Why in the world is the dentist’s office such an anxiety filled place for me? My dentist (Dr. Carl) is a really nice guy! I’m just apparently a big baby when it comes to work being done in my mouth. Thank goodness for my iPod! I just cranked that thing up so I couldn’t hear what was going on. It was fine until they hit a spot that hadn’t gotten numbed completely – OUCH!! And then, as fate would have it, I’m listening to Owl City’s “Ocean Eyes” album, and the song “Dental Care” comes on. Seriously? And I’m trapped, unable to change the song. I’m just really glad that this is done!
But for now, I’ll just update you on what’s been going on the past few days. I’m surprised a bit at how hard it is to blog on a regular basis. If I had a dollar for every time this past week when I thought about writing, I’d probably be able to get a mocha. 🙂 So I’ll do my best to bring you up to speed…
The most obvious change is that I cut off my hair on Saturday. I am actually surprised at how much it affected me. I’ve never had long, beautiful tresses, but I liked my hair! I decided though, that it would probably be easier on me if I cut it short before I went bald, and now I’m really glad that I made that decision. With as difficult as it’s been to mentally adapt to short hair, I know that if I had just gone from longer hair to bald, it would have been really traumatic. Amazing how such a “little” thing can be such a big deal. 🙂 Wigs? I don’t know. I might stick with hats, but then again, Tom does seem to like blondes… 🙂
I’ve been told that when you’re going to go through chemo, it’s a good idea to get some of the other things you’ve been avoiding (like dental work) done before hand. It had been a long time – probably 4 years or so since I had been to a dentist for a check-up & cleaning. So I sucked in my courage (I think I’ll be doing a lot of that in the next few months) and made a decision to get some of that taken care of. I struggled a bit with whether I should go back to the dentist I had seen in the past (whom, I might say, has not tried to stay in touch with me…) or try and find a new one. I decided that since his customer service was lacking, I shouldn’t feel guilty not going back. You see, since getting cancer and having to start digging into my insurance coverage, I discovered that we (the kids & I) are allowed an exam & cleaning once every 6 months at no charge! They (Blaine & Sharolyn) had gone to Dr. Carl last summer for an orthodontic exam & quote, so on Thursday, I thought I’d schedule them appointments & see if there was any way that I could get in to him as a new patient. It turned out that they had had a cancellation that morning, and I was actually able to get in the same day! Of course, that did end up in another appointment to replace a filling this coming Wednesday. Excuse me if I’m not overjoyed.
On Friday, I had my EKG (Echo Cardiogram) at Samaritan Albany General Hospital. I thought I was going to be hooked up to some kind of monitoring device and have them watch my heart rate, etc. but I was wrong. I think I would describe it more as an ultrasound of my heart. It was absolutely amazing. They were able to see all the valves, and measure the different chambers. She was even able to see which direction the blood was flowing in my heart! When she first started scanning, I asked her if she would be able to see the mass. Towards the end of the scan, she said that she was now going to look at my heart through my liver (that was weird). Sure enough, we were able to see it (the mass). She said, “And there’s the little blood vessel feeding it.” I can’t explain the feeling that went through me, seeing part of my body actually helping this cancer grow. I remember thinking in my mind, “You little bastard.” (Sorry, I know that will probably offend some of you, but I can’t help it, that’s just what popped into my head at the time.) It just was creepy. Here was a parasite, feeding on my body, and it was happening in front of my eyes. I can’t put the feelings into words…it was just really weird.
After church on Sunday, we (the kids and I) went to my mom’s for lunch. Because of Monday’s PET Scan, I couldn’t eat any carbs – bread, pasta, rice, potatoes & ice cream were forbidden. 😦 Are there any other food groups??? The only time it was really painful was when mom brought out her homemade rhubarb crunch for dessert. Grandpa & Grandma Gerig came for dinner as well, so Mom had made a sugar free version with Splenda® since Grandpa is diabetic. I let myself have a little taste of that one, but not much. I wanted to be “good”. 🙂 I think the best part of yesterday though was just sitting out & enjoying the sunshine. Any exercise today was supposed to be limited because of the scan – sometimes I don’t understand how things would make a difference – but I did what I was supposed to be doing, taking it easy.
