Thursday, November 29, 2007

Ruled out one place for chemo; two options remaining

Thanks for the note -- I'd love to hear more about the place at MGH. I learned a little about it when I was there last but am interested in learning more. Having complementary therapies means alot to me.

I met with the oncologist at Beth Israel today. I assume that he is good but we had such different communication styles. It was a frustrating communication but good to know that I can rule him out. So now it is down to Dana Farber and Mass General. Also, DF and MGH offer on-site complementary therapies.

The other nice thing that happened today was this. The first BI oncologist I met over the phone was extremely nice, supportive and positive. I adored him. But, for a number of reasons, I was "assigned" to this other guy. Onc#1 did alot of work on my case and was wonderful to me when I was most scared, so I wrote a note to him. While I was there today to see onc #2, onc #1 stopped by the room to say and he gave me a big hug. Loved that support. Onc #2, however, is not the supportive type.

Then I went to see a radiation oncologist. I thought I was afraid of chemo. Okay, I can't resist the colon pun, but now, radiation scares the shit out of me. I had no idea how big a deal it is to get radiation treatments and what it does to your body.

Next week, I have one more meeting with Dana Farber and with MGH, and I'll need to decide by then because I'm closing in on the date I am supposed to begin chemo.

Okay, not that you asked for the update, it just came out!

Love, Me

Monday, November 26, 2007

No bad spots on my liver!

Hey, the good vibes are working -- no bad spots on my liver! Yay! They are just hemageomas (which I don't know how to spell) and a cyst. Yay!

That means, my disease is stage three, I'll still have chemo, but the outlook is more hopeful.

Before all that, though, we are getting ready to move to our new home....

Love, me

Wednesday, November 21, 2007

Help comes through!

Thank you all for your offers to help and sleep over! I was figuring out a schedule when my parents decided to stay another week. It seems like something new pops up every day here - now my husband has a herniated disk. My four-year-old has some sort of hip problem and is still walking like an old man. I have a feeling that he is headed for an exam at Children's Hospital. As for me, I actually had one day with no IV. Yay for that!!!

Watching us here, I think that they figure we can use the help. (We can.)

Thank you all for your offers. I can't tell you how much I appreciate it.

Happy Thanksgiving!

Tuesday, November 20, 2007

Got the MRI; no results yet

Hi guys,

I did the MRI today at MGH. It required an IV (my 3rd in a week) because they had to inject contrast dye to see the liver. Wasn't fun, I'll say that, but I'm sure that there are other things coming up that are less fun. They did have this cool light that helps them to see veins. (At this point, it is hard to find good veins in me.)

Anyway, I thought I would get the results right away, but they send the slides off to some sub-basement to be read, and they wouldn't let my husband see them. He reads MRI professionally, but they don't let others see it. I will try and get a disk tomorrow from them with the pictures they took, and he could read that. Otherwise, I get the results on Monday. Argh. While it seems like a long wait for the results, it is sooner than I otherwise would know.

I am learning that Dana Farber has a whole alternative medicine practice, where you can have accupunture during chemo. I'm intrigued by that.

I'm trying to figure out what to do about having my parents here. They want to leave on Thanksgiving day and drive home. My father says that my mother is getting tired, which very well could be true. (I'm oblivious.) My husband is leaving town for a work conference on Sunday night and we both think that I shouldn't be alone with the kids overnight in case I get sick again. So, if you know of any sitters who would be willing to do a shift on Sunday or Monday from either 5 pm to 7 am, or even 10 pm to 7 am, that would be great.

Thanks for all of your support, everyone. I don't know what I would do without it!

Love, Marie

Monday, November 19, 2007

Getting opinion from MGH oncologists

So, me me me. It's all about me. Even I'm getting a bit tired of the topic!

I had an oncology consultation today at MGH. Dr. A was awesome. Love love love her. But, you work alot with the resident. He's okay -- smart, but not whip smart, and doesn't quite get where I am coming from with my questions. So that is a trade-off.

The news from Dana Farber was good -- curable disease, straightforward treatment.

The news from MGH is not bad but more cautious.

The cautious part -- last week, in the ER, I had a CT scan that showed spots on my liver. My first thought was, wow, this only gets better and better. To be fair, it might be normal stuff. Given the oddities of the past month, it's hard to bank on that.

Anyway, MGH wants to do and MRI to definitively say what those things are. Frankly, that is scary. But, it is what it is, I guess, and I just need to get the MRI done. They will schedule it, and reserve judgement until then.

More cautious part: Until they see the pathology slides themselves (I was unable to get those to them in time), they can't say whether the cancer is in the lymph nodes (not great) or fatty tissue (worse). The BI report is ambiguous (ugh), the Dana Farber seems to feel it is lymph, but it is questionable enough that MGH wants to look themselves.

Finally, the MGH docs called the surgeon, who, despite his operative note saying this is colon, now deems it to be rectal. The difference (to me) is in the chemo treatment you get, and, with rectal, you get the added bonus of radiation. Ugh. Oh, and the fact that "rectal" sounds even less attractive than "colon".

