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.