Today we had to leave the house at 7:00am, just to make sure that we had enough time. I know that there are often cops cruising the stretch of I-5 between Albany and Eugene, so I didn’t want to have to be so tight on time that I had to push the envelope of speed. 😉 We arrived in plenty of time to get to Oregon Medical Imaging – I even got called in early! Prior to the scan, I was supposed to drink 32 ounces of water and have no food. Have you ever tried to do that in the morning – or am I the only person whose stomach gets upset when it’s completely empty and gets full of water??? Not to mention the bathroom trips…
As my brother Ryan said to me today, the anticipation of what is to come is often worse than the actual event. The technician was really good when he inserted the IV – the finger prick to get my blood sugar level actually hurt worse. I didn’t even have to have a drip bag, he put in the IV and used it as a port to give the saline & radioactive tracer shots. Once I was all cozy in a recliner in my lead lined room, I was supposed to just relax (yeah right) and not make any repetitive movements. The hospital WiFi worked in there, so I was able to get my favorite radio station – KLOVE – on my iPod while I reclined. There was a lot of time to think. I tried to concentrate on the words of each song as they came. Since I knew I would have to lay there for 45 minutes to an hour, I was thinking about how many songs that would be if each song were 3-4 minutes long. I think I counted to 5, then figured I was about halfway. Not long after, my body reminded me of the 32 oz. of water I had just drank. The room was equipped with a camera and microphone, so if I needed the technician, I could call him & he would come. Well, I called. He didn’t come. I waited a little bit, and then said, “Hello?” I could hear him a couple of doors down with another patient. He still didn’t come. I tried to relax and hold still (not easy), and called again. Finally, he came & knew exactly what I needed. J
The scan itself wasn’t that difficult. Other than being cold from the fans in the machines, it was just time lying on my back with my arms up over my head. He actually had a lightweight strap that helped me keep them up there without tiring me out. The machine looked like a double CT machine – like two donuts standing on end. It didn’t hurt, and I didn’t even have to hold my breath while it was being done.
This weekend, Tom’s dad had been admitted to the Riverbend Hospital because of problems with his permanent feeding tube. We wanted to make sure that we visited him before going back to Albany, but had to make a stop at the cafeteria first – I was SO hungry. Of course, when we got there (about 10:25) they had just quit serving breakfast (10:15). I’m sorry, but a half a donut & a Vanilla Latte don’t quite cut it when you haven’t eaten anything for hours, and my body was not ready to eat lunch. As we were trying to figure out what we were going to eat, Sharon (Tom’s mom) walked in. We visited for a while and then went up to Don’s room, only to find that his two sisters, Debby & Betty had arrived. That was a fun surprise. We left there around 11:00 because I had an appointment with a social worker to find out about different resources available to us to help with co-pays and things like that.
It’s now about 9:45, and the kids aren’t in bed yet. I’m exhausted. It is so hard to do this emotionally. You never realize how much the family depends on you, and how much you contribute to the household until you don’t do it and it doesn’t get done. But how do you make the others pick up the slack? (If someone has an answer to this, I would appreciate being filled in.) I don’t have any idea how anyone gets through this without Christ. I seriously would go crazy. Sometimes, I have to sit here and almost audibly tell myself to relax, and let it go. I can’t control what other people do. I can only control my reaction to them – and sometimes that is nearly impossible. Meanwhile, I like the quote that was in our church bulletin this week (of course now that I want to write it down, I can’t find the bulletin) but anyway, it was a paraphrase of 1 Peter 1:6, so I’ll just write it here from the New Living Translation:
“So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.”
As I typed this, I read ahead (gasp! J) and just have to include verse 7 as well:
“These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold – though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.”
