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)

    Day +1517: Hold your head up, hold your head up…

    Jan 25th, 2015 by

    Day +1“Hold your head up, hold your head high
    And if they stare
    Just let them burn their eyes on you moving
    And if they shout
    Don’t let them change a thing what you’re doing.”

    1/24/2015: The tag line came to mind while Michael was tending to my neck yesterday, repeatedly chiding me to “Hold your head Recliner Sleepup.” It thus occurred to me that I should do a post-surgery blog update. I mostly stay positive but am moody some days and will remain nervous about any possible negative aftereffects until everything heals fully.

    As you know if you read Michael’s last post, I had neck surgery on January 16th to clean up the long-term internal scarring and fibrotic tissue from my 2012 bilateral neck dissection and subsequent lymphedema. Although I had it done for medical rather than cosmetic reasons, the procedure was essentially a neck lift so I have cosmetic benefits as well.

    It’s funny, my neck looked best the first day after my surgery – neatly stitched incisions, no visible bruising, beautifully Day +7smooth and well defined chin line, little swelling. Tylenol remedied the soreness by day and 5 mg. of Oxycodone worked great at night. I didn’t need any pain medication after the first few days. I’ve worn a “jaw bra” (compression mask) all week and slept in my recliner to help prevent swelling.

    As the week progressed, the bruising made its way to the surface and my neck turned faint shades of red, purple, and yellow. Still, it wasn’t nearly as bad as I anticipated. When the bit of swelling went down, my chin wasn’t as smooth, and some of the fluid seemed to be returning. Towards the end of the week, the stitches became irritated and the scars bright red. I was very happy to get my stitches removed on January 23rd. I wished Dr. Boahene had used glue instead like Dr. Gourin did with my 2012 surgery. As far as I know, sutures and surgical glue are equally effective; it’s more a matter of surgeon’s preference. Anyway, the redness is fading now, and the holes from the stitches are hardly visible. Day +9Healing is progressing faster than I expected. In another week, I’ll start using silicon strips that look like cloth Band-Aids on the scars. I used them before, and they work great to fade and soften the scar tissue.

    I had to skip my UVA1 phototherapy last week and am waiting to hear from my doctors whether I can resume treatments this week. My shoulders are doing surprisingly well, possibly because I move around less sleeping in the chair instead of the bed. My tossing and turning at night bothers the skin GVHD spots on my back and shoulders.

    Guess that’s all for now. Once again, life is good and I’m happy to be alive. Michael and I hope our readers are doing well. We’re sending extra healing thoughts out to Mike and Deb.

    Tag Lines

  • Day +1492: Pompeii, Bastille (IDed by Cathy)
  • Day +1492: Just Another Day, Caitlin Crosby (IDed by Cathy)
  • Day +1492: Disturbia, Rihanna (IDed by Cathy)
  • Day +1492: Tequila Makes Her Clothes Fall Off, Joe Nichols (IDed by Cathy)
  • Day +1492: Take Me to Church, Hozier (IDed by Cathy)
  • Day +1492: Radar Love, Golden Earring (IDed by Cathy)
  • Day +1492: “My God, I’ve heard a rant like this before,” quote from the film, Dogma (IDed by Cathy)
  • Day +1508: The Final Cut, Pink Floyd (No one IDed)
  • Cathy is a superstar! Thank you for taking the time and effort to identify seven out of eight!

    Day +1508: “…I held the blade in trembling hands…”

    Jan 16th, 2015 by

    “… Prepared to make it but just then the phone rang…
    … I never had the nerve to make the final cut …”

    Dr. Kofi Boahene4 am – wake up / feed cats / birds / warm up car / coffee
    4:30 – leave house
    5:15 – arrive at Johns Hopkins
    5:30 – Karen to pre-op
    7:15 – I go visit her in pre-op / picture with surgeon
    7:30 – Karen to OR (scheduled for 2 hours)
    7:35 – snack bar for coffee and cherry Danish and waiting
    8:00 – searching thru songs in my head and noting: used all of those before …

    The objective of today’s sequel is to clean out “stuff” left over and accumulated from neck dissection round one. Hopefully improve movement and lymph flow to remove edema. I asked the DR if they would be doing a biopsy of the area and he stated only if they find something unusual. Not willing to tempt the odds with the “habitual” outlier Mausi (Karen to the rest of you), I stopped my question there.

    Note: tagline warning: only very loosely ties to surgery.

    8:15 Standing by . . . _ _ _ . . .
    10:14 OR called – running a little long; nothing to worry about….
    10:32 Status board changed to “post OP”
    11:05 Karen is still sleeping off the sedation. Nurse brought prescription out along with word to expect post OP to be at least 90 more minutes.
    12:04. Karen is awake, sitting in recovery. We are getting instructions now. Nurse is looking for the resident.
    12:15 Chatted with doctor, all is good. Karen is resting waiting to gather energy to go home .
    15:00 We’re home. Karen and Maya are napping. Just another day … You all come back now! (Ok not now)

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