The Technical Details

This is Steve. Karin asked me to make a post about the "technical details" of her cancer. I've been doing a lot of research and reading in the midst of all these scans and appointments, learning everything I can to be sure my Love receives the very best care available. The Oncologist that we initially met with was not at all encouraging about our battle against this disease. But I've learned that there is in fact great hope. I recorded our meeting with the Oncologist, and listening to that again I can see that she was saying this too, but the way she presented the information was to focus on the negative in a very business-like way, which was very confusing and disheartening.

Here's a very brief summary of what I've learned regarding this cancer and treatment:

Kidney cancer usually strikes people at 50+ with high risk factors such as smoking, illegal drug use, and family history. Karin has none of the risk factors. She really should not have this disease at all.


Karin's cancer exists in three 'forms':

• Tumors - in her kidney and lower back / pelvis. These tumors are putting pressure on nerves in her lower back, causing pain.
  
• Bloodstream - this is how it spread from the kidney
• Bone surface - cancer in the blood is sometimes drawn into the bone surface that the bloodstream flows through. It grows there, and like roots into the sidewalk it chips away at the bone. This is the source of pain in her shoulder and tailbone - pain like a broken bone because it really is broken. (Note: this is not 'bone cancer', that is cancer of the inside bone marrow).
  

Treatment - Tumors and Bone:

• Tumors can be removed by surgery. When a tumor is localized inside something like a kidney, this allows total removal of the tumor. In 1% of patients with Kidney cancer that has spread, removing the Kidney results in 'spontaneous remission' - their immune system suddenly recognizes the cancer cells as disease and kills them off.
  
• Tumors outside organs cannot be removed cleanly by surgery. Radiation treatment is more effective at destroying these with minimal damage to normal cells. Radiation (high energy x-rays) are especially damaging to cells that are in the process of replicating. Cell replication is a process that takes about one day. Normal cells replicate rarely. Cancer cells replicate too often. A small daily dose of x-rays fired into the tumors kills tumor cells each day. Most of the tumor cells can be killed in this way, and the dead tumor gradually fades away over several weeks.
  
• Cancer rooting into the Bone surface can be treated very effectively by radiation. Once the cancer there is killed, the bone heals.
  

Treatment - Bloodstream:

• Cancer in the bloodstream is the most difficult to treat, because it is thousands of individual cells floating around looking for a place to dock and grow. The typical treatment is chemotherapy. Chemo attacks normal cells nearly as harshly as cancer cells, so makes a person very sick, but can kill most cancers in the blood.
• However, Kidney cancer is one of the toughest cancers around. Chemo is not effective on Kidney cancer.
• Until a couple years ago, there was only one treatment option for Kidney cancer in the bloodstream, and it worked for only a fairly small number of people.
• In the past 3 years, several new treatments have become available for Kidney cancer. These new treatments do not directly kill the cancer cells, instead, they disrupt the cancer from being able to emit signals used to establish and grow new tumors. This is able to control the growth of new tumors by daily treatment (via a pill), though not actually ridding the body of the cancer. In some people, long term treatment gradually cleans the bloodstream as circulating cells die trying to develop tumors. Side-effects of treatment are typically mild because there is little impact on normal cells.
  
• This treatment is still very new and requires close monitoring.
• There are treatments under development which will have the ability to deliver targeted attacks to the cancer cells that will more directly kill them off.

Cancer tumors suppress the local immune response, but there is some indication that a strong immune system and general health are significant factors in successful treatment. Thankfully Karin isn't an avid smoker like so many who get this disease.

Metastasized Kidney cancer is rare, less than 1% of all cancer patients. And these treatments have not been around for long. These two factors together limit the direct experience that most Oncologists have had with these new treatments. These new treatments are very specialized and require active monitoring and adjustment. Therefore, it is important to work with an Oncologist that has a lot of direct experience working with these new Kidney cancer therapies and alternative therapies in recent years. Fortunately, we live in an area with a lot of medical specialists. I have found the name of someone who specializes in this type of cancer and will be calling him on Monday.

Next Week

It's so nice to have a weekend of no appointments!! But here's what's coming up next week (in addition to other life things, like preschool and appointments for the kids).

