No Biopsies for Me Until the One Year Mark

Hip hip hooray!

One Year Later...

As I was looking through some photos from one year ago, right after being admitted and diagnosed with AML, I reflect back on everything that's occurred this past year. 

I'm thankful it's gone as fast as it has. I'm thankful for my perfect 10 donor from Germany. I am thankful to be surrounded by family and friends whom I know love me very much, and are extremely supportive.  You all have no idea how important your presence and love in my life has meant to me. How important it has been in getting me through every treatment, every hospital stay, and every other bump in the road.

To Jamie and Max, loves of my life and mini me's and Kav's, I wish I had had the choice to NOT have had to put you through the past year but I would go through it a thousand times so long as neither of you had to go through it yourselves. I thank God this isn't something you can inherit from me. I love you. And, no Max, Momma doesn't have to go back to the hospital unless I get sick again OR something else happens. 

To my mom, dad, and brother Chris, thank you for the over-the-top assistance you have all given me and my family in the past year. I know it wasn't always easy, life can be complicated, and it's been at times quite stressful. But know that no matter what, I appreciate all that you have done to help us.  Chris, you continue to help me and I appreciate everything you continue to do to help the kids and I at this time. Thank you I love you all.

To my OM, Diane, thank you for the support you gave. You of all people knew better what I was going through and no matter what I am grateful for the support and kindness you did show. 

Kav, thank you for taking on the additional responsibility of keeping our children for the first month while we figured everything out. Thank you for some of the shirts and the nightgowns that you gave me while I was in the hospital, and for the flexibility you provided in giving me time to spend with the kids when I was still in hospital. Thank you for continuing to be a friend through everything. Thank you Irene, for bringing the kids over after school so that I can visit with them on occasion. Cathy thank you for the magazines and other things to keep my mind off of where I was and I was going through.  And thank you all for your kind thoughts. I love you all.

Julius, thank you for lending me technology to keep my hands and mind off where I was and what I was doing and a chance to watch movies that make one laugh no matter where I was (40 year old Virgin anyone?). Also, thank you for your visits and continued thoughts and well wishes. 

T, Thank you for being there when I was officially diagnosed and for going through half of my biopsies w me, holding my hand, listening to me talk out my feelings when I was in the hospital, for doing what you could to make me feel more comfortable (less achy) and letting me know that the shorthair actually looked good on me. Thank you for the soups, the diet Pepsi's, the hats and scarves that you gave me along the way.

Darlene, thank you for your lunchtime visits when I was at Mayo (how perfect that you worked there!). It definitely broke up the day and I enjoyed our conversations. 

Diane W, its funny how things turned out, huh?  Your continued friendship means the world to me. I consider your family an extension of my own. Thank you for your weekly Starbuck visits w me, your prayers, and the laughter. And to Veronique and Linda, thank you for your clarity and prayers as well. 

Theresa, Angelica, Laura, Maja, Nikol, Jennifer, Art, Jack, Uncle Dick and Aunt Muriel, thank you for your visits, support and words of encouragement.  Nikol, I brought the sushi card w me to all hospital stays. And to Laurie. I kno u don't like hospitals but appreciated your support and caring regardless. 

To my doctors and nurses at both MD Anderson and Mayo, especially Dr Slack, Dr Ulrickson, Mary Peterson, Stacey, Gulnar, Kayla, Jessie, Beth, Margo, Nena, Janeen, Mark, Christine (Mayo),and so many others, thank you for your expertise and empathy and kindness. Thank you Beth for holding my hand during that first biopsy. I will never forget you. 

So many more to thank. I hope you all know the impact you have had on my life. 

I thought it worthwhile to recognize you all. 

Much love and gratitude. 

Dianne

My Daughter is So Awesome

This is what Jamie did in her last Girl Scouts meeting...Awwww (sniff, sniff). 

Getting to Know My Donor

While we are not allowed to disclose our names or where we live, I love to hear from my donor.  She lives in Germany, is about 43, and has twin girls who are 19 and going to University. I look forward to the day I can meet her and her family...assuming she is amenable to it. 

