of the study but didn’t want to comment much about it and how I fit into it. He just said: “Let’s see how you do next week and we’ll go from there.” Sometimes, it feels like being an analyst at my work made me plan and analyze, and read into things too much. It’s hard to just live in today when you wonder about the consequences and outcomes. BUT, I AM TRYING.

Gaining the momentum

2006-07-23T13:54:00.000-05:00

A lot of good things are happening and I can not be happier even with the chemo effects working in me. First of, my insurance approved me for the transplant just in time for this chemo to be considered the mobilization chemo – which means I don’t have to do another chemo to collect the cells – this chemo is it! Second, the cocktail was pretty good on me – I must say this was the best chemo I’ve had. I know it works as I feel my lymph nodes and my body hurts again but I am almost used to it; and I don’t have the other bad side effects such as nausea, dizziness and extreme exhaustion.

More importantly, something’s changed in me. Not sure how to describe it and sometimes I feel there are no words that would express all that we are going through, yet today I came across this passage – it sums it well:

“Do not grieve at the afflictions and calamities that have befallen thee. All calamities and afflictions have been created for man so that he may spurn this mortal world – a world to which is he is much attached. When he experienceth severe trials and hardships, then his nature will recoil and he will desire the eternal realm – a realm which is sanctified from all afflictions and calamities.”

I am above my illness and the tribulations it has brought onto us – I see the eternal Beauty above and it’s worth any pain.

We are pleased :)

2006-07-17T21:25:00.000-05:00

As my MD Anderson oncologist put it "I am not elated but I feel good -- we are moving in the right direction". After a long and tiring day I am sharing with you the good news: "Size does not matter BUT activity levels do!". That's the message in a nut shell :) The details are: the chest mass barely shrank and is currently at 2.3 by 3.0 cm. The activity level though (the SUV) has come down from 6.0 to 2.6! My lowest ever was 4.4 (4 months ago) so this is way way better and I am feeling content. I am not in remission though so both of my docs there want me to do another round of new chemo - they believe my body responds better to new things so tomorrow I'll be checking in one more time for about 5 days. This time I'll be getting a cocktail of 4 new drugs - IGVM (Ifosfamide, Gemzar, Vinorelbine (navelbine) & Methylprednisolone. By now I feel like a pro and I am no longer scared. In fact, my doc feels so confident I'll be in remission that he wants to combine stem cell collection with this round of chemo. I am not sure of all the details but it should take 5 days for the chemo than 2 weeks to recover than they check for blood work and do another CT scan and if all good than they will start on the stem cell collection (another 3-7 day process). So all in all the real action will come into play in about 3 weeks or so... wow! It’s about time :)

Well, enough for today - I am very tired so I am going to bed.
Be good to yourselves and take care of those you love! Be Happy! I am happy!

Story time ... so to speak

2006-07-11T23:09:00.000-05:00

Tomorrow is the PET scan – at the crack of dawn -- my favorite time :(
Thursday is the CAT scan and Friday we will go to Austin just not to drill ourselves about the results. Hope no one asks me ‘how am I doing’ … last time we got too anxious – all for nothing. So this time I don’t even want to remember I have cancer. I don’t – not this weekend. Then Monday will be back to reality – the results.

Now, I’ve mentioned how much happened during my second week at the hospital. Really, I keep learning each and every day and the most valuable lessons are from those ahead of me on the journey so to speak. I’ll share the 2 most striking ones.

So I met this good looking lady from Florida – first person at MD Anderson who has had the same type of cancer – lymphoma – stage 2 bulky – chest & neck. She was diagnosed 2 years ago at almost 55. She was (and is) very fit and like me she started on standard chemo (ABVD). She responded great and went into complete remission. Then, 3 months later, she relapsed (meaning, cancer came back). And it came back more aggressive. So they recommended she goes for auto SCT (her own stem cells). She did ESHAPs like I just did and again went into complete remission so they proceeded with SCT once she recovered from pneumonia (almost everyone catches some sort of infection). She thought that SCT had surely cured her – wrong. Cancer came back just 2 months after SCT. So she came to MD Anderson – they suggested the allo SCT (donor cells). Her brother turned out to be a 100% match and when I met her she was 56 days post transplant. I was shocked to hear her story … especially, knowing that if this SCT does not work then there is not much left to do – this is her last resort for cure. I asked her how she feels about her situation and was even more shocked to hear her reply: “As long as this SCT lasts me a year or two I’ll be happy because by then they will surely come up with some other new drugs to cure me with.” I thought: “Wow, what an attitude and an angle to look at things!” She looked good – hard to believe she just had the transplant (other than the hat on). She laughed saying that throughout the whole thing most people didn’t believe she had cancer. She just didn’t look sick … I so understand her. I hear the same stuff all the time … I just hope my path will be different. But I am adapting her attitude … after all, who cares what’s ahead. We will all die, sooner or later. I personally prefer earlier but because we have Andryusha I am going to stick around as long as he needs me. In the meantime, I am living each day to the fullest I can – life is short to waste it on worrying on what’s ahead or dwelling on how bad things are or may be.

