The Calm Before the Storm

Terrible. TERRIBLE! That I would leave so much time between posts. Two reasons: not a lot was happening, suddenly a lot was happening. To back track:

On February 2 I had my 3rd of three informational meetings with members of the BMT team in Ottawa. Accompanying me were my parents who had come up from Mexico and were able to help me settle into this fabulous condo we lucked into. We found that my internal compass was a better guide than any Google Maps so it turns out it is really quite easy to get here from the highway, and equally easy to get from there to the hospital. We’ve had some practice now, so that’s why I can say that! On this day we met Katie, the liason nurse, whose persona oozed reassurance and competence, and I came out of there feeling less daunted and more ready to go. She also made me feel better knowing that it was possible to see the kids after 4-6 weeks. She gave me a play by play of what to expect when I returned and thereafter, what drugs I’d be taking and how they would affect me. The best analogy I have heard about this process came from Katie: consider yourself a baby. You are, after all, getting a new marrow, a new life, so everything from that point on is growing from the bottom up, from the inside out. The nurses will even come in to sing Happy Birthday! The difference is I won’t be nursing to get my immunity, I have to trust my cells to allow the new cells to settle in and take hold, without hurting anyone’s feelings. To prepare them, and all the organs involved, I talk to them every night before I go to sleep. Some good stuff about energy healing I gathered in this book.

After the infusion, things get interesting and kind of bottom out as my body reacts to overload. It is very likely that I will be admitted for fever or engraftment reaction called Graft vs Host Disease (GVHD). I am expected to receive more infusions of blood and whatever else is need to balance me out. And the best news was that the marrow is fresh, no more than 48 hours away, transported by an RCMP officer and from a very large (apparently!) male with, as Katie said with a smile, “fresh, juicy marrow!” This fellow has the exact same typing as I do, and his blood is A+. Mine is A-, and will shift to positive!

A member of the hematology team was next, Dr B-B who told me specifically that after the 16th, the cumulative effects will be felt, so there will be fewer blogs, no doubt. Everyone expects sores in the mouth, so getting food into me will be a challenge, as will avoiding infection, and there are rinses to help with that. The entire GI system is being affected, and those cells, as well as the hair follicles, are the first to go, but they are also the first to come back, so the fact that this state has to be temporary is somewhat reassuring. I was started on Dilantin, an epilepsy drug, as a prophylactic when the other meds kick in the following week. As well, after the marrow cells go in, I need to go back to the ATG, which was the stuff I took when I was undergoing treatment for aplastic anemia. I am leery of this, but I am told it is the rabbit version, that I tolerated, and a short term infusion, and its design is to suppress the donor’s immune system to keep it from reacting too soon (another form of GVHD).

So now I need to re-locate to Ottawa. This was the day I had been dreading, saying goodbye to the kids. I was given a reprieve when I got the call that things would start on Tuesday rather than Monday. So on Monday we all slept in and let the kids dictate things, but I did have to go, and it was a sloppy goodbye, one of the hardest things I’ve ever had to do. Jessie had asked me the night before if I was nervous and I admitted yes, I was, but getting on that boat to start the journey toward Ottawa, a new marrow and a new life was a step in the right direction. We Skype daily and Jess is trying to teach me how to text with my iPad, and Pete with his new iPhone. This means we are a completely wired Apple family. (Kickbacks here, please!).

The condo, if I didn’t mention before, is on the 9th floor and overlooks the Ottawa skyline. From my bedroom I can see the Gatineau and the Parliament Buildings. If you are into numerology, and I am a little, you will feel a tingle when I say the building number makes 4, which is my numerological number.  The room number is 910. 9 is the number of transition, much like the death card in Tarot, coming to the end of something. The 10 refers to starting over, being back at the beginning. If you’re not shivering yet, let me tell you the name of the building: it is The Renaissance! I did not notice this until Pete and I were leaving on my first trip here. It added to the rightness of it all.

I know I am behind, as today is the 3rd day of treatment, so I will give a brief outline of the previous 2 days, known as Day 8 and Day 7. We are counting down to Day 0, the day of the marrow infusion. Day 8, which was for me the first day, was a very long and tiring one. I was told to check in at admitting at 6:45am, and then I was directed up the 5W, the BMT wing, but the day nurses hadn’t even arrived yet, so we went down to hang out at the café. I think this was the moment I was most nervous, because the process had begun but really hadn’t, and this was a good time to bow out. I couldn’t finish my coffee, I was so knotted up inside, and I really didn’t hear anything my parents were saying. When we finally went up to the room in 5W, we had an emotional moment and then came acceptance and I felt ready to hand myself over to the utterly personable and competent staff. They sent me back downstairs to have my Hickman (IV) inserted. This process took longer than necessary because no one had thought to take blood earlier to see what my platelets were up to, since this was minor surgery. After a long wait I was wheeled into a modest OR where a pair of young doctors were ready to set me up for the procedure. I really appreciated the nurse anesthesiologist who coached me through. I had expected something more invasive but it is just a pair of tubes to access my vein for blood drawing and entry of drugs. Later I went to radiology where two technicians did a CT scan and marked my chest and back with plain old Sharpies and scotch tape to indicate where the radiation is to be directed and to avoid irradiating important bits. I found the procedure very relaxing, having had little sleep the night before. I was drained when we came back to the condo, and hungry. Fortunately the next day, Day 7, was simpler, IV Fludarabine and IV Busulfan. As well, I was given a shopping bag of various drugs and instructions what to take and when. It is overwhelming but temporary, and designed to reduce the side effects that are to come.  I was curious to find that some of the drugs are meant to detoxify the liver and other organs, to help flush the junk out to avoid complications. I keep thinking they know this works because of patients before me on whom they experimented. To those I give many thanks! I have consented to 3 studies that students have offered me, in line with educating future doctors and patients.

