Friday, January 30, 2009

Intelligent and Intelligible

Although the fellow was a bit of a bitch at first, she became nicer once I told her I thought my diagnosis was true CUP, not colon with an unknown primary. The oncologist was intelligent and intelligible. He went carefully through an explanation of how the pathology and clinical doctors determine where a cancer originates. This explanation was given from an intelligent person to intelligent people (he did not talk down to us, nor did he oversimplify) in a manner that was like a teacher, in that it was well presented, logically sound, did not go off on tangents, and was not argumentative. He seemed to agree with the conclusions of the NCI (and his own Path Dept's) analysis. He seemed to agree that this is indeed true CUP (thought did not say that and it seems to me that he has room to wiggle out of that as well...I am a complicated case).

I decided that I liked what he had to say and the way he treated me (making eye contact the whole time, et cetera). I have decided to go back to JHH. So, we are going to Costa Rica and on our return I will go have another CT scan and then start chemo.

Thursday, January 29, 2009

JHH Appointment Tomorrow

So, I have an appointment with an oncologist at Johns Hopkins Hospital tomorrow. As you know, I am not a fan of JHH. Of course, my visit to UMD showed me a few things I appreciate about JHH (tolerance towards children, quick/easy getting to appointment (the orange card at JHH versus waiting in lines at UMD)). I also called the NCI folk to check up on the JHH people. It seems that the JHH people have indeed been in contact with the NCI folk in preparation for my visit. They are ready to discuss treatment, not debate diagnosis (as UMD did, much to my extreme disappointment). I hate to ask Capt. Obvious to skip an important work meeting tomorrow morning, but for an oncology appointment that (I hope) promises to be as productive as this one, we both think it is worth it.

Had to cancel a playdate on Friday also. Sigh.

I will update this blog about the visit, of course. My sweet MIL will be in the waiting room with Captain adorable. :) Makes me feel at ease that way.

We're going to Costa Rica on Wednesday! YAY!

Monday, January 26, 2009

Not Going Back There

I had an appointment with a potential new oncologist this afternoon. The appointment was scheduled for 3:00, so of course I was supposed to show up at 2:30. It did not go well and I will not be pursuing treatment at the University of Maryland Greenbaum Cancer Center.

At about noon today, I received a call from a doctor, who turned out to be the fellow for the oncologist I was scheduled to see. He was calling me to see why I was coming to see the doctor today. I asked if he had read my file, including the information from NCI. He said he had, but then proceeded to say some things that led me to doubt him. I found myself in the weird position of explaining to a doctor what my diagnosis was, on which data that diagnosis was based, and why I felt that this particular specialty could help me. The fellow finally agreed that I should come in this afternoon. I was incensed when I got off the phone. I called Captain Obvious to share my frustrations, then called NCI to ask for help. The contact nurse there, who has always been respectful and intelligent, proceeded to calmly explain to me all the things that I had explained to the UMD fellow, and even offered to talk to him to explain these things herself. I called UMD, thinking that I would ask to speak to the fellow again, but the woman on the switchboard (who had made the call to me earlier) was quite friendly and told me to ignore the fellow and just come see the doctor. So, we were there at 2:30.

My sweet MIL was there also, as agreed upon. She stays with Captain Adorable in the waiting room while Captain Obvious and I go in to see the doctor. This makes me happy because it minimizes the time I am away from Captain Adorable, and I think it makes her happy because it means she gets to have an hour or so with her grandson. Immediately after I signed in, I was told that we were not allowed to have a child in the waiting room. This pissed me off. After all, I had been there before, to see a different oncologist and I had brought Captain Adorable with me and he had stayed in the waiting room with my sweet MIL the entire time. Suddenly changing the rules on me like this did not make me happy. When Captain Obvious asked what then we could do, the person had no suggestions. We said we'd wait in the lobby and asked if someone could come get us and she said no. Unbelievable to me. Why should we all wait for 45 minutes to an hour, separated by 30 feet and a wall, separate from each other? Why can we not all wait as a family group?

I cooperated in the end and indeed waited for 45 minutes before being seen by the doctor. Yes, the fellow finally came to get me at 3:45 for a 3:00 appointment (and, keep in mind, I had arrived at 2:30). He asked if we'd been waiting long and I responded, "yes, 45 minutes." He laughed and said that was normal. I've been to see oncologists at 3 hospitals and a research center in 2 states. While one often has to wait, 45 minutes should not be considered normal! Absolutely insulting to your patients, in my opinion.