Ok, it’s time for me to tuck kids into bed – yes, I still do that. Good night.
Yesterday, I had my first appointment with Dr. Sharman at Willamette Valley Cancer Institute. I honestly didn’t know what to expect. Well, I had a little idea. I had talked to some other people that have been there, and they told me a little bit about it.
Before going up there, I had made sure that I went to their website: www.oregoncancer.com and checked them out. I got to see a photo of my doctor & look up the info about him. There also was information that they would need to have when I checked in that I could print out and take with me, so I did that. I read up on a survivor story – specifically Stacy’s story. Stacy has breast cancer and at the same time, her husband is also battling cancer, only he’s losing his fight. Whenever I get down on my condition, I’m going to remind myself of Stacy and how good I have it.
So we arrived on time to the appointment, and were welcomed by the staff there. She was pleasantly surprised when I handed her all the information that she needed, already filled out! She then took a copy of my insurance card, took my picture, gave me a small binder with information about the clinic and took my co-pay. Then it was just time to wait to be called into the room. The waiting area is comfortable, with coffee, tea, and hot soup for those of us that have to be there. In addition to the typical “doctor’s office” stuff, they had a jigsaw puzzle that Tom gravitated towards once we were waiting. There were some people there waiting to be called in, and they had an adorable little boy – only 6 months old – cooing, and smiling and rolling around on the floor. I was impressed by the fact that here was life, brand new life, rolling around happily, while he was surrounded by those of us in various stages of our disease. I think all of us had hair in there, but he didn’t! 🙂
First, we were called into the financial office. There we met the woman I spoke to on the phone the first time I called WVCI. Her name is Denise – easy to remember because that’s my middle name. 🙂 She confirmed my insurance, my deductible amount and the yearly total out-of-pocket amount. The best part of the whole thing is that WVCI is a preferred provider for my insurance (and I have insurance!) so although this is going to be difficult, I feel extremely blessed that I have the coverage I have.
We went back to the waiting room for a while and then the nurse, Angela, called me into the room. She took my weight and height (I guess medications are based on your size), and then the typical, blood pressure, pulse & body temperature. One of the symptoms of Hodgkin’s Lymphoma is having a fever. I usually have a temperature in the 96 & 97 degree range, but it’s now over the 98.4 mark all the time. It doesn’t sound like a big deal, but for me, it means feeling cold a lot of the time. Thankfully, I have a space heater in my office! 🙂
I was told when I checked in, that I would really like Dr. Sharman, and I wasn’t disappointed. He has a very calm bedside manner, and when I was talking to him about having cancer, he said that, “at least you picked the right kind!” Hodgkin’s Lymphoma has a success rate of 80-95%, dependent on the stage it is, and he actually used the word cure. As in, behind-you-done-never-have-to-think-of-it-again cured. I think I can handle that! Mom (who had come along as an extra set of ears) told him that as a baby, there had been a time where the doctor had called her & dad in to the room, and told them that he had found some unusual white blood cell counts in my system & wanted me to be checked out regularly for leukemia. When she was done talking about it, Dr. Sharman told her that the story did not surprise him. Apparently, other Hodgkin’s patient’s have had similar stories about their history. Hodgkin’s also has something to do with the Epstein-Barr virus but I didn’t understand exactly what.
He asked me a lot of questions about how everything started, my symptoms, etc, and then finally got to the information that I was eager to hear about – what is going to happen now!
