100 Days and Counting...

It's hard to believe, but it's already been 100+ days since my bone marrow transplant. Statistically, it's at 100 days post transplant when you see evidence of the "results" of your transplant. Since my last post, I have just continued to physically improve rapidly - no other way to explain it. I did not go through the slow gradual climb back to feeling normal that I was told normally takes from 6 months to one year; I did go through the initial "extreme tiredness" and appetite issues..but, it was like a switch was flipped and I just started "recovering" at warp speed. Looking back, it almost seems like a dream.

So, back to my point...I went in two weeks ago for my post 100 day restaging of the disease. Basically, did it work, how well did it work...Same tests I've done many times before, no surprises there. And yes, the test I love to hate...the bone marrow biopsy; but, even though I loathe this test (see past blog for reference), I was almost excited to do it, because I know it's the pudding wherein lies the "proof". Because of my last "painful" experience, they decided to add another drug to the one they had been using. I was still nervous, but pressed on. Hello, Ativan...my new friend. Neither of the sedation drugs they gave me had worked well independantly, but, apparently they have a synergestic effect when used in combination...and finally, I get to experience what I've heard other people say. I felt no pain, time felt like it flew by, and boom, we were done. Now, I do not recall how I got down the hallway to the "recovery recliner" area, but the next thing I know I've got cookies and juice, and I'm still a happy camper. Ya-hoo. The following week (which would be last week) I went back in to get a consult/results from my doctor. She walked in the room and said, "well, we got the best response possible from the transplant.' We went over my test results, and I am continuing to recover way ahead of schedule.

So, two objectives here - for my immune system to recover as quickly as possible and for suppression of disease. My other tests revealed all normal ranges, but the main evidence is in the marrow. For the first time in 7 years there "is no evidence of morphologic cellular activity" - put plainly, No evidence of any type of cancer. I am in a complete remission. I know I havn't felt this good/normal in a long, long time. I have come close on a few occasions, but was still dealing with drug side effects that hinder your overall feeling of wellness. There is still one more test to complete the package. It's a regular too, I just ran out of time on testing day, and this one takes a few hours. It's a harmless, non-invasive PET scan. I can no longer do MRI's because of the hardware in my back, but this is the next best thing. I drink radioactive "sugar" and take a nap while it circulates through my system. Since cancer cells love sugar, any tumors would automatically absorb the solution and then they show up on the pictures. Since last January the disease managed to hide pretty well, we have to cover all our bases. However, the bone marrow results last spring also showed 40% of my cells were cancerous, while this recent one showed no evidence of plasma cells.

I'm not going to tell you statistics on Myeloma in auto-transplant patients, or the odds the disease will "return". I know it's hard for some people to believe, but I really don't sit around and think about myself in relation to this disease. When that happens, it feels like the disease is getting the attention or glory. It's only purpose in my life, is in revealing how faithful and powerful God is and the many things He has done through this experience to work everything for my good. This test has helped equip me to be a better "fighter" and to understand that the enemy looks for any opportunity to take our focus off the real fight down here. It's easy to let something like a terminal disease consume your thoughts and actions, and I would have to say that's been one of my biggest lessons. It isn't about me..even when it seems like it is, it isn't. If I would have waited until I felt perfect to live my life, I would have missed out on a lot of stuff....birthday parties, baby showers, graduations, family holiday celebrations, working with some of the best people I have ever met at AM Design, the joy of helping with my precious grandson, and too many other events to even mention. God has taught me to live right now, good or bad...do it now. (the people at Nike got that one right, "Just do it")

Paul didn't allow the thorn in his flesh to move him from the goal..he kept pressing onward. Adversity not only builds spritual muscles and fortitude, but,it can actually sharpen your focus and teach you to discern between real problems, vs excuses. Most of all ,I know every day is a gift from God. There are no guarantees of tomorrow down here, and having to face that reality by walking through the valley of the shadow has taught me to live everyday to the fullest no matter how I may "feel" in the body. Also, that prayer is our most effective weapon, and we are encouraged to keep on praying for all the saints. Prayer is our ability to unite the supernatural with the natural...we are Gods mighty "conductors" of His amazing power...lets call heaven's power to work so His will can be done on earth as it is in heaven.

Please continue to agree in prayer for God to be glorified through my healing; specifically, pray for restoration of my bones. They have been affected over the years and I have so many bone lesions they are innumerable according to pathology reports. They are most evident throughout my skull, spinal cord, ribs, and hips.
I believe all things are possible with God. Thank you, thank you for standing with me....and for the power of your prayers.

I Can Do All Things With Christ...