We (the fellow, Cat. Obvious, and I) went into an exam room, where the fellow proceeded to spend, oh 40 minutes, explaining to me that NCI is wrong and that I have lung cancer. I of course defended my position (which is that I have CUP, not just colon cancer in my lungs with no identifiable primary, but actually true CUP, meaning that the cancer is not identified as lung or colon in origin, but no one knows where the primary was/is). The fellow was finally seeming to come around to my way of thinking (especially once he found out that his pathology department had made their determination based on slightly less data than NCI). Then he examined me (listened to my lungs and belly, poked around my back and belly, nothing bad but not a bundle of fun). Then he went and talked to the oncologist for 15 minutes.

When they came back, the oncologist again spent his time telling me how I have lung cancer and why NCI could be wrong...I did not say much to him because by that time I was disgusted with the place and had decided I was not coming back. He ended the appoinment by saying that he would have to have a conference call with the doctors at NCI and he would make a determination based on that call and would let me know what his recommendation was. The thought that went through my mind was "Why the hell didn't you do that before I arrived today? Because this whole appointment seems like a waste of time."

I tried to communicate to these doctors how not being allowed to have my child with me in the waiting room affected me and my life (and could affect my ability to come in for a visit, should I have no one to care for my son). They listened but did not hear and simply and patronizingly explained to me that children, while they are cute and everyone loves them, present a dangerous risk to bone marrow transplant patients. I suggested that perhaps patients who are naturopathic should have a separate waiting room if the danger is that great...

Anyhow, yeah, I'm not going back there. Looks like JHH is once again in the running as an option. Hoping to get in to see an oncologist there who did her fellowship at NCI and has already contacted the NCI doctors about my case (without even having an official appointment, may I add in her favor). Here's fingers crossed that I can find a doctor before we leave for Costa Rica on Feb. 4.

Friday, January 23, 2009

Another Five Word Combo

OK, I promise no more after this, but I was impressed by the other sentences so much and then he whipped out an additional five word combination I had to record it as well. While being dressed in his pajamas after his bath, Captain Adorable was disappointed to discover that his fire truck pajamas were not available and he had to wear a different pair. When his Daddy explained that the fire truck pajamas were dirty and in the laundry, he said "mama wash fire truck dirty." His language is really developing!

HOLY COW: First Five Word Combo!

Breaking News! Captain Adorable is in the bath (attended by Captain Obvious). I just received a text message (yes, my darling husband Is That Nerdy) altering me to the fact that Captain Adorable said: "Wash hair too Daddy's shampooah." This means: I would like to wash my hair with Daddy's shampoo too. Too, meaning, in addition to his own shampoo. (Don't know why he says shampooah instead of shampoo (he used to say shampoo!) but it is cute.)

The Second Four-Word Combo

OK, Captain Adorable said another four word combination today. I promised myself I would remember it and write it down this time so that when someone asked I would be able to tell them. So, without further ado, the four word combo was, "Daddy car seat out car." (I count "car seat" as one word.) This means: Daddy will take the car seat out of the car. You see, I've been telling Capt. Adorable what will happen during our journey to Costa Rica and apparently the fact that we take the car seat out of the car (in order to take it with us) seems to have made a big impression!

This is for bits of myself

1. what did you do in 2008 that you’d never done before?
Took Tarceva, went to Hawaii, walked in a lava tube, went surfing, went down a 150-foot water slide! Potty trained my son.

2. did you keep your new year’s resolutions, and will you make more for next year?
I am not sure I made any. I never do, really, because it seems awfully pointless, what with me never keeping them and all.

3. did anyone close to you give birth?
Yes, my friend Ms. Breadwinner had a second son, lucky thing!

4. did anyone close to you die?
Uhm I don't think so...

5. what countries did you visit?
The United States of America

6. what would you like to have in 2009 that you lacked in 2008?
A drug/treatment that kills cancer or at least stops it from growing.

7. what date from 2008 will remain etched upon your memory, and why?
January 6, 2008 was my darling son's first birthday.

8. what was your biggest achievement of the year?
Getting my son completely potty trained by the age of 23 months.

