relapse #2. from Martin

Mam zavolat ve 4, tak jdu zavolat. Budto mame 3 dny do odjezdu na zabaleni a ostatni veci spojene s odjezdem a nebo musime prijit s planem B.

One phone call. I know I had to make it. It was 4pm and dialed the number. We either start packing and get ready to leave in 3 days or we just have to figure out a plan B.  

Spatna zprava.

Bad news.

Nevedel jsem jak moc je ta zprava spatna, do te doby nez jsem mluvil o tri hodiny pozdeji s doktorem. Mam “dalsi” relaps, to je vsechno co jsem slysel. To jsem si jeste myslel, ze bych mohl s doktorem treba uhadat mesic v Americe a pak bychom se pustili do chemoterapii.

I just didn’t know how bad it was, until I spoke to my doctor three hours later. The bad news was just “another” relaps .That’s what I heard. At that point I was thinking I could do some negotiating with my doctor about leaving for some time in the US before we start another round of chemo.

Stacilo jedno slovo. Transplantace. Hned jsem vedel co to znamena. Tady neni prostor pro vyjednavani.

It took one word. Transplant. There was no room for negotiation. I knew immediately, what it meant.

Po nekolika dnech me napadlo toto prirovnani, ktere mi pomaha se s tim vsim vyrovnat. Pred dvema lety, pri diagnose leukemie APL, jsem byl povolan do armady. Zivot se zmenil, to co jsem znal uz nebylo a to nove se stavalo mesic za mesicem snesitelnejsim a normalnim. Ve ctvrtek 24.rijna zprava ze transplantace je nevyhnutelna  znela jako kdyby prisel povolavaci rozkaz do boje. Cas dvouleteho treninku skoncil, jdeme do boje.  

Here is the illustration that helps me understand what is happening. Two years ago, with the fresh diagnosis, I was enlisted into the Army. Changed my lifestyle, the old life is gone, the new is still kind of new, but familiar and bearable. On Thursday Oct 24, with the news of transplant, came the order to go into the battle. The two year  training time is over, we move to the real fight.

Rika se, ze je dobre zacit u konce, at jde o cokoliv. To je nase pozice v tuto chvili. Samotna transplantace je diky pokroku mediciny rutinni zalezitosti. Bohuzel to co se odehrava v tele pred a zvlaste po transplantaci neni rutinni zalezitosti, ale bolestivy a zivot ohrozujici proces. Tohle uz neni ta “leukemia light” jak jsem o ni psal pred dvema lety.

They say, that with anything, you need to start from the end. That’s where we are now. The transplant itself is a procedure, that is a medical routine. The time before and especially after the transplant is not just painful but dangerously life threatening. This is no longer the “leukemia lite” as I called it almost two years ago.

Za posledni tyden se toho udalo pomerne dost. Minulou stredu dala moje sestra Jana vzorky krve na testovani pro mozne darovani kostni drene. Dnes jsem se dozvedel ze Jana nemuze byt darcem. Aniz by se ztracel cas, uz se pro me celosvetove hleda v databazich vhodny darce.

Things are moving fast. Last Wednesday my sister Jana gave blood samples if she would be a matching donor. Today I heard that she is not a match. With no time to waste, a world-wide search for a suitable non-family donor have began.

Tento ctvrtek me ceka lumbarni punkce. Je to z duvodu vylouceni pritomnosti leukemie v mozkomysnim moku. Pokud by tam leukemie byla, znamena to zmenu lecby. Stale se modlim za uzdraveni. Ale kdyz prijde na to jestli podstoupit transplantaci nebo mit chemoterapii, ktera pronikne do mozku aby to tam vycistila tak uprimne priznavam ze si nejsem jisty co si prat vic..

On Thursday, Nov 8^th, I will have a lumbar puncture to eliminate a possibility of the leukemia being in the cerebrospinal fluid. This is the last test that could alter the treatment for my diagnosis to something else than a transplant. To be quite honest, I don’t know what to pray for. I pray for healing, but neither transplant of the bone marrow nor the option of some chemicals having to kill something in my brain make my choice easy.

