Quick note about posting comments

Hi All -

I know many of you have had issues posting comments here and I think I FIX IT! Seems as though the blog was set to only accept comments from users who had "subscribed" to this blog. That setting has been adjusted, so please post comments like crazy :)

Now as long as you have a BlogSpot account, you should be able to post comments here!

PLEASE let me know if you have any problems (and specifically what errors you receive).

Much love,
Monica~

More tests...

Well... the big news... no chemo yesterday!

My doctor came into the room about 10 minutes before the chemo was scheduled and said, "I know that you are all prepared to start chemo today, but"...

Let me back up now for a review of the day. First, God sent an angel to help us - Maggie! She is one of the many people dedicated to research at MD Anderson, and I was on her "list". She phoned me a few days ago, to let me know about her role and to give me all the info that I needed about where to be and when - she explained procecures, helped us through bottlenecks and ... perhaps most impressive... validated our parking!

She met Nick and I and led us through the steps.. and believe me, it wasn't an easy schedule. The one thing I regretted most was bringing books to read. We just had to haul them around all day - there was no time to sit and read!!

While I had the "long catheter" inserted at the infusion therapy center, Nick had to go to another building and sit through a class on how to "flush the line". He will have to attend two classes before they will give me the supplies we need for home care - that means that I have to go back to MDA on Saturday (today) to have the dressing cleaned and the line flushed. I can't help but think of all those folks who travel around the world for treatment. You can see why they have to literally move here! I am just thankful that I live about 15 min. from MDA.

Maggie's research follows the side effects and symptoms of the type of chemo that I have been prescribed, so I had to do a series of tests to give them a marker for future reference. One of the most noteable side effects is temporary short term memory loss. (no jokes here from family or friends... we ALL know that I have a hard time remembering everyone's birthdays!)

I had to complete a number of tasks, like repeating long series of numbers (which I suck at)... and remembering long lists of words (which I was pretty good at)... among many other things. At one point, I had to repeat series of numbers (up to 7 or 8 numbers) backwards!! Is there ANYONE who can do that?? Probably Nick!

Maggie helped me tremendously with her very honest explanation of "what to expect from chemo"! The really ironic thing is that I had finally come to terms and was not afraid of the treatment. The regiment that I have been prescribed will not have all the horrible side effects that haunted my thoughts (visions of what my father went through). After the morning with Maggie, I felt prepared.

Then the last thing on my schedule before reporting to the chemotherapy unit, was a review with my doctor! After reviewing my tests from last week, they identified a couple of "spots" on my liver which he feels we should biopsy BEFORE we start the chemo. The issue is that chemo treatments can mask the spots without actually curing cancer. If the spots are cancerous, then they can identify and remove just those small spots. If cancer is confirmed but the specific spots are not visible via ct scans (ie: due to chemo), then they would have to remove a large section of the liver (not a good thing!) The procedure for the biopsy is very simple.. and should be completed next week. Once they have completed the biopsy and have the results back, then I will start chemo probably November 7th.

Just a word about "spots"... it is very possible that these are just small "fat" cells - (maybe left over tequila shots?) the biopsy is just a precaution. If it wasn't for the whole "masking" thing then it would not even be an issue.

I admit that I was very anxious... ok scared silly... but I'm better now and ready for whatever! Lots of good thoughts, prayers and words of encouragement from all of you!!
As always..
Thank you and much love,
Sia

Today is hard…

Today is hard, because yesterday was wonderful. Today is hard, because tomorrow is in front of me like a big, dark cloud.

I have no idea who is really reading this blog, but I do hear from many folks who say that they do. We’ve tried to keep it upbeat through this process, but maybe that’s not fair. Cancer sucks. Every day is not going to be good…

I woke up yesterday with a pretty clear mind and spent the day sorting through paperwork, organizing bills and trying to “get a grip” on this whole process logistically. Basic stuff, like “how much is this really going to cost me each time I go to the hospital”?? I had this whole idea that maybe I should delay treatments for a while – maybe it made sense “financially” to wait until the first of the year? I called my insurance company (always a joy), and all the “helpful contacts from MDA” with lists of questions for each of them – it was suddenly so important for me to know specifics –– Reality is that my insurance is fine and there is no logical reason financially to wait… but really I was only desperately looking for a “way out”.

There is so much that I don’t know about what’s about to happen to me and it all starts tomorrow - any idea that I might have some control over this process will be gone when I check in tomorrow morning. OK – that may sound a little melodramatic, even for me… but hey, this is MY blog! J

The truth is.. that IS how it feels - like I’ve lost all control. I don’t want any of this… I don’t want cancer, or doctors, or even medicine.