9. what was your biggest failure?
The fact that my son somehow lost the ability to poop in the potty, so is no longer completely potty trained at the age of 24 months. (Still is pee-trained!)

10. did you suffer illness or injury?
I still have cancer.

11. what was the best thing you bought?
My infinity tattoo.

12. whose behavior merited celebration?
My son of course! He is a sweetheart all the time, but his behavior while traveling is exemplary.

13. whose behavior made you appalled and depressed?

14. where did most of your money go?

15. what did you get really, really, really excited about?
The presidential election.

16. what song will always remind you of 2008?
I don't have this type of awareness about songs and years. I listened to lots of music and lots of types of music this year. I guess satellite radio has brought more new music to me than I was listening to for the last few years...

17. compared to this time last year, are you:
happier or sadder? Both.
thinner or fatter? Fatter.
richer or poorer? Richer.

18. what do you wish you’d done more of?
Always wish I had spent more time doing cool activities with my son. Where does the time go?

19. what do you wish you’d done less of?
Spending time in hospitals and visiting doctors.

20. how did you spend christmas?
My husband wanted to celebrate Christmas this year (I am a Hanukkah girl myself). I watched my son open gifts, then we all went to our favorite Indian buffet.

21. did you fall in love in 2008?
With Hawaii.

22. what changes did you make to “green up” your lifestyle?
More awareness in general, better recycling practices.

23. what was your favorite tv show?
Oh dear...Top Chef? Project Runway? House Hunters? I watch very little tv (only when the little one is asleep).

24. do you hate anyone now that you didn’t hate this time last year?

25. what was the best book you read?
Difficult to answer, since I read so many books and I do not have dates on my book list...I do not know if I finished it in 2008 or 2009, but The Poisonwood Bible by Barbara Kingsolver was an amazing discovery.

26. what was your greatest musical discovery?
Coldplay I think.

27. what did you want and get?
An amazing vacation with my husband and my son.

28. what did you want and not get?
A cure for cancer.

29. what was your favorite film of this year?
???? Film? What's that?

30. what did you do on your birthday, and how old were you?
Went surfing on Oahu! 35!

31. what one thing would have made your year immeasurably more satisfying?
If my oncologist had been more proactive in having my tumor tissue genetically tested. If my oncologist had been more concerned about finding out why, not just throwing the standard of care at me.

32. how would you describe your personal fashion concept in 2008?
Well, I wasn't naked. I did make an effort to buy new, more flattering clothes...probably did not work.

33. what kept you sane?
My son.

34. which celebrity/public figure did you fancy the most?
Barack Obama

35. what political issue stirred you the most?

36. whom did you miss?
My mom when she was not with me and my husband when he was not with me.

37. who was the best new person you met?

38. tell us a valuable life lesson you learned in 2008:
I don't have time to hang out with people I don't like.

39. quote a song lyric that sums up your year.
Sorry, I've got nothing here...

40. tag five people to post their answers to this 2008 wrap-up meme. please link back to this blog from yours.
I am going to skip this step. If you feel like playing, please do so! bits of myself tagged me and asked me to link back to her, so I hope this is good enough. :)

Tuesday, January 20, 2009

Inauguration Day

Made me very happy. We had a party, which was attended by both Ms. Resourceful and SteadyHands and their children. (Some other friends had to cancel because of other responsibilities...missed them.) We watched the swearing in ceremony on our big tv (I got teary-eyed a couple of times...) and then adourned to the kitchen. There we had a great time baking bread, eating, drinking champagne, and chating. Captain Obvious looked after the children while we chatted it up. Time slipped away until suddenly it was past time for Captain Adorable's nap and things got packed up and people left.

Then this evening we went, as a family, to another Inauguration party, which was much better attended but also pretty low key and comfy. There was delicious food, lovely dessert, and champagne. :) All of us had a good time.

Love and happiness.

Sunday, January 18, 2009

Cheering Myself Up

I've been feeling sad and overwhelmed lately. The bread maker got smashed a few days ago (fell off the counter during the kneading cycle) and I started looking into reviews in order to get an idea of which one to buy. Instead of buying a machine, I got inspired by my friends (Ms. Resourceful, SteadyHands, and a couple others). I decided to try baking bread without a machine. Someone gave me a web site for No Knead Crusty Bread and, well, I followed the recipe and I was quite pleased with what came out of the oven. A photo of the results is above. The Captains liked it too.