Me, Minus 1 Gallbladder

I had my gallbladder removed 3 weeks ago today. No problems and thus far I have not found anything I cannot eat. The doctor just advised that anything containing a high amount of total fat, that I eat it at home. For semi obvious reasons. Outpatient. Minimal pain. 

One less problem!

Meds Post Transplant

I thought it would be interesting to note the different kinds of medications I am on 6 months post transplant:  

Anti anxiety

Anti depressant

Pain meds

Fluconazole

Penicillin

Tacrolimus

Prednisone

Sulphameth

Acyclovir

Slow Mag

And this is for a "healthy" transplant patient!  =0)

Happy Halloween

I am not really in to dressing up for this particular holiday...it is 'celebrated' largely for my kids. However, I am wearing (my new Harley) orange shirt. Does that count?  

We Did It!

Jamie and I completed our very first 5K! Granted we walked most of it however there were a few bouts of sprinting/slow jogging as well.

Following is a picture one of the other racers took of Jamie and I walking before the race; they were kind enough to send  it to me, so I thought I would share it with you guys.

Getting Back Into The Thick of Things

Had my first meeting with the organization Apollo contracts with for displaced employees. I got some really good feedback and am looking forward to getting back to work. Wouldathunk?!?

October 2013 BeTheMatch.org Walk/Trot/Run

I am thrilled to be doing my first "race"even though I have no intention of doing anything but walking. AND my daughter is doing it with me!!!  

One very small way for me to give back to the organization whose connections gifted me with life. 

And thanks to all of you that have supported us in our efforts. 

Six Months and Counting!

While I have yet to see the official report, my doctor indicated that the initial report for my six-month checkup showed no evidence of the disease. Woo hoo!

They have started to reimmunize me. I received six shots in one day, and proudly wore my Band-Aids home to show my kids. Shots are a big deal for them after all.  

Thank you everyone for being so supportive of me and my family during the past year. It would have been so much harder to deal with without. 

A Chance to Reflect

While it is a topic of concern amongst the members of my family, I have chosen to take my kids fall break to go on a trip back east to visit family and friends.  During this trip, I will be doing a lot of driving. I'll get to see family, obviously, and friends, and I will also get a chance to see some things I haven't seen before like Washington DC. I'm really looking forward to the trip and I'm looking forward to the time that I'm going to have with my own head to sort through the things that have to be done now that I am healed. I think I need this. This is a trip I planned to take last fall, but had a feeling the "winds of change" were starting to blow. So I didn't take the trip last year and I'm glad I didn't. Because this is the year that I really think I need it. I'm sorry there are those of you who feel like I don't deserve it, need to take it now or whatever your excuse is. But I'm doing what I need to do for me. And if you look at it from that perspective, I hope you are able to take a step back from your own viewpoint and try to look through a lens that's a little closer to what I am looking through as you pass judgment on me.

Emotions

The interesting thing about the whole past year, is the emotions that you go through not only during the time that youare  fighting so hard for the right to live, but also the emotions that you have to go through once you've won that fight.

This time last year I felt horrible. I couldn't walk from one room to another without feeling like I was going to have a heart attack. But I'm a mom, and female, and I don't pity myself, so I just push. And in part I think that's why I got as sick as I did. But once I won my fight, there were a lot of things that I had to go through emotionally, that I chose not to go through last year when they were happening.

Last year, in the span of about two weeks, I was diagnosed and hospitalized and begun my treatment, I was laid off from my job of 23 years, and my husband filed for divorce. Even though we were already on the divorce track, it was still a lot to take in all at one time on top of everything else. But me being me, chose to deal with the most immediate concern which was being here for my children. So everything dealing with being unemployment, everything dealing with my husband all of those things, had to go on the back burner. I couldn't really think about them, I couldn't deal with them, I just focused on my fight to live. 

Now, however, I do have to deal with those feelings. I have to deal with anger and hurt and the betrayal that I feel towards some of the leadership at my former company. I have to deal with the timing and the conversations and the direction that I have chosen. And I have to deal with the fallout as it affects my children.  All on top of dealing with things like finding a new job, figuring out what I want to do short and long-term, and coming up to speed on the technologies so that I am the best employee my next employer is going to have. The unfortunate part is no matter how much I like my next job, that employer will never have the level of loyalty in me that Apollo had from me for 23 years. But I have a really good feeling about everything that's coming in the future. I have an idea of what I want to do long-term, and I know that IT and the money that I'm going to earn working in the IT field is going to get me where I want to be long-term, and it is going to be the kind of life that I want to live and the quality-of-life I want and I'm so excited.  But dealing with all that emotional crap, that sucks!