And here is my second lesson: I went to the MD Anderson salon in hopes of getting my wigs trimmed a bit. I had to wait as there was a girl ahead of me. I wondered if she was a patient as she had a full head of hair and looked pretty normal. She just had a wide band on her forehead. Well, when she sat in the chair and took it off -- my God -- her whole right side of the forehead was purple/black. I felt sick in my stomach – it was ugly to say the least. Turns out she has a brain tumor that’s spreading out all over. I asked her how is her treatment going. She replied that they’ve tried some new experimental vaccine but it didn’t do anything … I was speechless and silent. What do you say to something like this? “Don’t worry, it will be ok”? Not really; I saw a mark of death, I could not sugar coat and be overly hopeful. Then the hair stylist asked about the weekend plans and I was in for more shock. Turns out she’s got 2 kids: a 4 year old daughter and a 2 year old son. And if that’s not enough, an ex-husband who is giving troubles. Can it be any worse? Yes, it can … she said she has no support from anyone other that her mom … and she’s got no insurance. I was sad and totally blown away. And still it was not the end… she then said how they were praying the other day and once they were done her daughter said to her: “Mommy, when you go to heaven, I want to go with you. Can I come with you?”
My lessons: 1. When I was diagnosed I didn’t complain about “why me?” (cause really why not me?” Instead, I’ve always asked: “Why now? With a newborn in my hands?” It seams like I know the answer now … Thank God, Andryusha is too small to talk and understand what’s going on … 2. I thought I had it pretty bad… how naïve! The old proverb is so true: “There’ll always be someone who is doing better than you and always there’ll someone doing worse”. I was so relieved to know I am not in the very rock bottom :) isn’t it funny that we feel better when we know that someone else has it harder than we do? I hope you all feel much better now!!! LOL

Feeling good :)

2006-07-03T21:43:00.000-05:00

Yes, believe it or not, I woke up this morning at 7:15 am -- on my own! I fed and changed Andryusha all by myself for the first time in a long long while; I then played with him for about an hour and once he went back to sleep I tackled a whole lot of little to-dos. I am so happy - I haven't slept for a few nights and was really stoned so this was a nice turnaround. Thursday I'll be doing echo and PFT tests (checking my heart and lung before the transplant). Next week I'll be going back to MD Anderson for a PET scan and a CT scan. I should know my results on the 17th -- I should be in remission;

Also, today Andryusha turned 9 months! Check him out! See the 2 sharp pearls?!
He does all kinds of amazing stuff -- I LOVE HIM!!!

Happy 4th of July! We are looking forward to the fireworks (hope it does not rain).

Done with ESHAPs!

2006-06-27T16:15:00.000-05:00

Dear friends, thank you for all the sweet comments, calls and cards! So much happened in a week that I don’t know where to start but I’ll keep it short as I am still very, very tired...

I am back from the hospital and am resting. Overall, the chemo went well - I've managed the side effects better than last time (less swollen, less fluid retention, etc) but I am much more bitten up than before - I guess it takes its toll. Also, nausea came on earlier and I still have some now and again; I just feel hazy most of the day but all and all I am happy to make it through.

I was very lucky this time as my oncologist was on duty at the hospital so I got to see him every day - we grew closer and on Saturday when I was checking out he came to send me off and gave me a hug!!! I think I really really like him - he is honest, compassionate, thorough (never in a rush), with a good sense of humor and a great style (Raymond and I love his ties! :))

I will be going for scans mid July and if I am in remission then they'll go straight for the auto transplant (my own one). That should take about a month - give or take - then they'll follow me closely for 100 days and then I'll do radiation, recover and hopefully I can get back to normal life in the beginning of 2007. That's my plan and I am sticking to it!!!

