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!
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.
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.
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.
Before I got here, I knew nothing of PICC Lines. But here you go. More Info from Trey. Thanks again Trey!
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?”
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.
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 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.
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.
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.
So far, I have had a great day on the oncology floor today. Here’s why:
1. I got some pants to wear under my gown. I have not worn pants since April 1st. Woohoo! They call these pants “basements”.
2. I got a breathing mask and walked around outside. I have not been outside since April 1st either. Nice day out there albeit windy. Beautiful all the same.
3. Another AML patient visited me today. They are much further along in their journey and their cancer is going into remission. They brought me a lot of hope.
Today has been awesome again. I really feel quite good. About 1-1/2 hours everyday I am free of my IV pole. I like to walk around then, bother the nurses station for socks and the like, sit in chairs, etc. The best though is getting a mask and going outside. Today the sun is out and there is a nice breeze. It was awesome. My wife brought the digital camera up so while I was out I took pictures of textures to use in web design stuff.
Also with the digital camera we took some pictures of my room…and me and my fine daily fashion 🙂
Yesterday my daughter said, “Hi Daddy”, then asked, “In a crib Daddy?” Yeah, it’s like that 🙂
Okay this ol’ girl is attached to me 22-1/2 hours a day via my PICC Line. I figure if I am going to hang with anything that damn much, it should have a name. Can you help me name her?
Just put any suggestions in the comments. Thanks!
Through out my hospital stay I have been blessed with a number of great visitors. Soon this has to slow down if not halt altogether. Two reasons:
1) Today I tested positive for “Clostridium Difficile” or “C-Diff”. Basically this arises after taking antibiotics for a long time thus killing not only bad bacteria but good bacteria too. The solution is that they have changed my antibiotics. However, I am now a risk to visitors and the staff. So the staff has to gown up to work with me and visitors are not allowed physical contact. No hugs, no handshakes. Sigh.
2) My white blood cell counts are supposed to drop soon. In fact, they should drop to zero. This will leave me with basically no immune system. Thus I am at high risk of getting infections from visitors.
So visitors are not good for me and I am not good for them. Not sure how long either of these conditions will persist. We shall see.
Basically, C-Diff for me means I have to run to the bathroom at any moment. We have all been there. It is not fun, but not that bad. It is a little worse when it occurs in your sleep. Still manageable though.
I have to tell you though, running to the bathroom from a dead sleep with an IV pole in tow is a whole new deal!
This morning my friend B_2 in Canada told me about Terry Fox. In short basically a Canadian hero and champion for cancer research. Here is some good information on Terry Fox:
About Terry Fox
The Terry Fox Foundation
Well as expected and desired my white blood cell counts are dropping. To give you some perspective, if I were healthy, my white blood cell count would be between 5 and 10. Yesterday it was 4. Today it is 1.9.
Yesterday I still felt really good (C-Diff aside). Today I am really, really tired.
If you know me or have been reading this blog, you know I was excited as I could be about attending Burning Man this year. Unfortunately, my recovery plan for leukemia is not going to accommodate going to Burning Man this year and perhaps not next year either.
A major part of my treatment is taking ATRA (Retin-A) for I believe the next two years. Sun exposure and Retin-A do not mix. Thus, a week of extreme desert camping is not in my best interest.
So, I now have two tickets I can sell. If interested contact me.
I am naming her Ally. To me Ally sounds nurturing. When I go to sleep I feel good saying, “Good night Ally.” Like I am going to be taken care of.
Mind you I like the Laura 5000 picture as much as the next guy. But it does not have that same nurturing effect.