Monday: set-up on radiation for my left shoulder, then radiation #2 on my pelvic region (and perhaps radiation #1 on my shoulder)

Tuesday: pre-op appointment at the hospital and radiation

Wednesday: radiation at 2pm (my usual time for each day), then MRI at 5:50pm (I'm bummed about the time, because I think that's the first night that my new small group is meeting and I wanted to attend)

Thursday: radiation and appointment with oncologist to review all my scans

Friday: arrival at hospital at 12pm, kidney surgery at 2pm

Steve got the MRI set up for me on Wednesday, which replaced the one I didn't do yesterday - plus the 2 that I had scheduled for Monday. (Well, Steve just told me that they weren't technically 2 separate MRI's on Monday. It was 2 areas and had to be approved by insurance separately, but it was probably one MRI.) Now they will do all the MRI's at once. They are of my head, my upper spine, and my mid spine. The lower spine was already done last week. We eventually realized why we recognized the name of the place where I will have the MRI's... it is the same name as the place where I am having my radiation! The place that I LOVE!!! :) However, it is a different location. But hopefully they will be just as wonderful. And it turns out that I will not be fully knocked out afterall. Instead, I will have an IV with valium. So it will be a higher level of valium and I will just be mostly out of it, to my current understanding. Oh boy.....I hope it's enough!!!!!

And just an interesting note about yesterday... September 12 had been a significant date on my calendar for the past month. Kien was scheduled to be circumcised on that date. Then...it started to sound likely that Steve could head to Vietnam on that date to bring Aria home. In that case, we would have postponed Kien's surgery. Either way, September 12 was going to be a very significant day in our lives. But we had so much stress going on (PRIOR to all this mess) that last week, we decided to go ahead and postpone Kien's surgery anyway, since this doesn't have to happen right now. Two days later, I had my MRI. So we went from wondering if September 12 would bring Kien's surgery or Daddy getting on a plane to Vietnam....and instead, it brought my first cancer treatment. Wow. I knew that day was going to be significant one way or another. ;) (Oh! And that is the day we were supposed to leave for our 3-week trip to Europe in 2001!! ...instead, we took the trip on Sept. 10, 2002.)

Meals Assistance

So many people have offered to help us in various ways! It has been amazing!!! And a few people have brought over meals this week -- usually without even "asking." They just did it! :) And it has been such a blessing. THANK YOU!!!

I'm unable to do anything at this point, and that will remain the case for awhile. My mom is here to help long-term. But she is also stressed -- and quite busy with 2 boys. ;) So I know she really appreciates the help (and it helps make me feel less guilty to know that she has one less thing on her plate! ;) ). So since so many have offered and we do want to take people up on those wonderful offers, I set up a "care calendar" to facilitate it. It's an awesome tool we have used in my MOPS group! People can sign up to help on a specific date and it gives all the relevant info on the calendar.

The web site is www.carecalendar.org. I would post the login information here, but that would include a map to our home. So since this is a public blog, I'm not going to do that. Sorry for the inconvenience. So if you would like to help (and do not feel obligated at all!!!! many people have already offered), please send me an email and I'll send you the login info.

Thank you sooooo much!!!!!!!! All the help is soooo appreciated!!!!! I feel very loved and blessed. :)

The MRI that Wasn't

My radiation appointment ended around 12:30pm, and then my MRI appointment was at 1:45pm. Steve and I had the privilege of going out to a nice little lunch together just the two of us in between. And at lunch, I took a valium. My oncologist had called this morning to check on me. She seemed quite surprised at how good I sounded on the phone compared to when I was there 2 days ago (when her presentation skills were a bit lacking, in our opinions). I asked her about the valium, because 2 nurses had told me that it was ok to take 2 of them before the MRI (a nurse friend and a nurse at the radiation oncologist's office). But surprisingly, my oncologist only wanted me taking 1 pill instead. She said I'm already on some pretty serious pain meds (2 of them), and I'm not used to taking this level of medication. She also said that the pain meds would help relax me. So I decided to heed her advice and take the one valium pill before we got to the MRI appointment.