I hardly know where to start. That's partly because I've allowed too many days to pass since my last update, and in my world, a LOT has happened. I was released from the hospital on June 3rd, only 2 1/2 weeks after being admitted for the transplant. The normal stay for a bone marrow transplant is 3-4 weeks. Longer if you contract infections, reject the transplant etc...I was still throwing up and very weak when they released me. But, the wise doctor realized that I needed "a change of scenery". So glad he realized that..saved me the trouble of having to devise an escape plan:)

I don't want to focus too much on "what I've been through", but on what God did to reveal His protection and envolvement through this storm...still. God has started using my story in the most random ways to encourage people I have never met - that's what He's best at. One of my daughters was shopping this week and the store owner started telling her about her friend being treated for stage 4 cancer She has been given no hope and treated insensitively by her doctors (been there..) My daughter wasn't even going to mention me, but realized she needed encouragement for her friend and gave her a quick summary and a link to this blog.

There are all types of storms we "weather" down here in this life - death of someone we love, health crises, losing a job, waiting for the right person to share our life with...the list is endless.

The difference in how we make it through the storm is, who's walking with you? When my storm started 7 years ago, I didn't have much hope. Doctors told me I only had a 40% chance of surviving my surgery, and yet, I would be paralyzed without it; the average survival rate of someone with mulitple myeloma was 9 months without treatment, and 1-3 years with treatment. I was told by one doctor, it wasn't important how I got the disease, I could just ask Jesus when I got to heaven...ahhhh, the lack of "bedside manner" is staggering at times. The point is, I had a relationship with Jesus and hearing those hopeless words was still earth shattering. So God started to bring people into my life to encourage me, build my faith, and reveal His perfect will. I've learned quite well how desperate the enemy is to try and get us to "agree" with his "suggestions". Unfortunately, there are many people he uses to weave his lies and it looks like common sense, or simple truth. God is the source of all wisdom and knowledge and His truth goes beyond statistics, and science. The best illustration God used to keep this central truth rooted in me when it gets rough, is when Peter stepped out of the boat (comfort zone) and onto the water to walk to Jesus (Matthew 14:22-34). The waves that started crashing were real (don't deny the crises, the enemy will try to use that gameplan to defeat you, too), Jesus just said, "why did you doubt?" ie: keep your eyes on me. It seems so simple in theory, but it's so easy to lose that focus, and then you are going swimming. The good news is, even when we are weak, God's strength is perfected. He will pull you up out of the water and put your feet back on solid ground- just cry out to Him; He will do the rest.

Everytime the enemy has tried to push me down and discourage me and whisper his lies, Jesus comes to the rescue and reveals His truth. So, if you are going through a trial or storm, take heart, the one who created you, is the author and finisher of your life. One of God's promises to us is in Jeremiah 29:11, "For I know the plans I have for you declares the Lord, plans to prosper you and NOT to harm you, plans to give you HOPE and a future." The Bible confirms to us that God is the same yesterday, today, and forever, unlike we humans who waver and change our mind.

Here are just some of the miracles God had done since my bone marrow transplant:

• My white cells started regenerating at a rate the doctors don't typically see - I was in "recovery" after just a few days


• I only needed one bag of blood for transfusion - again, my cells were regenerating rapidly


• The nurses told me that I was the only patient in the transplant unit who didn't lose all of my hair,eyebrows, an eyelashes


• I never had to wear a mask in the hospital or when I was dismissed (many transplant patients wear these for weeks until their cell counts return)


• I returned to work 5 days after being released (mostly worked from home, but I went in everyday to get paperwork, work a couple of hours) - A case worker called me yesterday to find out if I thought I could return to work soon...haha. She almost fell out of her chair when I told her I already did 5 weeks ago.


• My appetite completely returned after two weeks and I can smell and taste everything!! Strong Chemo drugs prevent many people from smelling or tasting food, indefinitely


• My strength is awesome. I was told it takes 6 months to 1 year for your full strength to return - I'm at about 85% in just a few weeks - AMAZING


• My kidneys which were almost in total failure 2 years ago this September, have been restored to full functioning.


• My lab report from the Mayo clinic for a very specific Myeloma marker test, said "No evidence of M-spike found". That's the first time since my diagnosis 6 years ago, that I have seen those words written on my test results

These are just some of the miraculous things God has done to show how faithful and great He is.

I have had some really low moments throughout this journey, but God has walked with me through each valley all the way to the mountaintop, and He will do the same for you - He loves you.

