Beautiful New Tattoo!

My friend, whom I will call Persuasion for the purposes of this blog, got this beautiful infinity symbol tattoo weeks ago. I took this photo when she came over for dinner while I was at my parents house in Tennessee on December 18, 2008. Persuasion's tattoo is delicate and strong at the same time. Really lovely and a new interpretation of the theme! I love the way the line fades, allowing the eye to make the connection. The design is asymmetrical but perfectly balanced. Of course I dig the placement too--that between the shoulder blades look is just gorgeous!

I think this is an appropriate last post for 2008 because it ends this year of blogging on a beautiful note--the beauty of the design and the beauty of friendship, the shared experience, the joy of telling you about it, and the celebration of body art. I tell you, seeing this tattoo and the designs Capt. Obvious is considering are making me want to have mine embellished! (Yes, Captain Obvious is getting tattooed in 2009. Just you wait!)

HAPPY NEW YEAR! Love to All!

Findings and More Tests

The findings of the endoscopy show "A few small erosions...in the lower third of the esophagus. Biopsies were taken with a cold forceps for histology." (Must be why my throat is sore!) "The Z-line was mildly irregular and was found 36 cm from the incisors. Biopsies were taken with a cold forceps for histology. There were no esophageal mass lesions found." No idea what the Z-line is--I shall have to ask. And again, must must be why my throat is sore. At least my stomach and duodenum were normal.

The findings portion of the colonoscopy report (in part) says, "a sessile polyp was found in the rectum seen on retroflexion. The polyp was 4mm in size. The polyp was removed with a cold forceps. Resection and retrieval were complete. Specimen sent for histology." Yum.

The NCI nurse called me today to let me know that they are scheduling me for 2 more tests: an upper GI with small bowel follow through and a mammogram. I can't wait. (Um, not.)

Now, my sweet Captain Obvious was left with 100% of the toddler care for two days, essentially, but damn I did a lot of clean up today. In fact, I did four loads of laundry, ran the dishwasher, emptied the dishwasher, took down the recycling and trash, hand washed a whole bunch of dishes since the top rack of our dishwasher seems to be broken, cooked lunch, made bread (easy--just put the ingredients in the bread maker), went grocery shopping, and cooked dinner. Plus I was alone with my sweet little Captain Adorable. Honestly, I don't understand why Capt. Obvious can't even get the dishwasher cleaned out when he takes care of the little one 100%...oh well, I guess I have a method and he doesn't...Captain Adorable is pretty overwhelming...even my Mom can do nothing but take care of him when she is 100% in charge.

My poor little Captain Adorable had diarhea today, so he woke up with a (cloth) diaper full of poop (great way to wake up, let me tell you), and then several other pairs of undies (poor guy just couldn't help it!) until I finally found the last two disposable diapers in the house. I needed to put cream on Capt. Adorable's bum because that poop (even with immediate changes and washing with water and gentle soap only) caused red bumps on his sweet little butt and I think you are not supposed to use cream with cloth diapers. Anyhow, the first one he happily peed in (and told me he did so). Then we took a nap. I let him sleep in his bed with a bare butt since I thought that would help his skin heal. I woke up before him and watched him till he woke up a few minutes later, and went to pick him up to discover that he had peed and pooped in his bed. UGH! So, I had to wash him and then wash the sheet and the mattress pad...blech, let me tell you. I put him in another diaper and I was glad I had done so because very soon after there was another load! I had to put him in undies then because we were out of diapers, but when we went to the grocery store I bought some more disposable diapers. No more since then, thank goodness. He seems to feel fine and he has no fever. I told Capt. Obvious that he is not allowed to take Capt. Adorable out for barbeque Ever Again.

Still Shaky

We left the house at 7:15 to be at NCI by 8:30 and we were almost an hour early. Traffic was so good! I guess not everyone is back at work yet. Anyhow, we filled the time with finding the office where there was a form I had to sign to get my latest CT on CD. Should get that sometime next week.

The nurses were very nice and gentle and sweet. The doctor was also nice and cheerful and they all put me at ease. The heart rate monitor alarm kept going off because my heart rate was dropping to 50 bpm or lower (I saw it go down to 46!). This is while I was awake and lying on the table.

