Do Something Nice DAILY

Since my birthday, I have been on this kick to do something nice everyday.  Kinda like paying it forward.
Today's DAILY niceness: wrote an email to the restaurant I had lunch at complimenting the workers and great customer service. 

Remission!

I haven't posted in over a month, sorry about that!
The long and short of it:  I am in remission!  Yay!  I started maintenance therapy, which is a daily pill regimen.  I am taking more ATRA (tretinoin), methotrexate, folic acid, and 6-mcr (did I abbreviate that right?) for one year. 
I have spent this entire month in physical therapy, because my right hip has had shooting pains on and off since summer.  Its so much better from physical therapy.  Anyone who tells you physical therapy is a joke didn't take it seriously and doesn't know what they are talking about. 

Okay!  That's about it.  I am hoping to remember to continue on this blog, but I will start integrating other parts of my life, as well.  Trying to get to normal is my next adventure or chapter in this book...

L

4th Bone Marrow Biopsy Done! Hickman removed!

Lots of updates for you today!
Last week, my Hickman catheter site was bleeding a bit.  After a trip to the cancer clinic at Rush in Chicago, my doctor determined it needed to come out.  Don't worry, the culture sample they took from the wound came out negative, so it was most likely just inflamed and irritated.  That makes sense, I clean it and have to change the dressing at least once a week, sometimes more if the dressing starts to come off.
So, this Tuesday, my catheter was removed and now I have a big bandage over the hole (yes, there is a hole in my chest where the tube came out) and some stiches where they opened me up to cut out the catheter.  Its a bit sore, but its a great thing to not need this tube anymore!!  I was awake for the entire procedure.  The surgeon gave me a few shots of local anesthesia, and that burned a bit.  They cleaned the area, and he made an incision about an inch above the exit site.  Then, he removed the catheter from the vein and cut away the tissue that was growing/healing/attached to the tube, cut the tube out, and removed the remaining part from the hole in my chest.  Then, he sewed me up, applied some glue, and bandaged me up.  I have to keep the bandage on for one week, then I can take it off and just put a regular Band-Aid on until the hole heals properly.  Amazing!  I'm a bit sore, but its awesome!
Yesterday, however, was my monthly check up at the clinic.  Since I have completed the recommended course of chemotherapy, I had my 4th bone marrow biopsy yesterday.  I see doc again in 1 1/2 weeks to discuss the results, and hopefully start maintenance therapy.  I felt a bit woozy after the biopsy, but I think I will write about that in another post, I am sure there are people that want to know a bit more what happens (from the patients view) with a bone marrow biopsy.  Regardless, I was a bit sore when the local wore off, and my brain was a bit fuzzy, they did numb me up pretty good.  So, my parents took me home yesterday, got me some fried chicken and I slept most of the night.
I am so excited, praying I can soon resume my normal life, if I remember what normal was 9 months ago, when this all started.  I am anxious, but also worried.  I was prescribed physical therapy for my hip pain yesterday, so today I have to call around and get an appointment for an evaluation from a physical therapist in my area.  The hip pain has been around since my second to last chemo cycle, around August.  Its only one hip, and I can't tell if its a nerve, muscle, or joint pain.  Its very odd.  It doesn't hurt to walk, though, and that's about the extent of exercise I am currently allowed.  Under no circumstances am I to go jogging or do anything like aerobics or Zumba (oh I love zumba) until I see the physical therapist.  My doctors nurse told me yesterday that even though my numbers look good, I have been neutropenic on and off since February.  I have been restricted in exercise and mostly sleeping and tired this entire time, so my body will take time to recover and it will be a process.  I am not looking forward to this, but I am looking forward to healing even more.

Have a great day,
L

How to live forever

I watched a documentary yesterday called "How To Live Forever."  I'm someone who does not want to die, so this peaked my interest.  It made me think, for sure. 
Now, I'm on the road to getting healthy, but in February and March, I prayed multiple times a day, asking God to keep me on this Earth a little longer.  I was scared.  I still am scared.  Scared of being ill, scared of living, and even scared of dying.
Its been about 24 hours since I saw How to Live Forever, and I am still thinking about it.  They don't have a clear solution to live forever (obviously), but it looks at modern technology, interviews with some of the oldest people and communities in the world, and makes you think.  Do I really want to live forever?  Seeing how some people age, or more like how they begin to deteriorate (for lack of a better word), I see how someone can get tired with living.  I also see how someone 100 years old can still be working and drinking and smoking. 
What I took away from this documentary is that if you let your body and mind get sedentary, you will age faster (or die younger).  The trick is to keep your mind and body active.  Eating healthy and having healthy genes also help, but, hey, I already have a life threatening cancer...lets focus on what I can change!

No, I don't want to live forever.  I do, want to grow old, though.  I think I have determined I am more scared of the unknown, what happens after you die, not of death itself.  I wish we could be guaranteed our souls move on to another place or dimension, but its hard to know what to believe, with so many different religions telling us different things. I know one thing.  Each one of us will die.  If we all could live forever, there would be a population issue.  I enjoyed this thought provoking look and really appreciated the documentary in a way I probably wouldn't have before my diagnosis.

I watched this online as an Amazon Prime member for free.  I don't know if its available on Netflix, but completely worth renting!



