News from Illinois!

Family, friends and priceless prayer-warrior followers and supporters~

I offer you my most SINCERE apology for the past week of 'blankness' here at the prom site.
As most of you read/saw in the last post I was able to provide, we were gone on a near week-long 'adventure' to Chicago... no, not vaca... cancer-ca...... err, CTca to be exact. ;)

CTCA (Cancer Treatment Centers of America) threw out the all-inclusive--we're talking airfare, lodging, food, transportation, consultation/services, etc--opportunity for us to visit their breast cancer accredited facility in Zion, IL to receive some much-needed second opinions on some things and well... we jumped at it!

And are we ever so glad we did!!!

Initially, I'd planned to summarize our trip on a daily basis--give you a quick synopsis of each day, while we were there, in the treatment updates--so I am doing that still, just after the fact.
However, to keep from being quite so redundant *since you can just go to the Treatment Updates link on the home page and read that there* I'm going to give you all the low-down on our overall gain as far as contacts, treatment-facts, etc from the trip in this entry, as well as touch on what's next in our plans, per the decisions we've concluded.


Firstly...
I apologize for the very little notice of our trip--we felt the same, ha! From the day that I contacted them just to inquire how they do things, to the day we were actually confirming trip-details with them, it was about a week and a half. But hey, when you're dealing with CANCER... you don't dilly-dally.

We flew out of Eugene on Tuesday May 7th and took a red-eye flight so that Aaron missed as little amount of office-time as possible. This allowed him to see all his patients on Monday and nearly all on Tuesday (he made up the missed ones over the prior weekend) before we had to leave and then missed Wednesday, Thursday and Friday while we were there.
Because they are a working hospital and have the majority of the necessary medical teams there during the week, we really had no other choices... and we were even told that I may *mostly likely in fact* be flying back at a later date then Aaron, assuming we weren't going to get it all in in the mere three days during the week that we'd be there. Thanks so some serious sleep-deprivation endurance, however, we did!
We arrived at the O'Hare airport at approximately 4:30am (their time) and had, unfortunately, been unable to sleep on the plane. Anxiety? Cramped space? Who knows. I just know, we' were already pushing the 22 hr no-sleep mark at that point--and we were both feeling it. We were greeted by a quirky but very sweet driver who escorted us out to a limo. While on our way to the hotel, we even joked about how the last limo ride we'd had was nearly 11 yrs ago, after our wedding, and how unfortunate that this was under such exhausted and therefore uncaring circumstances, ha! Fortunately...that was not the only time that CTCA treated us to that experience during this trip. ;)

CTCA put us up at a decent hotel on a golf course, which was a lovely location... however also the furthest one from the hospital that they partner with. Needless to say, by the time we arrived there, it was pushing 6am and all we could think about was the much-needed *albeit short* nap we were dying to get in before having to be at a 9:15am appointment that same morning. :-P
As soon as we got up to our room, we flopped our stuff down and climbed in the bed...setting the alarm for 7:45am, as we had to shuttle twenty-plus minutes over to the hospital and they only came on the hour.

Can I just say how HORRIBLE a tease that an hour and fifteen-minute nap is when you are going on a full DAY of no sleep?!
Yeah.

I decided that you're better off to just stay awake once you hit that 24-hr mark, vs tease your eyes and your body with a power nap.
UGH.

Anyway. We did get up...grouchy-pants-ed and all... with about 10 minutes before having to be downstairs for the shuttle, chanting to ourselves *per the original plan* 'We can make it to noon, we can make it to noon.'