The procedures were not bad. I did not feel much. I do not remember much, just like they said would happen. I will talk more about it later. Right now I just want to make this as fast as possible because I feel terrible. I vomited from the water and apple juice they gave me after the procedures. I vomited 3 times before we left--once in the wheel chair waiting for Captain Obvious to pull up in the car (which was only steps away). I slept in the car on the way home. I slept once we got home. I woke up at about 5:00 (well, I woke up a few times before then, because someone small and sweet kept waking me up with unauthorized visits to the bedside but finally Capt. Obvious closed the bedroom door). I feel slightly dizzy, I have a headache, and I generally feel disoriented. I tried to drink some water (I've had nothing to eat or drink since about 9:00 last night) and I threw up. We paged the doctor and unfortunately, my reaction so far is normal for some people. Everything I have tried to drink (and I am talking teensy amounts) has resulted in vomitting. The Captains left to go out to dinner, so I am alone at home, writing this to you. The doctor did suggest just trying to sleep off this reaction, so I will probably go to bed very early tonight. After all, what's the point of being awake if I feel so bad and can't even eat or drink?

Just so no one gets too worried, I did receive fluids through the IV I had during the procedure, so we are not scared about dehydration right now.

Clear Liquids Only

Everything I have read and heard about the colonoscopy has informed me that the test itself is not so bad. The preparation, on the other hand, is difficult. On Friday and Saturday I was instructed to "bland down" my diet. No beans, corn, or onions. No vegetables. Nothing with fiber in it, really. OK, well, this meant I ate mostly pasta and tofu, but it could be done. After all, I did have a couple of latkes at the Hanukkah dinner last night and those did have onion in them...I also had a bit of applesauce on the latkes...I did ask the gasteroenterologist about this and she said it was ok...

Of course she also told me that the better the prep, the better the test. The cleaner I am inside the better a look they can have. So, I am being as perfectly adherent as I can, because dang it, if there is something to find, I want it to be found!

Today is clear liquids only. Plus I had to drink this "powered lavage solution" which you mix with water (one gallon) and then drink during a period of 3-4 hours. And you, well, empty out anything that could be termed brown or non-clear. Captain Obvious napped with Captain Adorable this afternoon because I was too busy drinking the (yucky but tolerable) solution and visiting the bathroom to do anything else. I sent the two of them out to dinner without me because I think the scent and sight of food would really depress me right about now. I am not a banana fan but those bananas in the fruit bowl that I bought for Captain Adorable are starting to look really good.

I am writing this while sitting at the kitchen table. The 8 candles of the menorah burn beside me. Ah, laptop by candlelight..how...contradictory? ;)

Anyhow, the tests are tomorrow. I hope my prep is good enough! Of course I will report results here when I have something to report.

On The Seventh Night of Hanukkah

Ms. Resourceful, her husband, and her two children came over for the seventh night of Hanukkah tonight. Not that I am Jewish, but I grew up celebrating Hanukkah (along with other Jewish holidays, and sometimes even the Sabbath). I wanted to share my memories and this beautiful ceremony/tradition with our friends.

Captain Obvious grilled a beef brisket (being a life-long lacto-ovo vegetarian, I of course did not have any) that was absolutely delicious and I made potato latkes and steamed broccoli (with a lot of help from Ms. Resourceful). For dessert we had chocolate gelt and some sweet buns that my MIL dropped off the other day when she came to celebrate Christmas with her grandson (Captain Adorable, in case you need it spelled out for you). A simple but yummy and filling meal.

I had a nice time. :) Meaning that I felt comfortable and happy while they were here. Captain Adorable got a bit over excited and started taking all the ornaments off of "Dada's tree," and some other minor misbehavior (like some pushing, grabbing) but was pretty much a typical toddler. It was difficult to put him to bed after they left because all he could do was talk about the other children. He loves them both.

I plan to celebrate with them again next Hanukkah.

Endoscopy and Colonoscopy Scheduled

Well, looks like I'm a weirdo. Nothing that looks like cancer showed up on the CT scan from yesterday. However, the 3 small tumors in my upper right lung have been growing. They are all a bit bigger. When I say "a bit," I am talking about a few millimeters (one grew 6 millimeters...). This is a slow-growing cancer.

