Before, +1 and +2 Years Post Diagnosis

It is taking longer than I would like but my hair is finally getting longer!  I am so grateful to still be here with my kids and family...

Taken 3 weeks prior to diagnosis. 

Taken 1 year post diagnosis. Six months post transplant. Hair is making a comeback!

Taken 2 years post diagnosis. More hair, less weight. Nineteen months post transplant. Feeling more like me!

Two Years Ago...

...I was admitted to the hospital and a diagnosis of Acute Myeloid Leukemia was confirmed. Fifty-five pounds lighter, 19 months post transplant, divorced and feeling more like myself mentally, I am doing well. I am so grateful. For many things. To God for healing my body and mind and for the absolute stubbornness I in part attribute some of my success to. To my family and friends for being my rock as I have traveled this path. I cannot imagine what this road has been like for my children, who can only now sift through their feelings now that I am no longer sick. You were the reason I fought so hard. For the fantastic team of doctors, nurses, nursing assistants and specialists at both MD Anderson and Mayo. For the insurance my former employer had that, via COBRA, allowed me to be treated. To my pets for still loving me even when for so long I couldn't give you any "momma time."  When given the opportunity, you still curl up with me. 

For those of you just beginning this journey, FIGHT!  With all that you have and are. SHARE how you are feeling on the inside as well as physically.  No, most of your family and friends won't know how you feel but they love you and want to help...even if only to empathize. Be as PATIENT as you can - with your body as it copes with treatment and tries to heal, and with those around you who only want to help but feel powerless. ADVOCATE for yourself or have a trusted family member or friend do so on your behalf. If something doesn't look or feel right, tell someone. Tell everyone until you are satisfied. Be NICE to your medical team. Aside from your family/friends, they can advocate for you and will bend over backwards to make you feel more comfortable during the process...they likely have seen it all.  TRUST and have faith in God. Pray and listen to Him. Follow medical advice. Keep fighting. You CAN do this. LIVE!

Who Knew?

As I met T for lunch the other day, I ran into a woman I met that I worked with at Apollo - Christine Vu - who shared she followed my progress on my blog. Of course that made me feel good because over time the number of people you interact with with any frequency - that you know care about you - decreases. We all have our own lives. It happens and there is nothing wrong with it. 

I just wanted to acknowledge and thank those of you that care and still follow me, though we might not be in touch often, on this journey. Thank you!

"Why Her?"

Less than two tears ago I ran into a former Apollo colleague when I was still undergoing treatment at Mayo (it could have been MD Anderson as my memories from that time are fuzzy); his wife was undergoing treatment for cancer too. I had the privilege to meet the bright light who was his wife, Jennifer. You would have had to meet her in person, to be in the same room with her, to understand what I mean. Today, I along with tens of her family and friends got to say goodbye. She lost her battle with her disease on November 1st. 

In communicating with fellow leukemia patients/survivors, the question "have you ever asked yourself 'why me?'" comes up frequently. I honestly do not ever recall asking myself this question. Perhaps those that walked some of the journey with me - Jamie, Max, Kav, Dad, Mom, Chris, Diane, Darlene, Angelica, T, Nikol, Laura, Kathleen, Art, Tonya, Maja, Jennifer, Troy, Irene, Julius - would recall otherwise. I just knew I had to fight to stay with my kids. Period. And I am so grateful I get to. But why Jennifer?  She had young children, too. She so loved Christ and lived a Christian life. And she had such a terrible and painful road. Twice!  I struggle to wrap my head around it. Is it OK to think it unfair that Jennifer's kids have to live the rest of their lives without their mother while clinging with white knuckled fists onto the fact that my kids get to?

Why her?

Survivors Reunion

Attended my first Survivors Reunion tonite. Took my brother with me as he is the one person who has been there for me over the last two years without fail. I am grateful on many levels. 

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!

Nice to Meet You?

Today I have the opportunity to meet a girl who was diagnosed with a different form of Leukemia, CML. Her mother works with one of my Aunts and that is how her mother and I connected. I wish it were under different circumstances, but I look forward to meeting them both. My desire since I was diagnosed has been to be a resource to other newly diagnosed cancer patients. This is my first opportunity and I pray this helps the girl as that is my goal. To be a sounding board, a resource who has already been through some of the paces at MDA. 

