Tuesday, March 17, 2009

March 17 - Happy St. Patrick's Day!!

SHORT REPORT: I had chemo last Wednesday, 3/11 through Friday 3/13. Usually side effects are a little delayed, but I had severe nauseu starting Wednesday night and have been a total recluse - hiding out at Nick and Sue's in Cypress. The doctor gave me two scripts which I can alternate and that has been a real help.

MORE DETAIL: At this point, I would really love to write something "catchy and cute"... but unfortunately, will just have to settle for direct. Lack of energy has gotten the best of me this week, although it hasn't all been bad. Nick got me a new laptop - the old one finally died, leaving me with serious internet withdrawals! I'm still getting it set up, but will have all the latest and greatest, including Microsoft Office 2007, to play with.. and hopefully update my resume!

I have started looking into school financing to see if it is a realistic option for me to go back to school. Also, had some great conversations with Sue, my daughter-in-law, who has been handling my finances for me through this mess. She is a super encouragement to me! Cute AND smart!!

One thing I have decided is to let go of my car (with it's huge monthly payment and ridiculous percent rate) and try to find a used car that I can pay cash for. If anyone knows of a good deal please let me know... my main concern is that the car is dependable...
a sun roof would be nice :-) (just kidding!)

So with my final brain cell... I will wish you all a very Happy St. Patrick's Day!

much love,

Sia

Sunday, March 8, 2009

March 8

"I accept challenges as opportunities for change... I have the courage to find new parts of myself...."

These are quotes from my daily meditation provided to me with flower essences by my friend Mary. Such wisdom... I want to do that!

There certainly are a lot of "opportunities for change" in my life right now. There is a real concern that when this treatment is over... I won't have my wonderful job to go back to. I am still hoping that isn't the case and that I am able to return to work - I adore the people that I work with. However, I do have to consider that may not be happen and prepare myself for a world of options...

Now change is very frightening, and exciting at the same time. I do tend to sway more toward the "excited" side in most situations which should scare the hell out of me. LOL.. It is such a BIG world out there - I can't help but think of the unlimited possibilities! I could open a Montessori school on a reservation and teach Native American children.. sell some songs and win a Grammy... redesign my website and turn my obsession into a profession.. finish my novel... become my daughter's live-in nanny ... or just sail around the world wherever the wind (and Gordon) lead. Of course, I could also polish my resume and find another job.

I am open for suggestions! Meanwhile, I think I'll have another cup of coffee and have a nice chat with my dog!

It is a beautiful day in Dallas!
much love,
Sia

Tuesday, March 3, 2009

March 3

SHORT REPORT: The pump came off last Friday - I am still feeling tired and nauseous, but the fatigue is not as bad as it was with the oxaliplatin. I was a little disappointed that I didn’t feel a LOT better – but I’ll take what I can get - At least I can eat salad and ice cream! I plan to go visit my daughters in Dallas this weekend and hope to see my grandson’s soccer game – fingers are crossed! Next chemo is Wed., March 11.

MORE DETAIL:
Just FYI - Here is a summary of chemo treatments so far, and an explanation from my doctor about the chemo treatments, and why it is better to stop the Oxaliplatin . Each of the “reductions” and postponed treatments were due to low blood counts.

Treatments #1-4 Full dose, (11/5, 12/2, 12/17, 12/31)
Treatment #5 Oxaliplatin reduced from 85mg/m2 to 65 mg/m2 (1/21)
Treatment #6 Oxaliplatin reduced to 50 mg/m2 (2/4)
Treatment #7 No oxaliplatin (2/25)

"Clinical Trials that proved FOLFOX (5FU, Leucovorin and Oxaliplatin) given for 6 months was better than 5FU/Leucovorin alone. Older trials had initially said we needed to treat patients for 12 months, then a followup study said, no, we only need to treat 6-8 months for same benefit, then the MOSAIC trial came out stating FOLFOX was better than 5FU/Leucovorin over 6 months. It was shown that 3 year disease free survival, 5 year overall survival was better with FOLFOX. This trial was based on patients completing 6 months of treatment.
5FU/LV significantly improves overall survival after surgery, but adding oxaliplatin does increase it more. You got 3 out of the 6 months of treatment with oxaliplatin, so we feel you will get some of that benefit. We cannot know for sure how much,because the trial was not based on patients only getting 3 months of treatment. But we know some is better than none. We also know that the long term side effects of oxaliplatin can last and inhibit quality of life long after treatment has been stopped. Also, if your blood counts continue to struggle and we don't drop the doses, then you may have to stop treatment altogether and not get a total of 6 months of treatment, which would be a worse situation. " - straight from my doc for those who like technical explanations.

