Day + 1785: The scars of your love remind me of us…

Oct 20th, 2015 by

“They keep me thinking that we almost had it all”

10/20/2015: After being assured repeatedly that everything was final – nothing could go wrong, Laura and Ryan received a devastating phone call the day before bringing their daughter home. The adoption is off.

We are heartbroken….we are stunned….we are so many things and there aren’t enough words to describe how we feel….too many emotions….it feels like our child has died….The adoption of the child we have loved so dearly since seeing her picture and have put so much of our hearts and love and emotions into….will not be taking place….we feel lied to…betrayed….politics suck….so does the Hennepen County government…..It is just too painful to say anything else….maybe some day….but I thought I should put the word out that the adoption won’t be able to go through through no fault of ours….and we are heartbroken…”


No words are adequate – we are so sorry.

Day +1780: And if you want this world to see a better day…

Oct 15th, 2015 by

Will you carry the words of love with you?”

10/15/2015: Our dear friends, Laura and Ryan, are adopting a child. Laura wrote the following on her CaringBridge site a few days ago. Moved by her heartfelt words, I decided to share them here (with her kind permission).

We had a wonderful day yesterday spending the whole day with our daughter! We went to Ihop for breakfast, went to the church she attends, and spent most of the time at the Mall of America! We love her so much! This Friday she will spend all day at our house! We can’t wait! (No school Friday.)

Some of you may wonder why I update with such little updates about our daughter (and so often!)… me, it is all in the process of having a bone marrow transplant.

You become sick and go through various treatments that make you sick. These treatments and sickness take so much away from your “normal life”….your job, friends, time with friends and family, etc. Then you need a bone marrow transplant. And that makes you even sicker. And takes away pretty much all “normal life” as you know it. You miss out on so many things, you lose so much…..and yet as the years go by after the transplant… just get sicker and sicker and have more and more complications as the result of the transplant that has saved your life…..but slowly, ever so slowly… begin to see a light at the end of the tunnel….and the complications become less….yes, they are still there….but they have become less and less severe….and suddenly some of the “normal life” comes back….but it is not the normal life that you once had or dreamed of… is a life altered and changed by going through something so complex and having so many severe, awful complications. Suddenly, you have to learn what your new normal is and accept the things that you have had to give up and won’t get back.

We always discussed that we wanted kids and that we would have them soon after marriage but getting sick the month of our wedding and being sick our whole first year of marriage and having the transplant ten days prior to our one year wedding anniversary changed those plans (along with so many others). Chemo and radiation to your whole body wreaks havoc on your body and changes so many things. But finally after years and years of major complications, I was getting healthier…. And we knew that we could bring a part of our “normal life” back…We started this process (adoption) at the beginning of January, the process to have a child, a child to love and cherish….and we have that child….a girl…whom we love so dearly…..and we are so excited….just as new parents are excited about having a baby….we are so excited about having our child and spending time with her….but for me it also brings back a slice of “normal life”….

I don’t say all this to complain or make people feel sorry for me….but for people to truly see just how much being sick and having a transplant can change your life, your goals, your dreams. I also don’t want people to think we are just adopting to fulfill a goal or dream….we are doing it because we feel we are at a time in our life where we are ready to have children and support them and love them as best as we are able to….and just as most couples want kids….so do we….and we have been given that chance through adopting our sweet and precious daughter….

So I write all the updates about her because really in the end….it is still a part of the process of the transplant….this may not make sense to people, but it makes sense to me, and that is all that matters…..a part where we are at the point where we feel we can have children….a ray of light from the light at the end of the very long tunnel….

~Laura Evans

For those who are new to our blog, Laura had her bone marrow transplant before Karen. Her strength and words of wisdom (and her cat, Simon) helped Karen gain the courage to go through with her own life-saving transplant a year and a half later. Over time, they found they had much more in common and declared themselves to be “transplant twins, separated at rebirth” (an inside joke of sorts – no, she was not Karen’s donor and not related by blood but is surely family nonetheless!)

Congratulations, Laura and Ryan! We love you and are happy and excited for you and your family. We can’t wait to meet our newest niece and to see all of you at Karen’s 5th rebirthday celebration next month.

Karen & Michael

Day +1763: You-you-you’re just my type…

Sep 28th, 2015 by

“Oh, you got a pulse and you are breathing”

9/28/2015: September will soon be eclipsed by October like yesterday’s moon.

The days and months have slipped by, and Karen is planning her 5th Rebirthday Party – surreal is the thought that at one point we rationalized a 6 month prognosis “to live” as a long time.

The past year has been “normal” – chronic GvHD persists, and so do regular and routine trips to Johns Hopkins. The year has been very hard on our furry family – poignant reminders about the randomness of life. On the event horizon is an MRI based on some nerve pains in Karen’s neck and ear — note: all pains, aches, sniffles, and coughs are always a little scarier than before, not in the sense of losing the perception of youthful immortality, but that nothing is ever safe after Leukemia (MDS if you want to argue blasts or cytogenetics). Yes – this MRI is for that annoying little sidetrack of the throat stuff.