A jeste je tu Buh. Jeho pritomnost zazivam intenzivneji nez kdy predtim. Nemuzu ted mluvit o radosti tak jak jsem ji prozival v lete, ale muzu vydat svedectvi o velkem vnitrnim pokoji uprostred toho vseho bez garance happy endu. Nevime poradne do ceho jdeme. Nevime jak to dopadne. Co vim urcite je, ze me leukemie nemuze odloucit od meho nebeskeho Otce. Behem poslednich dvou let, kdy me drzel za ruku a prochazel se mnou od udoli az po vrcholky hor (doslova I obrazne), moje duvera v Neho posilila a duveruji mu jako dite svemu rodici. To je misto na kterem stojim – v duvere v Nej. Porad mu ale prekazim, kdyz prijde na to co Jane a holky. Chci byt ten kdo je povede a kdo se o ne postara, ale ja je neznam tak jako On a ani se o ne nikdy nebudu moc postarat tak, jak to dokaze jen Buh sam. Jako je tim milujicim nebeskym Otcem pro me, takovym je I pro ne.  To jen ja si naivne myslim, ze beze me to nejde a ja se o ne postaram lepe nez On.

And then there is God. His presence in my life feels stronger now than ever before. I can’t speak of joy as I spoke in the summer, but I can witness a great peace about this whole process with no guarantees of a happy end. We don’t know where we are going. I don’t know how this is going to end. But I know that leukemia can’t separate me from the loving heavenly Father! Last two years he walked with me through the valleys and mountain tops (literally and figuratively) that trusting Him like a child trust a parent is easier.  That is where I am – I trust him. What is really hard that I am still in His way when comes to Jane and the girls. I want to be around for them, but He knows and will take care of them much better than I will ever be able to. He is the same loving Father to them as He is for me. It’s only in my head that I think that they need me more than they need Him.

Nevim kdy znovu napisu. Mam par tydnu, mozna dva mesice pred tim nez budu stat v prvni linii boje o preziti. Musime ted dobre nakladat s casem a pripravit se jak jen to pujde, zvlastne na nekolikatydenni dobu transplantace a rekonvalescence.

I don’t know when will I write another message. I have a few weeks to couple of months before heading to the first line. This will be a time for us to make a lot of arrangements for the time of and after the transplant.

Jsme vam velice vdecni za slova povzbuzeni, prani a modlitby. Prosim modlete se za nas jmenem a za nasledujici veci:

We are thankful for your encouragement, thoughts and prayers. Here is one specific prayer request for      each member of the family:

Martin- moje pamet uz neni co byvala. Prosim modlete se abych si nasel cas a prostor naucit se vybrane casti Bible nazpamet . rad bych je mel ulozene v mysli pro dobu po transplantaci, kdy udrzet Bibli v ruce bude nadlidsky ukol.

my memory is not what it used to be. Please pray that I will make it a priority to memorize the right Bible verses to have them stored for time when the Bible will be too heave to lift it up.

Jane: for strength and encouragement and to just take things one day at a time. 

Sofia (5) – prijeti reality vaznosti onemocneni jeji taty. Je dost dobre mozne ze to budou tydny, kdy se neuslysime a neuvidime, vlastne nebudeme moci spolu vubec komunikovat

 to accept the reality of her dad sickness and the silence that will happen for weeks in our communication.

Mia (3.5)- kez by Mia zustala saskem rodiny a dokazala rozesmat celou rodinu jako to delala do ted – jeji jednoduche slovni hricky ktere se nerymuji, pokracovani objevu veci ktere jsou vic nez jasne, neskutecnymi tanecnimi kreacemi a legracnimi obliceji. Nesmime se jako rodina prestat smat!!!!

 to stay the clown of the family, to entertain everybody with the simple but silly jokes, fascinating discoveries of the obvious, entertaining dance moves and funny faces. We need to continue laugh as a family.