I didn’t realize it had been this long since I updated. A lot has happened. Sunday was a fun day, I felt pretty good and we went to the neighborhood picnic at my parent’s which is always good. Fletch didn’t get out of the bounce house for 2 hours I think. It was good to see everyone.
Monday was pretty much an epic fail. Every emotion I could have had came to the surface. It wasn’t pretty.
There were some that were huge highs – people offering us help that was such a tremendous relief that it made me super emotional. Yet even in that relief, there is a guilt knowing that we need that kind of help. I’m used to being the one offering to do things for people and sometimes it’s hard to swallow being the one in need. I’ve got to get used to that because I know we need the help and I am so grateful for it being offered. This weeks help has come in the form of some amazing, amazing people. Fletcher has been out of therapy for several weeks with my diagnosis and finding out about our deductibles for insurance, etc. and he has started acting out because he isn’t able to regulate his behavior. His therapist worked out a way that she can see him without us being put in a bind, which is something I never expected. Also, the cleaning company who comes to our house is owned by a wonderful woman and she, along with her entire staff, offered to come help me clean out the house and put it in the right condition for my chemo, along with helping with the every day stuff. Both offers had me completely overwhelmed. Not to mention all of the people who have donated to the fundraising site, sent cards and gifts. I am just really blown away by my friends and the support you’ve shown me already. Seriously – there is no way for me to say thank you enough.
There were also some huge lows. Realizing that I was starting chemo the next day. That this is REAL. I think it finally hit me. How unfair it is that I have to go through this, that my family has to. That Fletch will have to be afraid of all the changes going on with me – his security blanket. That Eric has to worry about losing me. That my parents have to go through their daughter having cancer. My lump was found at the end of last month. 5 weeks ago we had no clue that anything was going on. Life was good. It’s amazing just how fast everything can change. Everything.
But, here we are. I have survived this long and I will survive a lot more than this. I will tell you about my day today, but the important thing is that I am now fighting back. My body is full of all kinds of drugs right now, but one of them is Taxol. Yes, there will be side effects. My body will go through a lot. My hair will start falling out in about 2 weeks. But it is fighting the cancer. From this day on, I am getting better rather than worse.
Over the weekend, my biopsy sites got a lot more colorful and painful. I was starting to wonder if one of them had gotten infected because it was so painful. But luckily it looks okay and I think it’s turned the corner – I should have taken pictures yesterday but I did get one today. Here it is:
My port has stopped hurting and feels to me like a huge piercing. I didn’t expect it to feel like that, but they told me today that they’ve heard that description before so I guess it’s not just me. I also noticed this morning while brushing my hair that you can see the catheter line that goes up to my collar bone when I move my arm. It is still pretty freaky. I’ll try and get a pic for you.
So… here’s how today went. Mom picked me up at about 8:00. Eric took Evelyn over to my dad’s and Fletch over to his friends house. We checked in and after a bit of paperwork they took me back to “access my port”. I was pretty nervous. They had a whole ton of equipment in the sterile packs like they were getting ready for surgery. The nurse got all sterile and cleaned me off. She called another nurse over to give me “the spray” which numbs the skin. I had heard about it but it wasn’t what I expected. It reminded me of the air you spray on your keyboard to clean it – it just comes out super cold. She sprayed it in bursts on my port area until the skin turned white so she basically froze the skin, then they quickly jammed the needle in and secured it. I really didn’t feel much, maybe a little pinch but it was a bizarre experience. I could see the needle and it was a 1 inch straight needle with a flat back that adheres to the skin. A catheter line was attached and they secured the whole thing to my chest with a clear adhesive rectangle. It really wasn’t that bad, but seeing that needle go straight in was a little freaky. I know it’s just going through the skin and into the port, but I didn’t realize the port was that thick. Then she attached a syringe and got some suction going and pulled out blood – I’m pretty sure I even told her it was crazy to see the proof that it was attached to a blood vessel but everything worked perfectly. She took a couple tubes of blood and all my levels came back great. I met with the doctor to get a final “this is the best thing for you to do” and an exam. She said that the PET scan results had just been sent back that morning and she didn’t have the films yet, but she came in a while later and gave me copies of them. Pretty cool stuff. Well, it would have been much cooler if it didn’t show cancer but still pretty cool images.
This is the PET scan – the black dots show areas where the radioactive material collects. The brain, bladder and a few organs will always light up. That black dot in my chest is the tumor.
This is the image from the CAT scan – multiple images of the tumor.
These are the “before” pictures as we will soon be obliterating it and it will melt away. The oncologist told me the soreness I feel should go away within a few days. It’s sore because it’s growing so fast and the chemo will stop that immediately so when the soreness goes away, it will be some fast proof to me that it’s working.
The infusion center is a bunch of recliners stationed around a large room. Some of them are just along the wall, some are in semi-private areas that have little walls. I got one of the semi private ones. First they gave me 20mg of a steroid. This is to help combat any allergic reaction and hopefully help me not get a lot of joint pain. Next, they hooked up a mixture of Benadryl and stomach medicine. I’m sure you can guess what both of these are for. She warned me that the Benadryl was a really big dose and it would make me feel loopy. It did not disappoint. It took a while to kick in so I thought maybe it wouldn’t affect me and then while we were mid conversation it hit me and I realized I had no idea what anyone was talking about. I couldn’t think of words when I tried to talk. I started having to make frequent trips to the bathroom because they were giving me saline along with everything else and I had a lot of trouble walking. It was interesting. They finally started the Taxol which they have to take precautions to even load onto the IV pole – the had to put on a special outfit and everything because it’s harmful if it even touches your skin. She gave it to me slow, and I didn’t have any reactions. Mom and I watched Grey’s Anatomy on my iPad. It was hard to stay awake. The Benadryl and Taxol both cause drowsiness. Here I am getting treated:
As soon as we got home, I passed out. Like drug induced coma type sleep. When the kids got home I couldn’t make my eyes open and Fletch thought I was playing games with him. At least he thought it was funny instead of scary. Once the Benadryl wears off, I may be unable to sleep (how’s that for irony?) because the steroid will keep me awake. Should be an interesting night. If I can’t sleep, I’m supposed to take more Benadryl (ha!). For those who have suggested it, I asked the nurse about melatonin today and she said it’s a no-no for breast cancer patients. Glad I didn’t buy it the other day when I was thinking about it.
So now I wait to see what side effects I have. You guys may get to know me way too well.
Severe diarrhea – she said it can be life threatening because people get dehydrated so fast so I have explicit instructions for taking meds. It could start as early as tonight.
Nausea – Taxol isn’t super bad for nausea and vomiting but I am a puker so I’ve got meds on hand.
Mouth sores – I have to start a special rinse 3 times a day to try and fight these little suckers off.
Sun – I will be extremely susceptible to the sun, I will get bad rashes if exposed. The example she used was one of their patients who went out without sunscreen for 10 minutes and got the rash really bad. 10 minutes. Holy cow.
Infections – I am supposed to stay away from fruits that can’t be peeled, salads, etc. unless I prepare them myself and wash them REALLY well. No getting my nails done, getting scratched (stay away from animals), pretty much live in as much of a bubble as possible.
Sore joints, constipation, dry skin, etc. Gotta really take care of myself. Lots of hand washing, stay away from people, etc. But it’s all better than having cancer, right?