This will be the opposite of my last post. As I lay here in bed, at six o’clock on a Monday evening, I’m devastated that I don’t feel better this time around. Chemotherapy can make you feel dark and depressed that you literally feel like throwing your hands up and saying “fuck this”. Excuse the f bomb. My fuzzy burnt tongue is back in full force along with all the other side effects that I normally have. And this time peripheral neuropathy decided to make an a appearance. Basically the nerves are being damaged at the tips of my fingers. Seriously.
I have widdled down to a whopping 115lbs today so my main goal was to get something in my stomach. My smoothie I made for breakfast made me want to vomit half way through choking it down. At lunch I knew I would really have to force myself, like really force. I ordered a side salad from the place next door to work and really prepared myself to eat it. After 2 pieces of cucumber and 3 bites of lettuce I ran to the restroom because I was going to vomit. Does urgent care put in feeding tubes because that is my next step?
My heart breaks that I can’t play with my little girls. I can’t help with homework. I can’t go outside with them. I can’t even eat with them. I want to stop chemo. I know it’s not the best answer to all of this but the way I see it, I’ve had enough. Surgery is already scheduled so why can’t we move it up and get this shit out of my body? I know radiation is 4 weeks after so why not? I don’t need your “doctors know best” lecture about how I feel so please stop. My fear right now is that I will go in for chemo in 2 weeks and all my levels will be so jacked up and I’ll weigh 110lbs that they push chemo back a week or two. Then everything is pushed back. My worst fear.
So I did speak with my oncologists office today to let them know that things were bad. They are going to stop the taxotere that I have been getting and switch me to taxol. I feel like this is good news but that’s what I said last time and nothing has changed. The more research I do on it tells me that it is a better decision for me. I will not get my hopes up. I going to try and make it through the next 2 weeks without being a negative nancy but no promises.
And because of chemo brain, I am highly unorganized and can’t seem to remember if I have sent you a thank you card. I had a list going but I think I threw it away. So, I’m working on more thank you cards so please know I’m working on it. I found 4 cards in a purse that I never mailed this morning. Awesome.
My grammar sucks by the way, I’m lazy.
So more good news on the chemo side! Hollar. My doctor cut 2 out of the 4 drugs I was getting, the Perjeta and the Carboplatin. This is great news and should help with all the bad side effects I have been having. I pray that things will be better now. We will keep doing the Taxotere and the Herceptin for the next 2 infusions and then have I will continue the Herception until next July.
Things are finally looking up and I am looking forward to October 18th, my last chemo treatment. Surgery is scheduled for November 15th and then radiation 4 weeks after that. There is an end to all this madness and I can finally see it. I had a wonderful Labor Day weekend with friends and family and ate tons of food. I even went shopping with a good friend of mine as found some kick ass shoes for fall. It’s the little things that make my day. A good pair of leather boots would make any woman happy.
Yesterday was a big day for me, met with my breast surgeon and had my midway point MRI. I had a great visit with my breast surgeon and received some great advice on radiation oncologist and different ways to help with my chemo struggles. I heart her. My MRI was to to determine if the chemo was working, basically to see if the tumor had shrunk and what the lymph nodes looked like. I went in expecting good news because I could no longer feel the tumor or the swollen lymph nodes. When my oncology office called with the news I was so EXCITED, tumor had shrunk. Not only had the 2cm tumor shirk to around 9mm but the lymph nodes looked normal. Best. News. Ever. The nurse practitioner also said that we could talk to the doctor about reducing/changing my chemotherapy on Tuesday too. That was exactly what I wanted to hear.
After all the exciting news I had today, it made the last 2 weeks of chemo hell almost worth it. I said almost.
There is a light at the end of the tunnel, and it involves lots of champagne and pasta.
So I’m two weeks post chemotherapy and still am struggling to get better. This round as been the absolute worse by far. I had the brilliant idea of self medicating starting the day of the treatment in hopes of staying ahead of the side effects. Nope. Failed. Only I would get every side effect that each drug could give me. So basically I have been popping Ambien, Imodium, Hydrocodone, and various other pain pills. I’m frustrated with my treatment plan and honestly believe that I’m receiving too much chemotherapy. The treatment and after effects are getting worse each time and have begun interfere with my ability to stay positive. I want to quit. I want to get a second opinion. I want this to be over.
One of my main battles is my taste and appetite, or lack there of. My mouth feels as though it was torched and then wrapped in a fuzzy sweater. Gross. Both food and drink tastes awful and I just force enough down to stay alive. My weight is dropped to 118lbs which is pretty close to what I weighed in high school. It’s feels super strange and not in a good way. All I dream about is food. I want pasta from Osteria Il Centro. I want a Winsteds cheeseburger with crispy onion rings. I want a slab of ribs from Gates BBQ. Seriously, I just think about eating all day.