Other than that, the highlights of the day are:
-- our car broke down today and we are now thinking it may be time to look into something more reliable but we don't want to commit to anything until I am well and working again.
-- we got a call from a modeling agency in Houston who saw pics of Andryusha that we took in the mall so they would like to audition him in July. Can you believe it?! We know he is cute and adorable but we attribute it to being so much in love with him and being helplessly proud parents :) but just the thought of the agency wanting to see him tickles us! We'll keep you posted!

BMT visit

2006-06-16T11:14:00.000-05:00

Well, I guess I'll never have it easy, will I? We finally saw the Bone Marrow Transplant department (BMT) and things are more complex than we thought. The whole SCT (stem cell transplant) is really up in the air pending my scan results. Depending on how well I do with these high doze chemos (2 rounds of ESHAPs) I may be scheduled for auto or allogenic transplant. Auto is when they use my own stem cells, allo would be from a donor. Of course, they like to say that they hope for the best (meaning the auto SCT) but plan for the worse (the allo). With that said, if I am not clean on July 10 after this next ESHAP, the likelihood of having an allogenic transplant will be eminent and my chances of survival lessened. The doctors said after a while the body gets worn out with so much rounds of chemo and the onset of other cancers possible, if I am eventually cured. Get this, if I eventually have to have an allogenic transplant the whole cost will be nearing half a million for everything. Mind blowing, huh?! That means when I get cured, I will be worth much more than ever...I will get close to being the million dollar baby :) Another interesting factor in all this is that if I need a donor, it will preferably need to be someone of my ethnicity, meaning from the states of the former Soviet Republics. That makes it more difficult to find someone that will match with me. For now, they want to get the DNA of my brother to see if he is a match (chances are around 25%).

So dear friends, hope you see the magnitude and scope of this kind of dilemma. Thank you deeply for your continued support and prayers. On a side note, Andruysha is doing very well, growing and learning new things everyday. Raymond continues to be superman holding the world together around us. Be good to yourselves, cherish every moment with your families and turn your gaze to the Omnipotent and All-Knowing Creator.

What happen?

2006-06-11T17:05:00.000-05:00

Just when I thought I was free of pain and getting better I got a call from my local clinic saying my blood markers were too low and I'd need blood work every day and some Neupogen shots and some pills for low potassium. I could not believe it ... Neupogen really makes me miserable - it's stronger than Neulasta but acts over a shorter period. Those of you who ever gave birth can relate to this comparison - contractions! When I was pregnant swimming brought substantial relief but now I am told I should not swim (cause I can end up in a hospital should I catch any bug); and I can't eat fresh fruits and veggies - something I've been doing all this time! You can imagine how bombed I felt.

Good news is that the shots and the pills did their job and I am now much much better.
I am over the pain and I don't have to do blood work till Tuesday! In fact, I am feeling rather terrific - we took care of so much needed household stuff (like 4 batches of laundry :)) and I went to a concert of Russian songwriters.

So I have one more week to enjoy before I return to MDA. And, the World Cup is on - Raymond is so excited about each game (he used to play in the national youth league n Belize). And I love football too!

Best news of the day

2006-05-31T15:57:00.000-05:00

I just got a call from MDA and they told me they want to hold off on the next ESHAP until June 19. I am so excited to have an extra week of sanity and peace!

Of course I asked why not the 12th as I was told the protocol is to have it every 3 weeks (1 week of chemo and 2 weeks to recoup) and their answer was that some doctors to stick to the guideline but my MDA doctor wants my platelets be fully back to normal before he hits me again. What can I say? I could not agree more and I think he is the best smartest fellow out there!

Inspirational stuff

2006-05-30T23:43:00.000-05:00

While I am at it… this dude is really cool, he makes me laugh and he’s got the same damn hodge… and I love the quote he has on his site:

Be patient and tough; some day this pain will be useful to you. -Ovid

chemo reality

2006-05-30T23:36:00.000-05:00

Well, I typed up some stuff yesterday and it got erased … and I was too tired to re-type it. Shortly, I didn’t realize the mighty effects of ESHAP until I got home. As steroids wore off I realized how weak I am. A trip from bedroom to kitchen made my head spin and prompted to lay down… and I ached like never before, especially under armpits and behind ankles and joints. My feet felt like cotton and I’d get out of breath instantly.
Only good news is I got to sleep much of the weekend and Memorial Day.
I feel much better today … and here is why:
1. I didn’t think much about cancer cause good friends drove over and we did fun stuff
2. I was around young, beautiful and healthy people
3. My husband got a break and seeing him happy made me happy :).

I want to keep this happy feeling and stretch these 2 weeks as long as possible!