However, a day is a good day – kittens roam the house, and we are both here to enjoy things in our own little ways – Life!

So off to plan Karen’s birthday theme for this year – still keeping the tradition of a gift a day between our anniversary and Karen’s birthday. But, the big one for this year is the Rebirthday Bash, maybe just as significant or as arbitrary as day plus one hundred; but be that as it may – hope you can be with us, even if in spirit only, on Karen’s special day.

So maybe you can sing along with the second tag line in the post…..

“… They say it’s your birthday…
… we’re gonna have a good time…”

Day +1551: I can see clearly now the rain is gone…

Feb 28th, 2015 by

“I can see all obstacles in my way
Gone are the dark clouds that had me blind.
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.”

2/28/2015: I was fitted and trained with my new PROSE lenses this past week at Wilmer Eye Institute, Johns Hopkins. PROSE is an acronym for “prosthetic replacement of the ocular surface ecosystem.” I wrote notes daily as I progressed with the intention of rewriting and elaborating for my blog post. However, I’m feeling lazy so simply posting my unedited notes. Please let me know if you have questions, and I’ll write more.

Day 1 – 2/23/15
Dr. Hessen first administered a quick eye test to ascertain my baseline. She then inserted the lenses with no difficulty on first try. The right was itchy and the left a little uncomfortable. However, my left eye distance vision was perfect. My right eye vision was still blurry – it might not be correctable but she said she will try. She looked in my eyes with the microscope and determined that both lenses had loose spots, the left more than the right and the reason for the slight discomfort. I spent the next 3-1/2 hours wandering around Hopkins to give them time to “settle in” before I got remeasured. I sat in my car and verified I could see the dashboard ok. I tried on 1.50x and 2.00x strength readers at the optical shop and determined I could read with them. When I returned to Dr. Hessen, she re-examined them with the microscope and ordered a better fitting set to try tomorrow. I then went for a training session with Michelle, her assistant.

First, I had to remove each lens using a small plunger:
1. Wash hands.
2. Hold small plunger upright in hand on opposite side from eye
2. Put drop of saline solution on plunger.
3. Hold eyes wide open with lashes using hand on same side as eye.
4. Look straight ahead into mirror and place plunger at bottom center of iris (colored part of eye, 6 o’clock) until it “grabs.”
5. Tilt down and pull.
6. Hold lens gently by edge and rotate plunger to outer edge until it comes off.
7. Drop lens into case (white is left, blue is right).

Next, it was time to learn to reinsert using larger plunger.
1. Right lens has one black dot, left has two.
2. Hold plunger sideways, squeeze and place lens on it.
3. Hold plunger and lens upright in opposite hand from eye, and orient lens so dot is top center (12 o’clock).
4. Overfill lens with saline solution (note, let bottle pour a drop at a time; don’t squeeze a stream, as that will cause a bubble).
5. Hold eye wide open with hand on same side as eye, and lower head to face mirror flat on table.
6. Keeping lens level (don’t spill), stare directly down into center of plunger and place lens on eye until it “grabs” – will feel cool fluid first but that’s not far enough – keep pushing.
7. Let go of lids.
8. Squeeze plunger to release and remove.
9. Look in eye to check for bubble (or note bad vision indicating bubble) – if there’s a bubble, remove and return to step 1.

When I failed on the first try, Michelle said no one gets them in on the first DAY, but I think she was just saying that so I wouldn’t get discouraged. I got the left one in on my second try. The right one only took a couple of tries also but I had a bubble so had to start over. I think I did great for a first day! More practice tomorrow, plus I have to learn the cleaning and sterilization routine.

Dr. Hessen will try me with distance correction only again tomorrow and then with one distance and one near (monovision) on Wednesday to see which I prefer.

Day 2 – 2/24/15
Today did not go well. I made the mistake of putting Restasis in my left eye this morning so it was very irritated. Several traffic lights were out on the main drag around Hopkins and my usual parking garage was full. The guy in front of me at the deli got the last cherry Danish. FedEx was more than 2 hours late with my new lenses. I had a terrible sinus headache – my cheeks, eye sockets, forehead all sore and throbbing. The lenses finally arrived at 1:30. I got the right one in on my 3rd try. When I tried to do the left, I realized my eyeball was extremely sore. After a few failed attempts, we decided to let Dr. Hessen insert it for me which she did easily on the first attempt. The fit was better but still a little off. My left eye vision wasn’t as good as yesterday, due to the irritation, but the right eye vision was a little better. Tomorrow, I’m going to try distance correction in my left eye (same as before) and near vision correction in my right. If I can adjust to the decrease in depth perception, this will (in theory) enable me to do everything without glasses. If I’m not comfortable with it, I’ll stick with distance correction and wear readers and computer glasses as needed. We decided to give my eyes a rest, so no further training today. I came home, took Sudafed and Zithromax and spent the rest of the day and most of the evening on the sofa. Early to bed with Mucinex and Aleve. Tomorrow’s bound to be better.