The NCI team is convinced that I do not have lung cancer because of the genetic test (KRAS). But they say I am not showing a primary colon tumor and they may never find it, which would put me in the 2-3% category (meaning that only 2-3% of people have cancer with a primary that cannot be found). Even if no primary tumor is found, the NCI team recommends treating this as colon cancer. According to what was said today, I've been being treated with the wrong drugs all this time. Lung cancer gets certain types of chemo and drugs and colon cancer gets a different tpe. So far I've only been treated for lung cacner. And of course, if you've been keeping up with this blog, you know that despite my treatment, my cancer has been growing for the past year. Neither chemotherapy nor Tarceva has slowed or stopped it. I do feel hopeful that treatment with the right drugs would help...and also nervous that maybe it won't...

A big part of me thinks, OK, then if I am not going to die any time soon, maybe I should just stop all this depressing testing and treating and be happy. Maybe we could have another baby.

Sigh. Dreams dreams dreams...can't let go of that dream yet no matter how illogical I know it is...I love my son so dearly! I would love to have another child, another baby, another pregnancy. I would love for my son to have a sibling. (No, adoption is not for me. I want the physical experience of pregnancy and birth. I want a home birth! I want to nurse my baby till we are both done!)

Anyhow, I met with a gastroenterologist this afternoon. She was quite personable and sweet. She said she does not expect to find anything. I am scheduled for both an endoscopy and a colonoscopy on Monday (Dec. 29). Will post results here of course.

In other news, we gave Captain Adorable a toy drill tonight (it being the third night of Hanukkah). He loves it so much! He was totally engrossed. Just like Daddy's, only smaller and not as dangerous...I hope! ;)

I Was Mistaken

Sigh. I should learn to read emails better. Anyhow, it turns out that I am in fact not having a colonoscopy tomorrow. I am meeting with a gastroenterologist tomorrow, but there is no colonoscopy scheduled for this week. This is a bummer (oh, haha, I am hilarious) because my Mom is going to have to go home to care for her house and animals and that 8 hour drive is not something you do every other day...

However, my Mom has had a few colonoscopys and she says that it would be ok for Captain Adorable and Captain Obvious to drop me off before the procedure and pick me up afterwards. I think that will be fine and will mean that Captain Adorable gets to stay with him Dada, an arrangement that is good for them both.

Another reason I am disappointed is because I Want To Know. I am tired of waiting. And yet I know there is more waiting in my future.

Here We Go

Tomorrow (Monday) Captain Obvious and I are off to NCI for the first day of testing. Tomorrow I will have blood drawn and at CT with contrast. I am on prednisone tonight because of my allergy to the contrast dye (iodine). I dislike prednisone.

Tuesday I will have the colonoscopy. I will report the results, of course.

I have pics to post from my trip to TN last week. However, at the moment these tests are crowding my mind and my time.

More Information

Tidbits of information keep trickling in. I find it all a bit overwhelming again, but less so than last time around...for now, anyhow.

I have been advised of an important correction: my mother's father died of colon cancer at age 43, not age 40. :) This makes me feel confident that I will get to celebrate my own fortieth birthday! (Perhaps even my fiftieth...)

The plan that NCI has for me right now is to do an entire work up on me. I am going to have blood work and a CT with contrast (so I have to take prednisone for the 24 hours prior) on Monday, and meet with the oncologist and have the colonoscopy on Tuesday. If necessary, I could also have an endoscopy and even do the procedure where you swallow a little camera at NCI. My team there intends to "package" me, so that when I walk into the office of the oncologist to whom I go next, all the necessary tests will have been done. The NCI onc(ologist) says that the standard of care treatment for colon cancer (which it is not entirely clear I have, more in a minute about that) is chemotherapy, so it looks like I will be doing chemo again starting the first week of January. The NCI onc says that with colon cancer they try to just have you live on chemo, so this will be a long haul (with scheduled breaks). All those of you who are near enough in location will probably get a request to help with house sitting in Tennessee at some point! :D

I asked that the onc read the pathology report to me over the phone yesterday and here's what it says (in part): "while mucinous adeno may be primary in lung it is rare, staining is not consistent with lung. It is consistent with intestinal." I clung to that last word and asked the onc for clarification. He agreed that the path report is indeed not narrowing the source of the primary down to the colon, and that is why I may in fact end up having an endoscopy if no lesion is found during the colonoscopy.

