I did it!!!!!

I had my CT scans this morning and an IV for the first time - and I did it!!!!!!! :) :) :)

I wish I could write more right now, but I don't have much time. I have a radiologist appt at 1pm (in one hour), then my bone scan at 2pm, then the urologist at 3:30pm. I really hope this day doesn't end on a bad note. Right now, I'm feeling great - because I did it!!!! :)

For now, I need to eat lunch. Some yummy soup brought by a friend yesterday!! :) And the hospital said I need to drink as much as possible. So off to eat and drink....and apparently we just realized we have to be there at 12:30pm instead to fill out paperwork. How I wish I could spend the day blogging instead. ;) ha.

Thanks soooo much for all the prayers!!!!!!!

Oncologist Appt

We had my oncologist appointment this afternoon. Again, Steve and my dad went with me. My mom stayed home with the boys.

The oncologist was a very sweet woman at time. That part was true. But wow....it was far from what we expected. However, Steve has now informed me that he and my parents may have all known ahead of time (due to some research) that this was more serious than any of us had realized. It was an awful afternoon. I can't even write much about it now. I am 34 years old, and the oncologist just described my cancer as being "advanced." And she talked about areas of concern of where it could move....areas which are quite scary.

So now in addition to the 2 CT scans and bone scan tomorrow morning... I will be seeing a radiologist to talk about radiation therapy. Then the urologist again a couple hours later.

Then Friday, I have another MRI. And on Monday, I have 2 more MRI's. Then things will probably move very fast into radiation or surgery.

But what was made clear today is that this is only the beginning. It's going to be a big battle. My hopes of this being a smaller scale battle flew out the window this afternoon. As the doctor said, it is treatable, but it is not cureable.

I can't believe I'm even able to write this much right now. I was sobbing and sobbing at the doctor's office. They even brought in a social worker to talk to me and gave me half an anti-anxiety pill on the spot. So either that pill or our God is giving me the strength to be able to type right now.

On our way home, I asked Steve to call a friend to have her pick up Kevin, feed him dinner, and have him play with their kids for the evening. I didn't want Kevin to witness the emotion in our home this evening. And I knew I couldn't deal with facing my mother when my dad told her the summary of our visit. I was already nauseous from all my crying and needed to take care of myself. I made a point of being the one to tell Kevin that he was going over to his friends' house to play and eat dinner. He cried!! But in the end, he was ok, and he brought along his gankie and 2 stuffed animals. Steve and I headed upstairs to be alone - and for me to try to cut the pain. I was overdue on my narcotics, plus the stress had really worked me up and hurt my muscles and nerves. After a warm bath and some narcotics, I'm coping again. Now my parents are at the drugstore getting 3 new prescriptions for me - 2 pain meds (one is stronger than the narcotics - ugh) and valium. Now I also need an over-the-counter med to counter some of the side effects of one of the pain meds. So it freaks me out to see the quantity of pills increasing already.

By the way, after all my bawling, a nurse came in and said they realized they should do a simple blood test today before my tests tomorrow. You've got to be kidding me!!! I actually had to say no. I had been crying so much, I was in so much pain, and I felt nauseous from what all had just happened. I think they can save one more needle for tomorrow. And they did agree to do that. I am not a super hero.

Some friends from church have assembled a prayer night for me at church tonight at 7:30pm. Praise God for that!!!!

Thank you ALL for your prayers and encouragement!!!!!!! I'm so glad already that I set up this blog to communicate with everyone. And it really is so therapeutic to me to be writing like this.

Urologist Appointment

I had my urologist appointment this morning at 8:15am. Steve and my dad both went with me. It was far different from expected, and we really didn't get that much time to talk to him. But it was enough that he absolutely scared me to death. I had already been forewarned that he is an excellent surgeon, but that perhaps he wouldn't be the most warm fuzzy person. My doctor was right. He did a great job of telling me all the things that COULD be wrong that we haven't discovered yet... So more tests will be done to find out for sure, but now I'm absolutely petrified about the possibilities. And he actually said that based on my age (I'm only 34), that this may be an aggressive cancer - because it has already taken over 3/4 of my right kidney and moved on. I imagine some people might like to hear the full range of possibilities. I am not one of those people. He scared me to death.

He also wasn't able to see the actual MRI images yet, because they were busy trying to download them onto their computer. Well, in all the time we were there, only half the pictures had downloaded. There were 50,000 images thus far!!

