A Day in the Life of an Impatient Patient

Thanks to all of my supporters who are still helping me get through each day!  All the cards and messages bring a smile to my puffy face!

So, this kinda blew me away:  WordPress recently named my blog one of the “Blogs of the Day,” which they describe as a blog that has gained the most in popularity!  I was #100, and so shocked to be on their list 🙂

OK, so here we are at Day 88 post transplant, and I can hardly believe it as I write.  Day 100 (March 24) is quickly approaching, which will be a great milestone to reach, but I have a feeling not much will change with my current sitch ~ maybe less frequent visits to City of Hope, maybe I’ll get my PICC line out (if Dr. F is pretty certain I won’t need anymore transfusions of blood or platelets), maybe less meds, maybe fewer dietary no-nos, and maybe fewer social restrictions.   One thing that for sure will happen right around Day 100 is my fifth bone marrow biopsy – wooo hooo!  Can’t wait for that!  I still have the immune system of a newborn and no protection from any immunizations I’ve ever had, since that was all blown away by the chemo.  At the one year mark (December 14), I will begin to get re-vaccinated with all of the shots I’ve had in my lifetime – wooo – the f – hooo!  Can’t wait for that, either!

My parents drove me up to COH for my visit last week (Todd was at a Semester at Sea board meeting), and they got to meet Dr. F, who could be Steven Spielberg’s much better looking twin.  He smiles and laughs constantly, and is always positive.  He calls me ‘kid.’    My parentals agreed with me that he is AMAZING, and on the ride home, we had an adoration fest for Dr. F.  My scores from that meeting were great, actually the word Dr. F used was FANTASTIC – maybe I’ll call him Dr. Fantastic from now on…  yeah, I kinda like it.  Has a little 007 ring to it 🙂

My Fantastic scores from March 7:

Hemoglobin:  11 – seems like I was always transfusing around 8-9.  (normal for a female is 12 – 15.5)

White Blood Cells:  6,300 – a far cry from when I Blutarskyed at 0.0! (normal is 3,500 – 10,500)

Platelets:  174,000 – my all time low was 9,000, when I had to officially retire from knife juggling – the risk of bleeding to death was too great.  (normal is 150,000 – 450,000)

LEASON’S MARROW’S GOT SKILLS!

Bubble life is so exciting, I can hardly f-ing contain myself!  Check out a typical day and tell me you’re not jealous as hell!

10am  wake up (well, maybe this part has you a little jeal)

I’m using various meds to help me sleep, and they produce the most amazingly vivid dreams, but these are interrupted when I get up 5 or 6 times a night to pee.  In the morning, when I get up and it’s light outside, I do a double take at the bald creature in the mirror and at that point, the dreaming’s over.  I’m snapped back to reality likety-split.

10:10am  wash hands/breakfast

This usually consists of cereal (no nuts allowed) with skim or soy milk and toast with avocado and garlic salt, but no pepper – not allowed on the f-ed up low bacteria diet.  Oh, and only smooth skinned avos that have been scrubbed with soap and water) 🙂

10:20am  wash hands/morning pill popping

IMG_1100I take these down with one of the liters of water I’m required to drink a day:  Acyclovir (anti-viral), Amlodipine (blood pressure – I have very low blood pressure normally, but some of my other meds make it go very high), Magnesium (I’m low), Mepron (for the lungs – this is the bright yellow liquid that resembles lacquer in every way – it is the most heinous thing you can imagine), Pantoprazole (antacid to help stop all these other drugs from tearing my stomach apart), Prednisone (steroid – trying to beef up my biceps), Tacrolimus (immunosupressant which helps my body play nicely with Leason’s marrow), Ursodiol (liver/cholesterol), Voriconizole (anti-fungal)

I then wash my hands again and brush my oh-so-sensitive teeth and rinse with prescription strength Biotene mouthwash and Nystatin (anti-fungal for the mouth)

10:30am  shower (after covering my PICC line with Saran Press n’ Seal) and change into sweats (usually UNCL) and a fresh new beanie

11:00am  wash hands

11:05am  sit down at my computer to catch up on emails, Global Grins biz, Facebook, etc.

1pm  wash hands/lunch

I usually have soup or a sandwich, but no lettuce or tomato is allowed.  (I would rather be attacked by hairy spiders than eat a tomato, so no big.)  I down another liter of luke warm tap water with my lunch.

1:30pm  wash hands/afternoon pill popping

As of now, I only have one pill to pop in the afternoon:  another Ursodiol

1:40pm  wash hands/prepping for dinner/UPS package interceptions

IMG_1102

I have lots of cookbooks, but for some reason, I’m obsessed with Zov’s cookbook lately, and every meal has been fantasmic!  Beef Stroganoff, Meatloaf, Swiss Chard with Lemon and Pine Nuts, Marinated Beef and Chicken Brochettes with Homemade Tzatziki Sauce, Roasted Cauliflower.   Not just so-so.   I’m telling you – DELISH!