Going home!

2006-05-27T09:20:00.000-05:00

I made it through 5 days of ESHAP! I am all packed and ready to go -- just waiting for the doctor to sign me off :)

It was definitely different from ABVD but thanks to nurses and all the wonderful staff they made it more bearable that if I were to do it home alone. Iwas nauseous and sleepless for 3 nights even with sleeping pills... and my tastes buds are all altered; I am all swollen and my face is round and pink but that's expected with all the steroids I got. For 2 days I retained so much liquid and gas that I ached all over. I could not lay down, turn, sit -- it was bad and I am glad it's all over now! I am so happy to get a break for 2 weeks before I have to do this again.

Thank you for all the prayers, calls and e-mails -- they come when I need them most!!!

some cute pics

2006-05-21T11:30:00.000-05:00

Well, since ya'll love Andryusha's pics so much here are some of my favorite ones:

1 -- Cute hat!
2 -- I am ready to camp! I love my tent!
3 -- Who is this gorgeous beauty? And why is Papa messing around with mama's wig?

Looking inward, looking outward

2006-05-20T22:57:00.000-05:00

So it took us a few days to cry out all the tears we’ve had, wonder and ponder the ever eternal “why?”, then calm down, think of all the options and make up our minds. It was hard to decide as the doctor’s said I have a 50-70% chance for it to be successful (way too low for my analytical mind). And really, this is the last resort; meaning if it’s not successful then there is not much to be done to CURE. And when I read stories like these I get inspired, yet I feel very skeptical http://www.hodgkinsfoundation.org/index.html or http://www.alesecoco.org/ Nonetheless, I will give this cancer yet another shot and Monday I’ll be checking in to MDA for a higher doze chemo – ESHAP, which takes 5 days so I hope to be back home by Saturday. Raymond will be staying with Andryusha in a hotel nearby (please call him and help him out with the baby if you can).

Anyway, I’ll then have 2 weeks to recoup, then back for another round. You know I am not afraid or scared of anything anymore, I just don’t want any more pain. On the positive note, we are ever grateful for all the charities that are supporting MD Anderson patients. And thanks to our social worker Nancy one of the organizations will provide the hotel for free for 5 days. And we are already planning for the next 3 months. Several churches provide subsidized apartments (at $30 a day which is way less than any hotel around) so we are in the waiting line.

Wish me luck – that I tolerate the ESHAP well but above all that it works (I really need to be in remission before they proceed with SCT to increase my success rate).

P.S.: Thank you for all the e-mails and calls – we appreciate your support, your desire to help. Your love and care strengthens me as I prepare for the big fight ahead. SPASIBO!

Biopsy results

2006-05-15T21:38:00.000-05:00

Again, short and sour... after spending entire day at MDA we were confirmed that it is still Hodgkin's and it is very much alive and well. While, deep inside I was prepared for the bad news I wasn't prepared for the treatment suggestions. Our new oncologist wants me to do a TRANSPLANT (bone marrow). Don't you think it's a bit too much?! I don't know that I can pull this though and keep dragging on the pain another 4 months or so ... tomorrow I will see my local oncologist ... I need time to think and process all the pros and cons before I make any decision. Today, my head just hurts too much ... I didn't get much sleep. Bye, bye...

Biopsy update

2006-05-14T22:28:00.000-05:00

It went well. It took a little longer than expected as they had to "stab" a bunch of times. For some reason the mass was very hard (fibrosis?) and it was difficult to get the stuff out. The first doc tried it about 10 times then another doctor tried 3 more times at a different angle and was able to finally get to some soft tissue. I was awake the whole time (sedation just kept me calm) and felt mild stabs so now I know what it feels like to be stabbed :) I mow also know the exact location of the mass - slightly to the left from the chest center and pretty close to the port. I was very tired the rest of the day with mild chest pain. Most importantly, my lungs are fine (thank God) and tomorrow we will be going back for the results and consultation on the course of action.

P.S.: Thank you for all the e-mails, comments and calls these past few days - they mean a lot to us though we may not always respond right away. Thank you!!!

Big day tomorrow

2006-05-10T12:03:00.000-05:00

MDA just called - they moved up my appointment and I am set for a biopsy tomorrow.
I am glad - and somewhat scared. There is a 15 % chance of lungs collapsing if the surgeon touches it by accident. Well, I am going to focus on the end results - a definite answer as to where I stand with Hodge Podge. I don't want to give cancer any extra time to bloom -- I want it dead like never before. Yesterday, we met with a radiation therapist and looks like the team is working on a new treatment protocol. They feel the good ol' ABVD exhausted itself and it's time to try something else. Will know what it will be once the biopsy results are in. Wish me luck - that a get a sharp surgeon and a flawless biopsy.