Time to Deal, Amongst Other Things

So the past year I have spent not vacationing, not taking it easy, but I've been fighting for the right to live. And that seems to be lost on some people who will go unnamed. Some people who should know better because they've been through something similar. I forgive them for how they chose to share their thoughts with me, wishing that they would have discussed their thoughts with me versus shredding me to bits andthinking  doing so was OK. But I'm not one to sit there and have a pity party. I think those who cast about such terms about others, are the ones who are most likely to sit there and sit in that type of a pool for his long as they want because they like being the center of that type of attention.  But that is not me.

I have a lot of work to do. No bones about it. Even though the doctors will not keep me from looking for work, of course their desire is that I don't work full time until I've reached the one year mark. And while I know I higher much more easily, my anxiety levels I'm not able to control very well yet, I am improving and these are all things that will help me to be better focused on my new job. But at the same time I'm glad that I'm not working yet because on both of those fronts, I would struggle. So I am working on being ready to flood the market branding Dianne 2.0 and see about getting back into IT and starting to turn a good living again.  

Those Are Just Small Bumps!

My recovery since transplant hasn't been flawless, but it's been pretty darn close. I've had some very minor brushes with graft versus host and then each case it has responded very well to treatment and gone away and not come back. The most recent problem that I've been dealing with is a small infection I developed in the skin on my back Surrounding a fatty cyst I've had since at least 2000. So I've been on IV antibiotics for the past week and it has responded very well and is pretty much almost a distant memory.

My rockstar status as a patient stands.

Graft versus host: I have had a rash on my back that responded very quickly to prednisone. Unfortunately the prednisone made me feel like I was going out of my mind because it was a high-dose. Thank God they are on the weaning me off prednisone process now and I definitely feel more like me.  

All's Well

Now that I am five months passed my transplant, things are going very well. I'm back at M.D. Anderson for my maintenance, and have a great doctor.

I've been lucky enough to have the most fantastic support system I think a person could ever possibly have going through this experience. This included family, extended family, friends, coworkers, former coworkers.  There were some people that I thought would be there that were nott, and some unexpected surprises of people who were there that I never in my lifetime would' I have imagined would be there.

For all of you, thank you!

D +13, Time to Go Home!

I still cannot believe today I get to go home and finish my recovery. Three weeks post admission. Woo hoo! I slept most of yesterday - FINALLY - and actually had little problem sleeping overnight. Hemoglobin, WBCs, and platelets are all moving upward. The only transfusion I had to get today is Magnesium. Mom, Chris and Dad are attending the caretakers class today at 9 and then a discharge meeting with me and my doctors around noon. Then its go-home time. After molesting my cats and dog for a while, and maybe some dialogue w my family, its back to bed for me.

D +12, Seriously?

Found out yesterday (my head is still swimming) that I was likely to be discharged 3 weeks after being admitted because I doing so well. THATS TOMORROW, 5/2. Is that because I am doing so well, you need the room for someone sicker, or some other wild reason I couldn't fathom in my stupor? Even tho I had had a few bad days they weren't cancer related...pain management. They have assured me it is because I am doing so well. WHEW! And HOORAY. Not tell my kids because they'll be at their Dads today thru the weekend and I don't want to distract them from having fun with him. n the meantime this will allow me to rest for a few days and reacquaint myself w my family and pets. But I am super excited to see them on Sunday.

Hemoglobin. 8.9
WBCs 4.8
Anc
Plafelets 55

Mom, Dad, and Chris have to attend a care giver's class tomorrow at 9 and I will prolly go home.around 1:00. No more Foley. Almost off all IVs. Switching all meds from IV to pill format. Need to start packing. After a nap.. Looking forward to getting more sleep at night!

D +11, Numbers are Normalizing, Praying Today I Feel More Normal Too

Good morning. I am doing better. Had a bit of a bad weekend and yesterday wasn't much better. i now seem to be on the upswing numbers-wise.

