Sunday, September 4, 2016

Feeling Gipped....

For the past few days/weeks, I have been really feeling like cancer has stolen my life. I had my scan on the 29th, and my dr. appointment on the 30th to go over the results. I was feeling pretty confident - based on what I was feeling in my body, and the things that I could feel from the outside. Sadly, my oncologist was not quite as happy about the scan results. While I have made some great progress physically, and in most of my body, there were just a couple places that were worse than my scan in June before I started treatment. However, I know that those places have gotten smaller in the past few weeks, so in my mind, it wasn't really as bad. Still, it's hard to go in and think that you are going to get a happy face from your doctor, and then she's all Debbie Downer about everything - even though there were some major positives (which she pointed out later and agreed with me). It's sometimes hard to have hope when no one else around you seems to share in that. 

With the end of the summer hitting us right in the face, I've really noticed how much I have missed this year. Not once have I gotten in the ocean, not once did I get to make a sand castle with Lochlan or bury him in the sand, not once did I get to sit in the backyard with a fire and roast marshmallows, and not once did I go camping. I have spent so much time sitting, or in bed, or feeling gross, or in pain and I'm just hating that I'm missing out on so much. I love summer and doing things that are outdoors, and relaxing and calm, and I missed all that this year. I also feel like this summer Lochlan really came into his own being a "big kid," and I missed so many opportunities to help him grow and learn and have fun. I didn't get to play at the playground or take him to the zoo. We didn't get to go canoeing or hiking or splash in a waterfall. There are so many places I want to explore with him, and I just feel like that has been stolen from me. 

This summer has also been really hard because I have started to come to the realization that having more children is not going to be possible for me. My cancer has been exacerbated by both of my pregnancies, and - after the battle I'm forging now - I have to do everything to avoid another relapse. It breaks my heart that Lochlan is going to grow up without a living sibling. And even more, it hurts that he has had to play mostly by himself this summer because of it. Saoirse's absence is being felt majorly as I watch him sit in a kiddie pool full of dirt digging by himself rather than chasing his big sister around the yard. His face seems so sad, and I wonder if he feels like he is missing out, even though he doesn't really know any better. 

Parenting Lochlan has been a real struggle for me since he was born. I haven't been able to connect with him in the way I feel like I connected with Saoirse. I feel like I'm " blaming" him for my cancer, and at the same time distancing myself so that if something happens, the heart break won't be so bad. It's crazy - and unfair - and I HATE myself for it. I spent my whole life growing up just WAITING to be a mom - it was my career goal, and my life goal. And now that I have gotten my wish, it is trying to kill me - literally. It is such a surreal feeling for me to want to send him off all the time, and spend my time doing "nothing" or doing something that doesn't involve parenting. I wish that I could separate his existence from my cancer in my mind, but so far, I just haven't been able to force myself to do it. 

Round 4 is in the books. I was hoping that by this time I would be in remission and that we would be doing a couple rounds to just make sure it was all gone. It's not the case, and I'm stuck in a holding pattern still until we see more results. Luckily, many of the major physical issues I had for the first two and a half cycles have subsided, and I am feeling like I can be more like myself and am more able to do some normal things. I am hoping that things keep reducing, and I keep feeling well, and I can start to do some of my normal activities. I need to feel like a person again - not just a patient - and I hope that maybe I can draw myself back to life. 

One Step at a Time

The second round of Brent took a major toll on me physically. The second dose is notorious for being the worst, so I had sort of mentally prepared, but it was a hard thing to deal with. The joint and muscle pain, the neuropathy in my feet first thing in the morning, the extreme exhaustion just trying to get around with all that. It was super hard for me to have to be back to relying on others for almost everything again. There were definitely times that moving wasn't so bad (and the symptoms seemed to ware off by my next dose), but as soon as I felt a little better, I was so tired I had to sit again and the whole "stiff joints and hard to move" cycle started again. 

Eating has also gone back to being more difficult. We haven't been getting as many prepared meals delivered, so more cooking has been required. I haven't had the voracious appetite I had, and foods are harder to pick out (sucky part about chemo!). Having hunger but not wanting anything we have in the house has been a big challenge, and there are days when this is so amazingly frustrating I eat almost nothing (or just salad and fruit which is not exactly calorie dense). Because I haven't had any real nausea, I haven't been forcing myself to eat constantly and that is showing. My weight is "stable," but I need to gain a few pounds (or like 15) and eating will help with my energy so I have enough to exercise and build my muscles back up. 

My third round was "delayed" by three days (well, the weekend) because I had an event that I desperately wanted to attend on my normally scheduled chemo day. Luckily, my doctor was totally ok with this change, so I was able to attend! I went to Jacobs Pillow in the Berkshires to attend a talk and book signing by a photographer who's work I have been following since I was probably in middle school - Lois Greenfield! Mike and I went out for the night - we drove and stayed in a Super 8 hotel a few miles away (I would love to stay out there for a month! It's so peaceful and beautiful and relaxing. Such a change from here). When we arrived, I was a bit sore and stiff from the drive, so we rested (with my swollen feet up) for an hour and then I BEGGED to go early so we could get good seats. We got to sit FRONT ROW and spoke to some awesome people while we waited (an hour!) for the event to start. I brought my marked up copy of Lois' second book (couldn't find a copy of the first book- I either didn't have one, or lost it), and bought a copy of her new book while I was there. Her talk was so amazing - and I even got to ask her a question at the end that led to a great topic discussion. 

She signed books after the talk, and I got her to sign my marked up book and my new book. I also got to show her a print of my work (which I gave to her to keep) and she told me to keep in touch! I was so excited and I can't wait to reconnect with her in the future. What an amazing way to spend a day that I was supposed to be stuck inside with an IV in my arm! 

Round three went off without a hitch, and over time my stiffness and pain started to subside. Moving started to get a bit easier, and I started to feel a bit more normal. I scheduled my scan for the 29th of august, so scanziety was setting in, but I was confident in how I was feeling so I didn't think too much of it. Hopefully all will go well. Keep your fingers crossed!!!