Friday, November 26, 2010

Home from Thanksgiving in Oklahoma

Just got home tonight from a wonderful visit at my brother John's home in Oklahoma. Thanksgiving was wonderful and I have so much to be thankful for! Arrived back in McKinney tonight, Friday and my brother Kevin and his wife Lisa, drove from Phoenix with our other car so I would have my vehicle and clothes etc. What a blessing to have that taken care of....Thank you Kevin and Lisa. They will stay with us for dinner tommorrow and then drive all the way home to Tucson.

Jay and I will head back to Arkansas on Sunday and meet with the Dr. up there on Monday to get a diagnosis but the plan is to get back here Monday evening and begin treatment on Tuesday right here in Dallas. Hopefully we will get a consensus as to how they would approach treatment as the Institute in Arkansas is not completely covered on our insurance. I am comfortable with the Doctors who will treat me here and it is covered so that is most likely how we will move forward.

I will blog again as soon as we know for sure. Love to all and Happy Thanksgiving! Love, Susan

Saturday, November 13, 2010

Day 1 in Arkansas

We arrived at 6:30 pm on Thursday night and stayed with friends up here in Arkansas with an appointment the next day at 7:30 am. Much to our surprise, we arrived to find a fully scheduled day of tests and mtgs. Our day began at 7:30 am and ended last night at 9:36 pm. I had 32 vials of blood drawn, another bone marrow biopsy that had to be done twice since they did not locate M-Spikes in the first one which is what they need to get for the genotype which will pinpoint exactly my DNA profile and tell us what is going on. I also had an EKG, Echo-Cardiogram, and a 2 and a half hour MRI without and with contrast. Finally they did another MRI type of full body test which I can't recall the name. It was a long and grueling day and I was exhausted. We also met with nurses, insurance people etc.

I do believe that we will get a FIRM diagnosis when this is complete which will come next Thursday on my Birthday, go figure! I have no tests today, tomorrow will do a 24 hour Urine test all day and take that to the hospital on Monday morning. We have fulldays on Monday and Tuesday, nothing on Wed. unless any tests need to be repeated and will see the Dr. on Thursday for results and suggested treatment plan.

Jimmy and Jenna will drive up here on Wed. night and stay with us to go to the Dr. with us on Thursday. We are all anxious to get a better picture of what is going on and how advanced this disease is. Please continue with your prayers as I am and I will try to give you an update next week. Love to all. Susan

Sunday, November 7, 2010

Who Am I to Blog?

Each day I learn something new...
This morning I woke up crying. I had a dream and saw my son standing in a Tuxedo. There was music playing and he was looking for me to dance. I woke too soon in tears but I might have been there.... As strong as I am trying to look at this, it is never easy, nor will it ever be to think about leaving this world and everyone that we love!

I have received so many books and devotional booklets, CD's and stories and as I read them I find myself being constantly blessed to have been given the time to re-shape my own relationship with God. I am grateful to all of you who support me and realized today, once again, that there is nothing special about me or my circumstances except that I now have time to look closely at how I have lived my life. I am learning a great deal through reflection that it is a lifetime of good and bad choices that shape us.

I have constructed a good base but have a long way to go as I continue to construct my spiritual temple. Each day, I spend time talking with our Father to pay attention and accept the acts of faith that he is presenting to me.

Jay and I went to a nutritional counselor this weekend and I have some more information to investigate this week. We are waiting on the 2nd results of the Bone Marrow Biopsy done this past Friday, and will be praying that God helps us to know where our second opinion will come from. I am praying that we will be ready to move forward with treatment next week.

In the meantime, I am feeling very good, basically normal, of course that is an arbitrary thought when it comes to me and have seen the beauty in our world each and every day. May you all be blessed with the same feelings as you struggle with your all too busy lives! I am learning to be patient, to slow down and to listen to God which has been a full time job that I have not taken the time to do before. The journey continues..... Love to you all! Susan

Friday, November 5, 2010

Today's update with Dr. Bhushan

Diagnosis has been made:

OK, it is Multiple Myeloma with a twist. With my unique type of Myeloma the cancerous cells are fewer but they produce more of the RANK-L and MIP-1 chemicals which are what eat at your bones. They are hiding out, not as evident in the marrow. It's almost like they are a stronger myeloma cells so they produce more of the stuff that eats your bones but harder to locate since there are fewer of them. Dr. Bhushan did do another Bone Marrow Biopsy today in the hope of getting that last confirmation with cancer cells.

