Today, at this moment, I should be writing this while enjoying my new home, a new life on a tropical island. BUT, instead I had to cancel that ticket and am “home-bound” in the home I haven’t lived in for over nine years...P.S. That really kind of sucks. As one who never moved back home after moving away (far away) for college, the last thing that I could have imagined at the ripe age of 27 years, was that I would be newly married and yet living in my parents’ house, some five time zones and about 5,000 miles away from my best friend…Needless to say, I didn’t think that Aplastic Anemia would be wiggling it’s way into my life plan and timeline of events.
Ugh, so with that vent that I’m not in the physical location that I wish to be...paddleboarding or eating oh-so-fresh sushi in my oh-so-new apartment with my wonderful new husband…
The last I could have imagined two weeks ago, as I sat on my friends couch in St. Louis was that life was about to “get real”. I just thought I had a bad case of strep, bummer, but something that I could handle with the right antibiotics. Super tired, hard to breath, and very painful I managed to visit a Walgreen’s clinic (confirm the strep and get meds), get my car shipped off, drink lots of fluids, and spend plenty of time around germs at the STL airport waiting for my flight. Felt like hell, but you gotta do what you gotta do...or so my previous motto had gone…Luckily for me, my in-house diagnoser did not like how I was doing, nor the “odd” lymph gland swelling that I was experiencing, which I pointed out since it was totally something new in repertoire of Strep (?) symptoms. Less than a day later, I was admitted into a local hospital after a walk-in clinic CBC panel that unveiled some troublingly low immunity. Needless to say, this was also my very first in-patient hospital experience and extremely unexpected...Heck, after I had my labs drawn, I went grocery shopping with my mom and was just sitting down on the couch when I got a call asking if I was still at the clinic-um, no, the message to stick around wasn’t relayed. After three nights and lots blood work and tests, I felt like a medical anomaly.
Flash forward to today, ironically the day I was to leave for paradise, I had blood work and a referral appointment to a hematologist/oncologist at the cancer clinic at my Dad’s hospital. The anticipated treatment plans were discussed and detailed as well as the status of my condition and what this all means. This is truly when the realization that I will not be leaving the Midwest in the near future really hit home, like hopefully before the holidays. But, I’m super healthy except for one little detail of an autoimmune disease and completely susceptible to infection. The course of treatment involved will include the use of ATG, Cyclosporine, and Prednisone via a PICC or Hickman line while admitted for 3-4 weeks. If this goes well, which since I’m healthy and young is what I’m hoping for (!), and it works to resolve the problem (70% effective), I should be followed for the next couple of months and then continue steroidal treatment with continued follow up for bloodwork for 6 months. Essentially we are hoping to wipe-out and reset my bone marrow. If this course of treatment doesn’t work, as is the case for about 30% of those treated, then I’ll need a bone marrow transplant from a donor. Sad news is, is that this is a great prognosis IF you have a sibling able to donate...bad news for me, is that I do not have a LIVING sibling. Yeah, this news really sucked and when mentioned in front of my mother, totally got her crying and has been something that I have had to ruminate on for the rest of the day. Granted, 10 years ago when my brother passed away, I didn’t think “Damn you, now I’ll never have a perfect bone marrow donor!”...yeah, totally didn’t cross my mind. Anywho, back to the marrow, without that match they have to consult with the donor listings to look for an unrelated match and see if they can find the perfect fit. Granted, this is the backup plan, they’ll be getting started on the search to move the process along, if needed. So where does this leave me? Focusing on patience (as consistently repeated by both my father and husband) and letting go of my expectations of schedule or scheduling my life, as this is just something that has to be treated. I’ve gotten the weekend off (wahoo!!) and won’t be admitted into the hospital until Monday, so I can enjoy some time with the husband who arrives on Thursday morning. We have some “wild” plans to escape my parents’ house, stay at a hotel for a couple nights, and visit some friends- who are not sick and in an acceptably sterile environment. My life has become focused on staying aware of the health of my environment, assuring people that I’ll be ok, and getting a grip on what the heck is actually going on with me...Oh, and not to mention complete emotional/mental boxing within the safe confines of my mind, while trying to make everyone else feel better about the situation. Breath, that is all that is needed for me tonight, to let go of the anger that I am feeling towards predominantly myself, to the situation, and to wanting it all to be different.
