Blogging when you don't feel good it is definitely much harder than blogging when you feel OK. When I started blogging I had bad days, but I was fortunate to have many good days. Recently, I've had many more bad days than good days.
This past week was my first week back in chemo, and I really feel it. I don't know if it was the chemo or my liver that made me sick, but I was puking before I got my chemo.
Last Monday’s drive to Dana Farber in Boston went very well; we barely hit any traffic, we barely got lost, for the most part we were running on time and everything went rather smoothly. But my stomach was bothering me, and had been for days. When I say my stomach is bothering me, it's really my liver — it's so big that it's pushing on a lot of organs, making things very uncomfortable. I have been very fortunate to have had not too many days where I needed to vomit.
The chemo I am on is administered much more easily than my previous infusions, and while I could receive my treatments in Connecticut, I feel it is smarter to get my foot in the door at Dana Farber now, in the hopes that I will become eligible for a clinical trial in the future.
I still walked in to chemo with a smile on my face, full of jokes and sarcasm and grateful to be starting treatment. I am still surrounded by such remarkable people and great help. So this won't be a long blog because like I said before blogging while you don't feel good isn't so simple. So I'm going to go back and rest, eventually try to eat and get fluid down and, most importantly, feel better. I will keep you all updated and in the loop!
Here is an example of how I feel:
Have you ever been really hung over and you knew that for the next few hours you should be careful with the liquids, maybe don't eat and rest it off? Then, in between 2 and 8 hours, you pull yourself off the floor and go eat some Chinese food or chicken wings.
The only difference with me is I don't know when the hangover will end, so I can't go eat and drink a huge glass of ice water. Because lately, whenever I think I'm feeling OK, a few hours later the hangover has begun again. Although I have had zero alcohol in over a year, I'm still a champ! After all those years of practice in college, I know how to pull myself off the floor and I know the drill. I just need to learn the signs of when it's going to happen so I can go on the defense. Maybe there will never be warning signs and this is it until my liver gets better.
Thank you college for the real-life training! Now I just need to find a clean cold surface to rest on in the dog days of summer!
Today I walked into Dana Farber for the second time. The first time was a consultation and they were absolutely wonderful. Today I was lucky to be able to get a follow-up appointment (very quickly) to discuss clinical trials and treatment plans.
It’s no secret that my liver isn’t too happy right now, but we hoped that a certain clinical trial would be a good fit for me. Unfortunately, we learned that my liver tests are too high right now and we need to act fast to start my next treatment. If you’re wondering if I'm sad about not getting into a trial right now, I’m not! I will always be eager to jump into a trial at some point but the medication I will be on - Eribulin (Halaven) - is a type of chemo that would have been in my trial anyway.
My biggest decision today was whether to continue treatment (Eribulin) here in Connecticut or to make the jump and join Dana Farber full time. Eventually, I would need to leave for a bigger hospital. Even though many have faith that this type of cancer will go away, it’s not going anywhere for right now. (And medically you never stop being Stage 4 with breast cancer.)
So.... Drum roll… we are heading up to Boston for treatment! I will miss seeing the Starling Darlings all the time and, as my oncologist says, I will still see her from time to time as well. It’s scary jumping to a huge hospital but I'll be in good hands and close by clinical trials for when it’s my time.
Back to chemo! Don’t feel bad for me; do you remember my video of my last day of chemo? You will hear me say, “last day of chemo, for now!” I never wanted to fool myself that that day I would walk out of chemo and never return. I have metastatic breast cancer, which means my journey won’t be the traditional: surgery, chemo and radiation. It’s another reason why I choose to share my story so publicly. Advocacy and awareness is being able to share your good, bad and the ugly, or how else will people know that Stage 4 needs more?
But now that I’m going through chemo again, I will lose my hair again, but this time I don’t plan to have my husband shave it while I wept in the corner! If I need to lose it again I'm going to celebrate and party through it! I haven’t had a cancer party, but I sure the heck deserve one!
While it does not have any sign of metastaticization in my brain and my bones seem to be healing still, but my liver is unhappy and developing more lesions ... probably the reason I can't eat (it's likely to be pressing into her stomach). So now i'm off ibrance and letrozole and awaiting to hear about if there are any clinical trials at either Dana Farber or Sloan Kettering I can immediately getting into.
Over the past few weeks I’ve had several moments to be grateful for and a growing number of moments where keeping my eyes open and staying upright has presented some difficulties. I’m tired! Plain and simple I'm starting to feel a type of tired I didn’t imagine possible.
My right eye twitches, while I am tempted time & time again ‘what if I close my eyes while going up these stairs… what would happen?’ I contemplate closing my eyes and resting for a few minutes all the time. But somehow I keep moving, working, smiling, laughing and living.
Then I lay down, nap or sleep and I wake up like I just ran a marathon and didn’t sleep one wink.
I keep going. I push forward. I smile and say thank you when people comment on how good I look. And up until a couple weeks ago I wasn’t completely lying when I said I felt well. But lately the fatigue is winning.
Are these side effects to my medication? Is this my cancer? Is it just life during the summer? Your guess is as good as mine.
BUT I'm just so tired! I’ve been in bed for over an hour and I can’t fall asleep. My eyes are so tired and my upper stomach hurts like a rock is stuck inside. My nausea increases while my appetite decreases each day. I save most my extra energy to assist the non-profit I started prior to my cancer diagnosis but I see myself struggling with that as well. My body feels weaker and weaker each day.
As everything gets increasingly harder, people see me as someone who is getting better each day but please bare with me; I do not feel well. I don’t know how long I have and more importantly NO ONE knows but I'm so tired. Thinking straight, juggling everything mentally and remembering anything is so hard. I feel the hormone therapy now, I’m sorry if I'm extra moody, emotional or edgy. I do feel more irritable every day.
I bet no one is surprised to hear that cancer is tiring and hard.
I guess you can say I'm good at hiding it!
But invisible diseases are hard for people to understand, its hard to work with us, its hard to emotionally support us. Our lives are rollercoasters! When medications are going well we might appear like super woman but as time goes on, and medications fail we get more and more tired.