From the Mouths of Babes

So have started to toy with the idea of having my daughter write posts as she wants to this blog.  From the perspective of an 8-10 year old surviving cancer along with their parent.  Or maybe it becomes another blog unto itself...thoughts?

Involuntary Unintended Consequences

I spent the first 18 months of my treatment and recovery focused on getting that clean bill of health one year post transplant.  During that time, I did not deal with the emotions of having gotten sick.  I did that after obtaining that clean bill of health in April 2014.  Between May and July I allowed myself to come to terms, grateful for my healing.  And felt like I could now move forward.  But I didn't realize how deeply that 18 months affected my kids...until I ended up in the hospital in July.  Especially my 10 year old daughter.

My kids got to go with Uncle Chris to take me to the Cancer Center with temperatures just shy of 104.  Both were visibly shaken and were crying, but I told them I would be OK.  And I was.

Today, I took my kids to school knowing it would be another 12 days before I would see them again.  I have been dreading this for weeks and have been so anxious that I am not sleeping well.  Neither has my daughter.  While getting ready for school this morning, she asked "Mom, are you going to be OK while we are gone?"  Not really understanding where this was coming from - I assumed she was referring to my being alone for that time - I replied "Yes."  "I'm afraid to leave you.  Afraid you won't be here when I get back.  We haven't been away from you for this long EVER."  Then she started to cry.  And so did I.  My almost seven year old son has become fiercely protective of me.  Anytime I cough, Jamie wants to know if I am OK. 

When I was little, my dad would travel for business and I was always terrifed he wouldn't come back.  Now, here was my little girl telling me she was afraid I wouldn't be here when they got back.  We cried and hugged and I told her once again that I would be OK and looked forward to seeing them in 12 days.  And they would be OK too.  But it got me thinking...

"State of the Dianne 2.0 Union"

It has been a while since I last posted anything to this blog.  The July stint in the hospital for pneumonia was a huge set back for me mentally and emotionally.  The fear that set in so quickly took some time to be absorbed in to my new normal.  It took until the past week to truly feel like me (mentally) again.  For the first time in almost two years.  Thank you Jesus!

So...how am I doing?

My new immune system seems to be doing well, though there are a few "minor" yet annoying things to this aspect of my recovery. 

• Hair thinning.  I had a full head of hair, albeit pixie like, when I went in for my April one year checkup.  Following that, I came off the immunosuppresant meds and within a month my hair thinned in certain places.  In the temple and crown area.  Preceding the hair loss, my scalp would feel like the chemo burn that made me lose my hair two times before, though not as painful.  Like a mild sunburn.  All that thinned had grown back almost 2" when, in late August I felt the sunburning sensation on my scalp and saw the thinning begin again.  I am incredibly self conscious about this. 
• Skin changes.  The worst of this is the fact that my face is incredibly dry and rough.  And I feel like I'm going through puberty all over again as I am breaking out like I haven't in 20+ years.  Between this and the hair thinning issue, confidence in my appearance has taken a significant hit.  I occassionally see a red-dotted rash on my arms and legs only.  It isn't itchy.  Almost looks like small pinpricks of blood.
• Changes to taste and smell.  Things don't smell quite right and there are some smells that make me want to hurl.  The Yaki Soba noodle dishes my brother are an example of what makes me gag.  From a taste perspective, right now chocolate tastes like dirt, anything that has any kind of oil or butter tastes off and leaves a coating in my mouth.  I cannot really taste sweet (no cookies, candy, cake, or icecream), spicy (wasabi, though I can taste the serranos in salsa or pico) or salty things (soy sauce, popcorn, chips).  I used to tell people I could eat Mexican food all day, every day.  Not so much now.  Once in a while is fine.  So it is a daily challenge for me to figure out what I am going to be able to eat.  If it doesn't smell or taste good, I won't eat more than a couple of bites.  So a lot of food goes to waste.  Don't like the taste of bread or tortillas.  Used to eat a lot of chicken pre-transplant.  I can barely stomach the taste now.  Don't like pork.  Cannot stand eggs.  I used to eat these all the time.  Things that right now I am consistently able to tolerate include Campbells Chicken Noodle soup (condensed), salmon (yay!), shrimp, beef (though not ground beef), bananas, plums, yogurt (I make smoothies for breakfast almost daily), rice, celery, broccoli, carrots, olives, cucumber, dill pickles, and ranch dip.  The good news is I have lost a net of about 50 lbs since November 2012.  Bad news is I feel like I am starving though my weight loss has stabilized.
• Vision changes.  There are days when I see double even with my glasses.

I am praying for my hair, skin, and vision to return to healthy. 

I almost feel guilty complaining about any of these things, so for the most part I do not.  But internally they make me cringe.  I survived cancer while others are fighting a good fight in a losing battle. 

7 days in the Hospital + 1 Week of Followup Infusions = Cranky Dianne

It is amazing how such a small set back can affect you. After spending a week in the hospital for pneumonia and then a week of antifungal infusions that take a half day to complete, I feel like I am at my wits end. I am tired and cranky. I am back on antianxiety meds to get thru this period. Not sleeping well. So much in such a small amount of time. Clean bill of health from Mayo. Divorce finalized. Kids back in school. Now I need to focus on me. Have spent months dealing with the emotions of the divorce, losing my job, and getting sick. And with the added hurt and anger that were the result of ONE person treating me like absolute shit and having no other excuse except that they haven't been right since their accident. Wtf?!  As much as I sometimes wish this person ill will, I still pray God guides and protects them. I have to find a job. And figure out whether I want to keep my house or move. So much stress.

Please God help me get through this time. I survived cancer. This should be easy, right?  I could use at least 5 years of REALLY REALLY good life with no health issues and return to financial stability. Maybe even date again. 

103.5 Buys You a Trip to the Hospital

On July 23rd I was admitted to the hospital with "atypical" pneumonia of a fungal nature. Four days later, they're still scratching their collective heads. What is the cause so we know how to treat this? My spirits are still high - and I know God in heaven will heal me - but it is frustrating to have another picc line, and to be on so many meds that cast a net wide enough to catch the culprit. If not bacterial, viral, or fungal this could be GVH related. 

Buckets

Knowing the story behind The Fault of Our Stars movie that just came out, I went to see it anyway. The movie was well done. The crying occurred during the last 20 minutes of the movie. Aside from the obvious, I couldn't help relating to the characters in the movie and the emotions  they had just being ill and then going through treatment (to an extent), as well as relate to what the last 20 months have been like for my parents, brother and even my children.  I have never wanted my illness to define who or what I am ("so what's your story?"), or dictate what I can or cannot do in the longrun.  Being afraid of losing my life has motivated me to live life freer and added some new experiences to my bucket list - tandem sky diving anyone? - so that my life was well lived. That the donation so generously given was well worth my donor's time and discomfort. And I want my zest for life to be something my children inherit from me. My story will be who I was before, during and after becoming ill. And my lifelong fight to live in this world!

Transplant Validation

Validates 100% of the DNA Present in my last biopsy was donor DNA. Woo hoo!