The Journey Continues
Hey remember when I said I was done with treatment? Yeah so about that - change of plans. Today I had my consultation with the radiology oncologist and turns out he is recommending that I do radiation to try to get rid of the rest of my tumor. I was prepared for that recommendation and I was okay with that being a possibility to give me the best possible chance to stay in remission for as long as possible, but for some reason I’m not processing this news well. I felt like I was going to faint out as I walked back to my car after talking with the doctor for about an hour and a half all about what the treatment will entail and what all of the possible side effects will be. I’m overwhelmed and exhausted and scared and sad and just so emotional. I’ve been trying so hard to pretend like I’m getting my life back together, but I’m struggling. My brain is moving slower, my body is moving slower, and I’m not sure when all of this trauma is going to catch up with me. It’s clear I have not yet begun to process what I’ve been through and someday it will explode, but for now I have to keep moving forward - even if somedays all I can do is stand still.
Let’s back up a bit. The past few weeks have been very busy! I went back to work last Monday so I’m in the process of re-training my body to wake up early and be productive. It’s definitely been challenging to get going in the morning and by the afternoon my whole body is exhausted. I’m trying really hard to be as fast and efficient as I used to be, but my body just isn’t cooperating. I’m frustrated and a little defeated. I know I need to be patient, but I just don’t have time for that. I really hope it all clicks and soon because I don’t like feeling like I’m barely keeping my head above water and that’s how I feel now after only 2 weeks. There’s so much to do and remember and I just feel like my brain is mushy and tired. I miss feeling like I have my life together. One day at a time.
Other than getting back into work life, we’ve been trying to continue to be more active so we have been going on family walks a few times a week. It’s been nice to get fresh air and get out of the house for a change. Saint Patrick’s day was fun - we made a trap for the leprechaun and even setup a camera to catch him. We left chocolate coins as bait and we have photographic evidence that we did in fact catch him, but unfortunately he was too strong and broke free of the trap and escaped. You know how much I love continuing family traditions and making memories for these kids of mine.
That brings us up to speed till today. This was my first time in the radiology department of Kaiser. It’s a separate circular building next to the hospital in Anaheim. It felt even more isolated and sterile than the chemo ward. but I guess that’s what you want - keep the really sick people off by themselves. My radiology oncologist is Dr. Kim and he was very nice! Excellent bedside manner and took a lot of time with me fully explaining the whole process. So if you recall, when I was first diagnosed, we discussed radiology with my regular oncologist and he explained that my tumor was too big and too close to so many other organs that they weren’t able to do radiation. The risks outweighed the benefits and there was too big a chance it could have permanent damage to the surrounding organs. Now that the tumor is dead and much smaller, they want to radiate to try to get rid of the rest of it. So because there is still a tumor on my scan, there is a chance that a rogue cancer cell could be hiding and because my cancer was so aggressive and fast growing, they want to make sure we do absolutely everything we can do to prevent it from growing again.
Okay so here’s the plan. I will be going back on April 6th for a “planning” appointment. They will be doing a CT scan with contrast as well as x-rays and they’ll be making a mold of my body that will be used to keep me in the right position for the radiation. They will be making a 3D image of my whole body to make sure they’re targeting the tumor exactly. It all sounds very high tech and state of the art. Then I’ll go back in a few weeks after that and get my tattoo and have a run-through of the radiation - then they’ll start radiation the next week - so we’re probably 3 or 4 weeks out from when I’ll actually begin radiation. There’s no huge rush to start since my cancer is already dead. The doctor went on and on about how much he knew about my specific case and how rare my cancer was and how I got so much more chemo than most cancer patients that this should be nothing. I always want to know the statistics for possible side effects or outcomes, but since I have the “Double Hit” there just isn’t a lot of data for me. He said he rarely sees double hit patients and never in someone as young as me. He seemed surprised at how well my body reacted to the chemo and said that I’m really lucky it worked and worked so well and that if it hadn’t that I wouldn’t be sitting here. I stopped him and said, “do you really think I’d be dead if I didn’t get treatment when I did”, and he looked at me and said, “absolutely.” Almost dying is a really weird thing. It’s a lonely place.
Okay, enough of that. Let’s talk side effects. So my tumor is touching my bowels, bladder, and ovaries. That means that those other organs will also be receiving radiation. My doctor gave me the side effects for each individually.
Bowels - side effect include irritable gut, more frequent bathroom breaks, cramping, diarrhea.
Bladder - side effects include inflammation, more frequent urination, maybe some burning.
Ovaries - side effects include an end to my baby-making years. He specifically said my eggs will be radiated so if I want to have kids in the future, I would need to harvest my eggs now. Cool cool - good thing I wasn’t planning on having anymore kids - but still this is hard news to hear - something about a loss of my youth or my femininity or purpose as a woman. More trauma to deal with later.
Other than that, I will have increased fatigue (oh goodie), but the radiation itself is completely painless. He said I won’t even feel it. I’ll be getting 5 minutes of radiation for 18 days - Monday through Friday for 3 1/2 weeks. He said the whole process is about 30 minutes from start to finish, but the actual radiation will only be on for 5 minutes each day. The good news is that once the machine turns off, there won’t be any residual radiation in my body so I’ll be able to come home and hug my kids. He said that I will notice redness like a sunburn around the area and there will be hair loss but only where they’re radiating. He explained that most patients think chemo is worse than radiation so I should feel the same, but then again, the amount of chemo I had was so high that my body is already sensitive to side effects so we’ll have to wait and see. He said I can go out on disability again too, but I don’t think I want to do that. I told him I’m going to try to work through it - although I may have to scale back my hours especially for the 3 1/2 weeks where I’ll be running up to the hospital for treatment everyday. I don’t know when I’m going to feel normal or healthy but I’m clearly not there yet. I struggle between the thought that I should get a free pass forever and should get to be on vacation for the rest of my life for the torture I’ve been through, but I know that’s not realistic and plus I need money to pay for all of the medical treatments I’ll need forever and ever. I’m running out of patience waiting to feel like myself again. I remember the old Molly and she was fun and happy and funny and clever and even a little cute and man do I miss her. Maybe I just need a nap or a vacation or a massage. Tomorrow is my birthday and Eric and I will be going to Huntington Beach and staying in a hotel and seeing a socially distant concert so I’m really hoping a weekend away will be just what I need to get my head back in the right place to continue on this journey and finish this fight. Fingers Crossed.