So I took it 45 minutes in advance of our appointment time, and I kept falling asleep in the car. I could not keep my eyes open. I was so knocked out. We got there, and I was still quite relaxed. But I was surprised at how busy the place was. And to make a long story short, I ended up having to wait a whole hour to be seen!!! Well, after an hour, the valium was pretty much gone - yet I wasn't allowed to take another for about another 6 hours. I was soooo annoyed!! They had called us back to a separate small waiting room for most of the wait, where we sat with an annoying little TV that was telling us all about the hurricane with anxiety-provoking images and stories. This is NOT want I wanted to be hearing or seeing. I was finally called back in a much more anxious state, and they took me out to the MRI machine which was in a trailer outside. Lovely. And the technicians weren't nearly as personable as the other people I have usually been dealing with. And in the process, I discovered that I was going to need an injection too! UGH!! So we asked if Steve could come with me for it. Well, the answer was yes... BUT... First I needed to go into the machine, which I had already seen was quite small. I had to go in head first, and there was something that was going to go around my head to keep it in place. This was an MRI just of my head. I was going to be in the machine down to my waist. And after 20 minutes, she would give me the injection for the constrast. And when she did it, I was NOT SUPPOSED TO MOVE MY HEAD!!!!! You have got to be kidding me. I was set up for disaster. I lay on the bed, they gave me earplugs for my ears, and I just cried. The bottom line is that I could not do it. I knew that this was doomed to failure, and I was far too anxious. I couldn't believe they had taken so long that my valium had worn off. So Steve reassured me that it truly was ok to not even do it today. And we left. sigh.

So we went home and Steve worked on setting up plan B for me. We had hoped that plan B would be at the hospital, but the oncologist's office said that isn't possible. Huh?? Anyway, I am going to somewhere else on Wednesday evening next week to have all 3 remaining MRI's (today's head MRI and the 2 that were scheduled for Monday of my spine). And they will knock me out completely for it all. Praise God!!! I felt very guilty about not following through with it today, but I knew I just couldn't do it. And hopefully this will all work out ok next week. Unfortunately, my oncologist wanted to see me on Wednesday to discuss the results - and now it won't be done in time. But Steve is actually researching other possibilities of oncologists anyway. Unfortunately, it's now past 5pm on Friday, and we didn't get everything figured out yet. So we need to wait until Monday. But anyway, I really should just focus on all the good that did happen this week and all that I did make it through. This was a very big week, and I did have a lot of successes!

My First Cancer Treatment

We actually had a slower start to our day today. Hooray! We went to the radiation oncologist at 11am. (And would you believe we were late?? They didn't care though.) These people are soooo wonderful!!!! The same woman worked me me today as yesterday, and I just love her. She is awesome. The doctor was great yesterday too. But he was off work today, because it's his birthday. :) So I met with his partner instead, and he was also just awesome!! I love this place!!!!! :) I feel like I'm in really good hands. Also, Steve has been up late at night doing lots of research, promising that he's going to take care of me. :) And in his research, he says that the treatment that this radiation place is going to give me is great! And it's actually x-rays that are extremely focused and tailored to where they need to go.

Anyway, they started by doing the "set-up" today, which involved more CT scans. The worst part of that is having to hold perfectly still for quite awhile on a really hard surface. I did this quite a few times yesterday too though. Then they started writing on me with a marker. And once they had done all their pictures (including a real photo of my actual face for identification - ha!), they went to get Steve. I had made it quite clear that I was going to need him to hold my hand. ;) So they brought Steve in for my "tattoos." They had assured me that it wouldn't be bad at all, but of course, I was scared anyway. I also knew that the radiation was going to be easy and ok, but everything started to hit me. And the emotions literally started pouring out, which of course is good for me to do from time to time. So Steve held my hand while she marked me on each hip and on my belly. I was particularly concerned about my belly!! Yikes!!! But she was right! It really wasn't bad at all. :) I still haven't even had the guts to look at what they did though. ;) And they also used permanent markers on me with squares on my sides and all. ha!

