Sus: Rebooted

Well today was the day! After 2 nights overnight with fever, vomiting and diarrhea I made it through to the other side and am feeling more human than I’ve been in a while.

After the 5 days of chemo and one day of small bouts of irradiation, I went back to 5 West for the ATG, which is designed to reduce the immune system even further so it won’t attack the new comers. This moniker always makes me nervous because of my reaction from before, of which the team was very aware, so I was under constant supervision as it was an 8 hour drip. At about the 6.5 hour mark I started to feel gross, then threw up.  Then I spiked a fever, anticipated, so they kept me overnight. The next morning, yesterday, I had the second and final round of ATG. Again, at around the 6.5 mark, my entire GI tract emptied its contents repeatedly and exhausted me beyond belief. I could not get up from the bed. I was feverish again and on Tylenol and various other things and sent to the In patient section where I had a private room and no desire to do anything, even sleep. I was soooo dehydrated and craving– nay– fantasizing about limonadas in Puerto Vallarta, all that luscious lime on crushed ice in sparkling water… torture! I came to be a huge fan of a simple cup of crushed ice. In fact, I realized that the ice tasted so much better than the water I would rather wait for it to melt.  That night I sweat it all out while the nurse applied cold cloths on my head and neck. By morning I was feeling better and by 6:30am I was sitting up with a renewed appetite. I am sad, but not surprised, to report that the food continued to be hideous. Even the toast gets reheated. By the time you get it, it is a cold dead thing you might want to put some concrete on to build a shed. As for the egg, more like a golf ball. At least the cereal was decent. But not enough. Off, Pete, to Tim’s, and get me a breakfast sandwich! That stayed down and paved the way for better things to come. Because my entire GI tract has been rearranged, I need to nurse it all  back to health. This is why we prepared and brought organic applesauce and yogurt, however these got thrown out by an overzealous nurse, so I had few resources available.

There was a little bit of preparatory meds, then the marrow arrived! I was to get 2 big juicy bags of it. It went in my IV just like any other drug, and all I had to do was sit back and watch benign episodes of Parenthood and listen to my CD “marrow mix”. We were allowed to leave around 2 or so. I was jonesing for a bath and Pete went off for more supplies (in the way of Depends…). In the tub I had a big pow wow with my cells. Guys, just chill. Y’all have a nice mash up, don’t be threatened. The new guys are coming in gently and fixing the place up. You did your  best all these years, thanks, I luv ya! Now git! but not too quickly!

Other than feeling more energetic and upbeat, the other thing I noticed was that for the first time in many years, my nails looked pink! I had been so pale for a long time, and now even my face looked ruddy. I wondered if it was the effect of the radiation, which is the appearance of sunburn, then tan. We’ll see how that goes. Another thing I’ve noticed since the ATG is some neuropathy in the lips– they’ve felt strangely fuzzy.

Here is what I am to expect over the next while. At the end of this first two weeks (or sooner) I will start to feel wonky. This is my body realizing its been tricked. This is when the fastest growing cells start to fall away: hair, mucous, more in the GI tract. It will be a touchy time with mouth sores and the works.  At about 18-20 days, engraftment should begin and new cells will start to grow. This is when we will start to see cell counts start to go up.   By 4-6 months, my energy level will be approaching normal.

I do like the baby analogy here. I have a new marrow taking hold in my body and I must treat myself like a baby to accommodate it. Soft foods, lots of rest, fluids, avoid crowds and sick people, salad bars, soft cheeses and questionable sources of food.  It’s also not unlike being pregnant. I’ve been down that route a few times, so it won’t be too difficult. I hope.

Addendum: for some frustrating reason I am unable to sync my iCloud to post photos, which has been causing a delay for me in posting this. It is the day after transplant and I had to readmit myself overnight because my temp was over 38. I’ve had little sleep and little stays in my stomach, so I’m quite miserable but am just now coming round to humanity again. The docs came in full force today discussing precautions, and this means I’ll be here thru the weekend. The thinking is that the BMT might have been the cause of the fever but since I have an already weak immune system, they have to be really cautious and consider other possibilities and so I went downstairs for chest X-rays.  I like their precautionary measures but it sucks to step back. I realize that there will be days like this, one up, one down, sometimes both within the same day. So though I don’t feelnth is is ready for posting, I will do so anyway.