Oh ...

2006-05-08T13:03:00.000-05:00

Oh yes, desperately trying to see something positive in all this... here is one: no chemo tomorrow!!!! I get a little break!

And my new onc thinks that if we proceed with ABVD chemo then we should definitely drop one of the drugs in the cocktail - bleomycin (the B). It damages lungs and my capacity already dropped some and I have developed some whistles.

Once we have the results he will advise on the next course of action. Our options are: more chemo (AVD) plus radiation, or transplant (it's back on the drawing board) or God knows what (may be new chemo mix).... we are speachless.

PET/CT RESULTS

2006-05-08T12:55:00.000-05:00

So we were able to switch doctors and this morning we went back to MDA to get the results and see the new doctor. The new onc is awesome and his staff is equally great. As for the results.... well, they are not as good. The mass shrank a tiny bit more (which is good) BUT ... the SUV activity increased from 4.4 to 6.0 (not too good). So they don't know what to make of it and what to do treatment wise. They suggested to do another biopsy and see if it's still Hodgkins or some new gross (??) decease. We agreed and we are at the moment waiting for them to tell us when and how it will happen (it's great they have a high speed internet here!)

Needless to say, we are bombed ... I was so sure I was clean (or with some scar tissue and no activity) ... it's hard to believe the stupid stuff won't go away!!! We'll keep you posted.....

Much love to all who read this and keep up with our soap opera! (it's hard to believe this is all happening to us and not in a book or some "reality show".)

Summer is here!!!

2006-05-05T13:36:00.000-05:00

Are you ready for the heat?! I am not (I can't stand it - it makes me sick) BUT Andryusha is!!! He has a cute pool and he loves it! At first he didn't know what it is so he was all quiet and observant. Then he realized how much fun this is and smiled and started playing and splashing. Since he was born in the water he loves it! So we all had a blast!

Donating Bone marrow is easier + Filipino donor needed

2006-05-05T13:22:00.000-05:00

I just got this ... I think the more people we get registered, the more people who will live long healthy lives. And I do have a few filipino friends - YEAH!! :)
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This is great news!........ Signing up for the bone marrow registry (NMDP) has gotten a wholelot easier! Kim Ramos at City of Hope is able to send a self-registration package to anyone who is willing to sign up for the NMDP Registrybut can't make it to a bone marrow drive. The self-registration buccal swab kit eliminates the need to give a blood sample in order to be tested for the bone marrow registry. Instead, you just need to swab the inside of you cheeks with provided cotton swabs. It can be done at home. It's easy and painless! You will also need to complete a registration form and consent form. City of Hope has also informed me that anyone who is an ethnic minority (Asian, Hispanic, etc) will have their processing fee waived (grant money available for minority donors). So if you have aFilipino friend who wants to sign up for the registry, IT WILL BE FREE. To check to see if you qualify to be a bone marrow donor, visit the NMDP website: http://www.marrow.org/HELP/med_guidelines_join.htmlBUT DON'T SIGN UP ON THE WEBSITE- City of Hope will process all of Christine's friends and family. (The website is not able to waive the fee for minority donors.) Most important: If you sign up, you'll be signing up to be checked for compatibility to all patients who need a bone marrowdonor....not just Christine! Remember- It is important that we give hope to all Filipino and minority patients like Christine waiting for a marrow donor. One last thing, you must to be a US citizen or permanent resident to receive the kit and register as a potential donor. You can reach Kim at City of Hope by email at: mramos@coh.org Please provide the following in your email: 1. TYPE CHRISTINA PECHARA IN THE SUBJECT FIELD OF THE EMAIL 2. ENTER YOUR NAME, ADDRESS AND PHONE NUMBER 3. SPECIFY YOUR ETHNIC BACK GROUND (Kim will waive your fee if you're a minority. If you are not a minority, you will be asked to pay $50 to cover the cost of your tissue typing. Goverment grants make minority testing possible.) Please join our efforts and help get the word out. Christina and other patients are hoping that you'll help recruit more potential donors. Sincerely, Doug PS. Here's more contact info for Kim, but the email is thepreferred method.Kim RamosNMDP - SpecialistDepartment of Transfusion Medicine(626) 359-8111 ext. 63262 Office(626) 301-8826 Faxmramos@coh.org