Tomorrow they will insert a long catheter into my vein with a “quick connect” that will stay in place for the next six months. The good news is that they won’t have to continually be looking for a vein to draw blood or for an IV – just go right in through the connection. I’ll be at the hospital from 9am until after 7pm - from 3:30 on I’ll be juicing up on chemo, and will leave with a pump that will continue for two days. I go back on Sunday to have the pump removed and then wait two weeks to do it all over again.

Frankly the whole idea is so foreign and freaky that I couldn’t even sleep last night and I sat and cried with my morning coffee. I know that sounds horribly full of self-pity.. but that’s not really accurate either. I just needed to cry.

I am so very thankful for a huge, wonderful support group. I know that cancer research has come a very long way and that there are many of YOU who are survivors and have already been through this whole process.

I guess I just had to have my moment - To let all my loved ones know that they are needed and appreciated… especially on days like today.

Mucho love,
Sia

Back to Houston

The days are just flying by... and yet it seems like so much has happened in the last few. Tuesday I saw the surgeon in Dallas and she said that I was "healing nicely". She also mentioned that it is normal following this type of surgery to have "zero stamina"... I told her that I had found that out on my own! Dr. Leverton was an absolute angel... I am so thankful for the care that she provided at just the right time. Her office also responded very quickly to send my records to MD Anderson and as a result, instead of taking another 2 weeks, I got a call from them the same day (last Tuesday) that they wanted to see me on Friday!

My youngest son, David, flew to Dallas Wednesday morning and drove me back to Houston the same day. It was a little hard to leave Dallas - I was having too much fun with Monica, E and Garrett!! But it was good to see my own home again - I hadn't been there since before the hurricane! Vixi (my dog) was super excited! She wasn't sure what was going on!

Yesterday (10/17), I started my journey as an official patient at MD Anderson. My son, Nick, stayed with me the whole day - the kids are really great at tag-teaming me!! MD Anderson is the best - it is also huge and has so many patients that it can be very overwhelming, especially to us "sick people"! My new doctor, Chris Garrett, is excellent - he explained the options and the statistics... I won't bore you with the technical stuff.. but I'll be taking two types of chemo once every two weeks for 6 months. Everyone responds differently to the drugs, so he can't really tell me what to expect. I'll start my first treatments next Friday. So I guess it's one-two-three-go...

After meeting with the doc, he sent me on my way for a day of testing. I was there from 7am until after 5 and it was incredibly tiring. The nurse handed us a print out of my schedule with where we needed to be and what time and what test... I felt a little like it was my first day at college.

Just a funny side note: Nick is still recovering from a broken foot (a souvenir from his brother's bachelor party).. he is just off his crutches and is still walking with a cane - but he went with me to all my appointments . At one point, one of the nurses told me that I'd have to wait outside... she thought HE was the patient!

Nick carried two backpacks and a laptop and was studying and working the whole day, and he still kept me and the hospital staff in line! If it hadn't been for him, I'd probably still be sleeping in one of the waiting areas. There was a problem with the ct scannners.. and they had 3 or 4 waiting rooms full of patients waiting for the tests. Somehow they just forgot me... Nick managed to get the ball rolling, not just for me, but for all the folks waiting with me. He better be careful or they'll end up offering him a job!!

On the way home, we stopped for some Greek food at Nikko's (I LOVE the potatoes).. It was the first food I'd had since the day before so it was fantastic! I had hoped that after my appt. I might get over to Ros and Paul's for a house concert - Jed, Mason & Hugh are some personal favorites of mine.. But by the time I got home from the hospital, it was all I could do to pull myself into bed. As Nick left (to go to work!)... Gordon "tagged into the ring" and stayed with me last night and today before flying off to Brazil for work! Now David is back here with me!

Everyone has been thoughtful and caring - there is no way for me to express how much it has meant to me. I am so blessed. I have so many family members and friends who are offering to help, and I appreciate every one of you more than I can say... Please know that I would love to see each and every one of you, but I am very tired and really do need some quiet time.

Practically speaking, this is not going to be an "easy fix"... unfortunately, it is going to be a real journey. I looked around that hospital yesterday and it just broke my heart to see so many people, most of them a lot worse than me. But at the same time, I saw folks with such courage and determination - people who were willing in the midst of their own personal trials, to offer directions, a word of encouragement, or share their warm sense of humor. I think I will learn a lot at MD Anderson.

Sitting around healing...

