To a new beginning… indeed

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...

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?

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.

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

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....

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

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!

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

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 :)

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!!!

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!

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....

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...

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

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!

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!!!