Wednesday, January 14, 2009

Vomit and Diarrhea

Now I know why I was so tired yesterday. Starting at about 11:00pm I had to occupy the porcelain throne repeatedly. After about 45 minutes of repeated visits, I was just about to leave the bathroom when I heard Capt. Adorable wake and cry. I quickly went to get him and he vomited all over himself and me. I called Captain Obvious to come up from down stairs, and by the time he arrived I was already beginning to heave, which I was able to control myself until I made it to the sink....yeach. Capt. Obvious showered Captain Adorable while I showered myself.

When the three of us finally got into bed, Capt. Adorable immediately cuddled up with me (which I did not want because I knew I'd be up again). I was freezing cold, because of so much time spent in the bathroom, and could not get warm while I was in bed because I had to be careful of not pulling the blankets over my little one's face...I got up several more times. I had to sit on the toilet with a big bowl in my lap. Horrible. The last time I got up, at about 4:00, the vomit in the bowl was full of blood. I must have really hurt my throat with all that vomiting. I am exhausted and sore from constantly having to lie in only one position (or else Capt. Adorable sleep-crawls over to me for snuggles and I have to turn over anyhow, before he wakes up looking for Mama).

My Mom and Captain Adorable were both sick the day before, but I thought I was fine. Guess not.

Captain Obvious stayed home from work today to look after Capt. Adorable so I could sleep and recover. The diarrhea has not stopped. I think my body has decided to do another colonoscopy prep. (Just kidding.) Of course, the fact that I am not eating anything has certainly slowed production, if you know what I mean...

Tuesday, January 13, 2009

Cancer of Unknown Primary

So, I had a mammogram this morning. It was not half as bad as I had imagined. Uncomfortable but not painful and not scary at all. (A bit cold, but barely worth mentioning.) It showed nothing, which we expected. If you ever have to have a mammogram, ask for the stickers that they (hopefully) will put on your nipples. This helps to indicated exactly where the nipple is located and make reading the mammogram easier and makes comparing multiple mammograms easier because there is a consistent marker for the radiologist.

Then we met with the oncology team, consisting of a fellow (who has been seeing me and talking to me and ordering tests and such), the Branch Chief, and a surgeon. The fellow told me (as he had on the phone previously) that because the cancer growing in my lungs is colon cancer, but we cannot find any tumor anywhere else in my body, my diagnosis is now considered Cancer of Unknown Primary (CUP). Only 2-5% of cancer patients fit this profile. Both the American Cancer Society and the National Cancer Institute have information on CUP online. We discussed treatment options and talked about what might be best for me as far as controlling my disease and preserving my quality of life. Looks like chemo and maybe more lung surgery or RFA (radio frequency ablation) are in my future.

I am rather tired, so I am not going to write much more today. I will not start treatment till mid-February. We're going to Costa Rica in the beginning of the month, so that will be a time to relax and soak in happiness before diving into chemo...I have a lot to do before then: I have to contact and meet with a couple of oncologists and a surgeon and perhaps a radiologist. Makes me even more tired to contemplate all that driving and meeting...

Monday, January 12, 2009

Mammogram Tomorrow

Tomorrow I am scheduled for a mammogram. After that Captain Obvious and I will meet with the oncology fellow who has been caring for me at NCI. I know that the meeting is to discuss the results of the endoscopy/colonoscopy, upper GI with small bowel follow-through, and mammogram. I know that so far we've not found any cancer in the first two tests and I'm expecting that the mammogram will find nothing either.

I've already talked to the oncologist about this and I know that the official diagnosis has changed, again. I will post about it tomorrow, when I know more myself.

In other news, my poor Mom and my poor little Captain Adorable are both sick. Both were tired and felt bad (Captain Adorable barely ate anything at all) and then started throwing up at about midday. My Mom needed to lie down and Captain Adorable actually sat still (in my lap) for a couple of hours! Throwing up seemed to scare him, so I tried to calm him by telling him it was ok to throw up, that it just meant he was sick. Poor little one. He INSISTED on eating some rice for dinner (he ate only a few bites) and of course it came right back up. Captain Obvious and I put him in the bath and then I put him to bed. He fell asleep so fast! I hope he sleeps 12 hours and kills off that beastie in his belly. My Mom just came downstairs and she said she feels better...I hope she also continues to heal, especially since they have to be along together for a few hours tomorrow while Capt. Obvious and I are at NIH.

