Long time no talk...

It took a while to be able to log back into this blog, though the desire to do so has existed for some time.  There just does not seem to be quite enough of that - TIME - to do everything I'd like to do.  Anyway...

I AM 10 YEARS POST TRANSPLANT...AND STILL CANCER FREE!

Thank you, God!

About this time, 11 years ago, I'd just gotten laid off from my job.  Wasn't feeling well...at all.  Two weeks later, I finally visited the doctor only to be hospitalized that night.  My hemoglobin was 4.6.  Not good.

After induction and several rounds of chemo, I was blessed to be matched to a PERFECTLY matched donor.  Six months after diagnosis, I received my stem cell transplant.  

I was so blessed!

Ten plus years later, I am here...still a part of my kids lives, which was the drive behind my fight.  After I reached that 10-year pinnacle, my daughter cut her very long hair and donated it to an organization that makes real hair wigs for kids and women who are also battling cancer and have lost their hair.  She'd spent years growing her hair out with that intent in mind.  Such a thoughtful thing to do...paying it forward to others in need.  She remembers me being sick, she was old enough at the time.  My son was so young, he really has no memories of the time.  My daughter's curse...my son's blessing.

 

I am so glad I created this blog when I did.  I read through some of my old posts, and do not have any actual recollection of a lot of what I recorded.  If you are reading this blog, and are the one fighting for your life, or supporting someone you love who is, and reading my journey helps or lends you any comfort that this battle can be won...I am so glad.  

Don't give up, my friends, no matter what you are going through.  

I will forever be grateful to my family and friends for being here/there for me as I went through this whole process.  Without God, my kids, my donor and YOU, I do not think I would be here today.  

God bless you all!  

D

Happy Fifth Birthday to Me!

Has it really been five years?  Wow!  I am happy to say I have reached this pinnacle and am still cancer-free. Though the doctors do not like to use the word “cured,” I have been told that the odds that the AML returns are very small.  So I will use the “H” word...as in HEALED!!!

I continue to experience minor GVH. I think what it is coming down to is that my body no longer metabolizes food like it used to/should resulting in lower vitamin/mineral absorption. I have found that such a thing results in many of the symptoms I encounter. Super dry skin, eyes and scalp. Joint achiness. So I take supplements, try to eat/drink things high in what it seems like I am low in, and drink a lot of Poweraid.  I have developed allergies I did not have before.  The egg allergy comes and goes...which is very odd. I just have to keep a supply of Benedryl handy.  Other than that, life in this “new normal” is just that...normal!

I wish Mom were here to tell the good news to. She passed away a year ago. But she knows...

Thanks to all who continue to love me, listen to me, and continue to be supportive of me and my kids as I continue to Get to Dianne 2.0. 

Before:  https://www.facebook.com/photo.php?fbid=4913821129946&set=a.2386416426408.2150734.1430709439&type=3

During:  https://www.facebook.com/photo.php?fbid=10201233204018746&set=a.2386416426408.2150734.1430709439&type=3

Now:  https://www.facebook.com/photo.php?fbid=10216321006804386&set=a.1581775190880.2087070.1430709439&type=3

Happy 4th Rebirthday to Me!

Four years ago today I received the cells donated to me.  I remember the nurse attending my transplant telling me how unusual it was to receive so many cells. Most patients only receive half the number I was receiving. I already felt blessed to have had a perfect match found to receive my transplant from.

Today, I am so grateful to be here...telling you I am still "cancer free."  Woo hoo!  Minor GVH issues continue to necessitate the need to remain on a low dose of steroids; we are hoping to ween off them "soon."

Only one more year until I am "cured."

Happy 3rd Rebirthday to Me

Wow. It is so hard to believe it has been three years since my transplant. Those years, in hindsight, went by in the blink of an eye. At the time, well, it still went quickly. 

I have had the opportunity to make contact with my donor, Katrin. We have had many questions of one another. It is a really neat process getting to know more about her and her family.  I have been able to confirm that, no, she is not allergic to eggs. Something I appear to have developed at least to an extent. 