He also said that the fact that I am asymptomatic does not mean much and that I do not behave like a person who has cancer of indeterminate primary. (I did not ask what that would be like, just accepted his opinion that I am not doing that, whatever it is.)

More Waiting...Sigh

My world has changed. I do not have much information to share here. However, here are a couple of relevant bits.

My maternal grandfather died, at age 40, of colon cancer. I do not have the symptoms of colon cancer (gas, abdominal pain, blood in stool, cramping, constipation) but remember, I didn't really have the symptoms of lung cancer either. I mean, yes, on occasion I have gas, abdominal pain, and cramping, but I think everyone gets those from time to time you know? Just a normal part of life.

In order to see if the test results are correct, the oncologist at NCI as scheduled me for a colonoscopy. I think Tuesday, but he is going to call back this afternoon to tell me and talk with me some more about this diagnosis.

I called the Univ. of Maryland oncologist and he said I could call back in a couple of days for his test results. No, I did not tell him about the results from NCI. I probably would have, but I am glad I did not because I want their testing to be independent, not to be done looking for a particular result.

Right now the plan is more waiting while we gather information. I think next Wednesday we are going to have a planning talk with my FIL and see where to go (literally and figureatively) from here.

The Worst News (and The Best News) I Never Expected

OK, this is all extremely new and it has not really sunk in for me yet. I will probably say all the details wrong. But here we go.

The oncologist from NCI just called (I am in Tennessee). According to the tests they ran on my tumor tissue, everything points to COLON cancer, NOT lung cancer.

So, this means.....oh god this means my life has changed. It means there is far more hope of survival (50% survival rate after 5 years). It means more hope for treatment--there are many more drugs available for the treatment of colon cancer, which are well tolerated.

I still have stage 4 cancer, but now it looks like it is not lung cancer. And that is fabulous, wonderful news!!

However, it also means I've wasted a year. An entire fucking year. And now I have to find a new oncologist (no NCI lung cancer study for me, and NCI does not have a GI team) during the holidays, and I am certainly not going back to JHH. Even though of course I'd have new a oncologist, the problem for me is that I do not trust the pathology department in the slightest. I will not ever trust anything they do ever again. That year, that suffering through chemo, the whole Tarceva daventure, was all a waste. A waste of my time, my precious, precious time. And that is devastating, sad, break-my-heart news.

Visit To Tennessee, Then Start Trial

I visited an oncologist at the University of Maryland on Dec. 8 and the National Cancer Institute on Dec. 9. I had good experiences at both places. I have decided to go with one of the trials at NCI. JHH did send a block (of tumor tissue) over to NCI (after the aforementioned prodding by my sweet MIL) last week and now that block has been cut into slides and sent to California for more testing. If the KRAS test comes back as being "wild type" (or, normal) then I will do the first choice study. If it comes back as being mutated, then I will do the second choice study. No matter what, I will spend 2-3 days (Dec 22 and 23, or 22, 23, and 24) at NCI being tested and signing forms. Whee. I will start treatment that week, though. Thank goodness! Not being on treatment is wonderful but at this point it feels dangerous...giving cancer a good chance to pop up anywhere in my body! Scary, scary stuff.

So, Captain Adorable are flying to Tennessee on Dec. 14 to hang out with my parents and on that Saturday my Mom is driving up with the two of us. I will be abandoning my return flight from Tennessee, but since I have to be at NCI at 8:00 on Monday morning, my Mom rightly pointed out that coming back on Sunday would be pushing it quite a bit.

I am no longer angry/sad about the horrible JHH mistakes. I just don't have the energy to maintain that kind of attitude. It feels so much nicer to let go, put it to rest, and move on. I do not know how much time I have left, but I do know that I want to spend that time enjoying my life instead of being angry over something I cannot control or remedy any more than I already have.