Preparing to Climb the Hill

I am so thankful that I was able to spend Mother's Day with my children and parents the week before beginning my transplant procedure, not to mention a powerful Encounter service at our church that same night we attended with the company of dear friends. The following morning, my sister drove up from Corpus Christi to, once again, walk with me through another stage of this journey. We loaded up the trusty Durango for yet another trip to UT Southwestern campus - this time at the Zale Lipshy Hospital on the 7th floor to the Bone Marrow Transplant unit. I was totally at peace and ready to get this thing done once and for all.
Monday May 18 - first half treatment of Melphalon (hard chemo) -smooth and easy
Tuesday May 19 - second half of Melphalon - still smooth.
Wednesday/Thursday - days off to process chemo - starting to get nauseous and lose appetite.
Friday - Carter blood center brings over my stored stem cells, thaws them; gives me 50 mg benadryl to help reduce side-efects. The whole procedure only took about 15 minutes...and I slept through it with all that Benadryl. That's about all I remember about Friday, except my sister telling me later that day she had to head back home to Corpus Christi.

Now, let the games begin. I was extremely nauseaus and out of it on Saturday. I could barely function enough to get to the restroom. My mom brought me homemade soup and I couldn't eat a single bite or pretty much even think about food. Just the sounds of their voices made me want to disappear. My body was under attack in every way. The nausea was debilitating and finally the nurses saw my suffering and began offering some relief. I took it, and some helped and some did not. My first thought was, dear God, how long am I gonna be in this timewarp - this is quite literally hell. Sunday wasn't much better. Most of my mornings begin with me hanging over the railing of my bed and puking into a pail or at the least gagging up volumes of mucosis. Then the daily routine of drawing my labs and weighing my big behind. So far, I've lost about 10 lbs, which is right on schedule, since I gained about 20 on those steroids earlier in the year. I have been struggling to take one day at a time and to stay close to the Father's side. He has turned my despair to hope each time I thought I couldn't make it another day. This week my red, white and platelet cells began plummeting as expected from the chemo -So next step is a blood transfusion. I was pretty nauseous but felt revitalized the following day. This morning my doctor checked my mouth and said "Poor baby...you have soars all in your mouth and espophogus." So, I have a special mouth wash to help control spreading, and a numbing gargle so I can swallow liquids, and now my favorite narcotic -Dilutid to help control the pain overall- ha. It feels like I have strep throat, and like I've had my tonsils removed, and my espophogus is completely out of control. Anything I try to swallow (even water) usually stops dead and it sends it back up. This has been the single greatest obstical other than the nausea. I literaly lay in bed and fantasize about all the drinks I'm gonna scarf down when this heals . It's funny how I am sitting in the middle of one the best known cities in the world, where you can get the best eating or drinking anywhere, and I would kill to guzzle a cold glass of water. The Lord used that relevatory moment to make a point over something I have been burdened for for quite some time. My gosh, are we (me) lavishing upon ourselves uncessary treasures, and ignoring the plea of Jesus to give a cup on cold water in His name? Not trying to convert anyone, but God has burdened some members of my family and particularly me these past few years to reach out to the least of these...and I can now relate to their pain and suffering on a much deeper level. http://www.lifetoday.org/site/PageServer
I complain because I have had some rough "days", but these precious children go to bed and wake up to the same reality and pain day after day. Thank you God for opening my blind eyes to the much bigger picture (one of many you have shown me throughout this journey) and thank you for letting us be your hands and feet.

Well, dear friends and family, I will get another platelet transfusion tommorrow which will help get my counts back up. That's really the name of the game...I get to leave when my white cells, redcells , and platelets get in the "preferred"range. They are on the move....Pray my cells would mulitiply exponentially an my stem cells would engraft speadily. My hope is to be out of here by next Tuesday or Wednesday. I have been in pretty much total isolation and my dear children rotate their time time between their jobs to stay with me night and day and offer comfort.- I am truly blessed. We've tried to conserve Tony's time off for when I come home from the hospital.

Thank you all for your prayers - please pray specifically for all cell counts to rise up quickly. This will assist my mouth and esophogus to heal at a quicker rate..

Also, pray that these hard drugs killed all the myeloma. We can tell from early tests that my kidneys are back to improving again. I am just a few points away from being normal. And also pray for God to bless the wonderful team of doctors, nurses, technicians, assistants, nutritionists, wonderful housekeeping people; they are all invested in caring for me and all the other patients way above and beyond a vocation- It is obvious these ladies and gentlemen have been "called" to their position to serve others.- Most of all, I Praise you God for your faithfulness to me .This has been a tough one, but, as usual, you never left my side or abandoned me. I pray that any mention of Praise or glory is all yours - the Great Physician, and author and finisher of my life.

Preparing to Climb the Hill

Spending time with the ones I love before making that final climb.