Where is the good news? Well, I love that they are thorough and called the surgeon themselves, want to see the slides, set up the MRI, etc.

Dana Farber offers a whip-smart resident, though.

It's so hard to know who to go with, though maybe the path is getting clearer.

On top of all this, my four-year-old has been having a sore leg. He never complains, but he did about this, so we were watching out. He started walking with a limp, and we took him to the pediatrician, who had us take him to Children's Hospital. So, there we were, juggling hospital doctor appointments. He's on watch and wait, and seems to be a little better tonight. It was horrible to not be able to be there for him.

I sometimes wonder if some black cloud passed over our house one night and I forgot to get us all out of the way.

I'll end with a funny story. One of my allergies is Thimerisal, a preservative used in some eyedrops and in some vaccines. While I was in the ER, I heard one nurse telling another nurse that I was allergic to Tiramisu. How funny is that!

Love, Marie

Sunday, November 18, 2007

Landed in hospital for infection, but back home again!

Hi everyone --

I'm back home from the hospital. Wow -- between the two hospital stays and just being out of it and mostly in bed between those, I am SO behind on everything and we move next week! Yikes.

But, I'm feeling really well and this stay was not nearly as unpleasant as the last.

Short version: Went to ER on Thursday due to extremely high fevers. They did a million tests but could find no cause for the fever and low blood pressure. They wanted to admit me; I opted to go home. Next day, felt great! But, they called to say, come back in and be treated for infection in my blood. I returned to the ER, then was admitted to BI for two days of IV antibiotics. I'm on oral antibiotics now to clear this up.

My personal opinion is that my body did a great job of cleaning it up on its own, but, in order to prove that, I would have had to stay another two days to make sure there was no infection remaining in my blood.

MGH oncologist appt on Monday.

I want to write more -- some hilarious stories from the hospital! -- but am tired so going to bed. Thanks for all the good vibes!

Love, Marie

Thursday, November 15, 2007

Meeting at Dana Farber, but not feeling well

I was supposed to meet the oncologists at Dana Farber and at Beth Israel yesterday, but I only saw the doctors at Dana Farber. Every one there is very nice and seems to be very knowledgeable. There is still disagreement about whether this is colon or rectal. I learned that the operative notes said that the infected node came from the colon area, through the surgeon told the oncologists at the BI that it was rectal. So I'm still not clear, and they need that clarity in order to determine my course of treatment.

In the meantime, I've developed this high fever (which may explain my long message the other day!) After I wrote the message, I went to bed. I was freezing (typical fever stuff) and really dehydrated all night. I got up to go to the bathroom, and, walking back, fainted. I've never done that before -- it's not a delicate fall, the way I always imagined -- and makes me want to get carpets. Ouch!

Turns out, my blood pressure is really low (80 over 53, for people who like numbers).

So, after that, I decided that I couldn't do both appointments (Dana Farber and Beth Israel), and should only do one. I called them to make sure it was okay that I come. I figure, I'm walking into a building filled with people with reduced immunity. But they told me to come if I could get there. So I did. (That is how I learned of my blood pressure.)

I spent most of the appointment lying on the table with a blanket over me because I was so wiped out -- they were very nice about that. It took about 2 1/2 hours to meet with everyone.

I learned two key things -- they recommend that I start chemo eight weeks after surgery, and in the meantime, I should do everything possible to gain weight (I've lost about 15 pounds since the surgery) and get strong.

So I have a set of goals, once I can get this fever under control.

More later -- I'm headed back to bed!

Love, Marie

Tuesday, November 13, 2007

Experience with doctors while recovering from surgery

Hi everyone,

Well, I thought I would write. I'm crazily trying to clean up my office these days -- wonder what that says psychologically! Nonetheless, that is my current focus. Though right now I should go to bed, I'm focused on my oncologist appointments tomorrow, so I need to do something. And here I am.

This has been the weirdest journey so far, to say the least. And I feel like it is just beginning. I got this sobering news, but at the same time, life continues as normal. It's both grounding and surreal.

Being diagnosed with cancer a second time is quite sobering. Last time, I didn't hesitate to ask for emotional support or help, I had a fantastic support system, a wonderful surgeon, and I feel like I sailed through everything, floating on all that.

This time, I feel like I am on my own in so many ways. I am really hesitant to ask for help, though I think I need to get over that. At the same time, I'm physically doing relatively okay. It makes me crazy to lay in bed and hear my mother-in-law come through the door, and in a stage whisper ask someone, "How is the pain?" I feel like screaming, "I'm not on a morphine drip!!!!" But then, I don't have the energy to do that, so maybe she has a point???? ha ha

I have to remind myself that she means well, though I do get a bit passive agressive. I now have some form of childcare almost 24 hours a day, and it feels like all my jobs and responsibilities are being covered, as though it really wouldn't matter whether I was here. Sometimes I just slip out of the room and no one seems to notice. I hate hearing other people play with my kids when that is what I want to do, but I just don't have the energy right now.