Saturday, January 10, 2009

Birthday Party With A Bang

Today was Captain Adorable's birthday party. We had it at a local gymnastics place. Essentially the kids got to have the whole (new, clean, beautiful, well equiped) gym to themselves for 2 hours. We had invited 9 kids, one canceled last night, and two could not come because of their parents' work schedules, but the remaining 6 guests who did show all had a great time...except for one poor little sweetheart. He was the one friend Captain Adorable had mentioned by name over and over for the last week, saying he missed the friend. He was the first guest to arrive, with his parents and brand-new (2 and a half week old) sister in tow. I did not see what happened, but early on he and his daddy were jumping on the trampoline together and there was some sort of accident (not clear on details--did he fall of? Or simply take the brunt of the energy of landing? I am not sure. Anyhow, he did start crying and did not stop...finally his parents left to take him to the urgent care facility nearby and it turns out he broke his leg just below the knee! Poor guy! He just turned 2 a couple of days ago and now this...uh I feel so bad for him. I think we will try to visit him next week and bring him something to cheer him up.

The other kids, including Captain Adorable had a fabulous time, and I had a nice time talking with the moms. My sweet MIL brought a fabulous spread of delicious food, so we all had delicious yummies to munch on. :)

I was amazed at the presents our friends brought and we opened presents for about 3 hours after we got home! All such wonderful things! Captain Adorable had a drill from me that I gave him during Hanukkah, then Captain Obvious gave him a tool set which included another drill for his birthday, and one of our guests also gave him a drill (which converts to a jigsaw and a sander), so the lucky thing has 3 drills now! He's in heaven!

Thursday, January 8, 2009

He's Growing!

Please allow me to brag a bit. :)

According to the measurements taken at Captain Adorable's 24 month well baby visit (although I am not sure if it is called a well baby visit anymore, seeing as he is decidedly NOT a baby...) he was weighed and measured, and despite my constant worries about how much he eats, he is definitely growing!

As of January 7, 2009:
He weighed 26 and a half pounds (for the first time he had to stand on the scale instead of lie/sit in the baby scale!) (34th percentile--he's skinny...)
He stands 35.5 inches high! (83rd percentile, but we knew he would be tall, based on his father's family alone)
His head is 49.5 cm or 19.5 inches in circumference. (75th percentile. He's got a nice-sized brain, what can I say?)

The pediatrician was impressed with both his language development (2 word combos are old hat, saying 3 word combos on a regular basis, and one 4 word combo so far) and his number comprehension (understands the concepts 1 and 2, and can count, by rote, to 5 if in the mood.

One major development I have seen in the past 2 weeks is that all of a sudden he now sits down in his seat when we go to a restaurant! We will see if this lasts...but I sure hope so!

Tuesday, January 6, 2009

Second Birthday Today!

My darling Captain Adorable turned 2 today! (He was born at 12:45 on a Friday night/Saturday morning, following in his parents' footsteps of always arriving when the party is in full swing..)

A couple of hours after breakfast I took him to a local mall. We stopped at Starbucks and I bought him his favorite, a pumpkin scone (he likes it because of the icing, thanks Capt. Obvious for introducing him to this bad bad food!). The we rode the carousel, which he loves! He always requests the black horse (there is only one, interestingly enough). Then made an unplanned (but much appreciated) detour to Baltimore to visit my grandmother (Capt. Adorable's great-grandmother) for lunch. Capt. Obvious had to be at a meeting late tonight, so Capt. Adorable and I had dinner at a local favorite (we've been going there for, gosh, 6 years now). The waitress gave us a free dessert--I chose chocolate mousse, thinking it would be easiest for Capt. Adorable to eat. I was very pleased when she brought it out with a candle! Capt. Adorable, after some encouragement and coaching, blew it out himself!

Right now he is ignoring me and banging his blocks on his train and his little table. They are also all over his brand new (toddler) trampoline (which has not impressed him as much as I had hoped, boohoo). He has also dumped out his container of chestnuts and acrons. I guess I've got a bit of clean-up in my future. HAHA! Now he's jumping on the trampoline with all those blocks! I am planning to put him to bed late tonight, seeing as I filled him full of sugar with the chocolate mousse.