Mission Accomplished

Last week I went in on Tuesday for stem cell collection. The shots they had been giving me, did the trick. My numbers were so high, my doctor told me they should be able to get their quota of 10 million cells in half the normal time. Three and a half hours later they had 22 million cells. I had already agreed that any excess they collected I would donate to the university for research.
This was painless, and once again, other than the tingling sensation, I had none of the typical side effects. Women in particular have harder side effects from this procedure because of the calcium loss from the bones when the stem cells are released. My cells have been stored until my transplant. We are moving very quickly due to the aggressive behavior of the disease - I am going into the hospital next Monday and will get half of the normal chemo dose that morning. Because my kidney function is reduced, they modify my meds...on Tuesday, I will get the second half of the dose. The next two days will be rest days and Friday, I will be given back my stem cells - the transplant. The cells instictively know to go back into my bone marrow and will re-engraft over the next 10-14 days. Looking back over the last 5 months, it seems surreal that I'm already here. I am ready to go, no fear - just peace.

Lastly, my hair started falling out by the thousands last Wednesday. When red cells are lowered dramatically over a period of time, the hair follicle is denied oxygen, and falls out - by-product of the chemo 3 weeks ago. This is traumatic for most women - Demi lied, we don't want to be G.I. Jane...I struggled with this thought for a long time (years), but after the first couple of days, God said, "face your fear, my strength is sufficient." So, I chopped it off short, and will enjoy my remaining strands for the next few days; then I'll do what every little girl dreams of doing - start playing with wigs. I thank God for revealing childhood fears which the enemy used to set up "strongholds" in my mind and control my actions as an adult. It's ironic, because this whole "adventure" started as a result of my hair. The doctors couldn't figure out how I got Multiple Myeloma, since it is related to occupations involving dyes and chemicals. It is also a disease that typically affects black males between the ages of 60 - 65. Though the demographic is changing - I am the second youngest patient my doctor has ever treated. Long story short - it was the brown/black hair dyes I had been using for the last 12 years on a regular basis. Tell anyone you know who regularly comes into contact with dyes (tatoos, hair dyes, print chemicals, etc) to stop using them.

I am enjoying my break from "procedures and treatments" until next Monday, and thank everyone reading this who passes on my story and deeply appreciate your kind thoughts and prayers to the father on my behalf.

The Next Chapter

When It Started
Last December the week before Christmas, I got strep throat. One week after taking anti-biotics I had a full recovery, but started having bone crushing pains in my head. I knew they weren’t headaches or migraines, but I had been totally stable since completing my radiation back in October. In fact, bone in my spine was starting to grow back – yes, a miracle. My kidneys had also continued to improve – another miracle since I hadn’t had any treatment that would impact that since last April. Yet, I had this pain that made it difficult to even move my head without sending off shockwaves of mind numbing pain.
I emailed my doctor, and she wasn’t alarmed. And so it began…My next symptom was numbness in my left chin area. I headed for the dentist. After several visits to dentists, oral surgeons, and back to my regular haunt at the Bone Marrow Transplant clinic at UT Southwestern…nothing was really impressive until the tumors in my mouth and forehead started popping up. I began the same treatment I did a year ago which had put the disease in a full remission. My doctor told me, don’t worry, the drug will work again. Well….it did and it didn’t. Multiple Myeloma is a sneaky little disease. If it comes back (and statistically it often does) it gets real clever and tries to hide better. Praise God for the plasmacytomas (blood tumors) which "outed" the disease progression. Some of the tumors started shrinking and completely went away immediately from the steroids (and I got a lovely “pumpkin” shaped face as a parting gift). But, the tumors in my mouth were slow going and went away only after a few rounds of the Velcade. I did 8 weeks of Velcade (the latest and smartest biological therapy used against Myeloma). However, a couple of weeks after stopping therapy, the tumors in my mouth came right back. If I had done more Velcade it may have gotten to the root of those tumors, but the purpose of doing Velcade at all, was to slow down the disease and decrease it in preparation for a bone marrow transplant. Ahhh, the words I have been running from for the last 6 years – Bone Marrow Transplant. God already met with me back in January while the doctors were trying to determine what was going on again…I remember telling Him in utter frustration and being at the end of me,"I can’t do this anymore”. He said, “I know…you about ready to go cut the head off this beast?” “Yeah….I’m ready”. I already knew in December when the “head aches” started, it was time.