Recommendation is the same treatment as follows:
1) Chemo - Velcade to start in the hopes of reducing the bad cells
2) weekly blood tests to see the impact on my protein levels
3) If the protein levels are going down, it is working, if not combine with another type of chemo will be done until they get a regimin that works to reduce the cancer cells and prepare us for the transplant.
4) Now we are ready for the recommended Bone Marrow Transplant!
5) I will be admitted to Medical City Hospital for appx. 2 weeks.
  • Day 1 Fluids will be pumped all day long
  • Day 2 Heavy Duty Chemo (loss of hair for sure, BUMMER) Killing all of my Bone Marrow
  • Day of Rest for surgery
  • Surgery to bring back frozen, clean as possible bone marrow
  • 11-12 days in hospital for bone marrow to re-grow
  • Appx 2-3 months recovery with heavy fatique and weak immune system
After all is said and done, I should be in a state of remission/could be no remission, very good prognosis remission, near complete remission or the ultimate complete remission.

If no remission a new treatment plan is designed possibly another transplant
If very good remission possibly more chemo to decrease bad cells
If near complete or complete they watch for 18 months and if still holding I should be good to go for several years. (5-10 yrs.) Is the complete remission prognosis however as the disease re-builds in 5 - 10 years there WILL be additional treatment options and possibly a CURE!

It is all about buying time as is the case with all cancers.....

We still plan to get to Arkansas this week for a second opinion but hope to make a decision and begin treatment the following week.The week of my Birthday! Happy Birthday to me, Happy Birthday to me, Happy Birthday dear Susan, you get Chemo this week! Oh I am so funny! I love all of you and as you can see I am still a goof ball but optomistic about my future. Pray it forward and all will be good! I must keep up my stewardship with God so I am living a PURPOSE Driven life! And I will. Love and Prayers to all of you, so many affected by cancer, we all need to pray for those who are less fortunate than us! I have several I am praying for myself. I love you all...Susan

Thursday, November 4, 2010

Update: Nov. 4th

Well, we thought we knew the path of this but now that it is unsure we need to wait and see what is going on. We were going to Arkansas because the Institute for Multiple Myeloma is up there and supposedly it is the best in the world. One of my friends, friends is very connected and can get us in and is urging us to go there. His daughter was diagnosed and is now 7 years cancer free.

Until we determine that it is in fact, Multiple Myeloma, we need to wait. If there is something else going on, yes, MD Anderson might be an option for a second opinion etc. I do have a friend who know the director of MD Anderson as well. Thank God I am such a talker and have so many connections. I always knew it was all about networking.

My prayer is becomming a network as well which is where I am focused. Who knows, God may find that this has rocked my world enough that he will leave me here a little longer to spread his word! That is what I am praying for....time. I feel good and continue to have a positive attitute. I love you all and will keep you posted. Keep the prayers coming! Praying It Forward!!! Susan

Tuesday, November 2, 2010

Update Nov. 2nd Heading to Arkansas 2nd Opinion

Hello Everyone,
Last night we finally talked with Danny, a client of Shelly's and things have now changed for us. Everything seems a little more serious now and we have uped our level of concern over finding the best possible treatment.

Originally, we were happy with our care here in McKinney and ready to get started today. I had my port installed yesterday and we meet with our Dr. at 11:00. Danny helped us to realized that we have quite a fight in front of us and that the mistake commonly made is starting treatment locally only to find out that things are not as simple as they seem and other options were available.

Danny painted a picture with some painful realities that this is extremely serious and the best care which is what we should be looking for is in Arkansas. The Arkansas Institute for Multiple Myeloma deals specifically with my disease and therefore does more transplants and experimental treatments than any other facility in the world.

I am blessed that Shelly has been talking about my cancer as that is how we found Danny. His daughter was diagnosed 7 years ago and is currently cancer free. Treatment includes a tandem bone marrow transplant which will cause me to experience high fatigue, hair loss, the works but they have an 80% remission rate and when all is said and done, that is what we are ultimately working to achieve.

I continue to look at this with a strong sense of optimism and spiritual awareness that all is in God's hands. He continues to lead us in our decisions and will provide the resources we need to move forward. I have a wonderful friend, Kim, who many of you know came to Texas last year to live with me for a month and help me with the Reading adoption who has offered her home to my family as we figure this all out. I am truely blessed, once again and all is as it should be. I will continue to keep you posted.

Jay, Jimmy, Jenna and I will all head to Arkansas as soon as Danny can arrange an appt. for us. He is very connected and his daughter is on the cover of the Institutes Brochure. Can you believe it! Kim's husband also know the Director of the Institute and Danny told us that the Director will be involved personally in my treatment plan and care. WOW!!!