much love,
Sia

Thursday, February 26, 2009

February 26th

SHORT REPORT: Good news is I had chemo yesterday... but the doctor has cut out the Oxyplatin due to low blood counts. This should help me stay on schedule with the rest of my chemo treatments which is very important.

MORE DETAILS: I fell asleep really early yesterday after treatment, and then woke up about 1:30am and started making soup and answering emails. Good thing I'm a flexible person! I am a little anxious and excited as to how the side effects will change now that Oxyplatin is out of the mix. The Doc said not to expect too much right away.. that Oxyplatin will stay in my body and continue to cause side effects for some time - Some of them may actually get worse before they get better :-(

The good news is that the platelet count should come up - which I hope means more energy and less headaches - although it didn't seem that way last night!

I think I'll have some green tea... meditate on my flower essences.. and practice tai chi - or maybe I'll just go back to bed... hmmm? Onward through the fog!

Much love,
Sia

Monday, February 16, 2009

February 16

SHORT REPORT: I’ve gotten some strength back… and should have an excellent week! We moved my chemo to next week, which gives me an extra week to recover!! The doc says that my body may not tolerate much more of the oxyplatin… one of the chemo drugs in my “personal cocktail”. It is the one with the most affect on my platelets… and is also the one that affects neuropathy. So I’m hopeful that the side effects will be much more manageable if the doc does follow through with eliminating that drug!!

MORE DETAIL: We made it down to Galveston for a quiet recuperating weekend, completely unaware that it was MARDI GRAS!!! Fortunately we had a great day on Friday, although by the time we made it to our hotel, I had no strength left for that evening stroll on the beach. Gordon is such a trooper and takes those last minute disappointments very well! Saturday morning, we bought our beads (couldn’t leave without beads!)… had a nice quiet walk on the beach in a light rain... and made our escape before all the craziness started!

My strength comes in spurts – so I keep my “Wanna Do List” - not to be confused with a “To Do List”… since I really don’t know if I’ll get it done! When I feel like I can actually DO something… I grab my list and off I go until I hit the next brick wall. A pretty simple plan which seems to be working ok – as long as I don’t get too ambitious!

One reason why we postponed chemo this week is because I have several personal things that I need to attend to and if I had a treatment on Wednesday, it would be impossible. It also has the added benefit of laying my schedule out so that Tartan Day is a few days BEFORE a treatment – providing the best chance for me to attend the San Jacinto event! This week, I’m hoping to attend a kickoff meeting for the Admin Mentoring Program at work! All of the ladies have been so supportive – I can’t wait to see them!!

So today is a day to check a few things off that list… like writing on the blog!

Much love,
Sia

Tuesday, February 10, 2009

February 10

SHORT REPORT: Chemo still sucks! My platelet count was low when I had chemo and, judging from my body’s reaction, took a nosedive. I don’t seem to be loosing any more hair.. but my skin is so dry that I feel like I have a mud mask on all over my body. Flu-like symptoms get worse with each treatment and seem to last a little longer each time.

MORE DETAIL:
Well… the best way I can describe the last several days is … like taking a swan dive into an empty pool! I have visions of Wiley Coyote falling off that cliff – hitting bottom and then the anvil hit!.

I had the most fantastic few days right before chemo - Things just fell together for an incredible memorial ceremony at San Jacinto Monument for next Tartan Day! It’s something that I’ve dreamed of for several years now!

I guess I was a little naïve to think that I could avoid the crash. . so I just ran right off that cliff!. I had planned to spend the weekend with my son and daughter-in-law, but as it was, barely made it from the bed to the couch.

I had chemo a week ago tomorrow… and today is the first day that I felt strong enough to stand and brush my teeth. I haven’t been out of the house since last Wednesday. If all goes well, I’ll make it over to Nick’s today for some much appreciated change of scenery!

