My latest Leukemia treatment update & why Friday’s doctor appointment left me in tears
I have been home from the hospital for 2 weeks now and it has been amazing to be home with Cesar, Gabriel and my mom too.
Last week as a waited for my blood counts to come back up I manage to land myself back in the hospital over a simple common cold that knocked me down.
Each day I wake up giggling with Gabriel and live each day to the fullest. I found a swim class, soccer class and a gymnastics class that will let us pay per class rather than per semester because they have been kind enough to take my situation into account. We have had so much fun. It hardly seems like I have leukemia and a terrible life threatening disease as my doctor reminded me today. I may not have a lot of strength but I find it when Gabriel leans over and gives me a kiss and says “ I wuv you Mami. I miss you” Today a simple 1 mile bike ride was beyond exhausting for me….. and that leads me to how i am doing. Sometimes i wonder if i am in denial or just choosing to focus on the positive. Friday’s appointment was a reality check that left me in tears. (its taken me this long to write about it)
I was going to avoid sharing all the details of yesterdays appointment because I have some friends who are tough on me and say “stop crying. Don’t dwell on the negative and stay positive.” I must say I do a pretty good job doing that. Call it denial or just plain loving life.. but i’m positive about 97% of the time.
But sometimes you can’t sugar coat things and I have promised from the very beginning to keep things open and real about my treatment. It would be selfish to not swallow my pride and not share this information. My goal has always been to inform others and you can’t be informed with half the information. I want you to know I will remain positive and perhaps in denial of the numbers and consider this just a bump in the road. But I won’t deny hearing statistics and “mortality rates” did a number on me mentally and I was in no mood to post or talk about it. Everyday I wake up strong. Every day I think and plan for a great future with Cesar & Gabriel and every day I enjoy life but I’m sorry you have to give me slack and a chance to cry for 24 hours after emotionally tough appointments. You can’t tell me that if you were told “you could die” it wouldn’t shake you a bit for at least one day.. Please don’t be disappointed in me and I ask that you give me time to cry and get it out of my system and then pick myself up and be positive again. I always said you never know how strong you are until being strong is your only option. Strong IS my ONLY OPTION. Yes.. I will win and Yes.. Gabriel will have me around for years, yes Cesar and I will re-new our vows and grow old together and yes we will have another baby.
Here’s the deal.
I’m at a cross roads. September 5th I have a bone marrow biopsy to determine: (also the date to tune into STAND UP TO CANCER)
IF the cancer is in my bone marrow
IF the cancer is in my stem cells
Then I will have a bone marrow transplant. Doctors DONT want to do that . They feel the risk is higher for my mutation… plus we are expecting these tests to come back negative anyway.
So, that leaves me with the treatment I am on… called HIDAC (High Dose Ara-C) Its a super high dose of chemo you get in 4 rounds AFTER the initial boot camp treatment when you get first diagnosed. As of this date.. I have completed the boot camp and 3 of these 30+ day treatments. The problems is my body is having a tough time clearing the chemo. That means my body is so broken down from the chemo that it is not leaving my system. No big deal right? Well according to my doctor too much chemo can be deadly. I am not recovering well. While I look fine in person… on paper it doesn’t look as good. So far this time it has taken me 48 days to recover. When we talk recover that means.. the chemo knocks my white count to zero and then my bone marrow starts to rev its engine and perform on its own. My body took 18 days to do anything and even on day 48 (friday my last appointment) my number were half of what they should be by this time.
So my doctor has a decision to make:
Give me the 4th round of treatment -intense dose on schedule
Give the the 4th round 1/2 the dose
Stop treatment and hope the cancer doesn’t come back
At this moment.. my doctor has decided if my bone marrow biopsy and stem cell is clear he will delay treatment. Put me back in the hospital for at least 30 days with only 1/2 the dose. (Sept 29th) It is a fine balancing act of what is best for my body. Too much chemo can be deadly and not enough won’t get all the cancer. So I ask.. “How will we know if we are doing the right thing?” Can you check during the treatment between doses and see what my levels are?”
His answer “No.. we won’t know until AFTER the treatment and we watch how your body handles it.”
At this point I began to cry. So much unknown. My head was spinning and Gabriel’s face and voice saying “Mami Mami kept playing over and over”
Ok.. so lets say I recover ok. What’s next?
Do we go dance the night away and celebrate? Not exactly my doctor say.
The first year is critical and I have a 30-40 % chance of relapse.
Although he did calm me down when he said my type of mutation and my age works in my favor to lower my risk of relapse.
I’m also on a trial drug called Pomolidimide that should lower my chance of relapse. It;s a roll of the dice. We can only pray.
What if I relapse?
Doctor “well we have to put you back in and through the long 40 day boot camp and put you back into remission. THEN do a transplant.”
Me “What if you can’t get it into remission?”
Doctor “You die.”
Me “What?? “
Then I simply lost it. FEAR took over me and I was in shock. For some reason.. this who idea was a big surprise to me.
Forgive me for my ignorance —that may have seemed like an obvious answer but despite being a journalist and wanting to research.. i have purposely for this very reason looked up VERY LITTLE on AML. I don’t want to know all these things. It’s better I don’t.
So.. there it is. Play by play. But do know.. we are in GREAT hands with one of the world’s BEST doctors and I will do fantastic with my next round of treatment scheduled for September 29th until I need the transplant. (doubtful) . So please no one worry. I’m done worrying. I’m done crying. I will spend the next month getting prepared for my next fight. I will #ArmorUp for LIFE and I will win. It’s just that simple. Sometimes it’s just not good to look THAT far down the road and ask so many damn questions. Sometimes being clueless and just fighting hard is all that is needed to win this. Sometimes for this journalist… knowing LESS is MORE. Yes.. i said it…
Thanks for the cheers, prayers, love, support, gifts, donations, fundraisers… we simply could not do this without every one of you.
I can tell you one thing… something terrible may have entered our lives but with it came so so many ANGELS…. and I have been amazed and inspired at all the good this world truly has to offer.
Sorry for the long long post.. it was an update so many of you have texted and PM me on FB for and it was simply too much to answer at the time.
Please.. #ArmorUp for LIFE #GetFit2Fight and #GetSwabbedToSaveALife
No back to snuggling with my little nugget…