Love and prayers to all of you as we all need to walk with God in front of us each and every day! My thoughts and gratitude for your prayers and friendship continue to be at the top of my priority list as I Pray It Forward! Love to all. Susan

Monday, November 1, 2010

Update; Monday, Nov. 1

OK, the bone marrow biopsy was done last Thursday and this morning I will be getting a port installed in my chest for chemo and bone medicine. The plan with Dr. Rao (Texas Oncology) is to get the biopsy results to better assess my stage, she is thinking stage 3 and although pretty advanced, she has seen much worse.

We will meet with her tomorrow, Tuesday afternoon, and discuss our plan of attack. She would like to begin treatment tomorrow as well. Jay and I will discuss the Institute in Arkansas with her as well at that time. We are still wanting to get a second opinion on all of this to make sure we have the best plan in place as we know that complete remission, at least for a period of time is not only possible but happening to Myeloma patients with a high level of percentage and we want to be one of those statistics.

I have a good friend, Kim, who worked for my old job who lives in Little Rock and has offered to care for me and let me live with her should I need that. Shelly's friend, who I have yet to talk with, can get me into the Institute quickly, his daughter is on the cover of their brochure, so I am fortunate to have so many out there talking and spreading the word to help me as I make these tough decisions.

Jay is wanting the best for me and although he would be sad to have me in Arkansas, he wants to care for me, he knows that we need to do what is best and realizes that God will also provide us with the right answers in regard to this.

I will post again on Wed. to let everyone know where we are at. Love to you all and keep the prayers coming, I feel you all around me!!!! Love, Susan

A Sad Day Melanie

I had an interesting day last Wednesday as I was trying to find out where my appt. was for my mammogram I received a call from one of my bestest friends, Shelly. She has been so worried about me and was working with one of her customers and talking about me. Apparently his daughter had Multiple Myeloma and Shelly called me frantic with excitement and the need for me to talk with this man. He had told her about the Multiple Myeloma Institute in Arkansas and she was wanting me to go there for a second opinion. I told her that I would look into it but was trying to find my appt. and was lost.

A few minutes later I walked in for my appt. and ran into someone who I hadn't seen for years. She told me that another friend of mine, Sally, had mentioned me in their prayer group and was asking how I was doing. I told her that I had Multiple Myeloma and she said, "Oh my Gosh, you need to talk to Betty as she was diagnosed with that a few years ago and was doing great. She had also gone to the facility in Arkansas."

I called Shelly back after my appt. and we laughed at the irony of how much God was involved in all of this. I felt his hand on me as I drove home, talking to Jay and my son about all of this which of course was exciting but also confusing as to what our next steps would be since I was having my bone marrow biopsy the next morming. I felt like I knew what God wanted me to do and also felt a sense of control again but that was MY mistake!

Shortly after arriving home, I got a call from Sally, the friend who had mentioned me in prayer and she gave me some sad news. She told me that Melanie had died. Melanie was a girl who lived with Jay and I many years ago. She was 17 at the time, attending the ACT Academy where I worked and struggling with drugs, suicide attempts etc. After talking with her, and her parents, I offered to have her come and stay with us for awhile to try and get her back on track.

Melanie was a mess but after a short time, her life began to turn around. She lived with us for 6 months until she graduated from HS. I was so proud of her by the time she left as she had accomplished sooooo much. She was off all of her medications, doing well in school, had even enrolled in a writing class at Collin CC.

Over the years, Melanie and I stayed in touch. She had a pretty good and stable life for several years, married and had 2 children. After some marital problems, a divorce and some health issues, she was slipping into the abyss again. In the past couple of years, Melanie reached out to me several times, twice with collect calls from jail. I am very sad to say that I did not receive the charges and although I did talk to her, I did not want to see her or get involved again as my life was also very busy and I just didn't think that I had any more to give.

When I heard the news of her death, I felt so sad...I heard God immediately tell me that although I had been a good servant at one point, I had let go and turned my back on one of his lambs. (I don't talk this way!) I cried, said some prayers and attended her funeral yesterday. I learned something very important this week....People and situations are put in our path for a purpose and it is up to us to make sure that we act and do not avoid, no matter how uncomfortable or challenging that might be, on those situations for God does not give us more than we can handle and is mindful of all that we do.

I will be a better servant and will listen closely to his requests of me. Luckily, God is forgiving and has taken Melanie to a place where she will not have the pain she felt here on earth. In the meantime, I will pray for her and her children. Love to you all. Susan