This is a draft post written by Shannon and posted by her mom, Gretchen.
I hadn’t said anything because I was enjoying living in the land of De Nile for the past week, but we had an oncology appointment today that brought us straight back to our own special reality. *Sigh* I had really enjoyed being a “normal” parent of a newborn.
Again, not too much new information, but a few key details do seem to have clarified and changed our near future a bit. And, as usual, this return to reality has been accompanied by lots of tears (because frankly, reality sucks).
I will have my MRI and PET scans this week and likely early next week. These are probably the very most important things because if they come back negative (as we all hope and expect), then we can proceed with our plans. And I simply won’t entertain the thought that they don’t come back negative. So if you pray/think good thoughts about anything, pray that these scans are the cleanest things anyone has ever seen.
The fact that I can get a PET scan is a mixed blessing. It’s good because I can still get it & breastfeed, and it provides better resolution for smaller masses. It’s bad because I can’t breastfeed for 18 hours after and I can’t even hold Emmie (or be too close) for 6 hours because of the risk of the radiation. Given that I am feeding her at least every two hours and sometimes every 20 minutes, and have never been more than 50 feet from her for more than a few hours, this is going to be very hard for me. I have been pumping, so she will have some food to eat, but it’s more the emotional toll than anything. It will be the first time she isn’t dependent on me for a basic need, and even more, it’ll be the first time she can’t have the one thing that reliably calms her (me. Or my boob.).
Provided the scans go the way we expect them to (and they WILL), I’ll begin one month of interferon on July 25th. I’ll go for 4 weeks, Monday-Friday. It sounds like the first week and later weeks will probably be the hardest, as the first doses are a major shock to the system, then the cumulative effect kicks in. Common side effects are fever, chills, aches, and fatigue. Fun! However, I did find out that these don’t last all day, but usually just a couple hours after the injection, so that’s better than I thought.
A coincidence I’m still not exactly sure how I feel about: the last day of my interferon treatment will be my 30th birthday (August 19th). Will this be good and joyous? Or will I feel crappier than any day before? Time will tell. Before we had figured out the timing, I had told Peter I wanted the birthday party to end all birthday parties this year, to celebrate survival, new life and, above all, to celebrate the love from friends that has made getting through this possible. I still want that, but I don’t know if I will be feeling as strong and well as I want to be the weekend after my actual birthday. So it might be slightly delayed, but–O! will there be celebrating!
We did get two pieces of bad news about the interferon. First, it is highly unlikely I will be able to breastfeed during the treatment. Interferon alpha 2a seems to be relatively OK for breastfeeding and this is what the lactation consultant had looked up. I will be taking interferon alpha 2b, which has essentially no evidence either way, and so would be an unknown risk to Emmie.
Obviously, this is not what I had hoped, but I keep reminding myself that there are worse things. My hope/plan is to “pump and dump” for the month that I will be getting treatment to keep my supply up, and then (if all stars align) resume breastfeeding after I get the OK, which I hope would not be long after I finish getting the interferon. The biggest hurdles I foresee to this plan would be my motivation to keep pumping (at least 8x a day) when I literally have to throw everything away; and Emmie’s willingness to return to the breast after a month of bottle feeding.
It’s also so hard to think that she will be three weeks old when we breastfeed for possibly the last time (although every time I’ve thought something would be “the last,” it hasn’t turned out that way!). Still, that just seems SO young. And I know, intellectually, that many mothers have to stop breastfeeding that early or earlier, for a host of reasons, including returning to work, but emotionally, it’s still so hard. Part of the reason is because it IS going so well, and I know how incredibly lucky we are that it is. She seems to be chunking up already and we all think she’s growing by the minute. I just hate to derail that with any change, even if formula is *just fine* (which I know, intellectually, it is).
The second piece of bad news was much more unexpected, but probably less of a big deal than it seemed at the moment. I won’t be able to have Emmie with me while I get the interferon treatments, which was something the oncologist had said I probably would be able to do. This was super sad for me at the moment, and also posed a bit of a logistical problem, since I wasn’t exactly sure who WOULD be able to be with Emmie if Peter came into the treatment room with me. The nurse looked at my mom, who was with us, but PS She doesn’t live here and can’t stay forever (sadly).
I’ve since come to my senses and realized that my treatment is only supposed to be 20 minutes long each time (although I’m sure it will take longer for set up, etc., especially at the beginning), and after the first time or two, I don’t think I’ll need Peter in there to hold my hand (literally! I get an IV every time, which is my least favorite thing!). And I think we can round up a friend or two willing to come with us and hold Emmie in the waiting room for us for a visit or two 😉 It still is hard to think that she might be upset or cranky and I won’t be able to hold her. I know all parents have to face this moment at some point, when their baby is no longer totally in their control, but most people get to have their baby more than 3 weeks before this happens, I think. And the upside to interferon is that it’s not radiation, so I can be with her again right away, unlike the PET scan.
All in all, lots of tears during the appointment (again, do NOT envy the oncologist’s job, although I must say they are pros at handling tears!), some due to the news, but also to the crazy hormones raging through my body right now.
Your “What Not To Say” moment of the week: As we were waiting for the elevator, I was holding Emmie (mostly for my comfort). A woman comes up and says “They’re cute now, but wait until they’re teenagers. They come home late, don’t call, etc., etc. This is the best age right now, enjoy it while you can.” I pretty much ignored her, but then she KEPT COMPLAINING as we all got in the elevator together and then KEPT COMPLAINING even as I burst into tears and started sobbing in the corner of the elevator. The lady only shut up when my mom said something sharply to her, then she said “Sorry” in a huffy sort of tone. I told Emmie that I would be there when she was a teenager and would
be HAPPY if I got to be annoyed with her coming home too late.
My favorite thing about the Rock Creek Kaiser center is the little sign on one of the check in desks that says “Be kind to those you meet because everyone is fighting their own battle.” So don’t be that lady and remember that EVERYONE has their own battle, even if it’s not always outwardly visible.
So very very true. Although emotional to read, appreciating these words from Shannon.