Fortunately, we then moved on to talk to a very nice woman who worked hard on setting us up with some ASAP appointments, and she truly made me feel more relaxed. I just needed to see a kind and compassionate face. We sat there while she made phone calls and persuaded people to give me appointments sooner than what they originally said was available. She also told me that although the urologist doesn't always have the best bedside manner, that he is definitely the best urologist and she would definitely want to go to him herself.

So tomorrow (Thursday), I will go to the local hospital for tests all morning. I will have 2 CT scans and a full body bone scan. We are to be there at 8:45am for a 9:15am appointment. I can't eat after 5:15am, so I will probably get up early to eat and to take my last dose of narcotics before the tests begin. After the CT scans, I will have to wait around a couple hours until they can do the bone scan (after they've injected something in me). I should be done by 1pm. Then I will go back to the urologist at 3:15pm. But they said to call their office if I'm done at the hospital early, and they'll see me early. So on the one hand, it's fabulous that they're doing everything so urgently. But their urgency also contributes to my fear.

Many will think this is silly, but it's not silly to me... My biggest fear about tomorrow morning is that I have to have an IV. I have never had an IV in my life. I am absolutely petrified about needles. Prayers for making it through all of this would be greatly appreciated!!!

Once I get beyond the morning, I'm quite scared to hear what the urologist will say in the afternoon. And I already know that I don't like his presentation. sigh.

My dad asked the urologist about timeframe (we didn't have much chance for questions today), and he said that in 2 weeks, I should be in therapy. He said everything in a cryptic way. In other words, I should have surgery within the next 2 weeks.

Thanks so much for the prayers.... I need that sense of peace to come back!!!!

How I'm Doing

I think I'm probably doing as well as can be expected right now - but to say that I'm doing "well" doesn't seem quite right either. I'm pretty scared. But I'm trying to control my thoughts, and I've actually avoided doing online research. I'm just waiting to talk to the doctors. Steve and I ended up doing some very minimal research in the past 24 hours, but overall, I have avoided it. It's enough to just take in what we do know already.

I know a lot of people must be praying, because I'm amazed at the peace that I have felt. But I've also had my share of meltdowns. However, I've often commented that I feel like I'm doing better than those around me. There's a lot more I could share about my thoughts, but I'm not ready to do that yet. Although I'm a very emotional person, I have usually found myself being more factual in the past few days - except for emotional moments with my husband. It's all very overwhelming. But Steve has been wonderful to encourage me to share with him any random thought that runs through my head - and there have been a lot!

But as for how I'm doing physically, I've really been in pain. And now that I've known the cause of the pain, it's made it more scary. It's one thing to have back pain. But it's another thing to be in pain and know that it's caused by cancer in your body. I'm on narcotics, and they help. But they haven't fully relieved the pain all the time. I could increase the dose though, and we've played with that a little bit. It's also scary to realize that narcotics aren't quite enough. My doctor's office did call today. It was a nurse who said that my doctor asked her to call to check on me. She wanted to know how the medication is going and if I need anything for anxiety at this point. I was so comforted to know that my doctor was checking in on me and really cared. But anyway, I've been in a lot of pain. I have to sit on 2 pillows in order to sit at the kitchen table. When I took Kevin to his ophthalmologist appointment yesterday, I had to bring along a pillow to sit on - and I felt quite silly. It often hurts more when I lie down in bed at night, with pain shooting down my leg. It's hard feeling miserable all the time. And it's hard to not be able to pick up Kien. I also can't bend down to kiss or hug Kevin. But both of those facts have been true for quite awhile now. I've basically had to give up "management" of my sons' lives for the time being. Well, not entirely. ;) I am often piping up in the background with Mommy's 2 cents on meals or bedtime, etc. ;) Hopefully this pain will soon be history.

My mom has been here for a week, and my dad arrived this afternoon. He is going with us to the appointments tomorrow. We meet with the urologist at 8:15am and then with the oncologist at 2:15pm. I am nervous to take this next step and hear what they have to say.

Thank you all for your prayers!!!