MD Anderson

2006-04-23T00:27:00.000-05:00

Ok, I promised to write about my visit to MDA ... and it took me a while to do so. Yes, I am not as prolific as some other bloggers and cancer warriors. For many reasons/excuses... One, I am constantly tired and even computer makes me exhausted after 30-40 mins. Two, when I feel good I don't want to think about cancer -- I want to live and Andryusha comes as number one life choice :). Third, being sick makes you ponder what's really important. So much stuff is just meaningless and sometimes I wonder what do I really need to say -- is it important? who cares? Most of the time, I feel like there is not much to say that's really important. If I were to give the big speech (say, I were to die) -- it would be about love, the need to love and be loved. It'd would be about life, our purpose in it and life to come in the next world. Not about what I eat and how I sleep, what meds I take or how sick I get from chemo. So since I am not dying I am saving the big talk for later :) For now, excuse me for writing scarcely (or too much or just enough) -- I am moving on to MDA story.

The scoop is that this time the doctors' opinions of my treatment plan differ - a lot. The MDA onc would like me to do all scans and test at MDA from now on and I am set to go back to them on May 4. I was rather confused by the guy's attitude - overly confident and somewhat arrogant. He didn't look at my previous slides/films and I didn't particularly enjoyed his communication style (I felt stupid as no matter what question I asked he would tell me not to worry and would not go into details and explanations) In fact, he didn't listen much and interrupted both Raymond and I. I am not sure I want to go back to him but I consulted again with my current onc and he didn't mind me doing the scans/tests there. We'll see if there is any difference. Honestly, something tells me I am clear now - I've had the feeling for the last few weeks, where as before my guts where all alarmed and troubled. Bottom line, the onc at MDA stated that I am not a candidate for transplant and I don't need to do 2 more month and -- get this -- I don't even have to be clean. This was way on the opposite side of my onc, who wants me to be clean and once I am clean to do 2 more months + rads to ensure I don't relapse. Of course, I'd love to be done with chemo, but I would also love to be done with this crap once and forever! No relapse!!! So I am torn. I lean towards my current onc as I feel he wants the best for me and he is being aggressive yet conservative with his treatment plan. The MDA onc is probably smart and witty but I felt like I am just another routine case when talking to him so I am not sure how thorough he was in his analysis (if there were any). What do ya'll think?
I also got a good advise - to get a third opinion, so I am working on that in the mean time (it's not easy to switch doc's at MDA).

Next Tuesday is chemo again - this will be my 12th treatment - I've been doing this for 5+ months now (I can't believe it). Last Friday was my worst day in the entire 6 months and I am now just happy to be alive and moving on my own. I got this new drug for bone pain that is like morphine and I was all ready for being high and relaxed and having great visions; instead I got so nauseous I could not hold anything down and ended up vomiting 3 times in a row. I was gone and it was horrible -- I had to take another drug to combat the nausea. I could not eat anything entire day - I was miserable. But then by Monday I felt great -- like being myself again. I filed taxes, sorted/threw away a bunch of papers and even organized some stuff around the house. I felt so happy to be able to do things again!!! Too bad I only have 2 days left before I go into the black hole again. So here is a scoop of mundane stuff in case you wanted some :)

Next, I'll post some cool pics of Andryusha - stay tuned!

Is Chernobyl related to my cancer?

2006-04-18T21:28:00.000-05:00

Well, as the article in the title link suggests, far many more are affected than originally estimated (the other articles at the bottom are rather interesting as well). I am puzzled and curious … I don't know but feel like it may very well be linked. Ukraine is on the border with Moldova, my home country. Sometimes, I get into the drill of 'why', 'why me', 'why now' and every time I hear or see cancer related stuff on the news, it gets even more intense ... I probably should not, cause it does not make any difference. I can't turn the clock and undo anything. And frankly, I begin to think, that may be this is how it should be ... you know, cancer grows on you. I talk with myself and with my cancer... I am not angry anymore, I even joke about it. Who knows, may be someday, I'll come to miss the pains I am experiencing now. Gush, I am so much more sensitive to life. I cry for little things - a smile of Andryusha, the look in Raymond's eyes, the songs from home, you name it - and I might cry .... oh well. I'll cut it here :)

random thoughts

2006-04-05T12:52:00.000-05:00

Just wanted to let you all know that the e-mail with the blog site will most likely be the last note; blogging is the way to go these days so just bookmark this page and periodically check in for updates and news.

