May 20, 2008 - Long Time Since An Entry

A lot has happened since my last entry, some great and some that was a bit disheartening. I'm sure I won't remember it all, but I promise I'll try to update this a little more regularly.

I continue to work part-time which has been a real blessing both emotionally and financially. In addition, the company I work for is extremely understanding of my physical constraints, particularly after I have had a chemo treatment.

Speaking of chemo, I had a CT scan late February which showed slight growth of my mets, so I am no longer taking the pill form of chemo, Xeloda, which I tolderated extremely well for almost 8 months. The oncologist has put my on an extremely aggressive form of chemo called FOLFORI, along with Erbitux. If you want more information on this regimen, you can google FOLFORI and Erbitux.

I have blood work coming up tomorrow with another CT scan on Thursday. Hopefully, this new regimen has done its job, because my body is getting tired of the onslaught of these toxic drugs over such a long period of time (over 17 months now). I believe these drugs have a cumulative effect as it seems to take longer to rebound after each treatment. My hair has thinned drastically, but so far it's still MY hair. I have a wig (donated by some dear friends) ready just in case. Erbitux is also known to cause a sometimes very unsightly acne-type rash on your face. My wonderful niece, Grace, has been prayerful about my hair and this rash. She's the best niece ever! So far the rash has been confined to the insides of my arms, sometimes the insides of my legs, but it is manageable and doesn't itch too bad.

In addition, when a group of my friends at The Andersons (my old employer) heard that I would be starting up on a new chemo "cocktail" they immediately went to work in coordinating home-cooked food to be brought in after my treatments. This has been an absolute God-send, as I am tired of eating restaurant food after treatments. There's normally about enough food here to last Mike and I about a week. It's working, too, as I have been able to maintain my weight, which is pretty unusual on chemo. I went from a low weight of 111 during my last round of infusion chemo last year to 129 pounds.

I also received a phone call from a nonprofit organization about a month ago. They had heard through a dear friend that we were in desperate need of a driveway which is an understatement. Our driveway had become merely a mud hole and we have not had the funds to pay for a stone driveway due to my limited income, my medical bills, and the outrageous amount we pay for group insurance through Mike's employer! Anyhow, these men spent a Friday evening and a Saturday here, and Mike and I now have a bonafide driveway! Whenever I look at it I'm amazed. We had a few friends and family members out for a "driveway party" on that Saturday, complete with Jeff's marvelous chicken!

Let's see -- what else? Oh, I spent 5 days in Las Vegas with a friend at the end of February. Enjoying the sun and warmer temperatures at that time of year was wonderful. I got to see my nephew Tony's home (it's quite nice) and he and Rachel treated my friend and I to dinner! The car rental agency upgraded us (complimentary) to a red Mustang convertible, too, so we felt like the Golden Girls on a trip. The frosting on the cake for that trip was that the airlines also upgraded us (complimentary) to first class for the red-eye back home. This was truly a God-send as I was SO tired that night, our plane had been delayed for a couple of hours, and I do not sleep well on planes. Well, I didn't get to enjoy much of the first class service as I fell asleep as the plane was taxiing on the runway and woke up when the pilot announced that we were just about to land in Detroit! It was a nice trip.

I'm sure I've left a lot of stuff out here, but I am going to post just a couple of pictures.

Love to all! I am so thankful for those who have prayed for my healing without ceasing. I think we're almost there!

February 1, 2008 - This is Cool

Okay, due to the snowstorm that was in our forecast for today I moved my Avastin treatment to yesterday afternoon.

By the time I finished my treatment I was one of only 2 or 3 left in the chemo room. A nurse practitioner was shadowing my favorite chemo nurse yesterday and they eventually had time to chat (yesterday was a busy day up there as lots of folks had changed their appts. due to the snow forecast) Elaine and her "shadow" navigated over to my chair to chat and Elaine asked if I would share my story with the nurse practitioner about my "journey." So, I told her I had necrotizing fasciitis. When I began to show her my leg (as much as I could while wearing jeans) her eyes got huge. She asked me what hospital I was in when all of this "stuff" went on in 2006. When I told her her eyes filled with tears and she said "I was one of the nurses taking care of you in ICU. Do you remember me?" I had to say "no" (remember I was loony at the time due to ICU psychosis and tons of drugs. ) She said "do you remember anything?" I said that I didn't remember anything for the first 2-3 weeks of my stay in the hospital. She said "good, we did our job then. We didn't want you to remember the pain. It took four of us to do your dressing changes." So, we ended up sharing all that transpired then and how well I am doing now...comparatively. I got an opportunity to thank someone who had cared for me during my darkest hours. When I told her that nobody expected me to live at that time she said "you are right, we ALL thought you were going to die. You really ARE a miracle!" She was so amazed to see me walking and when I told her I was able to drive again she was shocked. She said "even after it appeared that you would live, they still thought they would have to take your leg."

Had I not moved my appointment up, it's likely I would never have seen this woman again because she works the midnight shift at the hospital. She also cared for Ronnie (the guy I spoke about last summer who died after being in a motorcycle accident on his way to church.) God does move in mysterious ways.

We had a very emotional time of sharing, thanking, and caring. Other than our conversation about Ronnie, it was a beautiful experience! She actually remembered Ronnie's wife's name and my sister (who stayed with Ronnie's family time for 5 entire days at the hospital) which is amazing because St. Vincent's is a very large hospital.

