April 14, 2020 · from Lesley’s original CaringBridge journal
Well, Easter Sunday was wonderful. And Monday was the Mondayest Monday. I struggled a bit more yesterday. It was a super busy day – so many doctors, residents, fellows, nurses, techs, chaplains, physical therapy, psychology, and more and more people came to my room. Before I knew it it was nightime. There were also things that had to be done at home. We had just finished our regular break week with school so the boys were having to get started back up and I had none of us prepared for how to handle this. Also, I had planned on getting my monthly payroll taxes, bills, etc. for the business done on Thursday afternoon – instead I was rushed to the hospital. So I was having to talk Marsh through all of those jobs on the phone, and bless his heart, the computer is not his strong suit! So between phone calls, texts, emails, people coming in my room….I was worn slap out as we like to say in the South. And I don’t know about ya’ll but when I am worn out, that is when I tend to be more weepy and have a harder time keeping my thoughts in check. That is what happened yesterday.
I felt truly as if the enemy was whispering in my ear all day long, constantly reminding me of the unknowns, the what-ifs, any bad possibilities that lie out there. I felt attacked. I have had such a peace since I have been here and I was mad that I felt like I was losing it yesterday. It all started from just a couple of words too. When the doctors came in to chat it up with me we discussed my numbers. Now this whole blood cancer thing is a totally different animal than the tumor cancer thing so it seems. The nerd in me is liking learning all these new things, though I do wish it were slightly less hands on! But boy do I like numbers! My children don’t share my enthusiasm as much but that’s another story. Numbers are concrete, they don’t lie, but these numbers don’t tell the whole story and that is hard for me. There are so many different factors they are monitoring with me with my blood counts. The biggest one I guess is my white count. Thursday they explained it like this – in February when I came for my regular oncology check up my bloodwork was “perfect” and my white count was 4, they start to look into things a bit more when it gets over 10. Mine was 170 when they admitted me. The goal for my white count is to get as close to zero as we can – the point is to kill all the white cells, good and bad, and then we will do the transplant. My white count has dropped all the way down to 0.2 as of this morning (Tuesday). When we were talking yesterday it was around 4. I asked the doctor about this and he said that yes, the numbers were doing what we expect them to and this looks like a good response to treatment but the numbers don’t tell the whole story so it doesn’t necessarily mean that I am going into remission. What? Numbers lying? May it never be! Yep folks, that was what got to me yesterday. The fear creeped up, the anxiety arose. We must wait…. and I am still at the little kid stage of not liking to wait.
[interrupt transcript: I am typing this right after/during chemo so I apologize for the disjointedness, but I really wanted to get everyone updated…just bear with me!]
Here is the rundown of what I know and where we are right now:
My numbers are looking great. On paper this is exactly what they want to see. There are some factors that will jump around and I am having to get blood and different blood products to support my body during this process. That doesn’t seem to be a huge deal. I have had to have several units of platelets and another blood product to help my clotting factors. I also had to have a unit of good ‘ol O+ this morning just for fun I guess 😉 I have not felt that bad really. Being inpatient for chemo is quite different. I am on fluids 24/7 so I am staying hydrated which does wonders for nausea. They stay on top of my medicines very well. I am taking meds to help side effects of chemo, antibiotics and anti-fungal medications because I have no immune system right now to fight off anything. I have bouts of being pretty tired but that’s it. I am sure there is more fun to come, I am not naive. Tonight is my last chemo treatment – it is a five day regimen of high dose chemo. Then we wait….at day 14 they will repeat the bone marrow biopsy to see if/how successful the chemo was at killing the cancer cells. In the mean time my body can/may produce more white cells and we will see that number go up but we have no way of knowing if those are cancerous cells or healthy cells being made without the biopsy. After that comes the transplant stage and I still don’t have all the details on that yet. I am trying to focus on one step at a time and not get ahead of myself and try to figure it all out right now like I like to do. This is where the rubber is meeting the road for me – it is so hard to continue to trust and hope with all these unknowns and waiting but this is my charge right now.