Here are two things I wanted to mention. 1) At both visits, the oncologists decided to have my tumor tested to see what kind of cancer it is. Both Captain Obvious and remember asking my current oncologist about this during our very first visit back in October 2007, but she said at the time that since the tumor in my lung was SOOOOO big, it was obviously the primary and so the testing was unnecssary. However, you may not know that the start spot of the cancer (where the primary is) is what determines what type of cancer you have, and what kind of cancer you have currently determines the type of treatment best for fighting that cancer. So, it is rather important! I am glad that both UMD and NCI are doing it, so I will have independent test results. 2) The NCI oncologist, upon learning that I was diagnosed with stage IV lung cancer over a year ago, said "Well, you're doing really good." That damn statistic immediately popped into my head (15% survival rate 5 years after diagnosis). However, while feeling that familiar fear and worry, I also felt "yeah, I know what the statistics say, but I am an unusual case, and probably have a much better chance of survival than the statistics say!" So I was a little surprised to realise that I felt that so strongly.

Amazing Bed News

I have been so overwhelmed lately (in a good way by my parents' visit and Thanksgiving and in a bad way by this ridiculous test results and tissue sample saga) that I have not written about the Big News in our bedroom.

Get your minds out of the gutter!

I will write more about this, but the news is: Captain Adorable is sleeping in his own bed. The crib we bought is a convertible (converts to a toddler bed and eventually to a full bed) and we moved all the furniture around and put the crib (configured as a toddler bed) almost next to our bed (the foot of his bed is right up against my night stand). He decided one day to start taking naps in there and that worked out great. Then one night he decided to go to sleep in there. So far he has ended up in the big bed (where he is absolutely welcome) every night, but he is sleeping in his own bed for longer and longer stretches. Last night he did not come to our bed till 5:00 or so!

I have been rather surprised by how easy this transition has been so far! I've even been a bit sad about it since I love co-sleeping so much. But Captain Adorable is confident and independent and has choosen to sleep on his own and that's wonderful. I am proud of him. But with his bed in our room, we still get plenty of snuggles, especially in the morning!

Called In The Cavalry

Today I started calling at 9:00 this morning. The Pathology department told me they were re-cutting the slides and might have them finished by Thursday but no guarantees. I then asked that they release the block and was told "We don't release blocks." I pointed our that the tissue was mine, that I needed it released, and that the signed authorization form I faxed them specifically says "block" on it. The person on the phone said she would talk to a supervisor and, when asked, said I could call her back at 2:00 to find out the progress. I called Captain Obvious to discuss this and he said "that's not good enough." We agreed it was time to call in the cavalry.

I called my MIL (who works at JHH, but not in oncology) and asked for her help. She must have burned up those phone lines because not more than 45 minutes later that same unhelpful person from pathology called me back to tell me that they would be sending out a block today! She asked if I would like to come pick it up or if they should send it overnight to NCI! I was shocked and said I would call NCI to find out and call her back. Unfortunately, the NCI contact nurse told me that having a block rather than slides means the block has to be sent to CA to cut and that takes about a week. So, another blockade to be getting into the study. Why oh why didn't she say it HAD to be slides if that is what she meant? I am sure my MIL could have gotten slides if we had known! Oh well, I am sort of convinced there is no way this is going to happen anyhow. So no emotional investment.

Then my MIL burned up some more phone lines and called to wrangle the official report of the KRAS results. She was promised that the results would be ready TOMORROW!! Do you believe it?! Plus, the pathologist she talked to recommended several other tests that should be run on my tumor in order to help me evaluate other treatment drugs (something the guy from NCCS also said on the phone the other day but I did not mention it in that blog entry).

My effing oncologist has been doing...what, exactly? I am not sure. She sure ain't done nothing for me, anyhow. She never returned my call from yesterday. She never returned my call from today. To be fair, she did answer my email, but by the time she got around to it, my MIL had already done all the work!

I also got help from my cousin, who, it turns out, works at the University of Maryland Greenebaum Cancer Center. She hooked me up with an appointment with a lung specialist. This is very important, big news. Yes, I have decided to leave Johns Hopkins over this horrible, disgustingly slip-shod crap.

Of course, none of this means I will get into the study. It could still all be too late. There are a couple of studies at Johns Hopkins opening soon, too, so while I do want to leave, I do not want to burn any bridges. I need these people and this facility... and the fact that MIL works there and can help me out if I need it, well, makes it somewhat bearable...I guess.

So, I am taking suggestions on how best to express my appreciation to my MIL. ;)

Livid

OK, I talked to the contact nurse for the study at NCI. Turns out the fact that my tumor is negative for the mutation means that I am of the wild type, which means that I do qualify for the study. Grrrrrrr.