After that, they took me into another room for the actual radiation. It began with more pictures, which I assume will just happen on this first day. Then finally the radiation began. It only lasted 2 minutes. I didn't feel a thing and only had to tell my mind to remain calm -- and my body to remain perfectly still as the machine moved around me and made beeping noises. They said I would be radiated on each side of my pelvic area and on my back. So in 3 spots. So the great news is... my treatment began today!!!! They're going to kill off those 3 tumors!!!!! :) :) :) Praise God!!!!!!!

When the doctor talked to me, he did tell me that there is another tumor in my left shoulder area. He was so nice in the delivery of this information though, and at this point, it didn't come as a big shock. My left arm has been in so much pain and has been mostly immobile lately. So it sounds like this really is not a big deal. Yes, I have another tumor, but they are going to kill it!!! That will start on Monday. They will work on the set-up for that tumor on Monday and do more tattoos there. I'm going to be speckled with dots. Then they will begin radiation on that tumor either Monday or Tuesday. They will do 14 treatments on the pelvic tumors and 10 on the shoulder.

Also, we learned what will happen in regards to surgery. On the day of surgery, I will not have radiation. Then it will be the weekend, when I wouldn't have radiation anyway. But assuming I'm doing ok and the urologist approves, on Monday (while I'm still in the hospital), they will bring me to the radiation oncologist's office by ambulance in order to have my radiation!! Then they will bring me back to my hospital room again. Wow. That sounds exciting. ha! ;) This is all so wild and so much to take in.

There is some risk as the radiation accumulates of some side effects related to my digestive system. But with my shoulder, there will be no side effects. Hooray for that!! And hopefully very soon, my pain will start to go away!!! I'm definitely ready for that. I can't do much with my left arm (including getting dressed, closing a car door, picking things up that are out from my body, etc.), and my left leg has been in a lot of pain with my foot going numb -- not to mention the pain in my butt. ;) He also talked to me about the fracture (my "broken butt") and that it will heal after the tumors go away.

Last Friday, I was getting an MRI for back pain. Today I had radiation for cancer. Wow. But praise God that things moved so quickly!!!

Back to the Urologist

Then we rushed back to the urologist, which we were late for as well. We brought the CT scans and the bone scan with us. Then he had us sit for awhile while he reviewed them all. I was quite nervous. It was time to hear more results, and he had proven yesterday that he isn't the best at being informative or at presentation either. But we have heard repeatedly since yesterday that he is a great surgeon (and everyone seems to agree on the lack of communication - but that's ok! We'd rather he be a good surgeon! ;) ).

He was not very informative at all, but we were prepared for that. In fact, we didn't really want him to be the one imparting much overall knowledge. He is very focused on that kidney and doesn't have much to say on the rest, as that is just not his area. But he did make some comment about things spreading to my bones and that we already knew about the pelvic area, but that there is something on the bone scan in my shoulder area as well. He didn't say anything further, and we didn't ask. We will wait for the full scoop from the radiation oncologist tomorrow. But it sounds like it is confirmed that my severe left arm pain is in fact caused by yet another tumor. But I do feel much more confident now that radiation is going to help me!! That is my prayer. I imagine we will discuss any other areas outside my pelvic region tomorrow at that appointment.

So....the very good news is that the urologist can remove my kidney!!!! I didn't mention yesterday that there was some question of that after our meeting with him, and it had me rather freaked out. He wanted to be sure that things surrounding the kidney were clear of tumors. And they are!!!! Praise God!!!! And my liver is tumor free as well!!!!! :) Alleluia!!!! So he can remove the right kidney. And one of the few sentences he uttered was that he is going to do it next Friday. Wow. By the way, it was also discussed yesterday that sometimes when the "mother tumor" is removed, it helps kill off all the other ones. So although I have 2 kidneys and this one is probably already useless, it is still important to get the kidney out.

I did step in at this point and question him though. My doctors were supposed to all communicate with each other at the end of the day. In addition to surgery, radiation is also important. The oncologist yesterday was very concerned that I have 2 pinched nerves and that nerve damage could be happening. I have been having numbness in my left foot this week and shooting pains down my left leg for a couple weeks. So she wants those pelvic tumors to be radiated. But they can't be radiated while I'm having surgery. And I had asked the radiation oncologist today if there could be a pause during the radiation process for surgery, and he said probably not. So when the urologist said surgery in a week, I was concerned that radiation couldn't begin for at least 2 weeks. I'm glad I spoke up. So he then went to call the radiation oncologist and was able to speak to him before the day ended.