Andryusha turned 6 months on Monday -- can you believe it?! I certainly can't! He is such a big boy, or better yet, he is my little man!!! I love this picture with the bluebonnets! He's been sitting up for about a month now, standing up strongly and easily turning one way. Now he can stand holding on to something on his own and roll a few times in a row. Right now he is assisting me in typing :) ... dlgoirnmlkgr -- yep, that was baby Andryusha saying 'Hi!' to ya'll!!!

Well, more on MDA later - got to feed this growing boy!

Two choices

2006-04-05T11:55:00.000-05:00

I received this from a friend and thought I have a third choice - post it here!
It is very well worth the reading! I will post my update on MD Anderson in a while.
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What would you do? You make the choice! Don't look for a punch line; There isn't one! Read it anyway. My question to all of you is: Would you have made the same choice?
At a fundraising dinner for a school that serves learning disabled children,the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"

The audience was stilled by the query. The father continued. "I believe,that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes, in the way other people treat that child."Then he told the following story:

Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked,"Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

Shay's father approached one of the boys on the field and asked if Shay could play, not expecting much. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning." Shay struggled over to the team's bench put on a team shirt with a broad smile and his Father had a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.
At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible 'cause Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing the other team put winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least be able to make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over, but the pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.
Instead, the pitcher threw the ball right over the head of the first baseman, out of reach of all team mates. Everyone from the stands and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever ran that far but made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, "Run to second, run to second!"

Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to second base. By the time Shay rounded towards second base, the right fielder had the ball, the smallest guy on their team, who had a chance to be the hero for his team for the first time. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions and he too intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, "Shay, Shay, Shay, all the Way Shay"

Shay reached third base, the opposing shortstop ran to help him and turned him in the direction of third base, and shouted, "Run to third! Shay, run to third" As Shay rounded third, the boys from both teams and those watching were on their feet were screaming, "Shay, run home! Shay ran to home, stepped on the plate, and was cheered as the hero who hit the "grand slam" and won the game for his team. <> That day, said the father softly with tears now rolling down his face, the boys from both teams helped bring a piece of true love and humanity into this world. Shay didn't make it to another summer and died that winter, having never forgotten being the hero and making his Father so happy and coming home and seeing his Mother tearfully embrace her little hero of the day!

AND, NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people think twice about sharing. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools and workplaces.

If you're thinking about forwarding this message,chances are that you're probably sorting out the people on your address list that aren't the "appropriate" ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the "natural order of things." So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up that opportunity to brighten the day of those with us the least able, and leave the world a little bit colder in the process?

A wise man once said every society is judged by how it treats it's least fortunate amongst them.
You now have two choices: <> 1. Delete <> 2. Forward

May your day, be a Shay Day,sunny today tomorrow & always!

Update # 3

2006-03-27T23:10:00.000-06:00

This letter was sent on March 22, 2006:

Dear friends,

We received so many calls and replies back to my last message that I feel the need to write again and give you the latest scoop.

Yesterday was the spring equinox and the Baha'i New Year. I felt the need to make changes with the New Year so we started it off meeting my oncologist again to find some new strategy for faster recovery (you know I don't have much patience!).

So here are my New Year resolutions:

1. I will go back to MD Anderson to see if I qualify for any trials or non standard treatment options. My onc still feels positive that we will knock it off with 4 more cycles but does not eliminate the possibility of SCT (stem cell transplant along with higher dose of chemo).

2. I will take more medications to help me get through the side effects and pain. Up until now I've been tolerating most of it and took very few additional meds because I already get steroids and all the prescriptions I've tried really made me groggy and hazy and I felt I could not take them with Andryusha in my hands. So we'll keep trying until we find the ones that keep me awake and in touch with reality.

3. I will work on getting fit again. I will walk more, I will not skip yoga (especially since my favorite teacher tested positive on her mammogram) and I will resume swimming. Honestly, the bone pain made me slack a whole lot and I just always feel exhausted and tired. But I've been reading Lance Armstrong's book and I see that he kept walking through the whole treatment, no matter what. So hopefully with a little help from drugs I'll be able to do just that. :)

4. I will eat better ... with mom gone we've been skipping meals all the time and the nausea and mouth sores, and tongue blisters contributed to it a great deal (and every time it takes longer for them to go away even with medicines). Also, I read Lance Am strong was advised to eat more organic food and include more broccoli and berries, and use organic dairy and free range chicken instead of regular. So even though it's much more expensive to eat organic I will do my best to make the switch for the 4 months of chemo ahead.