Sniff, Sniff, Gotta Wait One More Year

I was so looking forward to the opportunity to maybe share contact info with my donor but learned, because she was an international donor, I have to wait one more year. Bummer!!

Can I Help You?

Eighteen months ago, when I got sick, I knew I wanted to "mentor" newly diagnosed cancer patients. I knew I had to wait for a year post transplant. Now, 13 months post transplant I may get that opportunity with the family of a lady my Aunt works with. We have already been in contact and I have gotten to help them  figure out how to switch doctors and answer a few of their questions. I am "excited" to say I get to meet them next Wed when they are scheduled to meet with their new doctor. Wish me luck!  

One More Relay for the Books

We didn't get to stay very late, but I got my kids to walk more than 2 miles before packing it in after 3 hours. My son was asleep 4 minutes after getting back into the car. This event was really well run. Looking forward to next year's event. Coming up:  Fall Be The Match walk/run. 

CANCER FREE!!!

No more Mayo visits and off two more meds!!  Last two for another couple months and then ALL DONE. No more biopsies. Thank God, because that last one was a doozy and I am still numb on that part of my anatomy.  Yippee!  Chromosomes and immune system is 100% donor.  

Danke, danke, danke!  

And the Verdict...

...will be in on the 29th. Anxious doesn't even begin to describe how I feel right now. 

Recogniton

In the past year I have been blessed to have many incredible people support me thru getting sick and being laid off. Following is a nod to at least some of them. 

Thank you God. I don't understand why u have have tested me so, but do believe there was a purpose. Thank u for weeding those who don't belong in my life out. 

Jamie and Max, my true loves, you have my heart forever and no matter what I will always love you. God blessed me (and your dad) with you!  The last three years have been tough but you guys are such troopers. Jamie, you have such a kind and nurturing heart and disposition.  It isn't fair that you had to help care for me but I appreciate it. Max, I know that if you could have killed the bugs in my blood, you would have.  I hope you both saw how strong and determined momma is and how I don't give up...at the same time I hope neither of you remembers this time well in the future. I am grateful I am the one who got sick rather than you. 

Mom, dad, and Chris.  Thank you for putting your own lives on hold to help care for me, my kids, pets and house. I know it wasn't pleasant or easy.  Mom and dad, I know it must have been hard to think you might lose another of your children so soon.  Chris, my brother, you have done so much for me and my kids and I will never forget it. 

Kav, Irene, and Cathy. I know it was inconvenient, but thank you Kav for keeping our kids when I was hospitalized. I appreciate your love and flexibility. Even today. 

My friends. Diane Watkins and Darlene Landrum for your frequent hospital visits. I so looked forward to them when I was cooped up. Julius Tavernaro, you were so thoughtful in bringing me movies and a laptop to watch them on. And hot teas. Angelica, thank you for lending me your notebook.  Sharon Sirotnak and mom for your kind words and thoughtfulness. Sandra, your continued health is an inspiration. Nikol, your notes and calls meant so much to me and I will keep that sushi card as long as I live. Please don't follow in these footsteps...babies and boyfriends/husbands were enough. Kathleen, thank you for thinking of me in last year's Relay for Life. Laura and Theresa and Maja your visits uplifted me. Troy you were there when my diagnosis was confirmed, and got to see me first cry and then resolve to beat my AML. And you were there the day I received my transplant.  And, sorry to burst everyone's bubble, but I have the best neighbors in the world. Special thanks to the Stevens, Forsgrens, and  Shades families as well as Tom and Dianna. Thank you one and all. 

Uncle Lou, Uncle Dick and Aunt Muriel, Aunt Mary, cousins Lori, Beverly and Gregg. Cousin Deanna. Thanks so much for bringing a dose of levity and laughter at a time it was so needed. Aunt Melissa, thank you for the direct line to the convent!

Buddy, Sosa, Ginger, Bella, Winter and Jackson. My pets. Sorry mommy has been less available to you emotionally. I am working on it!

My extended family at MD Anderson for taking such good care of me. Mary Peterson, Stacey Heyduke, Deb Saleen, Nena, Margot, Noelle, Brian, Gulnar, Jessica, Kayla, Beth Chapman, Sarah, Sonia Juanita, and so many others helped me get THIS far.  Beth, Thank you for crying with me during that first biopsy. Thanks to Dr Slack at Mayo Clinic for getting me through transplant. Dr Ulrickson at MD Anderson for getting me to this point post transplant.  And Dr Klupelberg for getting me to transplant. 

