This is going to sound a lot like complaining, and for that I apologize. But these things have been weighing on my mind lately and sometimes it helps to type it out and get it out there. As most of you know, I let my hairdresser shave my head last night. I was just going to cut it, but when he started shaving it, a huge weight lifted off. I hadn’t realized exactly how bad my scalp was hurting. I had previously described it as tingling, but it had moved on to burning. As he shaved my head, though, the pain receded. That doesn’t mean I didn’t cry. My hairdresser is amazing and kept me talking while he did it, so I didn’t cry till I was getting ready to head out the door (and on the way home). When I got home, though, it was okay. Little Man said, “Mama hair” and rubbed my head. He hugged and kissed me and cuddled with me and it helped. My frustration, however, is this: please don’t tell me that it will grow back in (thicker, curly, whatever). My doctor has told me that I will probably be on chemo for the rest of my life. Everyone says it will grow back when I finish chemo. Guess what? I don’t expect to ever finish chemo. So when someone says that my hair will grow back when I finish, it’s not encouraging, it’s discouraging. Please don’t do it. Feel free to tell me all about the pretty scarves or hats or wigs I’ll get to wear. But don’t tell me it will grow back.
My other frustration may sound petty, but it is what it is. It’s been bothering me for awhile. I have a rare cancer. And I’m really tired of seeing all the fundraisers for breast cancer. Breast cancer is way over-funded based on the amount of people who actually have the disease. I get it. Breasts are important – both to men and women. The “Save the TaTas” campaign makes me smile every time I see it. I have a dear friend who lost a mother to breast cancer and another friend who survived it. But what about those of us with rare cancers? Did you know that there is no set treatment regiment for what I have? I am currently receiving a chemotherapy that we think might work based on the fact that my cancer is in my abdominal cavity. Can I just tell you that that doesn’t inspire a lot of confidence on my part? I traveled 900 miles to see one of the best doctors in the world for my cancer and even he can’t tell me the absolute best treatment for my cancer. Why? Because my cancer doesn’t receive the funding that other cancers do. And that frustrates me. But what can I do? This is happening, but what can I do about it? I can post about it here or on Facebook, but what do I know about fundraising? How does a person get beyond their personal friends and family and get the word out there? I don’t know and it bothers me.
At this rate, my hair should be all gone by the end of the week. It’s falling out at an insane rate. My scalp actually hurts. It’s not really a burn, but definitely a tingle – and every time I touch it it hurts. I’ve taken to wearing scarves around the kitchen because it freaks me out that there could be hair falling out in my food. My hair salon is closed today, so I’m debating whether to wait until tomorrow to call or to call my hair dresser at home. He offered to come here to my house to cut it for me when the time came, but I feel sort of bad calling him on his day off. I guess we’ll see how much falls out today and if I can take it any more or not.
Health-wise, it’s been an okay weekend. I seem to have energy in the morning and crap out in the afternoon. Saturday morning we took Little Man to a Cancer Society fundraiser event for kids. It was great. He had lots of fun and I felt pretty good as well. I also got to talk to the event coordinators about some local events for cancer patients. That afternoon, though, I had to take a nap. Yesterday, we went to church. It’s amazing how much more thankful I am to be able to go to church now. There was a church picnic last night that I really wanted to go to, but I wiped out around 4:00. I didn’t have to nap, but I did rest on the couch while my boys played outside. Today I’m exhausted, but some amazing friends from church are going to bring us dinner tonight! Well, I think I’m going to eat some breakfast and crawl back in bed.
Whew. My “short day” ended at 1:30. I double-checked my orders from MD Anderson and I was supposed to be receiving 90 minutes of Gemzar, not thirty minutes which is the typical treatment. So that makes my short day long and my long day even longer. But this is what my doctor from MDACC wants, and there’s a reason we chose that doctor. I met with Dr. F. today to go over my symptoms from the past few weeks. She was very impressed. Apparently I’m on a very high dosage of what I’m taking and she thought that I would be much worse off than I was. How about that? For once in the past six months, my body did something good! I’m still not sure if it will get worse as I get further along, but for now I’m happy to hear that I am doing better than my doctor expected.
My hair has started falling out. It’s not excessive but it’s definitely happening. Did you know that when hair falls out it’s not just the hair on your head? My eyelashes were the first thing to fall out and boy is that weird. I still have some but every time I find one I’m a little freaked out. I hope they don’t all fall out.
Dr. F. filled out some paperwork for me today to send to the company that is handling my student loans. We have been trying to get the payments suspended while I am taking chemo, and I called a week or so ago to follow up on that. After speaking with me a little bit, the representative brought someone else on the line to talk to me about something they have called “Total and Permanent Disability”. They sent me the paperwork, I filled out a section, Dr. F. filled out a section, and we faxed it back. Now they will review it and then they will send it off to the US Department of Education. They will then decide if they want to discharge part or all of my student loans. I’m almost afraid to hope for it, because part of me really feels like we should pay that money back. But considering I will never be going back to work, it would be a huge blessing for us to have it discharged.
We meet Wednesday morning with the teachers at the local elementary school to see the results from Little Man’s tests and write his IEP (Individualized Education Plan). I’ve done this many times from the teacher side of the table but never from the parent side. It will be interesting to see if it is any different. I should probably scrounge around the internet and see if there are any standards for children aged three so I know what goals to have in mind. I guess that’s about it for now. I’m getting a little tired so I’m going to go rest.