Thanks so much to all of you who continue to send me emails and cards... it means so very much!

mucho love,
Sia

Thursday, February 5, 2009

February 5

SHORT REPORT: My blood levels (white cells and platelets) were still low and blood pressure a little high... but the doc kept me on schedule with a slightly lower dose. I am currently hooked up to my fanny-pack pump... which will come off early tomorrow afternoon. Looking forward to a sunny weekend!

Monday, February 2, 2009

SHORT REPORT: I feel very strong and ready for the next treatment on Wednesday. I have to be there at 7am for blood work, but should be back home by early afternoon.

MORE DETAIL: This whole journey is really very personal, so I do struggle with what to share and what to keep private. The last month has been a very private time, with much of my battle being mental and spiritual. The lack of energy and inability to think properly make that battle a serious challenge.

MD Anderson offers support on every front… and I am trying to take full advantage of that. Last week was the first time that “the planets were aligned” for me to participate in some classes at MDA – Tibetan Sound Meditation; Qigong and Tai Chi were all incredibly enlightening (no pun intended). The Eastern remedies all recognize the flow of energy and it’s importance to healing and health. I can honestly say that the difference was tangible.

Great news - my insurance will cover acupuncture, which has also been a huge help, not just in the energy flow, but also for the problems with neuropathy. There is a wonderful MD at MDA who has been practicing acupuncture for over 40 years. She’s incredible! I'll have another treatment tomorrow in prep for my chemo Wed.

To add to my quest for more energy… my healing friend Mary came to the rescue as well. She provided me with “flower essences” (no… not the kind you smoke)! There were a total of five different flowers which she chose for me and each one has a unique message that I repeat as a meditation – this has proved to be a real strength. I was amazed at how the words addressed very specific needs! Thanks again, Mary!

So I must go now and practice my meditation and Tai Chi… and conga!

I am blessed.
Sia

Sunday, January 25, 2009

January 25

SHORT REPORT: My platelets and white count were still low last Wed (1/21), but had improved so the doc approved me to have the chemo treatment with a slightly lower dose. The concern is that we don’t want too many more delays in the treatments. It is better to have a lower dose on a consistent schedule, rather than have to keep skipping weeks due to low blood levels.

Nausea and fatigue are the two worse side effects right now. So I feel very fortunate. Although it really sucked that I missed Ros and Paul’s Burns Dinner :-(

I'm sorry that I haven't written more... the days just seem to run into each other... good and bad mixed in together. Fortunately there are some of both... not just bad ones, although my energy level does get in the way even on the good ones. We've had some of the most beautiful weather lately mixed in with some really cold days... seems to reflect my own life! So I just sit in the sunshine whenever possible!

Since the last dose was a little lighter, I'm hoping that next week will be a good one!

much love,
Sia

Thursday, January 15, 2009

January 15 - Frustration is my muse...

SHORT REPORT: No chemo yesterday – low platelets Looks like I’ll have to go through the process again next week!!

This has been an incredibly frustrating couple of days, just trying to find some kind of normalcy in my chaotic life. I've been dealing with all the paperwork and financial concerns, which is a full time job in itself, and there does not seem to be much hope of a positive change in the near future. Although I am really fortunate to have grown children who are very capable and willing to help with anything and everything, I am still a very private and fiercely independent person and the whole "helpless" mentality is totally foreign to me. Yet, more and more I find myself with fewer options.

The low point of the week was finding out that I couldn't have chemo yesterday because my platelets were too low, although I was honestly feeling pretty badly by the time I found out and was just glad to be able to go home.

"Some days are like that... even in Australia"
Sia

Sunday, January 11, 2009

January 11 - And the process goes on...

SHORT REPORT FIRST: fairly harsh side effects from the last chemo, but feeling really good the last couple of days – aside from the embarrassing “almost fainting thing at the airport (more later in the blog). My hair has started to break off a lot now, so it’s time for a change (more later). Next chemo is Wed., January 14th the research group will test my “short term memory and motor skills” again to monitor the effects of the chemo that I’m taking. The “up and down” is hard on my emotions, but then remember I DO have that rubber butt thing! So what goes down… must come up!