There is still healing and change occurring every day. My tastebuds have, for the most part reawakened; some things taste just a little bit off. Anything artificially sweet. I still love spicy foods but cannot tolerate as much intensity as I once could. I have developed an affinity for Italian food and red sauces I didn't really care for before. My hair is growing out nicely but still thins at the temples and on top periodically. It thins around the time that my face breaks out in what looks like acne but feels like a heat rash on my face, neck and back. My eyes are intermittently (or is it alternatingly?) either so dry my eyelids stick to them like suction cups, or so wet it looks like I am crying - there isn't a whole lot of in-between. So, after being off all meds for about 2 years, I am back on a low dose of steroids to control the skin and scalp issues believed to be caused by GVH. Even at that low dose, however, I have gained 20 pounds (not good), and I have an even quicker temper. It isn't nearly as bad as the higher doses from the past, but STILL!   It does seem to be helping some with the eye issue. Steroid drops to the eyes work really, well but aren't a long term solution, though, as they can stain the cornea. =0(

Back to that egg allergy, I have found that I cannot have caesar dressing and if I "want" to have eggs over easy (or with a runny yolk), I had better take a dose of Benedryl in advance. I have to keep Benedryl in hand just in case something gets through with runny or raw egg in it. Having your tongue and throat swell up, keeping you from breathing is pretty uncomfortable and scary!  Flu shots are ok. Hard boiled, fried, scrambled, or omelets are ok. Prior to getting sick, eggs and chicken were my primary source of protein.  For a time, afterward, I couldn't stand the taste, smell or texture of chicken. I am happy to report that that particular issue has been resolved. I am still not a big red meat or pork eater. 

My energy levels have been much better. I have to say, this has been the slowest to truly recover, overall. 

The kids and I have taken up biking together. That is a lot of fun and brings back good memories of my parents and brothers and I riding our bikes 6 miles round trip to have a picnic lunch at the park. I see some bike rides to the park in my kids and my future!  I have had an opportunity to spend some good quality time with the kids. At school events, with friends. We even figured out how to pitch our "easy to set up tent" in our backyard for sleepovers with friends (adults must overcomplicate it because it takes a couple of 12 year olds 5 min to set up and much longer for the adults). We still have to master taking it down and folding it so it fits into its own case, but we are getting lots of practice. 

I am ever grateful for this second chance at life and for those family and friends who have stuck by me through it all. Grateful for my donor and her family for their generous gift of life. And to my doctors and nurses at MD Anderson and Mayo, for your compassion and expertise and guidance over the years. I truly do not know where I would be without your encouragement and support. 

Love to all,

D

A Happier By Far Thanksgiving

Three years ago today I was going through one of the most difficult times in my life. I was sicker than a dog because of the toxic cocktail coursing through my body, killing the cancer that tried - and failed - to take my life. I got to spend Thanksgiving in the hospital that year. But I was still thankful. 

This year, Thanksgiving will find me more grateful than ever. I am here. I get to watch my kids grow up and participate in their lives. The hurt and anger of relationships gone wrong is subsiding. My heart is healing. The side effects from my stem cell transplant are evolving away. My taste buds, after about a year's hiatus, are returning. My skin is clearing. My hair is thinning less frequently. I am hoping the issue with my eyes also goes away...soon. I am surrounded by family and friends who matter and love me. I get to speak to fellow patients and survivors and encourage them along their journey. I am growing in my faith and understanding of God - without whom I could never have achieved any of this. I count among my friends some of the nurses and staff who helped me in my journey to beat cancer, including Beth Chapin (who looked me in the eye and cried w me during my first biopsy), Mary Peterson (who was a bad ass mama bear/patient advocate, fighting for and educating me along the way), and Stacey Hayduke (the best people ice packer, shoulder to cry on and generally keeping you healthy so the toxic cocktail can do its job). And I am grateful to have the continued opportunity to get to know my donor, Katrin, whose cell donation saved my life. 

I pray you have much to be grateful for, too. Happy Thanksgiving everyone!

TAG!!! We Are Both "It"

I am so incredibly happy to have an opportunity to get to know my donor, Katrin! We are asking questions back and forth via email. She lives in Euskirchen, Germany and is married with two children who I believe are in college. 

Thank you, Jesus, for making this possible!

State of the Dianne 2.0 Union

An update on my recovery. 

My hair is thickening up and growing out faster. Hooray!  A few grays but not too bad. Oh, and yeah, my hair actually has some curl to it that it did not have before. 

My eyes have improved with the assistance of meds. No more constantly tired, watery and irritated eyes. 

I have determined I must have developed an allergy to eggs in the form of over easy, scrambled, omelettes, boiled, fried, etc.  My throat feels like it swells up and my stomach gets super upset. I can eat things that have eggs in them, though. I used to eat eggs all the time so this change is a bit "painful".  I can live with it though. 