Today I felt well enough to keep my son home. We had a meeting this morning with the public school system to see if he will qualify to go for speech. Before that, though, we spent quite some time playing with his cars. We talked about up and down, and when cars crashed or fell off. That’s a lot for him. My mom came over to go to the meeting, but there were enough teachers present to keep him corralled. He played on the school playground for a bit afterwards, then came home and ate lunch. He was acting tired, but he did not nap. I don’t think he’s napped in a week. Meltdown happened at 3:30, so we are currently watching “Monkey Bear”, which is The Jungle Book. He’s asking for “Puppy Dog” but I just can’t watch it again right now. I do know that I will have bruises all over me tomorrow. Little Man’s elbow is sharp! And he doesn’t quite understand “soft”.
His meeting went well; it looks like he will qualify. This means starting on September 17, he will be in a class of three. Our neighbor’s little girl J will be a “peer model” (typically developing child) and there will be another little boy. There is one teacher and one aide. How awesome is that? Apparently at least one more will join later in the year on his birthday, but that student teacher ratio is amazing. They will make him use his words and he will learn so much. A speech therapist will come in once a week, but his teachers will be working hard on speech as well. I’m very excited. My husband and I will go back on Wednesday to see the results of the evaluations and to write his IEP (Individualized Education Plan).
As for me, I am doing well. Days 11-13 were my bad days, and those were exactly the days they told me to look out for. I felt tired on some other days, particularly this weekend when we were celebrating our anniversary, but overall I think this will be bearable. I will be able to drive myself to chemo, so thank you so much to those who volunteered to help. I’ve still got the list and there may be occasions when I need a ride to the ER or doctor if I’m feeling really bad and my husband can’t drive me. Chemo starts over at Day 1 on Friday, so I’ll be able to compare to the last cycle and see what to expect. I will probably ask for a few meals on Days 11-13 (and possibly on Day 3 or 4), for those of you asking when to bring them. I’ll keep you posted.
Five years ago today I said, “I do” to the man of my dreams and soul mate! I love you, honey!
Chemo tastes nasty. I have this horrible taste in my mouth all the time. The nurses suggested Lemonheads or something similar to suck on, but I am not a big lemon-flavored person. Butterscotch is dampening it, and sweet tea helps, but if I don’t have something in my mouth … ugh. I’m seriously debating finding some of those Blue Raspberry suckers that I used to love in high school. What were those called? Blow Pops? They had bubble gum in the inside. Surely that flavor would kill some of the taste right?
Also, today was a very scary day for me, hair-wise. I’ve been petrified to wash my hair since receiving my second chemo treatment. It was both more scary than and not as scary as I had expected, at the same time. It was not as scary because a huge chunk of my hair didn’t fall out, like I was expecting. Thank God. I don’t know what I will do if that happens. It was more scary because I realized I had already lost a lot more hair than I realized. I have always had really, really thick hair. Believe it or not, my hair started to fall out at a ridiculous pace right after my surgery in February. I mean, an unbelievable amount of hair. But it had (finally) stopped right before I started chemo. This is what I kind of expected when it started falling out again – hair all over the place: in the shower, all over my house, etc. I used to actually keep a lint brush around because it was everywhere. But it hasn’t been like that. I hadn’t really noticed that it fell out at all. I discovered otherwise when washing my hair. Maybe it’s better this way.
I do feel better today. I hope to run a few errands this afternoon. I’ve also got to pay a couple bills, mail off some important paperwork, and book my flights and hotel for my trip to Houston in about a month. I think I’ve determined that AirTran is going to be my best bet. They have the most clear-cut rewards program and the prices seem to be the best between Atlanta and Houston. My original appointment was too early in the day for me to make it an overnight trip, but I was able to get it pushed back to later in the day. So I’ll have bloodwork at 5:00 p.m., check-in for my CT scan at six p.m., CT scan at 8:00 p.m. (yes it takes two hours to drink that barium crap), and then I’ll see Dr. P. at 9:30 the next morning. And I can fly back home right after that appointment – which is a good thing since it will be a couple days before Little Man’s 3rd birthday party. So that’s about it in my world today. Thanks for all the prayers; keep ’em coming!
I’m having a better day today. I took my last nausea pill at 11:00 but I’m still feeling okay. I’m really tired, but other than some nausea this morning, I’ve been okay. My mom is here today. Thankfully, she put away all the laundry for me, as well as washed dishes and towels for me. I found out a good friend is in town for a couple of days, so I’m hoping to see him (and meet his wife) tomorrow. Today has been totally lazy, including a nap, in the hopes that I will have a little more energy tomorrow. I try to save as much energy during the day as I can so that I can spend it with my son and my husband at the end of the day. Tonight my husband is going to have some “guy time” at the bowling alley with some friends from church, so my mom came to hang out with me and Little Man tonight. I will definitely need the help getting him to bed.
Best guess today is that tomorrow will be better. Monday I was tired. Tuesday was a bad day. Today was still rough, but not as bad. I was told 3-5 days after treatment would be the worst days. Monday, Tuesday, and today were the 3-5 days. If this is it, I think I can handle it. Maybe. Hopefully. Ha. If I have more bad days, I’ll take them as they come. If it gets worse after multiple treatments, I’ll deal with it. But for today, I am hopeful.