When the urologist came back, he said that I will begin radiation tomorrow morning. Wow. I will get my tattoos and begin radiation. Then I will have treatment each day next week until my surgery next Friday, September 19. I will be in the hospital (the most local one - but I'm keeping names off the blog, since this is public) for 4-5 days. sigh. And when I get out, I go back to radiation to complete the treatment. Apparently this isn't much of a concern, since my hospital stay goes over a weekend, and I won't get radiation on weekends anyway. So I actually left the office today HAPPY that I begin radiation tomorrow and will have surgery a week from tomorrow. I'm happy about these things???? ;) Well, yes, because they are going to heal me!!!! Or rather, God is going to use them to heal me!!!!

So my current schedule is...

Friday: radiation oncologist for set-up, tattoos, and first radiation treatment...then MRI in afternoon (yikes!)

Monday: 2 more MRI's (yikes!!), radiation (each day until surgery)

Tuesday: pre-op appt at hospital

Friday (Sept. 19): surgery and stay in hospital for 4-5 days

I will return home just a few days before my 35th birthday, and I've made my wishes known that I want a big celebration this year!!! :) Fortunately, my birthday is a Sunday, so I won't have any treatments that day. And I will already be home from the hospital. Yipppeee!!! :)

Bone Scan

Then we scurried back to the hospital, where the nice guy from this morning took me back for my full body bone scan. This was unpleasant. It wasn't quite time for the 12-hour pain meds yet, but I should have taken more vicoden. I was really in pain once I was lying on that hard "bed," unable to move for at least half an hour.

I lay down and the machine came down on top of my head -- just a couple inches from my face. He said it would take about half an hour, since I'm so tall. I had to hold still as it very slowly crept down the length of my body. I tried to keep my eyes closed while this machine was so close on top of my face. Fortunately, it was not noisy like an MRI. Then after that, he had to do a few more pictures -- different angles and also one of my head turned to the side. During the test, I was surprised that sometimes people were walking into the room. I don't know what they were up to, and I certainly couldn't look. (The technician was there the whole time though.) Then afterwards, he left to go make sure that the pictures were good enough. He was gone for at least 15 minutes, and I couldn't find anywhere to sit that was comfortable. I was alone in a large room with a sign on the door with a warning about something radioactive being inside. On top of that, there was a smaller room within the large room that also had a big radioactive warning and a keypad on the door - and that was left open. I felt like I was in a movie where someone would be invading this room to steal some key substance. So I tried to pass the time while I was in pain by singing "How Great Thou Art," which has been in my head a lot since I sang that on the worship team at church recently. Finally, I was done! And Steve was able to give me my pain meds, which took effect pretty quickly!! Hoorah!! :) But this was the main time of the day that I was officially a grump. ;) It was 4pm, I was hungry, and I was in pain.

Radiation Oncologist

Yesterday, the oncologist made an appointment for me today with a radiation oncologist. Since this is a new game to me, I mistakenly was referring to this doctor as a radiologist previously in my blog. Not the same thing. So anyway... it was a radiation oncologist.

We met with the doctor at 1pm today. We ended up having about an hour at home as a midday break. We went through the whole routine of filling out a whole stack of forms, medical history, etc. We're becoming pros at this. My dad came along to this appointment and requested a second clipboard, so we could fill out forms as a team. ;) Then a nurse met with us and asked a long list of questions. I was in a very good mood. I didn't know what to expect from this appointment or if it would even prove to be scary...but I was quite chipper through the whole thing, laughing with people, etc. Even I was impressed with my attitude. ;) Thanks for the prayers!!!

