Found my Fight

I left you all with a rather despondent Lesley. I won’t say that I have left that disposition far behind, but I have been putting some distance between us. One thing I have learned in therapy is not to be scared of feeling my feelings. That may seem silly, and honestly I didn’t realize I was doing it at all. One phrase my therapist has used with me before is to “ride that wave.” I think that the way I have experienced and dealt with this third diagnosis has been vastly different than the rest. Looking back, I think with Gus’s diagnosis I was working my way towards how I handled this one. This time, I rode the wave.

The Tuesday between the boys’ birthdays I sat in the exam room like I have hundreds of times over the past seven years waiting for bloodwork results. When I saw numbers on the blast count (which indicates leukemia) so many emotions flooded my mind – fear, anger, sadness, and many more. I immediately began to disassociate and get into this other realm of shock and panic – I knew that I would need to be in the hospital both to process and for whatever treatment was necessary at the beginning of the diagnosis. I was reflecting on that week recently and have very little memory of it at all. It is so strange to me that I cannot remember some aspects of an event that should be quite memorable, but I don’t. Why is that? I believe that shock, PTSD, and some of the medications played into this. But I also believe that I was doing something I had avoided before – I let the grief and sadness and fear have their day – their week – their month. I truly let myself feel every one of these emotions and didn’t brush away the dark thoughts. I worked THROUGH them and not AROUND them this time.

I am well aware of the statistics, the risks, and all of the factors stacked against me. It doesn’t look good. But then again, it really didn’t either of the other two times I was diagnosed with cancer. As I took all of these feelings and thoughts to court, I had more evidence of good this time. I had more evidence of horrific diagnoses that have happened to me in the past decade (not just the cancer, but the semi-septic infections and other strangeities) and have turned out okay. I remembered all of my doctors’ smiles and words of “you are our walking miracle,” every time they saw me. All of this helped to bolster me and helped me to find my fight again. I think part of my hesitation to throw on my gloves and declare I am in for the fight is that I don’t have the ability to be ingenuine – I am truthful to a fault. I can’t be all ra-ra #teamlesley because it just isn’t me and I know how touchy this whole process is – I know it can turn south quickly and unexpectedly. And I don’t want to give false impressions of how grave of a situation we face – AML is a mean and sneaky opponent. Either way though, I am NOT at the point of being done – I am NOT ready to stop fighting it – I am NOT ready to stop treatment. So, I’m putting on my gloves and here we go again! [Notice I don’t say “give up” or “quit” or anything close to acknowledging that cancer wins. It CAN’T win – if I die, it will die with me. Cancer patients never “lose their battle with cancer” because cancer is like a parasite. It can’t exist without a host. Patients may decide that they have had enough, treatment may stop working but cancer NEVER wins. Just a little soapbox I thought I’d throw out there]

A lot has happened since I last updated you all. That first round of chemo was rough. I was very weak and it took a while to recover. I have had several weeks of a break from chemo waiting on my counts to come back up – and during that time is when I have found that I am ready to keep fighting again. One especially good thing that happened is that we did my bone marrow biopsy and got back the results that ALL my cancer is gone for now!!! Complete remission!!! That was super encouraging as well as that there was no FLT3 mutation like I had last time AND finding out that all three older boys were matches for me for a transplant. Now, to answer a question that I had myself – if all the cancer is gone do you still need a transplant. Yes. The nature of AML is that it will most definitely come back. My options are to have a transplant or be on chemo indefinitely until it no longer works. Transplant success will be better now rather than waiting a long time – and I am very much a “rip the bandaid off” kind of girl and would rather get it over with than drag it out. Even still, that is a hard decision to make because while we know that the leukemia will come back, we don’t know when, and we know that the transplant increases chances of “things going south” a lot sooner. I don’t want to lose any potential time with my fellas, but at the same time, I want the best chance at years more so transplant it is.

Here is a summary of what is coming up for us. We have scheduled my transplant for 8/22/24. My oldest son, will be my donor. Yes, this is my son I mentioned before who has been in trouble with the law. The irony is not lost on me that I have said “cancer hasn’t killed me but parenting this child might!” and this particular child may actually save my life. God is funny like that. Between now and transplant day my son and I will have plenty of pre-transplant testing on all of our systems to make sure we are both healthy enough for transplant. I would guess my biggest concern is my heart which has had multiple doses of heart toxic chemo. I will check into the hospital on the 16th to begin the chemo I have to have to prepare for the transplant. I am also having total body radiation this time which is something I haven’t done yet. Yay! new experiences!

Quick update on Gus (horrible flow for my writing, I apologize). He is doing great!!!! Last week he started the “Maintenance” phase of treatment which is much easier on him. He has daily meds to take at home but doesn’t have to go back for IV treatment until October. We will go in for periodic count checks and port flushes, but for the most part we are cruising. We will keep doing this phase until he is finished in January of 2026.

So yes, we still have A LOT going on and are still dealing with a lot of heavy, but we are bolstering ourselves for this storm and marching forward. Your prayers have been so helpful and a day doesn’t go by that I don’t hear “so and so told me they are praying for you,” and oftentimes these are people I don’t know. It is humbling. Please continue to pray that my body can handle all that we are throwing at it. Pray that my son’s body checks out okay. Pray that this experience is life changing for him in a good way. My goal is to get old, so in order to do that, I have to get through this transplant. As far as physical needs, we are doing pretty well right now. Gift cards for eating out, gas, and Door Dash are always welcome – we are burning up I-20 between our house and Augusta, my people eat a LOT, and hospital food is not good (I think I may need to bring my own mini fridge and suitcase full of snacks). I will do my best to keep everyone updated – don’t hesitate to text me, I am not the best responder but I love hearing from everyone. I probably won’t write much before I check in the hospital unless something big happens – I am trying to get school planning done so that they can keep going while I’m inpatient. I am also trying to plan for the other things happening while we know I’ll be out of commission. Thank you all so much for all the support and love. We truly are humbled.

The only way out is through!

Lesley