Now it turns out that JHH Pathology Department did in fact not send the tissue samples today as promised. Their explanation? They did not have 20 unstained slides. Well, guess what?! The fucking authorization form that I so carefully filled out specifically says "20 unstained slides OR a block." They could have just sent the block today. But no. And of course how did I find this out? I found it out from the nurse at NCI!!! No one at JHH feels it was important enough to tell me or ask me or communicate with me about this.

I am livid. I am disappointed. I am is disbelief that this is actually going down like this.

I guess I shouldn't be. I guess this should be exactly what I expect out of our medical system. Because this seems to always be the way it turns out, doesn't it?

Confused

Just talked to a person at the National Coalition for Cancer Survivorship (NCCS) and it looks like I was wrong. I mean, it looks like the fact that it is negative for mutation means I would have gotten into the study.

But I am not sure. I am so sad that I am finding it difficult to understand these concepts right now.

The NCCS guy also suggested that it is time to think about Alimta and also about seeing another oncologist here on the east coast, seeing as there is a definite communication problem with my current doctor.

Email Correspondence

I wanted to send a really scathing email to my oncologist about this mess, but my FIL talked me down. Here's the email I sent:

from Rose
to Oncologist
date Mon, Dec 1, 2008 at 9:18 PM
subject Still No KRAS Data 8 Weeks Later

Oncologist,

It looks like I will be dropped from the NIH NCI Pfizer study because of my lack of KRAS data. It has been 8 weeks since the KRAS test was ordered. Is there something I can do to get things moving?

Rose

Here is her response:

from Oncologist
to Rose
date Mon, Dec 1, 2008 at 9:30 PM
subject Re: Still No KRAS Data 8 Weeks Later

I was called about it today. They believe it is negative for mutation, but they are sequencing the genes to make sure.
Sorry about this....it is crazy. It is not the norm.
I will let you know as soon as I hear anything definitive.
Oncologist

So, the one piece of info that is not awful is that the tumor is negative...this means that I would not qualify for the trial anyhow. So therefore, this 8 week wait which has resulted in me not being able to get into the study does not really matter since if the result is negative I could not have been accepted anyhow... so at least the lateness of the result did not destroy something I could have had...

Sigh. I've had a hard day with many tears of frustration and anger. I hate crying in front of my darling Captain Adorable. When he sees tears roll down my cheeks he touches them very gently with his finger tips. That always makes me stop.

Understanding Clinical Trials

In response to some questions I have received...

http://www.cancer.gov/clinicaltrials/learning
http://clinicaltrials.gov/ct2/info/understand
http://www.fda.gov/oashi/cancer/pdart.html

Study researchers don't get 100 (or 1000 or however many participants) and then start. The study starts, then gradually admits patients as they (the patients) meet the admission requirements until they(the study researchers) have reached their total. It is not like the study just filled up in the past month. I have no idea when it started. I do not know how many participants they want, nor how many they have now.

I do know that because Johns Hopkins lost my block, the necessary test to determine whether or not I can be admitted will be back at the very earliest in two weeks from now. The study may very well have reached its admission goal by then. If Johns Hopkins had run the test when they were originally asked (6 or was it 8 weeks ago now), I could be in the trial right this minute. But no, no, instead this door is closing to me before I even get to find out if I was qualified. I wanted to do a clinical trial because it was supposed to be fast. When I decided to do a trial 2 months ago, I thought I'd be finished by now!!! Instead I am still waiting to find out if I am even admissible.

I am so far beyond disappointed. I am sickened and disgusted and angry. I am livid.

And I feel helpless.

And alone.

Again.

Cancer Sucks.

Devastated and Angry

Well, after much communicating with the oncologist and her nurse practitioner at JHH, I received notice that the pathology department had lost my block and so the KRAS test has not even been started. I have been waiting for these results for WEEEEEEKS and each time I asked about it was promised once again that it would take two weeks.

So now the problem is that since we've been waiting for so long to get these results, the study that held the most promise for me will likely be full before we get the results. I just heard from the contact nurse at NCI and that is exactly what she told me.

Thanks for fucking me in the ass, Johns Hopkins. Thanks so very very much.