8 thoughts on “Sus: Rebooted

  1. Hey Sus

    Thought it was high time this side of the Graham clan popped in to say hi. Just signed on to follow your blog so now I will be even more up to date.
    We are all thinking of you and the family in this tough time – we are talking about you and your ups and downs with the kids to keep them in the loop…..and of course remembering the brill holiday we all shared in January.
    Take good care and lots of love from all of us…

  2. It’s a tough road but you’re making progress . I laughed when I read the conversation you had with your old body cells. That was pretty solid advise and hopefully you won’t have to deal with a rambunctious juvenile!

    Then speaking about the instant bowel cleanse, “Urgent” by Foreigner comes to mind! I can totally identify with the weakness one experiences and the tedious process of having to start all over again, introducing foods one by one into your system.
    At present I’m living on something pretty similar to you called the BRAT Diet ( Bananas, Rice, Applesauce and Toast). So it’s all happening and unfortunately way too often here in Indonesia. “Pelan pelan” as they say in Bahasa. I was also encouraged to drink lots of Pocari sweat- an electrolyte replacement drink to restore my energy level. Water alone just doesn’t cut it..but perhaps in your case you’re receiving these ions in your meds.
    Depending on the number of nights and days you may have to spend in the hospital, you might want to carry a small toaster and a small rice cooker in your suit case? If they allow you to plug in a computer, you should be able to make some hot yummy toast when you’re feeling hungry. In some things, you just have to look after yourself, and food for sure is one of them.

    I’ll be honest with you , I do not make a very good “Patient”. Working in a hospital is one thing, but being on the receiving end , flat on your back, is the flip side. Hospitals don’t really give you much opportunity to rest. And when you finally settle into a nice comfortable position, someone comes in to take your temperature or give you a medication. Having said that, when there’s an emergency or someone is really sick, there’s no other place that I’d rather be!
    Canada has a pretty good track record for having some of the finest hospitals in the world.

    Sounds like Pete is feeling better. That’s good, and I’m glad you’re keeping him busy running errands. They say a little stress helps get the creative juices flowing…so who knows maybe Pete will write some cool songs and music to document his ups and downs while he is in Ottawa.

    I really love how you’re noticing all the small changes that are occurring..the color of your shin, the feeling in your lips…., and then, taking time to document. I’ll tell you, if I had to go through this, I’d be soooo grateful to know what to expect. It really helps to know that someone went through this and it’s not always a pleasant ride. In your case , you’re the explorer, the brave soul who is sailing into unknown territory. Thankfully, you’re armed with great Doctors, family and friends who will encourage you along. I’m just really thankful that you’re strong enough to write, because it can’t be easy.

    As Pete said, “you are an amazing writer”. I hear you loud and clear, I laugh with you, feel the agony, feel the triumphs, feel the’s all there. I know you’re also an artist, so maybe in your days of recuperation, you’ll also get inspired!!

    Hang in there Sus. Un Beso grande!

  3. Thank you Bernie for articulating your thoughts so eloquently. I feel exactly the same way you do and like you I so admire you Sus for your courage and strength to write these incredible stories about your very difficult journey. I know there are many people that so appreciate your incredible insights and awareness. I know I do. As we all go through our sometimes very difficult lives, there are always people out there that help us find our way. I know your words will help many people find their way as they struggle though difficult times. You’re amazing Sus, stay positive. And by the way, a very happy birthday to you!!!!!!!! Lots of love.


  4. Thank you for sharing all the details with us. What a wonderful resource you are providing for anyone in your position or for health professionals who could only benefit from seeing your perspective! Again happy birthday!

  5. Hi Susie,
    Happy Old Birthday! Hope things are a bit quieter in your body, in honour of the day. Your kids are doing well…Skyler’s cough seems much better. Katherine and Ringo are here and Sally is coming over on the 6 PM ferry for dinner. I too much appreciate your clear descriptions of some of what it’s like to go through this with humour and courage. Love, Pat

  6. Those new cells have an amazing new home! Happy Birthday Sus.
    I am betting those imaginary limonadas were from Fredy’s Toucan restaurant under your favorite hotel in old town.
    There is lot’s of love coming from the west.

  7. Hi Sus. Just a quick note to say “bravo”! I’m so happy to hear that things are going well, you’ve been rebooted and are en route to recovery. I admire your courage and your desire to help others while you are going through this. You’re one special lady :). Sending prayers and positive vibes your way.

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