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:
- Adriamycin (also known as Doxorubicin Hydrochloride) – He said that some adverse effects can be weakening of the heart muscle, a lower blood count, and the dreaded loss of my hair. I wonder how I’ll look when I’m bald…I guess I will probably be finding out!
- Bleomycin – This can cause photosensitivity, so I’ll have to break out the sunscreen this summer! This is also the drug that will have lifelong effect on my lungs, so I will have to be careful whenever I have any medical procedures in the future.
- Vinblastine Sulfate – It can cause numbness in the fingers & toes, and also digestive issues like constipation. (Now, didn’t you just need to know THAT about me!)
- Dacarbazine – This drug can cause low blood counts as well, but is the one that will give me the mild nausea. Thankfully, the doctor told us that the nausea medicines that are out now are so good, that nausea is usually pretty minimized.
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.