Just thought it was time to give you an update. I have felt a lot like I got hit by a very big truck! I think I’ve just about figured out the right balance between pain and drugs. That was the hardest for me because I really dislike taking drugs of any kind, but they were my friend for a while there! I am still at my daughter’s house in Dallas and will have to stay here for at least another couple of weeks to get clearance from my surgeon. The surgery went really well. The doctor was absolutely brilliant! She managed to do the surgery with the smallest possible incisions so I can still keep my fantasy about wearing my bikini in the Bahamas ! :J

We got the final report from the surgery. The tumor was 15 cm and had spread through the colon wall. There was cancer confirmed in one of the 17 lymph nodes that were tested - which means that it is early stage 3 cancer and will require chemo treatments.


It was a little disappointing to find out that the cancer had spread into the lymph nodes – we were really all hoping I could avoid chemo…. But looks like I will have to follow up, hopefully at MD Anderson. I think the hardest thing for me with that is that I had to watch my dad battle cancer for 6 years. Of course, they have made a lot of progress since then, so I’ll try not to completely panic until I’ve actually talked to an oncologist.

I really do believe that “all things work together for good for them that love God”.. so I’m looking for the blessings! It is certainly an opportunity to take inventory and focus my energy. I have to remember that my life completely changed for the better after the house fire and I sincerely believe that God can turn negatives into positives! I figure there should be some REALLY good positives from this one! I've already started working on some of my songs and hope to finally finish a new cd!

Anyway, I'm not very good at all the details, but the quick overview - I'm doing much better. I still sleep most of the day, but have managed to drop my pain meds from every 8 min. to once every 10-12 hours, so i am gradually regaining some clarity of thought. I am on a low fiber- low residue diet.... which means I can eat all the things that i never ate before and none of the things that I was eating. Just to illustrate, it's referred to as the "twinkie diet"... :-) I can't eat raw fruits, veggies or nuts... just white bread, white rice, ice cream, pasta... you get the picture. Not a very good diet for the bikini

There really shouldn't be much to report for the next few weeks. I have a check up scheduled with the surgeon on the 14th, and hope to confirm an appointment with the oncologist sometime towards the end of the month. I am feeling a lot stronger and am checking both work and personal emails daily now - so I'd love to hear from you!

I want to especially thank Mary for her healing wisdom and guidance; Sondra, Eagle and Jeena for the herbs and prayers; and all of you who sent me the wonderful words of encouragement and beautiful cards. Of course, my deepest gratitude to my beautiful daughters and grandson, who have actually made this journey a fun adventure! I am so blessed.
Much love and gratitude,
Sia

Day 7

First, I apologize for the delay in posting (it's been a bit hectic here *cough cough*).

Yesterday, Mom ate chicken noodle soup for dinner and she was SO excited about the noodles, she ate every last one... I actually missed it, as I went back to work yesterday and my dear friend Lola came and Mom-sat :) This was the first pseudo-solid food Mom ate in over 2 weeks! Tonight she had pork tenderloin, potato cakes and carrots - one heck of a meal for a vegetarian.


She is really doing quite great... Dr. Leverton took her off the morphine today and changed to an oral vicodin to control pain. Provided we make it through the night tonight, we will be going home tomorrow (YEA!!!!!!!) She will be on a low fiber diet for the next 3 weeks, which means Mom will not be able to continue down the vegetarian path, at least for now, as she will not be allowed to eat any raw veggies, fresh fruits or nuts (which was ALL she ate before)... so this could get interesting.

Dr. Leverton recommended waiting at least another 3 weeks prior to starting the chemo treatment. My brother Nick and I are coordinating to get the referral completed with MD Anderson. This process takes 10 business days, so if all goes as planned we should get an oncologist just in time to move Mom back to Houston and start chemo (fingers crossed). Unfortunately, until we meet with the oncologist in Houston we will not know any of the details about the chemo treatment plan that will be required (which type, how long, what the side effects will be, etc.)... we only know it is a must.

Mom is in high spirits, however, her energy level is extremely low, so again I will encourage you all to send your love virtually whenever possible, instead of calling :) She really has so many phone calls she would love to make, but even a 2 minute phone call seems to completely wipe her out. I expect this to improve once the morphine is all out of her system, however, vicodin is a pretty heavy drug also, so we shall see.

Tomorrow will be quite hectic just getting Mom situated in a new environment (and right after I learned all the ropes here). Our next big challenge will be figuring out how to keep my dogs and Mom's dog (Vixie) at a safe distance at least for the first few days... we are thinking of giving Mom my bedroom (my bed is the lowest to the ground, plus the master bath is much closer to the bed than the guest bath/bedroom setup), then we can put a baby-gate in front of the bedroom door so the dogs can say hi with invading on her space too much.

That all for now.... much love to all!
Monica~