My face continues to break out. It feels like puberty except my skin is now dry vs oily.  Work in progress. 

My weight loss has slowed now that my taste buds have returned and I can eat again. I have lost 75 lbs.  While I needed to lose the weight, there is nothing to fill out the wrinkles that have cropped up around my eyes and on my neck. I feel like I look older than I am. 

My taste buds did return. At least some of them did. I think some are taking an extended vacation. Maybe some have defected. My sense of taste is still off in that I do not taste salt or sugar well but do other spices. I do not really like chicken any more, though I force myself to eat some for protein. I like shrimp and salmon but that's about it for seafood.  I can eat beef once in a while. Do not like pork. Do not care much for milk - probably because I cannot taste it very well - but do like yogurt and some cheeses.  Love fruits and can taste many of them.  Like most vegetables but not big into salads. Bummer!  (Seriously!). Do not like ice cream, candy, cakes, etc.  Imagine all of these sans sugar. Yeah, thats why. 

We Have Contact!

I just received contact information for my donor!   I am beyond excited at the possibility of getting to know more about each other.  I hope she is as interested in doing so as I.  That she consented to provide her contact information says she might be.  Thank you JESUS for making this possible!!!  And to the beautiful soul whose donation enables me to continue to be a part of my kids lives... DANKE SCHON!!  <3

Feliz Quatro de Mayo

My daughter and I on this day, as good an excuse to eat yummy Mexican food as any!  A Girl Scouts meeting scheduled for May 5th meant we had to "celebrate" a day early. 

Thank you, my sweet donor, for making this possible. Always in my thanks and prayers...

D

Happy Two Year Birthday, Dianne 2.0!

It doesn't FEEL like it has been two years since I received a second chance for life. Two years ago today, I received my stem cell transplant...six months after being diagnosed with Acute Myeloid Leukemia. I feel good!  Not a day goes by that I am not grateful. So much change!  

I have experienced minor GVH over the last two years and was hospitalized last summer for pneumonia, but have had a relatively uneventful recovery. I have lost 70 lbs. My taste buds have returned after being on hiatus for about nine out of the last 12 months. I truly eat to live today, there is no "wow" no matter what I eat but I am fine with that. My hair grows, thins and regrows about every six weeks. I sometimes feel as if I am going through puberty all over again when my face breaks out...weird since my skin is very dry now. I have been beyond post menopausal for over a year now. My eyes, at times water all day long. My allergies are worse. I do not have the stamina I once had but little stops me when I want to do something. I tire more easily. I have gotten to spend a lot of quality time with my kids over the last two years and that I wouldn't trade for the world. My daughter tells me she does and doesn't want me to go back to work.  She likes having me at home.  There are a lot of things and people I do not remember from that first 18 months following diagnosis. I feel bad when someone remembers me but I do not remember them. Hopefully they'll accept my 'chemo brain' excuse, it is real!  =0).  

Thank you, Jesus, for healing my body and making Dianne 2.0 possible. Through You all things are possible!  I am in awe.  Thank you for bringing the collection of people you did into my life to get me to this point, and for removing those whose influence were either no longer necessary or just not positive.  To my donor, with whom I may now have an opportunity for direct contact, THANK YOU for your gift. You have made a difference in my health and life. My kids still have their mom, and my parents and brother still have their daughter and sister. I will forever be grateful to you. To my friends and family, you helped me weather the ups and downs this journey has had, cheered me up and kept me sane. To my doctors and nurses at MD Anderson, Banner Gateway and Mayo Clinic, your expertise and skill got me to now. Mary, Beth, Stacey, Deb, Mark, Brian, Gulnar, Kayla, Nena, Margo, Jennifer and Drs Slack and Ulrickson...THANK YOU. 

Happy rebirthday to me!

My Buds Are Back!

It has been close to a year since my taste buds went on hiatus, but they are making a return. Hooray!  This means I can better taste what I try to eat and that, in some cases, the food tastes close to what I remember. Being able to taste is important when it comes to making meals, ensuring foods are palatable and not over/under seasoned. I still do not like chicken, eggs, or butter. I used to live on chicken and loved eggs. I still dislike most fast or processed foods or sweets (including chocolate, bummer!). Love strawberries and oranges. Like bananas and many other fruits. And most vegetables. Pretzel crisps. And my faux bacon (protein strips). Fish, shellfish and some beef.  Tolerate milk, pasta, rice, potatoes and bread. 

Now maybe my hair and skin issues will clear up!  

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.