I am sure I have forgotten many people. Know that I love and appreciate you all - whether you are named here or not. 

Vicious Cycle

Do I eat or not?  If I eat I have about a 50/50 chance of feeling like someone punched me in the stomach. So I do not eat. And then I am hungry.  Stressed. 

All I could eat for bfast today - 2 bites of a bisquit. The rest will get thrown out. =0(

Cannot wait for the 29th to come and go. Having doctor confirmation of my health will go a long way I am sure to minimize my anxiety and related physical symptoms. Like stomach upset.  

Dang! Am I Going to be Motion Sensitive Now?

That is going to suck!  My allergies are way worse and I get motion sick (nauseous). I love riding rollercoasters but wonder if those days are over given just driving to Canyon Lake makes me nauseous. Hope this is just a phase. 

Five More Shots Today

Hep B

Pneumonnia

Dtap

Polio

Flu???

One Year + One Day

Happy Easter!  And I am now 366 days post transplant.  Pic of me, my aunt and cousin. 

Annual Testing Complete

Thank God! So tired. Looking forward to that "all clear" from el doctor in a couple of weeks. 

Hands down the biopsy was the worst. It was actually probably the second most painful biopsy I have ever undergone. The easiest was my opthamologic exam today which showed my eyes are utterly normal. Stigmatisms and vision correction needs aside. =0)

Will You Want to "Meet" Me?

Now that I am one year post transplant and doing well, I can reach out to my donor to see if they are unterested in establishing direct contact with me. I hope so. But I also understand she may not be. Praying for a yes...

Test Day #2, One Year Post Transplant

So I survi ed the biopsy. As suspected I am more sore and the site itself is a bit numb. It is an odd sensation. Today is my second day of testing. The only pain will be the stick for the blood draw (smallest butterfly, please(. Otherwise it will likely just be a long day. Lab work, pulmonary (breathing) test, bone density ultrasound and an opthamologic check. 

Memories...or Lack Thereof

The twilight meds given to me on Monday...well, I realized yesterday that I didnt remember flipping back over onto my back post biopsy. Thats never happened before. I was awake the whole time and remember the blinding pain of them pushing hard w their fingertips to find the right place to drill. I remember the drilling and aspiration and bone chipping. The next thing I remember is my brother sotting in the chair across from me and thinking how utterly drained I felt. 

But I have never not remembered some aspect of a biopsy. Too bad I wasnt "away" for the biopsy itself. Mr.Chuck Harrison, being "under the influence" can be such a nicer alternative. 

Day One Testing, One Year Post Transplant, In Da Bag

The worst of the tests is complete. Thank God!  Home. Tired. Gonna be a little more sore than usual because they had a tough time numbung the bone. But I don't care. This test is done!  

Here We Go, Here We Go, Here We Go Now

Biopsy day - one year post transplant - has arrived. Did not sleep well last night. Super anxious. And I look like it. 

One Day...Until My Next BMB/A

4/19 is the official date of one year post transplant. Tomorrow, the 14th, I have a BMB/A scheduled to ensure I am still in remission. I believe the results are going to be good, but can't help but wonder "what if" - which is common, apparently. This is scary stuff for sure.  Praying, praying, praying. 

Relay For Life - 04/12/14

Got to spend time with my peeps from MD Anderson at the Relay for Life event on April 12 th.  These ladies helped me get where I am today and I am so thankful for each one!

Relay for Life, 4/12, Red Mountain High School

My friends at MD Anderson are sponsoring this event to begin at 1:00 pm on Saturday April 12th benefitting the American Cancer Society.  It is being held at Red Mountain High School in Mesa and will run until 7:00am Sunday April 13th. Come in out and help support funding research that will put an end to cancer.  

Still Sick

Think I might be turning that corner back to health tho. Got lots of sleep last night but still very tired. Gotta rest/rest/rest before the kids come home tomorrow. 

The First Real Test of My New Immune System???