I also feel like I am on my own medically, though I'll admit that I am lucky to have my husband's help, as well as my friend, M, who is coming to appointments with me to help me sort through things. She's been through this, unfortunately, with her mother and numerous friends, so she is very familiar with this landscape.

Nonetheless, this can all feel very isolating!

BUT, I really went into this differently than last time. This time, I didn't educate myself and just trusted the system, like I was floating randomly in a river. One would think I would know better. Okay, yet another opportunity for growth! So, I had a colonoscopy, was referred to a surgeon with a great reputation. He met me in the hallway between operations. I assumed that he was kindly squeezing me in when he had no office appointments for a month. But what that also meant was that there were no office notes, which turns out to be important as I shop around for oncologists who want to know my history. Whoops.

Also, I learned that I really need docs with positive energy. The surgeon is a "typical surgeon": Go in, do the job, hand you off. My breast surgeon was wonderful, reciting whatever positive affirmations I wanted during the surgery, letting me wear headsets with music, describing everything she would do, checking in afterwards. This guy -- he would only talk about how my scar would look so good when I was more concerned about the process. And who knows what he was talking about during the surgery. I think that is why my healing is so weird, but, at this point, I have to find a way to let that go and just help myself to heal.

The surgeon doesn't really want to be involved, and handed me off to an oncologist. Long story short, there was kind of a debate as to who at the BI should get me, and I wasn't so comfortable with that, because in the process, they were making alot of assumptions about where the cancer came from. There are more details -- I'll spare you!

Then I booked appointments at Dana Farber and MGH for second opinions. The staff there seem to be really knowledgable, though I have yet to meet the oncologists. (I'll meet the DFCI onc tomorrow.) But, at both, they were surprised that someone did a cancer surgery without first doing a CAT scan, and are flummoxed that there are no office notes prior to the surgery (or after). Not giving me the warm fuzzies about my experience at the BI, though I will meet with their oncologist tomorrow as well.

I'm interested in seeing how I'll do both these appointments in one day, as I nap in the afternoon (what a luxury!), but we'll figure it out. Maybe it is time for caffeine! I really have no energy.

So, I do feel like I'm on my own in selecting the next step. The good news is that I have a choice. I have to say that it really blows my mind to walk into Dana Farber, seeing patients at all stages of cancer and wondering if that is my future. Though, my current feeling is that that is the best place to be.

Next, I fall back on nutrition. Maybe I can do something there? Guess what -- the diet they recommend is the diet I basically have followed all my life (okay, minus the lovely creamy chocolate brownies! :-) ). Not much there, but I'll keep looking. Kerry, you'll love this: My first meal after surgery was broth, Jell-O and ice cream! I read that Wolfgang Puck is now crafting hospital menus, but I guess not at the BI.

I started talking with survivors, but I don't think I'm in the right frame of mind yet. I need to find something to relate to in a survivor. Since I don't really know alot about my case, it doesn't help me to hear someone else's, because I can't relate, so that is on hold, though I am still collecting names.

The other thing I started to do was work on what psychological message was I supposed to get last time that I missed??? That is probably the most interesting pastime for me!

I'll leave you with this chuckle: As a result of this surgery, it is really painful to hold in gas. So, I have to let it out. And it stinks to high heaven! Almost immediately, someone looks into my one-year-old son's diaper while he has a puzzled look on his face (because he usually walks over to be changed when he poops -- you don't really need to check him). It cracks me up but then I have to own up and say it was me. AND, this now gives my four-year-old license to fart anytime, anywhere. For a four-year-old boy, this is joyful.

Well, thanks for reading this far, or at least, skimming this far. I got alot out of writing this, so don't feel like you really need to
read the whole thing unless you want to! But I do really appreciate all your support, in so many ways.

Love, Marie

Monday, November 5, 2007

More fuzzy information

Just read the pathology report and discussed with my husband. The cancer is not actually in the lymph node but in the fatty tissue. What on earth does THAT mean? Of course, I'm scared all over again. Yikes.

Beth Israel called today. They want me to come in sooner than planned and meet with a team of doctors. Next week. The good news is that I am getting attention.

I feel a bit like I am taking a path through a dark and scary woods.

Setting up my healing team

Things are okay. I'm mostly trying to be patient with my body as it heals from surgery, and putting together a list of survivors to talk with whose profile is similar to mine.

Fortunately, I go less and less to the "dark places," though my mind does go there when I wake in the middle of the night.

I have an appointment at the BI with oncologists, and a second opinion set up at Dana Farber, so I am covered on that side. Then I need to get alternative approaches in order (acupuncture, nutrition, etc.). Actually, I made those appointments, but they are tentative based on the chemo schedule. I also want to do chinese herbs, healing yoga, yada yada yada.

For good or bad, this has put me in touch with old friends who have walked this path. I still get tired in the afternoons so I'm trying to prioritize and get things done in the mornings. I'm also trying to stay in the moment.

That's about it from here! Hope you all are well.

Once the chemo sessions start (I don't know when that will be, Dec or Jan), I will most likely need more help than I do now. So, if you are interested and able, stay tuned!

My husband jokes that maybe he will get some of Tania's enchiladas out of this! ha ha