This week will hopefully be a game changer. I have my first MRI scan since I have been diagnosed and hopefully it will come back tumor free and the lymph nodes clear. My hope is to have a clean scan and then get the amount of chemotherapy reduced for my next treatment. I’m scared to death to have my next treatment, especially if they don’t change it. I feel like I set up to fail on the dosage that I am on and that it will make things worse. I also meet with my breast surgeon this week to go over my surgery. Hopefully the surgeon will have some words of encouragement to help me get through the next couple months. I pray that I have the strength to make it through the rest of my chemo without any major hiccups. I pray that my family stays strong. I pray that I can eat at the Chicago Pizza and Oven Grinder Company.
Last week was amazing. I felt great, I could taste food and drink, and I even got back to my Pilates class. It is such a relief to feel somewhat normal for a week. The first two weeks after a chemotherapy treatment are the worst of the worst but I know I will feel better the third week. I still have no appetite so I just force feed myself all week so I could get my weight back up.
So yesterday was my third treatment, also known as half way done!!! Everything went as planned and after meeting with my doctors we decided to just start pre-medicating so hopefully I would get so sick like last time. Goal is to stay hydrated.
Today was my oldest daughters first day of Kindergarten so it was a BIG day. Super exciting stuff happening in the Roberts house this week. My youngest is still at her preschool so nothing new for her.
I looking forward to October 18th, my last day of chemotherapy. Finally I am seeing an end to all this madness. My surgery has been scheduled for November 15th and then the hard part is done. Other good news, my taste buds should be back in full effect by Thanksgiving. Best time of the year. Now let’s just pray that I can get through the next two weeks without going under 120lbs and no major complications.
The chemo struggle is real. Eff me. Things did not go well after my second round of chemo to put it lightly. I continued to have the bone pain, chemo mouth, and just general crapiness. What I didn’t expect this round was the severe cramping and abdominal pain. At one point I thought about going to the ER but I was worried that they would just think I was a drug seeker. It hurt that bad. Of course I was In touch with my fabulous team of nurses at the KU Cancer Center, they wanted to do do stool studies before they did anything else. Because I work in the gastrointestinal field I knew that they were checking for c diff, a infection that is common with chemotherapy patients. Just google c diff and trust me, you don’t want this. I was very lucky and was clear! So Wednesday I went in for IV fluids and a tiny amount of morphine and instantly felt better. Today is day nine post chemo and I finally feel semi-normal.
In other news, my genetic test results came in. Both my mother and sister were tested and they were negative. My lovely panel came back positive for the ATM gene which is associated with in an increased risk to develop cancer. For women who carry an ATM mutation, the lifetime risk of breast cancer seems to be 2-5 times higher than the general population risk, with perhaps a greater magnitude of risk before age 50 and then a relatively smaller increase in risk after that. So at this point, they think I inherited this ATM gene from my father. The cancer is maternal on my side of the family and no paternal family history. So that doesn’t answer anything and very inconsistent with the breast cancer in my family. So now we pray hard that my little girls are safe from this evil thing called cancer.
Grr. Imagine all your taste buds float away to cancer hell and you are stuck with everything tasting like cardboard. Oh, that includes water. Yep. Sucks. So I decided that I’m going to just try to get through the next couple months without losing another 20 pounds and then binge out on my favorite food. Most chemo patients suggest avoiding your favorite foods during the chemo process so they aren’t a turn off after you get your taste buds back.
First stop, Chicago. If I could eat in any city for the rest of my life it would be this place. The Chicago Pizza and Oven Grinder is my number one go to place. It holds a special place in my heart as well, my husband proposed to me there.
Heaven on a plate. They also have an amazing salad, dressing, and flatbread. I will gain ten pounds that night at dinner. I can already taste it. There is also a burger place that I have to find again, it was years ago. The Art of Pizza is always a good spot. There is Francesca’s, are they still good? Anyway, I am also excited to try s good steak house. Any Chicago restaurant suggestions would be appreciated.
I’m loving the Kansas City food scene too. My favorite place is Osteria Il Centro and that will be my very first stop on list.
If you haven’t been then you are missing out. Best place in Kansas City. Fact. Then there is JJ’s on the plaza, Strouds Northland, Pig Witch, Garozzo’s, Bristol, and 715 in Lawrence.
I make this list to look forward to something. I miss food tasting like food. I miss carbs. I miss wine. We will be together soon again.