The weekend the kids, my brother and I began our roadtrip back to Indy Max starts coughing a little. By the next day, he was un a full on gead abd chest cold. That was two weeks ago. A few days later, nearung the end if our stay both Jamie and I began showing signs that we too were coming down with it. Ten days later, Max is dibe, and so is Jamie basically, but I am still sick. No fever but a deep cough that sometimes drives me to heave. Not able to rest well.. .uncomfortable.

Buh-Bye Anti Rejection Meds!!!

Even though my annual tests are still to come, I received confirmation today that they will be normal. My primary oncologist is taking me off my anti-rejection meds entirely as of today. Hooray!  

Such a rollercoaster...

April 14th...Let the Testing Begin

As I approach the one year mark of my transplant, I ready myself for the battery of tests I will soon undergo to check the status of my new immune system. I would be lying if I said I wasnt afraid. I believe the results will b normal but in the back of my mind is the nagging thought, "What if...?"  This is apparently a normal reaction had by many cancer patients.  

I guess we will see. 

Be Someone's Match!

As my one-year anniversary approaches, I want to call upon my friends and family to consider signing up as a stem cell donor via http://www.bethematch.org. It is super easy to volunteer and you don't have to donate until someone who needs a transplant matches your criteria. Donating is similar to giving blood. 

Without this valuable organization, and my donor, I honestly do not think I would here today. 

Nervous!

I admit it. I am nervous. April 19th marks the one-year anniversary of my stem cell transplant. At that time, a 43 year old female from Germany gave me the ultimate gift...LIFE!  A perfect 10 matching all criteria my doctors sought. She gave my two kids their mom back. She gave my parents and brother their daughter and sister back.  Thank you Jesus for this woman's gift!  

Hoping to establish direct contact with her once all my results come back AOK. 

Cardio City!

Started going to the gym again this week. Tomorrow will make 3 x. Wish me luck and determination. I def feel better afterwards and it is helping to rid me of pent up frustration. GO ME!

Recent Selfies

One of the most recent pics of me. It is a bit dark but u can see how long my hair is getting. Just prior to getting a facial and massage - which I bought on Groupon!

And after, heading out to a date w a friend.  

"Plate of the Day"

I painted this plate to recognize what I have dealt w in the last 18 months with regard to my health. 

The color orange represents Leukemia. The date is when I received my transplant. Those are my hand prints - which Max has already sized his own against - and then how I still feel about the whole thing. 

Me w new skin...and no foundation!

Relay for Life for the American Cancer Society

This time last year I told my friend Kathleen - who was doing this last year - that I would do it w her and her team this year. True to my word, I am now registered to participate in this important event. 

If u want to help support me in this endeavor, you can do so via the link below:

http://m.main.acsevents.org/site/TR?fr_id=57387&pg=personal&px=31514990. 

Thanks!

Catching Up with Life

When you spend 6-12 months if your life, fighting for your life, other things get put on the back burner. Like losing your job, familial changes, thinking about being and feeling sick and time missed w the kids. And just like the past year you find yourself prioritizing what to deal w next. 

Finding a job

Dealing with familial changes

Do I date or not?

Depression and anxiety due to all of the above  

I share these things for pity's sake, as some might think. This happens to be my reality and unless you have spent time in my shoes, all anyone can do is form their own opinions. You spend a year so focused on getting better, not letting anyone but the doctors and nurses know how you really feel and you don't grieve the losses that occurred before and during that year.  I am truly starting fresh but the "wounds" feel raw. At least the kids have stopped asking if I have to go to the hospital. I think they are finally healing too. I find myself asking "Do I stay or do I go?"  Start over somewhere else. 

But I am blessed beyond deserving. I thank God EVERY DAY for this miracle and for my perfect donor. After all, I did contract the absolute worst form of leukemia. And now I am cancer free. Only 4 years and 3 months until they consider me "cured". 

Until this has all been figures out, I will still look for opportunities to help others who are going through similar ailments. Its rewarding and part of the reason I am still here. Part of my purpose, which I will fulfill. 

9 Months Later...

...Dianne 2.0 is doing just fine. In remission. Have had my second round of immunizations (apparently I have 3 more rounds to go at the 12, 14, & 18 month marks), and later this month they start to wean off my anti rejection meds. Woo hoo!

The Evolution of Dianne 2.0 Since Transplant

I thought it would be interesting to show my progress over the past 9 months.