Best news of the day

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

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

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!

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

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

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

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

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

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 ...

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

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!!!

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

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