While it is certainly not easy to be stuck in the hospital for a month, it is also hard on those who are at home without me. Specifically my wife and daughter. My wife has to watch our daughter all the time, try and help me and run the business affairs of our household. Our daughter is young, misses me and does not understand why I am not at home. For my wife, that is a lot to be hit with at once. She has done a remarkable job.
To help her, the Lake Highlands Early Childhood PTA and our church’s playgroup have really stepped up: making meals for her and volunteering to watch our daughter, so Sarah can get things done. It is really amazing how many people are out there sincerely wanting to help my family. I am so grateful to you all.
Okay there have been some questions about exactly what I have. I will do my best to explain it. I am quite dense on cancer and leukemia. Until Friday, April 1st I did not know that leukemia was cancer of the blood!
Okay here goes on what I have (as far as what that means I would check the links from an earlier post):
I have leukemia.
Specifically acute leukemia, not chronic leukemia.
Of the two types of acute leukemia, I have acute myeloid leukemia (AML), rather than acute lymphocytic leukemia (ALL).
There are eight classifications of AML I have: “AML M3 ? Promyelocytic” which is also frequently stated as: “Acute Promyelocytic Leukemia” or just APL.
Hope that is somewhat clearer than mud.
I got the most wonderful surprise this morning when Sarah brought me Paciugo. Yummy!
When I first got here I decided I needed to remain positive. As a part of that, I requested comedy DVDs from friends and family. Now the occasionally comedy is alright, but that is not really my style. So I just had to ask Sarah to bring me some movies more to my liking:
Ah, much better. I guess I am positive if I am watching my kind of movies.
For all of you commenting on my bowel movement remark/entry. Yes, I am regular. Oh and on a related note they are now measuring my urine output. Oh bother.
I have not worn shoes, pants, a shirt or even underpants since Friday!
Everyday it is hospital gown, brown no-slip socks and a ball cap. Hooboy!
I woke up this morning to lab services taking my blood at 6:00 AM. That is pretty normal. But this morning they had to stick me three times to get it right. It happens I guess after you have been stuck 900 times in the past seven days. So I got up to put in my contacts and wash-up, and I noticed in the mirror my face is wider. What the? Oh yeah. Steroids. I am taking steroids to counter the effects of the ATRA. Yuck. So with this happy thought I stumble back to bed. Why do I stumble? I have swollen ankles from all the fluids off the IV drips. Meh.
So I talk to my doctors as I do most mornings. Found out I was wrong about the first chemotherapy round. It is actually four doses over eight days. So for this round, we are finished on Monday. Then the fight is on! Out with the mutated cell production in with the new! Then three more rounds of chemotherapy later on. Long road ahead. As for the steroid changes, those should not be permanent. They gave me a diaretic today to start peeing off the fluid retention. So all gets better or right eventually.
Good visit from Sarah today. She has been here for both chemotherapy sessions. It puts my mind at ease. It would be easy to get a little freaked when you know something that strong, that toxic is being dumped in your body.
In a typical day right now (it is the end of day six in the hospital) I:
– Wake up
– Get vitals taken
– Pray, meditate, look out the window
– Get visits and check-ups from doctor team
– Get breakfast (always has scrambled eggs) and morning meds.
– Watch movie, listen to mp3s, check email, read
– Get lunch (always has macaroni and cheese)
– Take shower
– Walk floor without IV pole connected
– Get IV back in
– Get chemotherapy if an odd number day
– Receive visitors
– Eat dinner (usually has macaroni and cheese)
– Get meds
– Walk floor with IV pole
– Chat online, watch movie, play mp3s
– Go to bed
In some ways it is not bad having some down time in life, and having people wait on you. I will probably change my tune in six more days!
Throughout the day I get checked on by doctors (four on my team), nurses and technicians for vitals and miscellanea. The most common question I get asked? “Did you have a bowel movement today?”
Before I got here, I knew nothing of PICC Lines. But here you go. More Info from Trey. Thanks again Trey!
To everyone who has added me to a prayer list, prayed for me, visited, helped my family or held a good thought for us. It is amazing. I do not understand the power of prayer but I know it exists. I have confidence that you all have helped me immensely. I really feel I can beat this.
I cannot thank you enough. If you have been in this kind of situation, you know it means a lot. If not, you cannot imagine how wonderful it is to hear you are being prayed for or thought of at a time like this!
Much love and thanks to all.
So, until I got cancer I never really thought much about chemotherapy or radiation. I actually thought chemotherapy was medical radiation. Which it is, sort of. Still I thought either way, the patient went and got radiated periodically by a big machine. I certainly did not think chemotherapy was an administered drug!
Well over the last few days I have learned this: the drug I am using for chemotherapy is “idarubicin”. It was given to me today in my new Power PICC Line (which is way better than an IV). It was a slow injection into the PICC line rather a drip. It was done by the nurse. In preparation for handling and administering the drug she had to wear a full plastic coverall and special gloves. Wow. Strong stuff.
Well three more session. One every other day, so that will take me to April 11th. I guess that will be followed with those pesky bone marrow biopsies. Dang!
So, first session and I am still doing well here, just doing my part, staying positive and following instructions.
My brother-in-law, Trey, found some great links on what I am going through. Here is what he put together:
Understanding AML “This has a good page with the types of AML, and the FAB classification table” For example, it names the M3 type.
General information about AML (Acute Myeloid Leukemia) from cancer.gov (For patients)
Acute Myeloid Leukemia from cancer.gov (For Health Professionals)
Treatment of Acute Promyelocytic (M3) Leukemia (AML)
AP John institute for cancer research, AML Information
There are TONs more, but they all pretty much say the same things. The most important one to me was the Treatment of Acute Promy… page because it states a 70-90% cure rate for the all-trans retinoic acid (vitamin a relative) plus chemo treatment.
Thanks Trey! That treatment plan metioned is essentially the plan I will start going through later this morning.
Turns out I have Leukemia. If there is ever good news about cancer or Leukemia it is when the news is that you have the variety that is curable. Which I do. I have acute Leukemia, and the treatment plan they are going to use for me has a 90% success rate.
So this weekend I received numerous units of blood and today I actually feel “right”. Unfortunately things are going to get worse before they get better. This week I start chemotherapy, not sure about all the side effects from that, but hair loss seems inevitable. Oh well, small price. Also I will be in the hospital for at least a month. I miss my daughter, my home, and my things, all of it really. Well it will all be there for me in time.
I have a long road to go with this. So if you are religious or spiritual, I love hearing that I am in your prayers or on a prayer list. I believe in the power of prayer. If you are not religious or spiritual then perhaps you can hold a good thought for me. I love hearing that too. I am looking for all the help and positive vibes I can get right now.
Advice: If you ever have to get a “bone marrow biopsy” take the morphine they offer for pain. My best guess is I got about 15 more of those go over the next two years. Ouch!