His birthday party is on Saturday. We are having a party (I know, it is mostly for me) at a local private gymnastics place. We have the whole gym for 2 hours and about 11 other kids are coming (3 are still babies in arms, though). The other walkers range in age from 16 months to 4 years, so I hope that everyone will get to jump on the trampoline and climb on the obstacle course and enjoy themselves tremendously. I do have some crayons and my sweet MIL is bringing plenty of snacks and drinks, so there are opportunities for breaks as well. We do not plan to do a present-opening event because I'd rather spend the time there letting the children play!

Here are some of the things he has been doing since his last birthday!
  • He walked at 11 months, but over the last year he has learned to run, jump, roll, walk in tiptoe, gallop, hop, you name it! He's quite an active guy.
  • Started potty learning at 16 months 3 weeks. He is 100% with pee, but still poops in his pants more often than not...we're working on it.
  • Knows his colors.
  • Understands what one and two mean (can count to five, when in the mood...).
  • Is putting together more and more 3-word combinations now! (Like: "big pretty tree," "miss trash truck," "teeth bite tongue," and the like). Today for the first time I heard his first four word combination!
  • Rides his balance bike/aka running bike with gusto ("Fast! Fast! Fast!"). In fact he is so fast that even Capt. Obvious has to run to keep up with him!
  • Sleeps in his own bed (in our room), which was a choice he made himself, much to my surprise.
  • Is eating more lately, something I was very worried about for a while but seems to have worked itself out. Or maybe he's going through a growth spurt... (can't wait to find out how much he has grown at the 24 month pediatrician visit tomorrow!)
  • Loves music, loves dancing, has favorite songs that he requests.
  • Has recently started throwing tantrums! Rarely, but happens now and then.
  • His bangs are so long that even I, the no-haircut-until-he-asks-for-it advocate, think we should get his bangs trimmed. (It is hard to ride a bike with hair in your eyes!)
  • Climbs and swings and slides and runs and falls down and picks himself back up with glee.
  • Gallops around the house with a huge smile on his face all the time.
  • Has recently (because of renovations Captain Obvious is doing) developed a keen interest in tools of all types.

2 years ago right now I was in the hospital, learning to nurse my gorgeous, beautiful, fantastic, genius baby, with no idea of the joy and fun that was still in store! Oh wow, what a wonderful 2 years this has been!

Monday, January 5, 2009

Upper GI With Small Bowel Follow Through

I left the house at 6:45 this morning in order to get to NIH in time to have blood taken and results come back in time for my planned Upper GI with Small Bowel follow through procedure. This was not as horrible as it sounds! It did take a while and of course I could not eat or drink anything before the exam, so I did not get to break my fast till 11:30 or something today. Ah well, it wasn't that bad.

For the test, you have to drink barium, a white chalky substance. It has been flavored and is kinda sweet. (Not anywhere near as nasty as the Go-Lightly that I had to drink for the colonoscopy!) Then you have TONS AND TONS of x-rays taken of your abdomen. The x-rays are taken while you stand up, but mostly while you are lying down--on your back, side, stomach, and slight variations of that. The radiologist looks to make sure that all your parts are in the right place and of course this time was looking for cancer. The radiologist I had was very nice, very personable. He made me feel like he cared about me as a person!

He was not able to get a clear image of the connection between my small bowel and the large intestine, but he said that because I do not have the symptoms consistent with a need to examine this connection that he would not put the burden of additional exposure on me. Apparently I had been in all the proper positions, just never got a look at that part of me. As far as results go: the radiologist told me that I have a hiatal hernia. That might explain the erosions in my esophagus...of course I will consult with the gasteroenterologist to find out more. He said could not see anything that was cancer, but of course he would look over the images again while he was writing his report. I am not surprised. This is beginning to feel like some weird wild goose chase, almost like I don't have cancer, this is all just some horrible mistake.

Meanwhile, I have a mammogram (which I am a bit frightened of) scheduled for a week from tomorrow and a meeting with the oncologist after that.

(I said it ALMOST feels that way. The truth, which I am very, very, very, very, very aware of, is that I do indeed have cancer and it is growing all the time.)