-Hemoglobin is holding above 9, not quite a norm of 12.

-WBC is at 3,6 today. Normal is above 3.5.
-Platelets at 50. Platelets normal is above 150.

I also have a couple of infections they're dealing with. My hair is falling out again. I expected this but had really hoped to avoid it. Silly me. My brother helped me trim it waaaaay back! Last push of Methotrexate occurs today. Plus sides magnesium, potassium and platelets. Yum!!!

D+5- +9

My head is spinning how at the same time i can feel completely overwhelmed with as many tests and talks and more tests, so little sleep, and yet try to play host to my visitors - Dad, Mom, Chris, Gregg, Deanna, Darlene, Diane, Theresa and Marcy, Laura and Marcy and Edie and Kristi'.s Brownie troop. The girls made me a card and all signed it. Jamie 4 x. But i have been exhausted not sleeping at night. Oh and Chris helped trim my hair off. Ok. I am ready to start healing.

D + 10, What a day!

Counts going up. WBCS for the first time, reading .6 vs "less then .1". FINALLY. Now my hemi's can begin to heal. Hadn't had a bowel movement in over 2 days. Well, I woke with my first bowel movement. Very early. And its "C diff Positive." I am on an an antibiotic for that I have gotten a chest XRay , and very painful ultrasound. Which led my oncology team to reduce the BC Pills by once a day and to prescribe something else go help clear out what they had done to thicken my uterus in in their attempts to turn off the bleeding. One more dose of Methotrexate which helps with engratftment and rejection. What I really need is sleep or something like it ....

D +5 Through D +9

The last 5 days have not so fun for me. 

D +4

Still have that underlying nausea but keeping food down today...hooray! Not entirely sure but think the hair on my arms and legs is thinning. You know what that means? My noggin would be next. If you decide to go, I will miss you my hair, my friend. I have lost 10 lbs in the last almost 2 weeks. Its good I arrived with "reserves." =0)

D +3...Uggggg

Started my day not feeling bad at all but when I vomited after only 3 bites of bfast, the itinerary for my day changed. Yes, my day yesterday was ruled by nausea. Typically the usual course of Adavan has worked well but not this time. Enter Fenergan (sp?). My old friend Fenergan, introduced to me at Banner. One dose and bye bye nausea...and then I slept for the next 4 hours. The highlight of my day were visits w friends. One of my besties since childhood, Darlene, who works at Mayo, came by to visit me during her lunch break. Before she left, her mom Judy had arrived to visit too. [Fenergan break]. Then another bestie, Diane, came by to visit last night. That was a nice way to end the day!

D +2...Still Feeling Good But Numbers Are Coming Down

Due to less sleep than I normally get over a two night period, period cramping (I miss my IUD), and generally nauseous following chemo makes for one tired and emotional Dianne. So this is going to be a rest day.

D +1...Woo Hoo!

Yesterday's transfusion went well. It was uneventful. My Mom and Dad were both there, a good friend, and my brother arrived just as we wrapped up the transfusion. Aproximately 440M donor cells were transfused. They were kind of surprised as the usual "collection" is less (I think they're used to seeing cells in the 200s).

So now we wait. My nader - or window where my counts are at their lowest following chemo - is between D+5 and +12, or 4/24-5/1. After that, then we should start to see white blood cells, platelets, etc on the increase.

As I was charting out my "+" days on a calendar and after I put a great big ol' star around my +100, found it fitting that it occurs in July... The month the United States celebrates its independence through fireworks. The +100 day is significant in my recovery...

D 0, Transplant Day has Arrived!!!

I did not sleep well last night at all. Excited and nervous and tired do not even begin to describe how I am feeling right now. My parents are planning to be here in my room for the transplant. I also have some friends coming up this morning and later this evening to check on me. The process should be fairly uneventful.

April 19, 2013 will become my second birthday - Dianne 2.0's birthday - a day that I'll celebrate every year hereafter. I will still remember Dianne 1.0's birthday because it is such a cool date. Woo hoo, two birthdays in one year!

Thanks everyone for your words of encouragement and strength, your prayers, and for being there for my family and I as we've gone through this process. God bless each and everyone of you. You will all be in my heart thoughts and prayers for life.