5. I will take more homeopathic remedies to help deal with the insomnia and stomach burns I've been having. It kind of goes along with eating consistently.

6. And of course, I will keep praying and keep my faith up. Someone read my palm the other day ... It does not look like it' my time to die yet (though there is a sidetrack along the way). I hope you'll keep praying for me too and together we will survive it! I keep playing this movie every time I want to quit and die.

And here is small gift for New Year -- pro pics from when Andryusha turned 4 months.

Peace and Love,

RayAndNat

More history

2006-03-27T22:47:00.000-06:00

Letter #2 from March 11, 2006:

Dear family and friends,

Well, since I promised an update last time – here it is … and it is going to be short and sour … we received the scan results yesterday and while I am still responding to the treatment, the progress has slowed down. My mass only reduced from 4.6 x 4.4 to 2.9 x 3.0 cm. And the cancerous activity is now at 4.4 (from 5.8); where as we have hoped it would be at 2.5 or less. So this means that I may now be considered at higher risk than before and I definitely need to extend the treatment for another 4 months plus radiation. I don’t know how I am going to do it… I am both physically and mentally worn out and now I feel tortured. One side of me says to just let it go (there are too many ifs and lots of hope with not much supporting facts) and another one says - keep trying (don’t give up as you are responsible for your baby and husband). I am so confused … why it is going this way?

Only Andryusha is doing great, keeping up in the top 10 percent. Here are some pics to enjoy.

Love,

Natalia, Andryusha and Raymond

A bit of history

2006-03-27T22:30:00.000-06:00

Since this blog is in the middle of the chemo we'll go ahead and provide a bit of history.

Letter #1 from January 4, 2006:

Dear family, friends and co-workers,

2005 has been quiet a year for us and it's about time to give you an update. As most of you know, we were blessed with a sweet baby boy on October 3, 2005. Today, Andryusha is 3 months old and is really amazing: he has more than doubled his weight (born at 7.2 lbs and now at 16+ lbs), has a great appetite, loves outdoors and traveling; he is very sociable and loves to cuddle up. All in all, his sweet disposition and good character enamors us all day long and we are growing more and more attached to him - we never thought parenting would be so great and that we could fall in love so very much! Since so many of you asked for pictures, here are just a few of the pearls - from the first month to 2.5 months. We promise to share more as time allows.

These are our good news. The not so good news (some of you know and some don't) is that 3 weeks after Andryusha's birth we got the biggest heart break: I was diagnosed with cancer - stage 2 Hodgkin's lymphoma cancer. The story of how it happened is long - to make it short, I noticed a swollen node while in India but doctors said it was just an inflammation that happens sometimes during pregnancy -- so not to worry much. But once we got back to U.S. and it didn't go away my midwife wanted to check it further. So from then on it's been a rough journey and hence the biggest reason for not sending any pictures or communicating much. I had a few scans, surgeries and biopsy and now I am going through chemo treatment and just completed the 2nd cycle with 4 more to go (plus radiation later on). I firmly believe that everything happens for a reason and for the best. And bad as it is, there are good things that are coming out of this as well: I never realized how many people care for me - I really didn't want to fight at first (it is so tiring to be strong all the time!) but seeing how many folks want me to stick around I could not let them down. I am now confirmed I have the greatest neighbors and amazing friends and co-workers. It is a very humbling experience to not be so independent and let people help you and I am truly thankful for it. Many of you have helped us in so many ways - with baby's milk, cute books to read at night, gorgeous crib, sweet 'get well' cards, e-mails/phone calls, and just plain food and groceries. You are all so amazing and we are so ever grateful to each and every one of you.
THANK YOU!

By the way, did you ever feel sad that Superman died? Well, let me tell you that he is very much alive and is acting under cover - being my husband :) I am amazed how he is handling me and the baby (I really don't deserve such a great man). My mom came from Moldova and has been of help as well - we will miss her cooking once she goes back home. Even the nurses at the cancer center are kind to me - they really want to make sure I am comfortable at all times and well taken care ! of. When tears come to my eyes - it is from mixed emotions of pain, sorrow and joy. I am growing up and getting wiser... So these are the greatest discoveries and confirmations for me - cancer allowed me to see the best sides of all of you. Please stay in touch and forgive if we don't reply right away. We love you all and think of all of you all the time.

Wishing you all health, love and blissful happiness in the new year and life ahead,

Natalia and the family -- RayAndNat