Other than the fact that I felt yucky when I got home (I even went to bed at 7:30 last night which is unheard of for me) it was a beautiful time to see a nurse who is still able to cry (and laugh) with you. She said she would never have known me as I look so different now. .

Well, I'm waiting for 8:00 so I can call my PCP to try to get a prescription for the UTI that I appeared to have picked up. The bacteria showed up on the urine culture while they were checking for protein in my urine (a normal test for folks on Avastin). I'm NOT going to the PCP's office today (it's about 18 miles for me on roads that have turned to ice) so I'll probably have to plead with him just to call in a prescription for something to treat the UTI.

I just wanted to share this with you all. It was a powerful encounter for both me AND the nurse(s). I'm sorry this is such a long entry, but it was such a heartwarming experience.

January 30, 2008

I can't believe I haven't made an entry in two months! A lot has happened since my last entry in November. I'll try to think back. First of all, we were all able to gather as a family in my home for Thanksgiving this year, something we were not able to do last year. Everybody pitched in and it was a great day. Jeff looked at my plate and said "mom, why did you take so much food?" I told hime "because I can." We all had a great time. I have inserted a picture of Julie, Grace, and Robert making our family holiday treat -- dumplings! Robert is now our official "dumpling stirrer." How proud that little grandson of mine felt being able to help prepare our Thanksgiving dinner! God bless him and everybody else who helped me that day!

Okay, it's now the beginning of December and I've decided I'm ready to drive again! However, in order to do that it was imperative for me to get a vehicle that was more reliable. I had $5,000.00 to spend on a car. I searched over the internet on autotrader.com and was more than a little discouraged at the prices of used vehicles. This was on a Sunday afternoon. Sunday evening I sent out a prayer request to my sister, Julie, and my friend, Ranae, telling them about how much I felt I needed a car. Monday I did nothing about it. Tuesday morning I was showing Mike how expensive cars are when lo and behold a car in my price ranged popped up! This car was in my price range, had relatively low mileage on it, and it even was the same kind of car, a Malibu, as the one that met its final resting place in the mountains of Colorado when I was returning from Las Vegas in July, 2006. It's almost the same color, but it's two years newer. So I emailed the salesman who responded immediately. He drove out here with the car, my brother came over to check it out mechanically, and I made the decision to buy it. The salesman mentioned that I was very "lucky" as this car had just been marked down after close of business the night before from $8000.00 to $4995.00. I then explained to him how I don't believe in luck and the prayer request that had been issued just 2 nights prior. The salesman and I drove back to the dealership (I was behind the wheel of the car) and I got a chance to witness to him about my illness, my progress, etc. He was shocked. I have inserted a picture of me getting into my new wheels for the first time BY MYSELF to meet two dear friends for breakfast. I can't even begin to explain how good that felt! Seventeen months to be chauffered around for someone like me who is kind of independent is not easy! God is good!

Fast forward to December 17th. Now I've decided I want to work part time again doing transcription from home. So I went out to the message board from the school I had graduated and asked if they knew of anybody who was interested in hiring a part time transcriptionist whose skills were very rusty! Within an hour I had a private message from another graduate of the school I went to with a lead for a transcription company in southern California. Now this was ideal because it wasn't medical transcription, but regular transcription. As I stated before, my medical transcription skills are very rusty. I sent my resume to the manager of the transcription and I heard back from her within 15 minutes! Amazing! So, now I have a part time job to supplement my disability income. It is working out very well! I'll be able to save some money, travel a little bit more, and purchase a few things. We have been so strapped financially since I became ill -- this is HUGE for me! What a morale booster, too. For someone who has been employed for 40 years to be forced to basically just sit around is not easy.

December 24th -- all of the Dorans were here to celebrate Christmas Eve, again in our home. What a terrific feeling once again to do one of the things I love to do -- family celebrations in my home! Once again, everybody brought something to eat which gave me more time to focus on cleaning and decorating my home for Christmas.

Mike and I didn't have a Christmas tree last year. I was too weak and it was too much work. Boy, did it ever look pretty this year sitting there all lit up in my living room. I actually didn't take it down until a week and a half ago. We just enjoyed looking at it so much.

December 29th -- All of the Allens are here again for Christmas. Another beautiful moment in time. We laughed, we talked, we cooked, we thanked God for all he has done for all of us. I also had a picture of my nephew, Aaron, located in a prominent position in the tree. Aaron is proudly serving our country in the Marine Corps and was not able to be with us in body this year. We missed him terribly but he was here -- in our hearts. Of course my sister Julie -- you may not know it but she can be a rascal sometimes -- kept taking pictures on her cell phone and sending them to Aaron while we were all talking to him on the phone. Aaron said that we were cruel, but Julie just kept snapping away, smiling all the while.

I guess that's just about it for now. I wish I would have at least kept notes because so much has happened over the last two months -- all good!

I am going for a CT scan on February 22nd, so if you're reading this journal, please start to send the prayers up. I have been on chemotherapy continuously since mid December 2006 and it would be so wonderful to be able to take a break, or better yet be able to stop poisoning my body forever! I told Mike the other day, I feel so good that I can't even imagine how much energy I would have if I weren't taking chemo. So all of you prayer warriors, hopefully this time it's in God's timing for my healing. Thank you so much for your continued prayers on my behalf.

I'll try to post more regularly in the future.