Slowing down … again

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

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 :)

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

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 :)

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).