10/13/13: A Month in Reflection
So yeah, that happened. Time sure flies by when you’re having fun! Just kidding, I don’t really take this all that flippantly. But, it is rather crazy to think that all of this weirdness, officially started on August 29th, when I had my first blood panel taken at the walk-in clinic...and then was immediately hospitalized...after mistakenly leaving the clinic and going grocery shopping with my mom of course! Which by the way is really kind of a funny call to get, “Hello, Sarah? Are you still at the clinic?”
Anywho, the real point of all this, is that I’ve only known, officially, of having Aplastic Anemia for the last month. There was the inkling before, from the local hematologist/oncologist, but going up to see the new physician was the clincher diagnosis. Now don’t get me wrong from the thoughts from that day, I was totally cool for most of the day, it was really just all of this post-appointment car trip time and some of the evening when all this was going on in my head. Since then, I ended up only having to spend the following Monday-Friday in the hospital for the immunosuppressive therapy with anti-thymocyte globulin (ATG), instead of the anticipated 3-4 week stay. Because I responded well to the treatment over the course of the week, they thought it would be better if not overall safer, for me to be home while immunosuppressed instead of in the hospital next door to some particularly infectious patients. Post-ATG, I had the pleasure of receiving medical supplies and having a couple of home nurse visits to teach me to flush my Hickman catheter and change the sterile dressing.
By the numbers, I’ve logged 26 appointments including:
9 platelet transfusions, going from every other day to about once per week (woohoo!)
1 anaphylactic response to said platelet transfusion…never want to experience again
2 Red Blood Cell transfusions
2 hospitalizations: 1 planned (ATG treatment) and 1 unplanned as a result of catching a virus
A few lessons learned:
1. “Don’t be a hero”. Pushing through is not the name of the game, especially when doing so results in pain and hospitalization. Call your doctor/nurse and let them know what’s going on, even if you think a sore throat isn’t a big deal. Your immune system is nonexistent, so it actually is a “big deal”.
2. Strenuous exercise and weightlifting are not your friend (right now). Oh, you’re an athlete and still in good health, why not pursue some light weight lifting or box step-ups? Too soon? Yeah, totally too soon. Your doctor won’t appreciate the risk that puts you in, nor will you, when you feel lightheaded, dizzy, and pretty darn awful afterwards. Plus, you’ll learn that doing so can put you at risk for bleeding in your joints, among other things...I think I can wait.
3. Chocolate milk (of any type) makes cyclosporine so much more palatable...not to mention the same for all of my medications. This little gem is thanks to my awesome RN from the most recent hospital stay. She was a wealth of tips and tricks!
4. And on that note...Treat ALL medical staff/hospital staff with respect, or at least be nice! Being nice to the lady that checks you in for clinic appointments thrice weekly to the RNs and techs that wake you up in the middle of the night for vitals and blood work. Guess what, they deal with a lot of crap, so don’t give them any more of it. Be nice, get to know them (if you’re up and alert/willing to talk...if you’re totally passed out, don’t worry, they won’t mind), and gosh darnit, try to say thank you for at least some of the nice things they do. Because really, then they’ll do MORE nice things for you (like bring you vanilla ice cream!) and really enjoy having you as a patient/it will be a nicer experience for the both of you! As an inpatient, you are really at the mercy of your medical support team, so at least learn and use the names of RNs and techs (hint: they write them on a board in your room).
5. Slow down. Newsflash: I move too fast. While this is simply old news to most who know me, this experience has been a re-evaluation of moving with intention and trying not to rush around. I say trying, because this is certainly still a work in progress.
Surprisingly, this last month has really flown by. With all of the traveling back and forth to the hospital, days kind of get sucked up, making it all the more important that I consistently work on letting myself rest. Rest, a sometimes very mentally challenging activity that I have to trick myself into doing. Even though it is hard to not be with my husband in our new home, starting our life together, we both know that having me here is the best for my health and for the situation at hand. I could not ask for a more caring, supportive, or thoughtful man to be in my life and through all of this he has only shown how truly perfect a fit we really are. It is also a blessing to have such loving parents, willing to completely sanitize their house and rearrange their schedules, trips included, to assist in facilitating my care. No matter how much we may annoy each other at times or I may resent having to be chauffeured to and from appointments, my parents are really doing their best to make this unwanted experience that much easier. I am also very grateful and fortunate to have so many good friends within driving or flying distance for visits and have thoroughly enjoyed, appreciated, and even been brought to tears from the outpouring of love and support from all. Which all brings me to hope. I believe know that I am going to get better, it is just a matter of patience with the process, the ups and downs, and not losing the strength of spirit that make me who I am. And I can patiently wait for that.