MRI Print-Out

Steve and I went this afternoon to pick up multiple copies of my MRI (both CD's and print-outs). The oncologist wanted a copy before my appointment tomorrow, so we dropped off a copy there and also went ahead and gave a copy to the urologist before my appointment tomorrow morning. We didn't realize we'd be receiving a print-out and read through the technical details in the car. Of course, we'll have an interpreter tomorrow. But for now, we definitely learned some things. Those things are not good and are scary...but I actually felt better after knowing. And we were able to turn this into joking for the majority of our drive. Laughter is good medicine. :) So as we determined, I have a broken butt. ;) We don't understand the technical locations at this point and will wait until the doctor fills us in tomorrow... but we read that I have 2 pinched nerves and a fracture. So that would explain my pain!! As I keep saying.... see? I haven't been making this up! I'm NOT just a wimp!! ;) The particularly bad part was reading that I actually have 3 tumors in that region which are causing those problems. So I have 3 tumors in addition to the large one in my kidney. But we're off to specialists tomorrow who are going to help me.

Thank You!

I've really been overwhelmed by the outpouring of love and support. Wow - people really like me that much?? ;) ha. Seriously though, it has been amazing. I have actually made a list of those who have offered to help with the boys, those who have offered meals, and those who have offered general help. I thought it was important to actually make note, because we're going to need to take people up on some of these offers, I'm sure.

We also had 3 friends from church come over on Friday to pray with me, which meant so much to me. I've received so many calls and emails. Two friends even came over with dinners this weekend, without even asking. :) ha! That was really great, because although my mom is here and we might have declined if asked, she is really struggling too - so the help was great. :) And I received this beautifully yummy "edible arrangement" above, which I thought was picture worthy. :)

And most significantly of all... I bought a new journal to write in this weekend. And I started by listing the names of everyone who has told me that they are praying for me. I currently have 4 and a half pages of names!! And some of those lines are whole prayer chains or groups. Wow. That is the greatest thing I could receive.... your prayers. Thank you.

The Story

I have had back pain since early in college - therefore for 15-16 years. I assume that it began due to heavy harp practicing in college. So when I injured my lower back in April 2008, it wasn't too much of a shock to have back pain. So in late April, I made the mistake of walking at an outdoor mall with friends while wearing heels. Then the next day, I made the mistake of wearing the same heels to church and holding Kevin (38 lbs) for a long time during the service. I was really in pain afterwards. 2 days later, I lifted Kevin over a row of strawberry plants. Silly. The pain continued until we went to Vietnam in June, although I don't remember suffering much while actually in Vietnam. But when we returned, the pain got worse - probably due to travel and due to carrying a new baby (16 lbs). I've seen chiropractors and physical therapists and had massages. But I kept reinjuring myself due to silly things all summer. Finally, 2 weeks ago, we went to a pool with friends. I had brought a baby float for Kien. This was my first time taking both boys to a pool, and I didn't know what to expect. But Kien immediately knew how to crawl out of the baby float. So I had to hold him during our whole time at the pool. Under normal circumstances, I would NEVER have held Kien for that long. I knew my back couldn't handle it. But I guess the pool was masking the strain. I held him for 1.5 hours. Later in the day, we went to Target...and I ended up in so much pain in the store that I had to call Steve to come rescue me. I also had to have the cashier empty my cart for me. It was pretty severe. So Steve had to work from home for the rest of the week, while I laid on the couch with an ice pack. The next week, we decided to ask my mom to come to help.

In the meantime, I had an appointment with an orthopedist on August 29. I saw a physician assistant, and she ordered an MRI. She said I wouldn't see the doctor for 6 weeks. But in the meantime, I would likely have 1-2 epidural injections. I was pretty freaked out about that!

I was also freaked out about the MRI, and when a friend told me about open MRI's, I started doing research. I found the only open MRI in the whole area where the machine is open on both ends and the interior is fairly large (relatively speaking). And I managed to get an appointment, and our insurance covered it!! So the MRI took place on Friday, September 5 at 7:30am. Steve went with me, because I was nervous. It was supposed to take 25 minutes, but Steve said I was in there for 45 minutes. I didn't think anything of that -- but it definitely did feel long! Afterwards, Steve and I went out for Starbucks to celebrate having some alone time and having made it through the MRI! Hooray!

We probably got home around 9:30am. Then Steve went off to work. Our housekeepers arrived. It was a new team, so I had to go upstairs to give instructions. Kevin came along...and suddenly the phone rang at 10:14am. With all the chaos, I'm not sure why I answered it. But I did. It was the orthopedist. I had never met this doctor, and I had been told that I wouldn't be talking to him for 6 weeks. And the radiology place had told us that the MRI results wouldn't be ready for 24 hours. So why was he calling? Apparently, the radiologist had called the orthopedist after the MRI because of what he found. And apparently, the radiologist scanned higher than was needed and "happened to" see the large tumor in my kidney. He was not supposed to have scanned this area. But I do not believe in coincidence here. It is a blessing that we went to the pool and I injured myself. And I chose this specific clinic on my own in order to have the MRI. And the radiologist paid enough attention to catch this. Praise God!