D -1

"Bunny juice" anti rejection regimen today. Seeing cross-eyed after the dose of Benedryl I just got. Regimen takes about 6 hours to complete. Will hopefully sleep thru most if not all of it.

D -2 And A Surprise Visit

Today's medical activities include symptom management and my last dose of cell killing chemo. I am still nauseous but have found canned Campbell's Chicken Noodle soup to be the easiest to stomach. It actually smells and tastes appetizing. Nacho Cheese Dorito's a very close second (thanks Dad!).

Was paid a surprise visit by my friend Tonya, whose daughter and mine have been BFF's since they met at Sunrise 5 years ago. It was nice catching up with Tonya. It is so easy to get caught up in our lives that we forget to stay in touch with those around us. To stay connected with one another. I need to do a better job of this.

D -3 And A Side of Nausea

16 doses of Busulfan down, 2 of Cytox today and tomorrow, anti rejection meds on Thursday and then the transfusion on Friday (about 9:00 am). Then we wait.

In the meantime, my numbers are still good but my sense of smell and taste has been impacted. The worst is that whatever they use to clean the linens is making my nausea worse...I cannot stand the smell. However, I have been told I can have my own pillows brought in. And pillowslips. Thank you Jesus! Anyone got some Nacho Cheese Dorito's laying around?

D -4

Slept well. Numbers are still up. Platelets actually went up.

11.7 hemoglobin (10 something yesterday)
235 platelets (220 something yesterday)

Apparently next week is when we start crashing. Yay! In the mean time I will enjoy the fact that I still feel good. I have 4 more doses of Busulfan...will be done w those by 4:00am tomorrow. Tomorrow and the next day I get one dose of Cytoxin, each lasting about an hour or two. The day before the transfusion the focus is on antirejection. I will be so glad when I am done with chemo.

D -5, A Visit w/Kids and A New Room w/A View

Still feeling pretty good with the treatment. The docs upped the dosage to 78 mg from 50 yesterday. One of the nurses joked I was getting my money's worth. Lol. Doc Klein said I WILL lose my hair and that the Bu-Cy regimen isn't as likely to generate the chemo fueled fevers my past regimens have. Numbers are still at healthy levels though they are going down.

The chemo is definitely having an impact on my memory. Yesterday Dr Klein was Dr Stein on the way in and Mr Klein on the way out of my room. I'm sure he's heard worse. Kind of funny tho.

Yesterday my nurse asked if I would be interested in having a room with a window that looks outside vs the Mayo atrium. Like "Duh!" So this evening one of the aids throws open my room door and sees I am not packed. "You're not packed?" Guess not. But now I am in a nice corner room with two windows that look outside.

Got to see my kids and mom/dad/brother earlier. The only time I will get to see my kids during this gig...while my numbers are still normal. Still, it was in a "quiet room" and I had to wear a mask. Max was a bit freaked out by my catheter site. Hopefully he won't remember much of this when he is older.

D -6

Feeling good. Got some good sleep last night, the first time in 3 days. Have a really good nurse, Jennifer, who kind of reminds me of my cousin Deanna in her personality and some of her expressions. 5 of 16 Busulfan treatments completed. More than 25% done with this chemo regimen.

Visitors

There are no restrictions except that you must be over 13 and not sick. I have been asked about this a lot so I thought post on the topic.

4E60, Pod D

D -7, The Start of Chemo

My first dose of Busulfan begins today at 8:00 am. I feel just fine now. The site where the catheter was inserted just feels sort of like your neck feels when you slept on it wrong...just a bit sore. After the treatment i will have blood drawn every 15 min for 2 draws, then 30 min later then once an hour. They are closely monitoring my busulfan levels so that they can adjust treatment based on those levels.

Got my deprovera shot today. Apparently IUDs are a risk in terms of sources of infection.

Thanks to all for your continued thoughts and prayers!

D -8, All Admitted

Yesterday was a blur...much more than the days leading up to it for sure.  But there is only so much one can do before tou just have to "call it good" enough. So Dad and I arrived just before 8:30.

Gearing Up for Transplant

With 7 days left between now and the start of my recovery process. I am anxious to get started but afraid of what the experience will be like.