Now, although I was told that even the driver's in all their transportation are as sweet and supportive as every nurse, PA, doctor, receptionist, etc, that you deal with there... I was NOT (especially in my zombie-monster state) prepared for a full on Spanish-born stand-up comedian! :-P

I will let YOU 'imagine' how that went and just say it was a very good thing that Aaron could speak for me that morning and that Robert (our driver) had many other patients and care-givers on that bus to joke with. ;) *And yes, he did..the next day..see much better sides of me, though he decided that Aaron and I were honeymooning government-agents?!* :-P


Anyhow. What we thought was going to be just a short morning and much-needed return to the hotel for sleepy-time became a morning of appointments followed up with an entire afternoon of tests! The only good news to that, I suppose, is that most of those scans/tests require you to lay very still for long periods of time once we're in them--so you bet--I SLEPT! ;)
By the time 4pm rolled around, we'd gotten into a complete routine of what was on what floor, how the free cafeteria-food system worked and where the best sitting/waiting areas were.

The second and third days at CTCA were filled with appointments---nurse navigators, nurses, medical oncologist, breast oncologist, radiology oncologist, dietician, naturopath, mind & body counselor, pastor, physical therapist...you name it, I saw it... errrrr, him/her. ;)

As I said before, I'm not going to ramble on, each hour, what I did and where we were as I think that could become a whole book in just one entry, ha, and you (or I) really don't have time for that! What I DO want to do, however, is let all of you in on the important information we gathered from the key roles on the team we were assigned to and let you know, from here, where we're headed with my treatments and cancer-prevention strategies. So, bear with me cause here it goes:

*Medical Oncologist:  He was helpful in providing most of what we've already been told. He was thorough, compassionate and concerned. He did provide us a bit of contradictory information concerning my study chemo-drug, saying that it's not really used for breast cancer... but this was later cleared up by the the beloved breast oncologist that we met with the next day.

*The Dietician: This woman was excellent...so helpful and chalked full of info that I really haven't had in my OHSU experience. AND she didn't make me write anything down! ;) For that matter, none of them did. They all provided me with handouts that had every topic of discussion listed and thoroughly covered...and anything that came up that wasn't on there THEY wrote down and provided for me! There were a few differences from what I'd be told by the nutritionist at OHSU, but the biggest most disheartening one was hearing that the things I avoided on my particular chemo were actually things that they encourage their patients to eat/drink for immunity purposes...and this was confirmed by two other medical professionals during other consultations. Interestingly, but maybe not so surprisingly, I did not however find myself wishing we could 'go back' and have those things incorporated... and she was not at all surprised to hear me say that, ha! ;)
OH... and for the record, I feel I need to share the found truths on the super popular idea that 'sugar feeds cancer' so that we can put a stop to this claim. The dietician, herself, even said that it's one of the biggest most frustrating claims out there right now and though ANYBODY *cancer or no cancer* should limit their intake of processed sugars and processed foods in general because of what they do to our bodies and what they DON'T do for our systems that we need food to be doing... there is no founded evidence from controlled studies on the topic that prove this to be true--especially in the case of my cancer. She also confirmed that there are no magic fruits or herbs that completely and miraculously get rid of the cancer... but she did provide us plenty of supported and founded information and pointed us to great resources that provide such on the topic of beating cancer over time with the approach coming partially from my dietary habits. :) I now have a few different cookbook titles that I will be acquiring and I'm honestly excited as our diet will focus around organic greens, fruits and veggies, whole-grains, hormone-free dairy,16 oz a week of red-meat protein with most meat being fish and free-range chicken and little to no processed foods. Sort of just a big step upward into all-natural then we were already doing. ;)

*The Naturopath: This woman was equally excellent in knowledge. Not only did she prescribe me NATURAL APPROACHES to some of my still-present and plaguing side-effects from chemo infusions (ie: hot-flashes, gastro-intestinal stuff, blah blah), but she is completely familiar and up-to-date with the different types of chemo and what works and 'compliments' and what doesn't or 'contradicts' what other things I'm on. She also talked to us in great length about radiation and how to set myself up for the best possible dermatological effects--gave us some scripts for the top-rated lotions and oils that she has patients used, based on findings and outcomes.