3:40pm  washing hands, movies, sewing, reading, what ev

5pm  beach walk with beanie, mask and boots

This is my chance to get some fresh air and have some fun with my newest obsession:  Crushing mussel shells and sea weed bulbs that have washed ashore with Ugg boots.   I love the sounds they make and the feeling of power 🙂  Todd runs interference between me and any dog that comes our way.  We regularly see dolphins, sea lions, pelicans, sandpipers, stand up paddlers, surfers, and skimboarders.  Lately, we have hit it just right with really low tides, but last week, the tide was coming in and we weren’t paying attention, and the surf got to within a few inches of us, so we were forced to climb up a sand burm to escape getting drenched.  It proved that I’ve still got some serious speed, even with my f-ed up hematoma.  Have I mentioned that HAFATS? (Hematomas are Fugly and they Suck)

6pm  wash hands/dinner

Well done protein and cooked veggies a la COH low bacteria sucky diet.  Thank God Zov has lots of tasty recipes that oblige.

6:45pm  wash hands/evening pill popping

Acyclovir, Magnesium, Mepron, Tacrolimus, Ursodiol, Voriconazole

7pm  tv with feet up

Have I also mentioned IHFATEOML?  (I Have Footballs at the Ends of my Legs)  I’m becoming quite concerned that the heaps of shoes I have ordered online and successfully transferred from the UPS man to the back of my closet undetected by Todd are not going to fit when the time comes that I can actually wear them!

9:50pm  change (or not) for bed, more brushing of sensitive teeth, mouthwashing with Biotene and Nystatin

10pm  wash hands/bed time pill popping

Amitryptaline, Ativan

Bring on the dreams!  Damn it – I have to pee 🙂

Posted by

I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

37 thoughts on “A Day in the Life of an Impatient Patient

  1. Jos, I totally understand why your blog is in the Top 100! You are an incredible writer! I think you have missed your calling! You should really publish your blog in a book. Maybe we should have a contest as to what the title would be. I suggest HAFATS.
    Keep up the great attitude. I know it can’t be easy but everyone sure admires your strength! You are one in a million (as is your F______ ordeal you are dealing with!)
    Love ya, Nancy

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  2. You are just awesome! A wicked soldier for sure!! I, too, LOVE that Zovs cookbook. Will make a dinner for us in honor of you tomorrow night! Heal girl! Heal!!!!! Good girl…….:) XOXO

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  3. So good to see you and Tod decked out in your colorful cozy sweats enjoying your afternoon beach walks (sorry about the nears miss with Roxy). I’ll be sure to leave the seaweed bulbs behind for your popping pleasure alone.

    …still hoping your blog will become a book and find its way to Ellene DeGeneres. You better start practicing your dance steps!

    Air hugs!!

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  4. Hi Jos,
    I have a friend who also has been receiving treatment at the wondrous COH. She absolutely loves her doctor as well,(he basically saved her life) and after hearing your Steven Spielberg comparison, I am now convinced her Dr. F is your Dr. F! This guy well deserves every accolade we can muster – he is truly Freaking Fantastic! So happy you are both in such good hands.
    Much love to you all

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  5. Jos,

    Your blog is #1 in our house! Great news on your scores and we are looking forward to day 100. I love the schedule update, too!

    Hayles is loving semester at sea and told us that Burma was her favorite place so far followed by Hong Kong. She is doing great and we can’t wait to see her soon!

    Love you and we are praying all the time! Xoxo

    Gretchen and Dick

    Sent from my iPhone

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  6. So GREAT to hear from you!! Hang in there you’re making AMAZING progress!!!!! Still thinkin about you all the time. Hugs!!!!

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  7. OK – the amount of pills alone would do me in!! Is the gag reflex happening??!! Joselyn you are amazing and we think and talk about you often 🙂 Much love from all the Churm’s! Keep fighting. Cinda

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  8. Awesome seeing you guys on your beach walk! You are beyond inspirational and not surprised about the blog….talented is an understatement !!! Wonderful to see you on the recovery side of this crazy journey…..xo

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  9. Way to go on the blog recognition! You deserve it because it’s really inspiring, witty, thought provoking, gut wrenching, powerful, amazing, truthful, meaningful, love filled, great use of naughty language, did I say hilarious and much more…

    LOVE YOU!!!

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  10. You are awesome! Great work on the blog….I love all your entries…don’t ever stop! So glad your recovery is going so well….

