This week, I managed to make it into work for one full day and one half day (probably). I’ve had an echo cardiogram, EKG, pulmonary function test, multiple labs, and a tri-fusion catheter inserted. I’ve also met with my transfusion coordinator, social worker, radiologist, and oncologist, submitted FMLA forms, and updated my co-workers on my preliminary out-of-office schedule. And I go into the hospital tomorrow to start my next round of R-ICE chemotherapy.
On the one hand, I’m really glad things are moving so quickly, since this cancer continues to be astonishingly aggressive. On the other, I am overwhelmed. And scared. And exhausted.
The best days were the ones when I could go into work. Being able to focus on something other than being sick and the treatment path I’m having to undergo is both rejuvenating and refreshing. Any time I can spend at the day job is beginning to feel like a luxury day at the spa.
Meeting with my transplant team, I got a better idea of the magnitude of the stem cell transplant procedure. I’ve been operating under the assumption that once I completed my three-week stint at the hospital, that was it; I could go back to work, resume life as usual, start running full tilt towards a resumption of normalcy.
I was so wrong.
I knew that the procedure will involve a total destruction of my immune system, utterly wiping out my bone marrow. I didn’t realize that it would also destroy my childhood immunizations. I’ll need to get re-vaccinated for everything in something like one-and-a-half to two years from now. And during this time, I’ll be at risk of contracting chicken pox/shingles, measles, and all the other lovely diseases one thinks are safely behind you as an adult.
Also, the weeks in the hospital for the transplant itself are only the beginning. With my immune system wiped out, even with the stem cell transplant coming to the rescue, I will be weak and unable to be around people and potential infections for upwards of months. They won’t let me return to work until my immune system stabilizes, and that is going to exhaust my remaining leave time as well as the three months of unpaid FMLA time I’m allowed. Even after I’m allowed to return to work, I will continue to have a terribly weakened immune system, suffer from fatigue, and all the horrible side effects of what will essentially be a lethal dose of chemotherapy, for upwards of a year.
So much for a speedy return to normalcy.
My transplant coordinator recommended that I try to take things one step at a time, but it’s hard not to stare at the big picture and gibber with anxiety and dread.
Eugie. I am so sorry that you have to go through this. You are a strong beautiful woman and I keeping you in my thoughts and prayers. If there is anything that I can do, let me know.
Teresa : *hug* Thank you.
They can take your marrow. They can take your immunity. They can take away your salary for three months. But there’s no machine, procedure, or treatment that can take away your awesomeness – because you are a bottomless well of awesome.
I’m so sorry that this is what you are facing in the short term, but I look forward to many decades of having you around, after this is a distant memory. Hang in there.
Joshua : <3
It sounds pretty scary, but look at all you’ve dealt with already. You’re going to get through this, too. One step at a time. Because you are a strong, determined woman, with an awesome, supportive husband, and a big cheering section of fans and friends sending you lots of positive energy. And when you get through all this horrible stuff, you’ll turn it into stories, stories of perseverance and triumph, stories that will touch lives. *hugs*
<3 - will be thinking good thoughts for you.
I’m no expert here, but it seems like you ought to be eligible for social security short- and long-term disability (or the state public sector equivalent) during the period you’re medically ineligible to work. Really sorry you have to go through such a draining treatment procedure. Random side note: I know that for other-donor bone marrow transplants, it’s been anecdotally observed that the transplant process seems to restart or increase ovulation, even in much-older women. Don’t know if that applies to autologous stem cell transplants. But unless you want more children, you might want to ask your transplant docs and OBGYN whether you want to be diligent about birth control post-procedure. I understand that sex will probably be the last thing on your mind the day after they reboot your immune system … prayers continuing for a final annihilation of this cancer and then a speedy recovery …
Holding you close…..love you!
I think your transplant coordinator has some good advice. Just get through each step at a time. Each little step is one step closer to wiping out that damn cancer and achieving victory.
You’ve got my best wishes and support, Eugie.
Thinking good thoughts for you…and taking it one step at a time is really good advice…
Thinking of you and hopeful this is the ticket for you.
Yep. Im 95 percent sure you’re eligible for short term disability (not sure what your state classifies as short term) Def take it! And then let your body be awesome and recoup. You’re literally gonna have a new body from the inside out! You’ve got this *clap clap bunny cheer clap clap* <3
Here’s to a successful course of treatment.
This is a disappointment, to put it mildly, for sure. Knowing all you can ahead of time is important, but I certainly understand how much dread that can fill you with. Dread is the worst feeling.
Without work, are there any other distractions you can focus on for any length of time? I’m sure you have ideas… I’ll try to think of some, too, FWIW.
Eyes on the prize, baby. Take the steps one at a time, sure, but think ahead to the not-so-distant cancer-free future!