A friend sent a sweet card today with some verses printed out – one of them is Romans 12:12 “Rejoice in hope be patient in tribulation, be constant in prayer.” This is what I am trying to do and I’ll ask that you join me in this quest. I have no doubt that God has a supreme purpose for me being here right now and I am wanting to submit to that purpose and be used for His glory. I have no idea what all that is supposed to look like, but here I go. Here are the specific things we can be praying for right now:
- that my white count will get all the way to zero
- that my other counts will remain stable
- that I do not get a secondary illness while my immune system is wiped out
- that every bad cancer cell is killed
- that we find a stem cell/bone marrow match for transplant
- that the peace I have had sustains and the enemy is subdued in trying to steal my joy and peace
- that all my guys at home stay well, safe, and encouraged
Thank you for every prayer said, text sent, everything. Once again I am so overwhelmed at the love and support poured out on my family. I am loved way more than I deserve.
Lesley
Comments from CaringBridge
Gina Shealy — 4/15/20
We are praying for you, sweet Leslie! For you and all of your family .. that you will see the mighty hand of the Lord work and move in a miraculous way.
Elizabeth Messer — 4/15/20
Hi Leslie. My friend Lanell Saeger is a friend of your mom. Lanell just called to ask us to pray for you because we have walked this path. Our youngest daughter was diagnoised with PH+ ALL on Jan 25 2014 at age 32. She did very well. It is not anybodies idea of fun or normal but you CAN get through this. May I give you a few words. Have a good group of support that PRAYS. Prayer is amazing! Have a positive outlook. Don’t ever let yourself doubt. Again, you CAN/WILL get threw this! Take one day at the time. There is no point in crossing bridges you haven’t come to and may never have to cross. Join this web site: facebook.com/groups/AdultsWithAcuteLeukemia/ — It is for people that have ALL and their care givers. It is very helpful to see how others have delt with what you are going threw. Check the file pages for a lot of help. Now be aware that on that sight you will see people that don’t make it but you will see many more that do. I hate for you to see that part. They get to know each other and they check on each other. They report on their boemarrow test and sometime they lose one and they care that their friend was healed in a different way then what we hope. They will answer questions that pop up for you. They are almost all ALL related. Some are PH+ and some PH-. Thankfully they are able to treat both now. Had my daughter been diagnoised 3-5 years earlier they would not have been able to treat her. If I can be of any help to you or your mom (or family) please reach out. I care and I will be praying. I understand that you are being treated in Augusta. My son lives in Evens. Take care and believe that this time next year you will be well into the rest of your life!
Patty Baugh — 4/15/20
Lesley, I am lifting you up in prayer! Your strength, courage and composure absolutely amazes me. My admiration for your faith is great and I hope and pray that this faith, the love of your family and friends, plus the skill of your health care team, will make you victorious in this latest battle. Be strong and know you are loved by many.
Karen (Regan McShanes mom) Pardoe — 4/15/20
Praying for God to put a hedge around you as you fight, and that the His strength and power be yours as your body responds to this treatment. May you and your family continue to find peace in Him and rejoice in His presence ever with you all
Traci Lewis — 4/15/20
We are praying for you and your boys.
Denise Nielsen — 4/15/20
We are all praying for your strength and all of God’s light and love to be with you and your boys each day. You got this!
Ashley Woods — 4/15/20
Continued prayers for you and your guys, Lesley.
Nancy Sullivan — 4/15/20
Prayers lifted up for you and your family!
Theresa Morgan — 4/15/20
Praying for a good day. Stay strong and keep your faith. God is with you. Faith over fear 🙏🙏💕
Debbie Butts — 4/15/20
Lesley praying for you and your family. I will be glad to help Marsh with any of his reports.
Becky Holton — 4/15/20
Sending many prayers for you and your boys!
alan motter — 4/14/20
Praying for you daily and your family.
Kim Lathrup-Martin — 4/14/20
Kim. Kelsey and Marli thinking of and praying for you and your guys. I know Wynell Martin is watching over you now. Keep up the fight. You are special and will conquer this. Keep on keeping on!!!
Gerry Brooks — 4/14/20
He will give you all the Love and guidance you and your family will need, He will not leave your side or heart. Dick and I continue to pray for you, your family and the entire medical staff that is helping you through your illness. Sending prayers of healing.
Patti Garretson — 4/14/20
I have truly been pressed in my spirit to pray for you, Marsh, your 4 sons, rest of your family, all the ones treating you there. In Augusta today.
Cancermamma 