Day 3 – 2/25/15
No Restasis last night or this morning. My sinuses felt much better. The traffic lights were all working again, and I got the last cherry Danish. My lenses arrived less than 30 minutes late and they were a perfect fit this time. I got them both in on my first try but had bubbles so had to remove and reinsert – at least it was more practice. My left eye was corrected for distance vision and my right for intermediate which had the potential to badly affect my depth perception. However, I think because my right eye vision has been worse than my left for so long, I barely noticed. Reading wasn’t as clear as with no glasses or lenses but doable. I tried on a pair of 1.25x readers and everything looked very good, even fine print. I could see the computer screen very well without glasses. My left eye still felt a little irritated but OTC lubricating drops helped. When Dr. Hessen checked them in the afternoon, she said they looked like a perfect fit, and she was pleased that I did so well with the “monovision.” Because I’m doing so well, she altered the routine for tomorrow. Instead of coming in for the morning appointment, she instructed me to get up, insert them by 8 a.m., and come to the afternoon appointment with them still in. I had the option to wear them home today but I was nervous about driving without sunglasses (mine are prescription) so opted to let her remove them and put them in a case for me. Michelle instructed me how to clean and sanitize them overnight (about a 10 minute procedure, not nearly as bad as I expected). She keeps telling me most people have way more trouble learning to use the lenses. I’m basically a day ahead of schedule even with the loss of training time yesterday. I nervously cleaned the lenses at home tonight. They seem so fragile but it was easy. Fingers crossed that tomorrow morning goes well.

Day 4 – 2/26/15
8-8:15 a.m. I put the lenses in by myself this morning. It took me 3 tries on the left but I got them first try on the right. I don’t have to go to Wilmer until this afternoon. Good thing since it’s snowing! Michael drove me to my afternoon appointment. Dr. Hessen said both lenses looked beautiful and that there was no need for me to return tomorrow. She asked me to see her again in three months to assure no final tweaking is needed. I can stop using Restasis (Hurray!). I should continue using OTC lubricating drops a couple of times a day so edges of eyes don’t dry out. Instead of using Genteal ointment at night, use Genteal gel. Continue hot compresses morning and night. If I wear makeup, put it on after inserting lenses. My eyes look bloodshot all the time. They’ve been like this for years post transplant due to the damage from chemo, GVHD and general dry eye. I was disappointed when Dr. Hessen said that the lenses probably won’t change that appearance, despite my eyes feeling much better and healing medically. I’ll know within a couple of weeks if there will be any cosmetic improvement. At least they won’t continue getting more bloodshot.

I saw Michelle for a few last-minute cleaning instructions. Drop plungers in 50% peroxide + hot water for 20 minutes every two days and air dry to sanitize. Daily, clean tips with alcohol wipes and air dry. Hard case should be stored dry and lenses should be stored dry in them if not wearing for a day. She gave me some information for ordering supplies.

8:20-8:35 p.m. I removed the lenses on first try, cleaned and sanitized. Eyes feel good after getting the lenses out. Fantastic that I wore them 12 hours. I can keep them in all day/evening but must remove before sleeping daily. I was worried that having to insert and remove them daily would be very difficult and thus a deal breaker for me but it turns out to be MUCH easier than expected. The benefits of being able to see well again and having my eyes less irritated far outweigh the inconvenience. Why did I wait so long to get these?!

Day 5 – 2/27/15
It was great to sleep as long as I wanted this morning. I waited a couple of hours until I was thoroughly awake to put in my lenses. I got them both in first try but the left had a smudge so I removed and rinsed it with saline, then reinserted, again on the first attempt. My vision is excellent for distance, very good on the computer without glasses and excellent close-up with 1.25x readers. I can read without glasses but it’s more comfortable with.

I was tired after a late dinner so removed and cleaned them around 9:30 p.m. with no problems. Cleaning routine was about 10 minutes.

P.S. Bragging rights – Michelle told me, “You are truly the best student I’ve had so far!” :-) Michelle, that must be because you’re the best teacher.

Day +1519: Money get back – I’m all right Jack…

Jan 27th, 2015 by

“…keep your hands off my stack.
Money it’s a hit
Don’t give me that do goody good bullshit
I’m in the hi-fidelity first class traveling set
And I think I need a Lear jet.”

1/27/2015: Just got the mail with some very good news from my insurance company. It would have been nice to have had this a couple of weeks ago, before my procedure but better late than never!

“We review health care services requested for coverage under the terms of your health benefit plan to determine if they are medically necessary, as defined in your plan document. We received a request to review services for you. Based on the information submitted, we have determined that the treatment is medically necessary.

Here are the details of our decision:

  • Doctor/Health care professional: Kofi Boahene
  • This determination is effective for: 1/16/2015
  • Description of services

  • 14301 Adjacent tissue transfer or rearrangement, any area; defect 30.1 sq cm to 60.0 sq cm
  • 15825 Rhytidectomy; neck with platysmaplasty tightening (platysmal flap, P-flap)
  • 15876 Suction assisted lipectomy; head and neck
  • 15878 Suction assisted lipectomy; upper extremity”
  • Yippie!!! (an extra tag line especially for Chris)

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