Testing, Testing
So, after completing the Velcade they ran a series of tests to determine how much good it did. Again, almost all my results looked good and stable except for the one irrefutable test where the disease cannot hide. This is the one “procedure” I will tell you about. It is horrible. I had it performed two other times, and the IV drug they gave dulled the pain down to “pressure” which was bearable. In fact, I was very talkative during the procedure which only takes about 30 minutes. This time, it was quite different. The drug didn’t work and I felt the 6 inch hollow point needles going in and coming out. They lay you face down on a hard bed and according to my daughter Natalie, they “get on top of you” and use all their body weight to “drill” the needle into your hip bone (where over 90% of your bone marrow is stored) then they “pop” out your bone and bone marrow. I started coming off the table and moaning and crying. They tried to give me more drugs, but this is a time sensitive test and there was not enough time for it to take effect – they had to continue. My daughter said it was so brutal she had to look away. I just know it’s a pain unlike any I have experienced. So, anyway, the results of my bone marrow biopsy revealed that 40% of my cells were plasma/Myeloma – not what the doctors are looking for. Another test called a PET scan revealed more tumors on my spine my hip and somewhere in the sinus region. However, all my other “qualifying” tests on lungs, heart, etc..came back fine – You have to be sound enough to undergo the BMT.

I Come With Attachments
The next phase was to install (yes, install) a Neostar in my chest. (This is the catheter they use to get your bone marrow out of you through your blood stream.) I did it as an outpatient and went to work afterwards (no one told me I was supposed to go home). Anyway, I felt fine, just a little tired. A surgeon does this procedure, while you are awake – but no pain, only a little pressure. They make an incision above the collar bone, and thread a large catheter into your chest through a large vein which ends up in the heart valve. 3 catheters branch out of your chest. ( I look like that thing off Predator)
I was the most nervous about this than any other procedure (except the bone marrow biopsy) but, let me testify that that’s when He(Jesus) showed up. I can’t speak of what He did for me just yet to bring comfort; but He let me know He’s with me in this battle, every step of the way. He is faithful and true and He is with me in the valley as always.

The next day I had to go into the hospital for one day while they administered the first chemo called cytoxin….just let that simmer a moment. They stressed to me over and over how this drug must be flushed out immediately. If it sits in the bladder it causes internal bleeding. Well, I had no nausea, no pain, and 3 days later the tumors in my mouth once again disappeared- Praise You God. My high priest went before me again and held up a banner. “No weapon forged against me by the enemy shall prosper”. The “Word” has come to life in me.


The day after that (you don’t get much rest once you start this process) they started my Neupogen injections. I get double doses (two injections), every day, 7 days a week. I’ve had them in my arms, stomach and now legs; 20 shots including today. These shots help your body create massive amounts of stem cells in the marrow. Today (Monday, May 4) they ran labs to see if I’m ready to start collecting stem cells. They called after I left the office to let me know I’m ready. So tomorrow will be another new experience. They will hook me up to an Apheresis machine which will pump my blood and stem cells (which have been released into my blood stream by the shots) and divide the stem cells out and return my blood to me through another tube in my chest. They have to collect 10 million cells – enough for two transplants. They think they can do it all tomorrow. Otherwise, I have to keep coming back until they get enough. The process takes about 6 hours.

After this, I will get a little break just to recover. My red and white cells and platelets are really low- which they are supposed to be, but it affects your energy. The next phase will take me back to the hospital for approximately 3 weeks. They will administer the final chemo – Melphalon – which is designed to bring me to zero immune system-basically, kill everything; good and bad. Then, they will “rescue” me with my own stem cells – and that is the transplant.

To God Be All the Glory
Whew…that’s a lot of info, I know. The funny part, it’s only about half of what has gone on these past four months…but, it’s enough. God has shown me and taught me so much on how to fight this battle we are all engaged in on some level down here on planet earth. "The weapons of our warfare are not flesh and blood but they are mighty before God for the bringing down of strongholds." 2 Corinthians 10:4. I want to encourage everyone that regardless of what storm you are going through, the same Jesus who called Peter out of the boat and gave Him the power to walk on top of the waves, still walks with us today and empowers us even more. He’s going with me into the fire, not sending me in alone, and I know my God is able to do exceedingly abundantly more than anything I could ask or imagine- He already has. He’s the only reason I’m not afraid anymore. I can look the enemy straight in the eye (figuratively) and rebuke him through scripture – greater is He that is in me than he that is in the world. Satan, you don’t scare me anymore – perfect love has cast out all fear. The same Jesus that bought me with a mighty price is here to raise up a standard when the enemy comes in like a flood. I walk by faith and not by sight.; and what I see now is a disease…but, what I’m walking towards is what is unseen – my deliverance. Be strong in the Lord and in His mighty power, He sees you and cares for you more than you can comprehend.

Thank you all for caring, and for your prayers. Pray for me that I will pass the test I’ve been given and that God will be glorified above all.