The orthopedist apologized multiple times on the phone for telling me this over the phone, but I wasn't even able to register what he was saying to me. I went in Kevin's room with him....then I excused myself while I took Kevin downstairs to my mom. I remember having parts of the conversation in my bedroom, Kevin's room, the kitchen, and the dining room. The doctor was apologizing and talking about a tumor and lesions. I didn't even know what this meant, so I told him so. He said, "It might be cancer." I can't even describe my feelings at the time. I just told him, "I don't know what to say." He said he had already spoken with my physician. I was confused and still wondering what was going on. And he told me that I needed to go see my physician right away that very day.

I was then trying to figure out how to quickly get off the phone with him, as he wasn't ending the call fast enough for my taste. Then I quickly cried out to my mom that I have a tumor in my kidney....she panicked...and I picked up the phone to call the doctor's office. They told me I could have an appointment at 2:30pm. I asked if it could be sooner, so they left me on hold for a long time while they tried to talk to the doctor directly. I couldn't take it anymore, so I passed the phone off to my mom while I took my cell phone onto the sunroom to call Steve. He wasn't at his desk, but he answered his cell phone. I cried that he needed to come home right away, that I had a tumor and that it might be cancer. It wasn't a great way to tell him, but there weren't many choices.

The doctor said she could see me at noon. It was already 10:30am, so this was great. And Steve came straight home. In the meantime, a friend called to ask how my MRI went....I answered the phone and told her what had just happened. I was still in shock.

Steve came home, and I sent a quick email to our church's prayer chain. Then we went together to the doctor at noon. I was scared to death to go. I just wanted to curl up in bed and hide. But amazingly, despite the fact the news we heard was bad, I actually felt better when we left her office than when we arrived. She was wonderful. I had just been there 2 weeks prior for a physical. Of course, she thought I was healthy. But she had prescribed pain medicine for back pain. So she told us more information than I had learned over the phone. And she said that when the orthopedist called and told her, she almost dropped the phone. When I cried in her office, she cried too. She was so supportive and wonderful. Steve was so impressed as well.

Anyway, she told us that I have a tumor the size of her fist in my right kidney and there are other spots that seem to be cancer in the area of my hip. She said that everything looks like cancer and they are going with the assumption that it is cancer. This was all surreal. I'm only 34 years old!! How could this be happening???

She prepared us for what is to come. In the time before our appointment, she had already lined up 2 appointments for us on Wednesday. First, we'd meet with a urologist, who will be the surgeon. She said that he will be removing my kidney. Then we will meet with an oncologist. She said that the oncologist is wonderful and will become my best friend. And she said that my "dance card" will be very full with lots of appointments and people. She said that the urologist and oncologist would determine what will happen first, but that I can count on having surgery very soon and radiation on my hip. I will also be fully scanned to be sure there isn't anything else.

I told her that she should know, as my doctor, that I'm a hypochondriac and absolutely terrified of blood and needles. I'm a terrible person to end up needing this type of medical care!! But she really reassured me, saying that I can always have valium or be knocked out for any test. And she said that she can prescribe anti-anxiety medication if I need it. She really did make me feel better. We talked about a lot of things, and she was very supportive and reassuring where possible. She kept asking if we had any more questions, and she spent over an hour with us! At a last-minute appointment!! It was probably her lunchtime. She also prescribed narcotics for the pain. She said that what I have going on is very painful. So I'm not a wimp afterall! ;)

The rest of the day was filled with emails and phone calls from friends and family. Our former pastor quickly came over to pray with us. And later, 2 other friends from church came over to pray with us and anoint me with oil, as it says in James 5:14 ("Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord."). I was amazed at the outpouring of love and concern. And soon, I was saying that it seemed like everyone else was more upset than me. Lots of people were already praying, and God had clearly already given me a peace to make it through the day. I was even able to laugh with people on the phone.

Then night fell, and I became afraid. When we went to bed, my wonderful husband told me to wake him up in the night if I wake up. Of course, I did wake up and was quite scared. And he got up with me. Both times. We were so glad that my mom was already here and could take care of the boys for most of the weekend. This gave us a lot of time to talk and just be together. It ended up being nice to have a few days to just process this new information in our lives.