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  11. Jos – I think you have so many followers because you have made such a sucky situation sound liveable and people just love you!! I think writing is your new profession – book in the future? How great was today – hope you got a long walk in and soaked up all the sunshine! I’m really in wedding mode now – April 20 is coming up fast and we are all looking forward to the big day. Like I said last time some of those hair styles might be fab for the girls haha. Well, we are all thinking of you and send our love – xoSue

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  12. Blog rated 100? Come on – It’s way better than that, and number 1 with everyone we know. By the way, there are a lot of people who follow your blog that you haven’t met yet. They continually ask us how you are doing and have taken an interest in your health. Your day doesn’t sound like much fun, but way better than bubbling it at COH. It will continue to get better – just keep up that kick ass attitude and you will be fine. I am waiting until Dr. Fantastic loosens up on your diet and I will come down and cook something sinful, but we have to wait until they let you have a little vino with dinner. I like Zov’s food too. I have her first book, but not the one you have. You are a great writer Jos – mixing the pain and humor of your current life. Thank God for those walks on the beach and to experience the magic between high and low tide.

    Love you, Lynn and Carolee

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  13. Jos,
    I love you so much. And I love the FANTASTIC scores. I am grateful that there are Dr. F’s out there doing good work, bringing you back to us. You are not nearly done on this planet as evidenced by your recently revealed talent for writing. You have the BEST attitude and outlook, and you are sharing it with all of us in the most amazing way.
    XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

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  14. I just love you Joselyn…you make me smile and now I can LOL over your thrilling blood results. You are a miracle! Thanks from all of us who can only watch and pray.

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  15. I love your positive attitude. The counts look great, and you are on your way! BTW, I hate tomatoes too! We are thinking about you and admiring your courage.

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  16. Congratulations on your Blog that is awesome! I am sure your courage , humor and Rock Star attitude has inspired all your followers.Sounds like the finish line is getting close Yeah!!!!. Even though we are not able to give you a big hug and show you how much we love you we are with you every step of the way..Love you so, Jennifer,Chanel, Trent, Weston and Savannah.

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  17. What can I say? Obviously, this isn’t Kansas anymore, but just reading your feisty rendition of medications de jour tells me you’re SO much better. We are all so happy for you. You’ll be back in “Kansas-by-the-sea” full swing soon, and all the inconveniences and modifications-of-life-as-we-know-it will shrink in importance. The pure joy of it all is that you are with us, getting stronger, and on your way to full-force Joselyn. Here’s to you! S3

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  18. Hey Jos, I loved your description of your beach walks, so sweet! We all know you are a fighter and you are winning this battle. Onward mighty Trojan!!! We are all pulling for you, as always! Cookie, Pete, Sam and Tyler!

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  19. Congratulations on your NUMBERS!! We have all been sending so many good thoughts and prayers your way you had no choice but to get better. No One Fights Alone!! Love reading your blog and so proud of your courage and strength!! XO Sheryl

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  20. Hi Jos,
    I love reading your blog. So glad to hear you are doing better! We are rooting for you. Keep up the handwashing & pill popping!

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  21. Your count numbers seem fantastic!!!!Hope you are feeling better every single day. I think of you and says prayers for you daily.
    Karen Kushner

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  22. Great news about your counts!! That is definately ALOT of handwashing–but worth it. It is so inspiring to read about your journey of recovery.
    xo Elizabeth

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  23. Numbers….
    Blog – #1 in the OC, USC, FHS, BLAB and USA (what’s this 100 crap from Word Press…you’re numero uno!)
    Counts – amazing…you’re killing it and getting better and stronger everyday (Leason’s marrow rocks and so does he!)
    Day 100….countdown is on and so glad you’re almost there!
    XOXO, TTF and ENFU…jae

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  24. Joselyn, So happy to hear more positive news and your writing is so entertaining to read because of your great attitude. Always wishing you the best.
    Mike & Margrit

    Michael Cargile | Senior Vice President
    Voit Real Estate Services
    2020 Main Street, Suite 100 | Irvine, CA 92614
    T (949) 263-5338 | F (949) 261-9092
    mcargile@voitco.com | http://www.voitco.com
    License #00491668

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  25. Your numbers look great! So glad to read that things are progressing in the right direction. Your writing is inspiring to so many people, including me! I would love to see what you are sewing. Post pictures. You are continually in our prayers.
    xo Marilyn

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  26. SOOOO happy abour your continual good news and rising numbers! You have amazed us all and are a TRUE INSPIRATION! I agree with Jae-you are #1 in the BLOG world! Can’t wait to see you and have DAY 100 behind you. The BLAB’s will “Celebrate in Style” in 2013- just waiting for your smiling face! Sending much thanks to Leason and his awesome Bone Marrow too! xoxo The Davis Family

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  27. what great news! numbers in place and closing in on the big day! happy for you all and of course looking forward to the next blog…..love to your folks…..so glad your dad has recovered……such wonderful people……think about you every day.
    caron and fam!

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  28. Jos Thanks for making me laugh. You rock and are truly amazing. A little jealous of the 10AM wake up I must say. Love you and can’t wait to see you.

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  29. HI Joselyn,
    David and I want to share in the celebration of your 100th day! We continue to admire all that you have done to reach this point! You are truly amazing!!! We love you, and always have you in our prayers.
    Hugs,
    Carole

    Like

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