Dr. Sharman said that I have a few tests that will need to be done in the next week. First, I will have to have an EKG done so that they have a baseline for my heart – hopefully I won’t have any of those crazy PVCs during it, but since that’s what got me here in the first place, I guess it doesn’t matter. That is set to be done on Friday, 4/20/12 at 8:45 am at the Samaritan Albany General Hospital. On Monday the 23rd, I will go back down to Eugene and have a PET scan done starting at 8:15 am. They told me that when I get there, I will get an injection of something, then rest for an hour, and then they will do the scan. The PET scan itself will take 30 minutes to an hour and will be a full torso scan so that they can see if the Hodgkin’s has affected more than just my chest area. With Hodgkin’s Lymphoma, the diaphragm is the dividing line. It makes the difference between Stages 2 & 3 cancer. So a basic explanation of Hodgkin’s Lymphoma is this: If an area(s) on only one side of the diaphragm (above or below) is affected, then it’s Stage 1 or 2, but if both sides have affected areas then it’s Stage 3 or 4. So the PET Scan will show whether any other areas are affected. On Tuesday, I will have a Pulmonary Function test done so they can have a baseline for my breathing. I guess one of the drugs that they will be giving me in my cocktail can affect the lungs – actually for the rest of my life – and so they need to have somewhere to start. Finally on Thursday the 26th, I will meet again with Dr. Sharman, and he will do a bone marrow test on me.
Once all these tests have been completed and he has come to a conclusion as to what Stage I am at with my cancer, then I will be starting chemotherapy. He said that I might have to have radiation as well. In fact, I seem to remember him saying something along the lines of it “not taking much” to push him over the edge on the radiation decision based on the location and size of my mass. As to chemotherapy, he said that he will be treating me with the following drug combination known as ABVD. It’s comprised of the following 4 drugs:
So at this point, Dr. Sharman says I will be having this concoction once every 2 weeks for 4-6 months. He said that I can expect to see my hair start falling out around week 3 or 4, but I talked to the mom of another Hodgkin’s survivor today, and she said that her daughter’s hair started falling out around day 10 or so. This is going to be an interesting road, that’s for sure. He said that after 2 or 4 cycles, I’ll have another PET scan, and they will be able to assess then how the chemotherapy is affecting the cancer.
According to him, Hodgkin’s Lymphoma is a slow growing cancer and with the location of the mass in my chest, surgery is not an option for me. As I mentioned earlier, radiation may be a treatment that I will have to have, but as for right now, it’s not a for sure thing. I guess time (and tests) will tell.
The very best part of this whole experience was at the end of the appointment. I guess that in our conversations, it became apparent that we are Christians. It turns out that he is a Christian too, and always prays with his Christian patients at appointments. Before he prayed with us, he pulled out his iPhone and found the following verse in a Bible app: “Do not be anxious about anything, but in every situation, by prayer & petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7. Amazingly, this is exactly what I’ve had recently, a “peace that passes understanding”. I am not afraid of the long term, but the short term is the part that is scary.
If you think about it, you can also pray for me in regards to my job. I think the hardest thing about this is how unpredictable Hodgkin’s is. Since last Friday, I’ve been feeling great, but today, I spent the day in my bed, just not feeling that great. It’s so weird. I feel like I should be fine, but have just been really tired all day, and even had some minor pain and burning in my chest this morning, and off & on throughout the rest of the day. I just need to be able to realize that I can pass on clients, and trust that God will provide for us. It sounds like something so easy to do, but actually DOING it is the hard part. However, days like today remind me that I am sick, but that as long as I take care of myself & listen to my body, I will do better than trying to be super-woman. 🙂 (I can hear all of you agreeing with me by the way!)
I am so glad that I have the support and love of friends and family. If it weren’t for them and God, this would be a very difficult journey. I’m not saying that this road is going to be easy, because I know it’s not. However, I also know that I am at the right place for this battle. God will be with me, whether I’m hooked up to an IV pole or being poked, prodded or scanned. And with that information I can be at peace.
Sorry this got so long, and I’ve probably lost most of you that started reading the blog. I’ve decided that I want this to be a journal of my illness, treatment & ultimate triumph over this disease, and if what I have to say can help someone else who has recently been diagnosed with Hodgkin’s Disease, then I’m willing to go through it. There may be posts that are more clinical than others, so just read what you want and skip the rest, otherwise, hang in here with me and we’ll go on this ride together. Thanks for listening.