Living Normally with a Difficult Cancer

 I am so tired .  I have had a 3 hour nap, but yesterday started at rising at 5:00 am, leaving at 6:00 am for UAB, and spending 6 hours seeing 4 oncologist while they did multiple imaging studies on my left axilla which has been very swollen for the past month.  I am an interesting case for these doctors because they have to determine what to do.  Because I have bone marrow cancer, Myelofibrosis, both rare and aggressive, something as seemingly simple as taking punch biopsies could cause me to "bleed out" and end up in emergency surgery.  Whew!  On the other hand, they need the biopsies to know what to do.  I know all you ladies, and a few men, have struggled with various types of breast cancer.  One of my beloved Sister in law's had inflammatory breast cancer six years ago, but she is a fighter and is still living, praise God.  You who know, know the difficulty of inflammatory breast cancer, and my sister is a miracle.  Every day with h...

 This is beautiful Lenore.  Look at her eyes!  They are beguiling.   This is another day I have been given, and I sing praises for that.  It got up to 96 degrees today so I didn't venture outdoors.   Right now I am in bed with my beautiful baby (well she isn't a year old yet!) Lenore hugging me.  Jay is sound asleep and peacefully sleeping.   Sometimes he has nightmares.  I don't know if I should include such personal info or not, but I guess it is okay.  When he does I pat his shoulder and speak soothingly to him until he rests more easily.  I don't have nightmares that I can remember,  but I used to as a child and young woman.  Generally I would pray when I awakened and that helped.  My parents were both very sweet when I had nightmares as a child, and very soothing.   They never made me feel foolish.  I know there is a tendency to say "get over it" but how can the unconscious mind get ...

 Today is good!  I had some rough hours there Saturday night, but I got through them. I have made coffee, visited with Jay and talked about small boats on "the Big Ditch" (I don't recommend them unless you know what you are doing.). I am talking about canoes, kayaks and those small boats you can buy at Sam's.  Avoid the Tombibgee unless you are skilled. even if you are skilled, drunk bullies in ski boats will laughingly knock over your canoe and there you are, in the middle of the Tombibgee, hanging on.  Praise God for cell phones and being able to contact the Corp of Engineers for help.  5 minutes, or less, and there they are, our heroes!  The Corp didn't like to hear about the drunk bully knocking over our canoe, and the drunk bully was arrested.  I guess he was too drunk to race off somewhere, or else he was enjoying Watching the flailing bodies too much to leave the scene. This happened about 3 years ago but the memory of it is vivid.  Anyway,...

 Today I have had less pain than usual and that's a real blessing.  I hate pain!  I think everyone hates pain!  We all have to endure it at various levels, unfortunately, because that's part of being human.  Having lupus brought lots of joint pain for years, but I have been stable with that disease for a number of years. Unfortunately, CIDP, chronic inflammatory demyelating polyneuropathy, presented it's ugly head in 2003 and that causes a lot of pain, in my case, in my legs.  I am stable with that to disease in that I am not getting worse, and I am grateful for that.  But then a mild cancer reared it's ugly Head 2 or 3 years ago and this past winter the mild cancer transformed to an aggressive and painful cancer, Myelofibrosis.  I am not grateful for that.  I don't know if I am bitter or not, but I am residing in a mental state where that cancer isn't sometimes is terribly painful and sometimes I don't feel such terrible pain, like today, bu...

 Today has been fruitful!  I made a pot of coffee and drank a couple cups with Jay, which is about my favorite thing in the world to do.  He worries a lot about me,of course, and I wish there was something I could do to alleviate that, but there isn't.  If you love someone, you worry about them   Some people can worry about others and somehow contain it, as though their life is like St Teresa if Avila's Interior Castle, and they can place that worry in a room in the Interior Castle and close the door on it awhile.  I can't do that, and I never could.  The worry is like a little beast on my shoulder, not an unkind beast but a beast nonetheless, who pats on my shoulder periodically lest I forget to worry!  I think Jay is like that, I sense that about him. In the meantime, the wee in beast doesn't tire of reminding me to worry!  I used to spend at least an hour nightly praying for the well being and safety of my nieces and nephews in particular,...

I should know more of what's planned for my underarm lymph nodes on Monday or Tuesday.  If you are looking at the photo, do realize my internist and my oncologist have both seen it and are in communication with each other, so it isn't being ignored.  When I first saw it , I thought, well darn it!

 This is a photo of my underarm with the rather massive swelling.  It isn't just a cyst (that is wishful thinking) evidently because of my rare cancer.  It is rare so I guess it can do anything!!!  I will probably have to see my oncologist to have it biopsied, but I have an appointment in two weeks anyway.  I took bactrim, and old antibiotic, but it just got bigger and my white cell count increased, but my Myelofibrosis can cause that.  We will see. I wish it could   just be "cut out" but evidently you have to be a little more careful with cancer.  As this is my diary/blog I will obviously update when I know something!

 Happy 4th of July!  Jay and I went to the laundrymat which is a couple blocks away to dry clothing.  There was a nice lady there with her two teenage sons.  She says all she does is work and sleep, and take care of 4 kids and her inlaws.  That's a whole lotta work in my book.  I surely couldn't do it.  When her boys were taking out her clean laundry, she told one of them, "put that down!  Teamwork!  Your brother has to help!" So that tells you all to need to know.  She's a good Mom.  Next time I go I will carry a thermos of coffee.  Laundrymat folks always love coffee and the conversation that goes along with it!  But we were gone about 45 minutes and now I am just worn out.  You wouldn't think just sitting there and chatting would wear you out, but it does in my case. It's nice to have the laundry done, especially with our broken dryer!  Of course it is over 10 years old, maybe closer to 15.

 I will try to write daily.  I suppose this is a sort of a diary.  Today I saw my regular physician for my swollen left underarm.  I noticed it about 2 weeks ago, and took antibiotics for 2 weeks but they didn't help.  My internist and my oncologist will have to work together on this.  It could be a lymph node cancer, which although not common with Myelofibrosis, could still occur.  Myelofibrosis is a bone marrow cancer where your  bone marrow turns to scar tissue.  There is only one cure, a bone marrow/stem cell transplant, and I am not a candidate for that.  I can't imagine hearing anything from my doctors until this holiday weekend has run its course.  In the midst of this is everyday life and the problems everyday life brings you.  Today our dryer went kaput and this is the July 4th weekend so getting a new one installed won't happen this weekend.  I did wash some of my  summer pull on shifts as they will dry...