Then the doctor came in, and we really liked him. He was really great. He did say that he had seen my CT scans, but they have not been officially read yet. So he said he was hesitant to say anything at all, because this is not official. But he said that he did not see anything in my lungs!!! PRAISE GOD!!!!!! Oh, how I hope this proves to be true!!!! This was one of the potential risks that had been mentioned yesterday which caused me a lot of anxiety. I hope this doctor is right... But he did say that unofficially, he thinks that there may be something on my upper spine. He said that it doesn't look like it's pushing on anything at the moment though and that this will need to be officially analyzed later. But he just had a reassuring manner in any case.

So he talked to me about radiation. We discussed how it works and what they will do. And this is the plan now. I am going to have radiation on my pelvic area for the 3 tumors that have been located there. One tumor is fairly sizeable (about 4cm). Anyway, it all sounds pretty easy!! It was very comforting to learn about it. He has decided that I am going to have 10-14 radiation treatments. He said that it's likely that it might be closer to 14. I will go in for radiation each day (M-F) for the full number of treatments. And for each appointment, I will likely be there for less than half an hour. This appointment went overtime, so they called the hospital to delay my bone scan. And while I was there, they did yet another CT scan on me today. The radiation oncologist needed a more detailed view of the area to be radiated. And from this, he will determine the number of treatments (along with other details, I'm sure).

I went in for my next CT scan, and they put me on an especially hard plastic bed. Ouch!! I was about at the end of my dose of pain meds, so this really started to make me hurt. I had done very well today in terms of pain up until this point. But I'm definitely hobbling along and not able to walk very fast. I'm on 2 pain medications now (a 12-hour one and an increased dose of vicodin). But this got the pain all started again. ouch. Other than that, it was fairly simple.

Now tomorrow... I go back for my next appointment in the morning. This will be a set-up appointment where they figure out the details of my radiation. They will mark me with a marker and test things out. And once the location on my skin has been determined, they will tattoo me. Literally. It will be permanent. I will probably have 3 dots. And yes, I asked if they could be hearts instead - but I was told that the technicians are not artists and I would not want that. ;) ha. (I'm glad I was able to laugh about this!) So tomorrow, I surprisingly will receive my first (and hopefully only) tattoos.

Morning Tests

We had set an alarm for 4:45am, so that I could get up and take my pain medication and eat and drink before I wasn't allowed to eat or drink any more after 5:15am. But of course, I woke up an hour even earlier than that. Steve and my mom got up too. And I treated myself to some of the yummy cookies that have been delivered to our home this week. :) I took my new pain meds in the middle of the night - and they work great!!! :) Then we headed back to bed when 5:15am hit. And I slept well with those pain meds!! I've had trouble sleeping for quite some time now.

An hour before my appointment, I took my first valium ever. Then Steve and I arrived at the hospital at 8:45am. We had been to the hospital one other time, I realized. Back in 2004, we had taken a class on baby care -- shortly before we even found out who our little Kevin was. :) The hospital was very nice, and we were impressed. Even valet parking. :) After signing in and getting my first hospital wristband since birth, a very nice nurse came to bring me in for questioning. Then she gave me 2 bottles of "water" (water with constrast added), which I needed to drink in the next hour. She asked me if I wanted it flavored with Crystal Light, and I chose the lemonade option. So she brought me back out to Steve with 2 bottles of lemonade, a cup, and a bendy straw. :) (Bendy straws are significant in our house, as I always keep a ziploc of them in my purse for Kevin in restaurants. :) ) We thought we'd have an hour to hang out... but within minutes, someone else arrived to come talk to us. He was in charge of the bone scan. And he wanted me to come back for my IV, so I was taken by surprise. But a combination of the valium and the prayers of so many helped keep me strong!

Steve was allowed to come with me. We talked to him in the waiting area before being taken back, and I made it very clear that I was quite petrified of needles and had never had an IV. He was a really nice guy, and he made what seemed to be special arrangements to take me into an area that had a very cushy, reclined, high-back chair in a curtained off section of a room. Steve was able to come with me, and I repeated numerous times that I just didn't want to hear anything about what was happening. And no B word!! ;) I was quite nervous and was able to lean over with my head on Steve's shoulder and hold his hand while they got to work on my left arm (the arm that hurts). Then I mentioned that a friend of mine is a nurse and that she said in an email last night that she works with kids and wishes she could come with me and sing "Itsy Bitsy Spider" for me! ha! So.... two nurses started singing "Itsy Bitsy Spider" for me!!!! And Steve joined in too, of course!!!! :) Talk about making my day. :) They were soooo sweet, and it was exactly what I needed to relax and even laugh!! HA! Thank you, God!!!! They then moved on to singing other songs like Barney's "I love you, you love me..." :) Sooo awesome!! Ha! They were really really great, and I felt so blessed for that.