 

On a brighter note, I think I will work on my obituary (just in case) this week.  Not trying to be morbid, maybe a bit vain. 
Have a happy Sunday,
L

Chemo Helpers

My body has gone awry from the entire experience of cancer, including each chemo treatment.  I just wanted to share a few things I found helpful or am trying for anyone going through similar problems.

*Kindly remember, I am not a doctor and I am not giving medical advice. 

• Yogurt has become my friend.  It kinda already was, but now I try to remember to have yogurt everyday.  Read on some of the benefits to the cancer patient here: AboutYogurt.com - National Yogurt Association
• Keep a routine.  My morning routine includes brushing my teeth, eating breakfast and taking my pills.  Then I rest and watch tv/check emails.  After that, I take a shower (and there is a whole routine for that).  It makes the day go faster, and it helps me maintain some normalcy. Routines help keep us from forgetting things, like pills, dressing changes, etc.  
• Soft foods are great.  I don't know if all cancers have to look out for mouth sores, but with APL, the doctors were always checking.  When my counts are down, I am prone to more mouth sores.  To avoid this issue, we keep soft foods stocked always.  Pudding cups, jello, liver sausage, soft bread, soft snack cakes, yogurt, mac and cheese, etc.  Most of these also help with nausea.
• Know where your anti nausea pills are at all times.  Whether you take Compazine, Zofran, or another med, you need to know where there are because nausea will strike at any time.  Its good to have the other adults in the house know where they are, too, just in case you don't feel well enough to get up the stairs or walk down the hall.
• Lotions, Lotions, Lotions.  Yes, I have an arsenal of lotions.  I have to integrate them into my routine.  Chapped/dry or peeling skin, try Eucerin Aquaphor.  Lips, try Neosporin overnight lip cream.  Down there issues, take home the cream from the hospital.  Peeling feet and hands (PPE) try Eucerin Aquaphor (the thick one).
• Staying hydrated- unless you are on liquid restrictions, they usually want you to drink a lot.  If you like soda (pop), but are trying to cut down, try mixing Pellegrino sparkling mineral water with fruit juice or Gatorade.  I like orange gatorade mixed with Pellegrino myself.
• Rest when you are tired.  There have been days I slept 10 hours straight.  Hey, you are sick, and this is how your body heals.
• Walking is important.  I'm finding out right now stretching is just as important.  Be careful if you have a central line, like I do.  Amazon Prime has a few beginner yoga videos you can stream from your computer or tablet and try to keep your muscles and joints from turning to mush.  Don't overdo it, though.  Talk to your doctor about exercise, too.
• Don't be afraid to wear a mask in public if your counts are lower than normal.  I wear a mask everywhere (when my counts are high enough to leave the house).  I go to the grocery store, bank, target, walgreens, gas station...all in my mask and I don't care.  Actually, at first I felt funny, and then I was sad, because people stayed away from me. Then I realized the benefit--- people get out of my way and are extra nice!!  There is no shame in protecting yourself from potential germs that could make your warrior training even harder than it already is!  They sell masks at Walgreens and pharmacies, but the hospital will give you a few boxes if you ask when you are discharged. 
• Sunblock if you go outside.  Everyone's chemo is different.  Chemo is tailored to your diagnosis, age, weight, doctor's recommendations, etc.  However, all chemo makes your skin sensitive!  Don't chance it!
• Lysol or Clorox sani wipes in every bathroom you use!  Every morning, I sani wipe my bathroom sink, toilet, and light switches.  Hey, your counts go up and down, and again, why make things worse?  Besides, its good to be proactive.
• BOOST or ENSURE drinks are great if you don't have an appetite, losing weight, sore throat, or not hungry.  They come in all different flavors, I like strawberry (tastes like a strawberry shake) and chocolate.  They taste best VERY cold.  Add some ice cubes or put in the freezer for 20 minutes before drinking. 
• Sour candies can help when you can't taste.  My first round of chemo everything tasted like metal, even my own saliva in my mouth.  The other rounds of chemo, it felt like my taste buds were asleep, nothing I ate had much flavor.  But, sour patch kids and lemonheads candies (to me) woke up my sweet and sour taste spots on my tongue.  I think it helped me. 
• Prayer helps.  There was an old man at chemo that would get all crabby when someone would say they are praying for another.  Even if you aren't spiritual or religious, people will tell you they are praying for you or they keep you in their prayers.  I've gotten cards from distant relatives who have had mass for me at their church.  Listen:  knowing people want to pray for you means you are important to them.  Its something they can do to help you, its a nice gesture, and it doesn't hurt.  Heck, I believe it really helped me.  I welcome all prayers and nice thoughts in my recovery.  I feel honored, actually, that I mean that much to someone for them to pray for me.  God works in mysterious ways.  Besides, if someone tells you they are praying for you, how hard is it to just say, "Thank you."??
• Keep a notebook or calendar marked with all appointments and how you felt that day.  Doctors like to know gross stuff, like the last time you went potty, how it looked, did it hurt, etc. 
• Keep hand sanitizer and use it.  Even if you aren't scared of germs, you will be surprised at how suddenly you become aware of what you touch before you touch your food/face/rub your eyes.
• Get the biggest pill case you can find.  Everyone who has cancer takes pills.  My pill case is 7 days, with 4 boxes for each day: breakfast, lunch, dinner, bedtime. 

I hope this helps!
L