Acceptance

First, a close friend of mine is going through a medical crisis.  If you pray or could just keep her in your thoughts while we figure out what is wrong, I would appreciate it.  She is a remarkable woman <3.

It has been a challenging week.  My current chemo plan is 1 time per week for 2 weeks and then 2-3 weeks off, for a total of 6 rounds.  Then we will reevaluate according to labs and my progress.  If I start developing issues or the doctor ends up with concerns about the current treatment approach, then we will approach it at the time.  This was my first month under this extended treatment plan and it is kicking my ass.  For the most part, I am extremely exhausted.  I have been having troubles with anemia since March of this year during that hospitalization but now we are monitoring it more closely.  I am having the basic side effects of nausea and nausea too.  I feel out of it or confused sometimes but it isn’t too bad so far.

My biggest complaint aside from being diagnosed in the first place is the pain.  I feel like someone is driving a semi-truck over my entire body repeatedly.  I am so sore and I do have medication but when you are already confused, the last thing you need in your system is a narcotic.  And because of what happened in March and April, as well as my current condition, there are certain medications that my doctor has blacklisted.  Thankfully, I am so exhausted that sometimes I just sleep through it.  If its there when I wake up but not much of a bother while I am asleep.  My hair is starting to thin out and fall out a little bit but it is not of great concern.  If I start to get bald spots then that is when I will worry.

Emotionally, I am doing well but have my moments.  A good friend of mine reached out to me about 2 weeks ago about letting some people in about what I am currently going through.  I feel like I may have said something that came across as if I did not appreciate her or her support.  Without mentioning names, because I know she will know as she reads this, I am truly sorry if I did come across cold.  The truth is, I value you and our friendship, and always will.  I really appreciate those who have reached out to me.  I have not announced this to all friends and family yet.  I have kept a low profile and have been taking care of myself, as well as, all my other responsibilities.  I am a fulltime student, mother, wife, etc.  Every moment that I am not asleep, studying, or working; I am spending time with immediate family.  I am trying to not let this affect Bee anymore than what I am sure she can already sense.  I have been focusing on me too. I am still working overnights but am no longer working fulltime hours.  This has been helping out some.

Enough about the “c” word. 

Bee is doing very well.  We’ve reached a couple of milestones this past month.  She is now trying to crawl. can sit up on her own, is teething, is able to grasp things well, thinks her feet are delicious, and is about to celebrate her first Halloween.  I am sure I am forgetting a couple of things but these ones are fresh on my mind.  I don’t know why I have been worried about her delay in development as much as I have.  Developmental delays are not uncommon in babies with CF.  There are less concerns than the last time we met with her “medical team” so that is awesome, positive, and a relief.  Kbug is doing wonderful.  She loves school and has made great improvements. 

In counseling, we have been discussing the big #1 birthday and how to celebrate.  It is very important to me that we include Madalyn in some way.  It has been suggested that we receive some sort of closure regarding out loss such as a small get together with family and friends, or just the immediate family, celebrating Madalyn.  Part of our discussion has been to affiliate Madalyn and what happened with another day to help me separate the two, in some way.  It is okay for us to incorporate her on the 3rd of January with bee but in a way that eliminates the feeling of being torn that I often have.  I do not know what we will do.  It seems like it is too late but at the same time, there is no real or right time to do something like this.  Acceptance has been a challenge and by doing this, I develop a new and healthier sense of acceptance. 

I just finished the last of my major assignments in my Human Sexuality course.  On Monday, I begin a Philosophy class called Ethical Thinking in the Liberal Arts.

My love and I are doing well.  He drives me crazy but is such a great man.  He is incredibly supportive right now and that means the universe to me.  <3

I have much more to write about but I wanted to post a general update since I have been distance since my diagnosis.  I got off of work at 4:05AM, work again at 2PM and then off at 6PM, and then come back a third time from 11P to 5A so I should probably rest while I can.

Rise & Shine

A strong friendship does not need daily conversation.  It does not always need togetherness.  For as long as the relationship lives in the heart, true friends will never part.   - Unknown

Remember how I discussed positive change in previous posts.  I was serious and am off to a great start.  We had a great time celebrating our birthdays and even crossed another milestone in the family.  We have discussed announcing the recent milestone in our lives but I think right now we are going to enjoy it ourselves.   There a couple close friends that I will share the excitement with and they will remain the only ones for now.  Don’t get me wrong, I want to scream it from the rooftops but in the meantime, I like the feeling of keeping it more of a small intimate moment right now.  I want to enjoy it.  I deserve to enjoy it.  We do.

We have been working on prioritizing certain things in our family life.  I haven’t been meeting up with friends like I wish I could or anything of that nature but at least I am getting life back on more of a positive track.  I have submitted almost everything needed to GCU.  I need to fax some stuff in the next couple of days to start finishing my degree.  Hopefully I will get around to that this weekend.

I am on the road to recovery health wise.  I did have to have two more blood transfusions and we’re trying a different method in treating my anemia problems.  So far, so good.  I have blood work drawn tomorrow and then a couple appointments next week.  I have such a busy life these days.  I am working, preparing to complete my degree, tend to family medical needs including my own, try to keep a cozy and clean house, etc.  It can be exhausting but is so worth it.

Our hospital visits are hopefully coming to an end.  Our little bee is doing great right now but still requires hospital care.  We are setting up home health stuff since she will be coming home with both a feeding tube and on oxygen.  We are also setting up appointments left and right so we are prepared and have a clear understanding of what to expect, how to handle things, etc.  K-bug is doing wonderful.  One more week of 4th grade and she is thrilled about it.  We’re hoping to do a family Sunsplash to celebrate.   So proud of us as a family.

Prayer Request:  I have been forming relationships with my biological dad’s side of the family.  My cousin Bobby has been through a lot especially for being so young.  He is now in hospice care and is not responding.  He is being made comfortable until he is ready to pass.  It has been a rocky road for him but thankfully he has been able to make a ton of memories that everyone treasures.  Please keep our family, especially sweet Bobby, in your thoughts and prayers.  (Bobby’s Loving Support System).  Bobby: I wish I had the opportunity to make my own personal memories with you.  Distance and an unintentional disconnection from family prevented that but you are in my thoughts and prayers each night.  You are in my heart and I admire the strength and being able to live through the memories of others.  Clearly you are such an inspiration in so many lives.