MORE DETAIL:
New Years Eve was my last date with chemo. Monica stayed with me (I know why Garrett is such a trooper!) and together, we brought in a very subdued and peaceful New Year at Gordon’s house. Then I spent the next few days at Nick & Sue’s house where they took really good care of me. The weather was beautiful and I spent as much time as I could in their backyard, playing with my dog!! It was magic!

When the time came… Nick removed the pump like a pro!! No mad dash to MDA – yippee!!! We really should call him Dr. Nick!

His wife, Sue is a jewel! She has been such a tremendous help with my bills and especially the whole “keeping up with medical invoices and insurance statements” thing!! It would be a total nightmare without her. Of course, she’s also just fun! Her new short haircut inspired me… she looks adorable! We went to a movie and got some delicious sesame rolls at the Asian market. We also had an opportunity to just sit and talk, which was very special since she works so much! I feel really thankful to have her as a daughter-in-law!!

After I was free from the pump, I enjoyed a couple of days of solitude at Gordon’s house (yes, I DO like to be alone sometimes!). I was still feeling pretty yucky, and it had gotten really cold outside, so I just hunkered down with my blanket and my friend, TV! Actually, it gave me an opportunity to sort through more of my “stuff” and consolidate it a little more – so I was able to be a little productive!

Then the news predicted the prettiest day of the month – sunshine and 70’s! So with the help of my son David… I made it to Galveston to enjoy some sun on the beach! It was the very best medicine. As I sat on the pier, the sun started to go down and it sent out a long ray of sunshine straight out across the water, directly at me! It was like the sun was pointing at me! I love the ocean!!

As I mentioned earlier, my hair has started to really show the effects of chemo. Although it hasn’t fallen out completely, and the doctor said that it may not, it definitely has been thinning a lot, and has become very brittle – breaking off to only about ¼ - ½ inch in some places. Of course, those “some places” are never convenient – like right in the very front! So it was time for some action. My daughter sent me a plane ticket for an emergency trip to Dallas!! I was starting to feel a little better, so the timing seemed perfect.

Admittedly, my next adventure proved that I am still in denial about “my condition”… and I got a serious reality-check! I loaded up my suitcase with wheels and put everything possible into it, so I wouldn’t have to carry it on the plane (that was my strategy). Then I headed to the airport, parked in the economy lot at Hobby - which is fairly close to the terminal, walking distance for "most folks". I jumped out of my car and grabbed my stuff and… suddenly realized that I could NOT carry it! In fact, it was nearly impossible for me to pull the suitcase! I looked around and was totally alone in the parking lot (MAJOR BAD PLANNING ON MY PART). I dropped off a few things to lighten the load slightly (like my winter coat – duh!) and just headed for the terminal – stopping to rest as often as I had to. By now I knew that I was going to miss that plane. I made it inside and collapsed at the baggage claim. OK – not on the floor or anything, just into the nearest chair – but I knew that I could not go any farther.

I made a desperate “911 call” to Monica – to let her know I was going to miss that flight. She stayed with me on the phone while our incredible friend, Lola called every person in the airport… I was ordered to “stay put” and they sent a WHEELCHAIR!! I asked them “couldn’t they just bring a golf cart – so I could feel important instead of helpless???”

Honestly I was very grateful to see that wonderful lady with the wheelchair.. and thankfully made the next flight to Dallas. When E picked me up… she wouldn’t even let me carry my purse!

After a day of rest, we went “wig shopping” and had a blast! Dallas has a very special shop, especially for cancer patients and they were fantastic! You may not recognize the new me!! We’ll try to post a few pics later!

Hopefully today, we go for the “cut”… something short and sassy (like Sue’s!), to allow my hair to recover in its own time. I’ll spend a couple of days having fun in big D and then head back to Houston in time for the next chemo on Wednesday. And the process goes on…

As always.. I have so many of you to thank for your concern and support – I AM BLESSED!

Special thanks to Sue, for saving me lots of money and frustration, to Laurie for walking me through my last “melt-down”, to David for the walk on the beach, to Grandma Lola for sending out the rescue squad, to Monica, E & Garrett for all the joy you bring me (oh, and for the wig!), and to Nicholas, for being “the man” in the family since he was 3!

Love to all,
Sia