They did my IV...I think I had 2 different things. I have no idea. ;) They had a blanket on me and then would tuck my arm under the blanket so I didn't have to see as we sat and waited. :) One thing they gave me was something radioactive for the bone scan. I'm going to be radioactive for 3 days! So they asked if I'm going to be flying anywhere. ;) They said there is no risk or harm though to me or anyone else, including small children.

Then they needed to do the blood test that I had declined yesterday at the oncologist. The nurse said she wasn't familiar with the lab procedures, but she went out of her way to go to the lab and they made special arrangements to use my current IV to do the blood test!! Like I said, they were so wonderful to me!!! So I didn't even know what was happening, and I only had one stick in me. :) What a blessing!! Thank you, God!!!!

They were going to have me go back to the general hospital waiting area with my IV, but they decided to just let me stay where I was. So Steve and I were able to spend over an hour in this private area with me in a cushy chair with a blanket over me. So amazing. It makes me want to cry even thinking about how wonderful they were to me. So then I had to get busy downing those 2 bottles of "lemonade!" And I don't think I will ever want to drink Crystal Light lemonade again!! HA! Wow, that was potent.

Finally, someone came to take me into the CT scan. Now this person wasn't nearly as compassionate and even asked, "Why are you protecting your arm?" Uh....cuz I don't want to see that IV, and because my arm is in pain! By the end, she warmed up a little bit. But she was not my favorite. ;) Oh well. The CT scan was pretty quick and easy. She wanted me to hold my arm up though while she put something in my IV. And this time, I did not have Steve with me. I was not able to hold my arm up in the air. My left arm is very weak these days. I suggested that Steve (who was around the corner) could perhaps come around and hold my arm. But she replied with something like, "We don't want to radiate him!" Obviously, that was not my intent. But the test was not running at the moment. sigh. Fortunately, it all was over soon. She did 2 scans of my whole torso.

Then I was "on break!!" :) They let me go until 2pm and even suggested where I could go in the hospital. Are you kidding???? We were going HOME!!!!! :) And I even got to eat!!! But they also said I needed to drink as much as possible to flush out all that wonderful lemonade. I should have kept track of how many times I visited bathrooms this afternoon as a result. ;) ha! Anyway, I did it!!!!! I was quite proud of myself!!!! :)

Prayer Evening

I just wanted to make a quick note about last night. Some wonderful friends gathered a group of people from church at fairly short notice for prayer at 7:30pm at the church. I think there were around 15 people in attendance. We waited for Kevin to arrive home before leaving, because I wanted to see him quickly before heading off again (as he'd be going to bed while we were out). So we got a quick hug and kiss first, and he seemed to be ok. :) Sounds like he had a nice evening, and we were soooo appreciative of our friends for taking him for the evening! (I'm being vague about names thus far on this blog, since I'm keeping it as a public blog.)

Anyway, we talked for a bit as a group first. And they were so encouraging, talking about God's power - and some even thanking God already for the fact that He's going to heal me. There were lots of tears, but they were mostly from others. I was a complete zombie. I was emotionally and physically worn out. Plus, the oncologist had given me an anti-anxiety pill -- and it worked!! Wow, I loved that pill last night! ;) I needed that so badly. It left me feeling fairly emotionally numb, which is just what I needed. :)

So then the group gathered around me, laid hands on me, and prayed for me for quite a long time. Our God is good!!!! And we are so blessed to have such wonderful, loving friends!!!! They even decided that the men are going to gather Saturday morning in support of Steve.

My mom was able to come for the second half, after she got the boys in bed. (Thank you, Mom!!!!) Then my dad stayed home with them while they slept.

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.