*The Breast Oncologist: This man (Dr. Citrin) is just plain brilliant. He's been a breast cancer doctor for nearly 37 years, has a P.H.d, written a published book and is a devout Jewish Scotsman.
Yes. You read right.
And we didn't need more than 10 minutes with him answering our questions, responding to our concerns and just reviewing my case to get a handle on how versed and intelligent he really is. Of course, add to that the google search that brings up hundreds of excellent reviews and multiple sites where his expertise is involved and you find yourself feeling like you've found a man you are willing to travel 3000 miles for!
His most immediate observations and concerns were in this order:
1. We need an attorney for how we got here in the first place--if nothing else but to prevent other women from going through the same.
2. The WHOLE breast/collar-bone and right-side lymph area need to be radiatied, not just the lymphs.
*and yes, he went into a lot of supporting evident and detail as to why this needs to be the case*
3. I need to receive Herceptin for an 'indefinite' amount of time.
4. My IUD (Mirena) should have been IMMEDIATELY removed after my cancer-diagnosis was given... this due to the fact that my particular devise is coated in Estrogen--the very hormone that my current cancer feeds us.
5. We should wait on permanent fertility decisions--ie, Aaron getting a vasectomy--until we are more certain of things.
6. I MUST take Tamoxifen for 5 years and then after that point (at age 38) we will all meet and discuss what needs to happen, based on the most current research at THAT point and based on the findings with my tumor--ie, if it hasn't returned, etc. He also informed us *siting multiple research studies while doing so* that my cancer is extremely aggressive and IF/when it does try to return... it will most likely be within the first two to three years. He gave us additional charts to explain how they best control hormone-driven cancer, why Tamoxifen works so effectively and restored my hope in many things--one of which was biggest concern--being and feeling and having the abilities that mark my femininity! Although we will not be moving to Illinois to have monthly appointments with him like I prefer, we are now praying about taking him on as my regular oncology doc, having him give recommendations, sending him all future treatment files and charts and following up with him, in person, every 3-6 months... depending on what we can, financially, make happen. He was HAPPY to play this role and we are happy to have him do so from this point, forward!

*Radiation Oncologist: This man (Dr. Chang) is from North Korea and although there was quite a challenge in language-differences, it was equally apparent that he is well-experienced and very detail oriented...something you WANT in your radiologist. He is pretty insistent on the same treatment as Dr. Citrin recommended, though he wants to see me have a full 6 weeks, 5-day-a-week radiation schedule. He also explained why they would radiate all the way up to the collar-bone area through a logical example that showed if my lymphs were still infected, their natural pathway would be that--so he wants to 'burn' their path before they can even start on it.
Made sense. ;)
His nurse was as equally awesome as Citrin's too, and the reverence and respect that they both have for their doctors from past-workings were very evident.



Now that your head is spinning as much as ours was, let me tell you our plan.

Dr. Chang (the radiologist) told us that the radiation he recommends really can be done anywhere they have the standard equipment and abilities to provide radiation. It is nothing specialized and therefore should not be too difficult to arrange. He also said that within the next month *for sure!* I need to start the 5-6 week-long stint of receiving it.
What does this mean??

This means one of a few things.
A) I am now on a radiologist search in Roseburg... and I'm starting by talking to the Cancer Center tomorrow to see whom is recommended and whether or not I can get in a consultation. Basically, the mission is to find someone, here, who agrees with the same recommendations I've already received so that I can take care of it locally--since each day's treatment is about a 15-min long gig and hard to feel worth trek's up and down the freeway for, everyday.
B) If I can't find one in Roseburg, I'll be turning my search to Eugene or Portland... but again, the gas/time/commitment of that is hard to swallow.
C) I'll be praying about whether or not taking advantage of CTCA's travel-program and $20/night lodging cost is worth being closer to these awesome doctors.


Summary?
PRAY FOR THIS DECISION, as we now are, too.

After all is said and done, it's just another big step on this road to a, hopefully someday, full-recovery~