Eugie– We were on a panel together at JordanCon. I’m so sorry to know that you are having to go through this. Hugs to you and all good thoughts going into the ‘verse for a successful procedure that puts you on the path to normal, even if that takes longer than you’d realized.
Thank you, Debra. *many hugs*
I’ve been a lurker following your blog for some time. I’ve been anxious about commenting because I’m also a doctor, which sometimes makes me feel I’ve got an unfair advantage in knowing what might happen.
But – have you talked to anyone who’s had a BM transplant? I’m in a different specialty (ER) but I regularly meet people who’ve had transplants in the last 3-12 months, usually b/c of infection fears, and although they may have problems with fatigue, and the lurking fear of their cancer returning, everyone I’ve met seems to have a good quality of life and be generally optimistic. The consensus seems to be that the transplant/hospital period is rough, but on the other side it isn’t such a struggle as they’d feared.
And remember that although a lot of people believe that doctors only care because we’re paid to, it’s not true. Your whole team is invested in your health and survival, they care about you – in a different way from family and friends – but you matter to them as a person, however invested in the numbers they might seem at times.
Best wishes for the next few weeks and beyond – I’ll go back to lurking and buying your books and looking out for new ones in the future…
Thanks so much for your comment, Fiona! I know my doctors and transplant team are giving me longest estimates, worst case scenarios, so I’ll be mentally and emotionally prepared and won’t create unrealistic expectations–they’ve told me as much, even. I appreciate their honesty and frankness, but, yes, I’m finding that hearing from folks who’ve undergone a transplant really helps to counterbalance the worst-case-itis.
*hugs!* Baby steps can carry you a very long way when given the time! Sending you tons of good vibes and positive thoughts!
Often life has to be lived one moment at a time. You’ve been given another difficult situation to deal with. Trust that your life will improve with your transplant and that you and Matthew will begin a new and better chapter of your lives. You are an inspiration to many. The next year will have many challenges for you to go through. Keep the faith and positive attitude we are all sending love and good wishes your way.
Hoping for a successful course of treatment for you.
Gosh, I’m so sorry.
Eugie, I have a friend locally who had a bone marrow transplant and has been cancer-free for close to a year. She is radiant. If you’d like to talk to her at some point just let me know. Prayers
I stumbled across this blog via the internet so pardon a complete stranger from posting. However, I had a stem cell transplant last summer and just wanted to lend some encouragement. It is different for different people, but I had a very positive recovery. I was actually working part-time about three-four weeks after my transplant, albeit with a surgical mask 🙂 I’m about nine months out now and haven’t gotten a single infection, and just recently started getting my immunizations again.
Different cancer (multiple myeloma), different people, so who knows what to expect? But I just wanted to throw a positive data point at you since I remember EXACTLY how freaked out I was.
The procedure itself was strangely anti-climactic. They hooked up the IV, I chewed A LOT of ice, and an hour later it was done. The ice was to help avoid mouth sores which can happen to some people. It worked in my case I guess because I didn’t get any. Two/three days later, my counts hit zero and they put the stem cells back in – which again was quite non-riveting, just putting a sack on the IV stand and trickling it back in. Then it was just waiting, waiting, and more waiting for the counts to come back up and leave. The hospital stay for me was 16 days.
Not having an immune system felt a lot like – having an immune system. There was a general feeling of unwellness that was more from the chemo itself, and fatigue from the procedure, but I managed to escape without any serious side-effect. It sounds like your chemo regimen is actually much worse than anything I experienced during the transplant, so I hope you have a similar experience.
It definitely stinks but it wasn’t nearly as bad as I thought it would be. Hope it is the same for you. Good luck! I’ll be lurking on your blog to see how you fare. And now I’ll go look up some of your books…
Brandon: Thanks so much for sharing your transplant experience with me! I know the health care people tend to provide a worst case scenario so folks will maintain realistic expectations, but it’s really encouraging hearing about a successful, non-worst-case-scenario, firsthand.
Saw this through Joshua Villines and I left a note on your blog. Compelled to really, since I had a stem cell transplant last summer. If you have any questions about it, pre, post or afterwards, I’m happy to share. Good luck!
omg so sorry wish u weren’t going thru this and wishing i could do something for you. u r so courageous hugs
I sending you all sorts of love your way Eugie. And if you need anything please let me know.
Several doctors told us my dad would never wake up from a coma caused by a severe traumatic brain injury. It has been a long road, but he is moving around, talking a little bit, and even writing some. He is out of the coma, and, hopefully, will be going to rehab in the coming months. We have a long, long way to go, but he proved the doctors wrong. While the two cases are not the same, I wanted to update and share my dad’s progress with you as he is surpassing everything they told us would happen. I wish you all the best!
We will love you through this! Hold strong!
Go Team Eugie!!!
*YOU* are worth all that time, no matter how long it takes. Always remember that.
One day at a time. One hour at a time. Hell, one minute at a time. That’s all you have to do. You can do anything for one minute.