Each of those days I had visits from different team members, all still new to me. One was the pharmacist who gave me every detail I could possibly want about the drugs, and he reinforced the point that this method has been perfected over time and has been used successfully for over 10 years. What I did not want to hear but now understand is that here is no place for homeopathics or alternatives. With no studies (and there should be) one can’t predict how each will affect the other. It is a sacrifice I have to make as I entrust myself to this protocol. When engraftment takes place and my body starts to recover, I can go full hog on rebuilding. I was prepared to argue my points when the dieticians came in, but they were both so charming and knowledgeable that I was impressed and only had a couple of questions that they actually followed up on.  I need to intake a lot of protein and calories to start the rebuilding process and when the time comes when I cannot abide eating, the options offered were things like Resource, Ensure and Carnation Instant Breakfast,  Instant yuck, you mean! But I tried one, and within half of an Ensure, my tummy was troubled. If you read the ingredients, you will see why. But again, I realize it is temporary, and if that is the only source of nourishment, then so be it. Whatever it takes to get me through those bad days, because if I don’t take liquid food in my mouth, the next option is through a tube!

Today, then, if you are keeping track, is my third day but considered Day 6. Now that the routine is down, it was a manageable day. In this room I suddenly had none of the WiFi that I set up yesterday, but instead I had free tv, though daytime has the worst options. I was happy with the Space Channel for a couple of hours. The pleasant doctor who came in yesterday to chat returned to do so again and was impressed to see I was watching The Next Generation. Maybe tomorrow I can catch part 2 of the Borg episode!

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11 thoughts on “The Calm Before the Storm

  1. Hi Sus – thank you so very much for keeping us all in the picture. I have to tell you, girl – I am praying for you big time. It sounds like you are in very capable hands in that hospital.

    Nancy Stewart

  2. Sus:
    You are inspirational! Shawna and I are sending you good blood cell vibes.
    I am so glad you are finding some reassuring doctors and nurses!
    Thanks for keeping us up to date.

  3. Hi My Friend- Thanks for posting. Will have Skype on so if you see m ring at any time. Love you dearly and…sending all the positive energy I can your way! Loads of love, Elsa

  4. Best wishes to you on your new upcoming birth! I can see that they haven’t taken out your sense of humour yet! You are a brave one!

  5. Hi Sus,
    Huw just sentyour blog address. I am his Mom – so glad that the condo. worked out for you. I wish you well in your Ottawa adventure and hope that it goes well. If I can do anything to help, please let me know
    .
    Jennifer Davis

  6. Hi Sue, Mel and I are wishing you Happy Valentine’s Day.
    Mel took Boomer over to your house today, he had a Valentines for Lily.
    I wish I could have see that! I hope Mel took some fotos we can share later :-DD
    Thinking of You a lot and sending All Positive Intentions and Energy to You and soon to be New You. Hugs and Kisses The Girls

  7. We’re following your progress and thinking of you constantly – you know, your determination, clear-sightedness and simple joie-de-vivre are an inspiration in themselves. You give us courage too.

    Love from your pals in deepest Gaul,

    Michel & Pascal

  8. Hi Sus and Pete, I have just finished reading the events of the past few months and I must say, you guys have really been on an emotional roller coaster. Bet you never dreamed of having this kind of adventure when you were still living in Indonesia.

    You’ve gone through alot of preparation and things are now almost in place. The kids are in good hands and Pete is near by. It’s essential you trust the medical team and know that you have a good support team watching out at all times for your well-being. And all your friends are with you.

    I’ve found all the comments you’ve made about your experiences with the medical team to be very insightful and interesting. Bet you never knew I used to work as a surgical nurse? I can see you’ve learnt alot from first hand experience to trust your own gut feeling and to always ask questions and never assume everyone is on the same page. And you keep looking for the positive things in every situation and give thanks for every small hurdle overcome. You’re definitely on the right track Sus.

    You know this year is the year of the Dragon in Chinese astrology. I noticed you email and blog names both contain the word dragon. That’s a good sign! The Dragon is the Ultimate auspicious symbol signifying success and happiness. So it is quite fitting that you used it in your name. Or maybe there is another story behind this?

    I will “Follow” you and visit your blog frequently. Jamie helped me make a bog this summer when I traveled around the Maritimes and Newfoundland. It’s a great way to communicate. I wanted to add a photo to this comment but I wasn’t successful.. maybe next time. I’ll try to find out. And one more thing, Lauren Fonda just sent me an email and said she’ll come and meet me in Lombok in April. She’s been teaching 5 years already in Saudi.

    Well Take care. Chin up. Keep smiling, visualizing success.
    I’ll be visiting Canada mid March. I’ll be in Kingston for March 17th, attending Dallas’s Iron Ring ceremony. If you need me to pick up something, just let me know. Then I’ll spend aprox a week in Ottawa and will come and see you for sure.

    Much love always, Bernie

  9. So happy to hear you are in such caring, capable hands! Wonderful news!

    And Pete went from no cell phone to iphone???!!! Rad.

    Hugs and love to you, Sus!!
    xo
    amanda
    p.s. The strawberry flavoured Ensure is my fav…

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