Hopewell Cancer Support Center

I have recently discovered Hopewell Cancer Support Center, a beautiful facility located on Falls Road. It offers programs and workshops for people who have cancer or are recovering from cancer, and their caregivers. This week I signed up for Mindfulness Meditation, a worthwhile endeavor indeed. Mindfulness Meditation is learning to experience life fully as it unfolds, at that moment. I don't mean escaping or just skipping it, I mean learning to have an experience without automatically reacting. It's taking the time to think about what just transpired and perhaps making another choice. What a gratifying experience. I look forward to the next time we meet. It also was nice being around other men and women who are in the same boat. While none of them have leukemia, the root of our bond lies in the fact that we are all members of an exclusive club - the cancer club. During the session many of us shared our fears and sources of stress, validating many of my feelings. It was comforting to look around the room and see others who look just like me, bald, tired, cold, thin. Although my body is on it's way to a healthy state, I am just now realizing that some emotional issues still linger. While my friends and family have rallied 'round, only someone who has had cancer can truly understand.

Hopewell offers yoga, stretching and toning classes and group discussions among other things. I am very impressed with their programs. As an added bonus, it's all free. If you know anyone with cancer, please recommend Hopewell. Their website is http://www.hopewellcancersupport.org/.

Five and DONE!

I am happy to report that I had my last Lumbar Puncture with chemo injection this past Wednesday. Sweet! Five pre-BMT and five-post BMT - enough is enough already. They always make me feel a little loopy for days afterward and I found out that it takes a full 3-4 weeks for the effects of the chemo to wear off. Good to know since I have been fretting about why I am off-balance, tripping over my own feet and unable to concentrate. I sometimes go into a store by myself and get so overwhelmed that I have to leave. But the good news - all of my results indicate that there is no cancer in my spine or brain. The other good news is that my last bone marrow biopsy (Oct. 14th) indicates that I am still 100% donor, so it sounds like I have met and passed another major milestone. My next oncologist appointment is Nov. 19th and then again on Dec. 3rd.

For all intents and purposes, my life is slowly but surely getting back to normal. Well, at least what is normal for me now. My hair is growing-dark in spots and gray in spots, and very unruly. I've spent a small fortune on hats because I'm always cold and wonder what it will be like when winter actually arrives. I wear long under ware everyday. I go to bed early and sleep about 8-10 hours a night - that is if I don't have insomnia. My fingernails are rutted and off-hue. I love spending time with my friends and family. Every minute is precious. I can wear contact lenses for short periods, but shouldn't bother to get my eyes checked or new glasses for another 6 months. My vision is sometimes blurry. I worry my leukemia is going to come back. My facial skin has a mind of it's own! I can go to the dentist, but take 2000 mg of Amoxicillin 1 hour before each appointment. I am very calm. I am still taking that foul tasting, very expensive antibiotic, Mepron. I get tired a lot. I have a lot of stomach discomfort. My skin is flabby from no exercise. I have lost lots of weight. I'm down 2 sizes now. My boobs have disappeared. I'm worried that my organs won't be able to stand up to the challenges of chemo. I hate wearing a wig. I've given up alcohol for the most part, but treat myself occasionally to a glass of wine. Coffee, tea and club soda are my new best friends. Damn! I have no strength and find carrying stuff difficult. I shouldn't hug people like I do - it's flu season. I've stopped going to Ravens games. My finger tips go numb. It takes me twice as long to do anything. My chemo tan is fading. Oh, did I mention I get tired a lot? I can now take one aspirin if I get a headache. I don't sweat anymore. I'll be able to color my hair after 1 year. I am grateful everyday.

Can't Believe It's October Already!

Wow! Where did September and the first 12 days of October go?

The last few weeks, while busy, have been good in regard to how I'm feeling. I have been enjoying my renewed energy level and my good health and am probably pushing things a little too hard. While all that is wonderful news, I still must exercise extreme caution - cold and flu season is upon us afterall. On my last oncology appointment on Oct. 1st I was given a flu shot and told there is no guarantee it would work, but it certainly won't hurt to have it either. I may or may not be given the H1N1 shot. Dr. Carraway is very happy with my progress. My next oncology appointment is Oct. 23rd.

This week I'll get Lumbar Puncture #3 and a bone marrow biopsy. The biopsy, along with some extensive blood work, is part of my 6-month post-bone marrow transplant which is actually Nov. 26th. I have a lot to be thankful for this Thanksgiving, that's for sure! My last two LPs are Oct. 21st and 28th.

My hair is still trying to find its proper place and my chemo tan (in hidden cracks and crevices) is beginning to fade. I am attempting to do some walking to build up muscle tone (of which I have absolutely none right now) and am working on getting my facial skin back to normal. The chemo, the meds, the weight lose, and the transplant have left my body in complete disarray! No part of me knows quite how it is supposed to "act". I have this mental image of one body part talking to it's neighboring body part saying, "Well, we managed to survive, but how the hell do we get back to normal?"

We're Back!

We're back from our trip and although it was wonderful spending time with Ray and not thinking about my disease so much, I'm glad to be back home sleeping in my own bed.

My hair growth seems to have taken on a life of it's own. It often reminds me of a man's straggly beard, with each tiny strand sticking out every which way. If it wasn't so daggone unattractive, it would be funny! Same with my eyebrows. I need a trip to the beauty salon.

My next oncology appointment is October 1st. I am looking forward to seeing Dr. Carraway since she is back from maternity leave. She will probably schedule my 3rd Lumbar Puncture for the same day.

I am feeling fantastic and am so grateful to be able to say that. I ran into some friends this afternoon whom I hadn't seen for quite some time and who were unaware of my diagnosis. As I was relaying to them all that had happened, I was reminded how incredibly blessed I am. I, or possibly Ray alone, could easily be telling a much different story. Instead, my story is full of hope and plans for the future. I'm grateful for the moments, those little reminders, of what could have been - it keeps things in perspective.

Still Traveling

Ray and I are still traveling and having a great time. The weather has really cooperated and we've settled into this perfect rhythm even though we're in a different motel every night. I'm getting lots of rest (we're not rocking out the town by any means) and usually take a cat nap in the car each day so all in all the trip has been relaxing and calm. We went to Mackinac Island today which required a ferry boat trip and lots of walking, but I did just fine although tonight I am beat and will be in bed early. At least Ray has Monday night football to keep him company.

Getting Better and Having Fun

Last week was Lumbar Puncture #2 and yet another "position". This time Dan (the Physician's Assistant) had me lay on my side and pull my knees up to my chest as high as I could, i.e., the fetal position. It was very comfortable. He said I must be a real veteran when I didn't even flinch. After 7 of them I guess I am a veteran. My next appointment with my Oncologist is Oct. 1st.

I am feeling really good and have been given permission to join Ray for a 2-week business/pleasure road trip. We are in Pittsburgh as of this writing and will continue to Ohio, Indiana, Illinois, Iowa and Nebraska (just the northern borders). That's the business part. The pleasure part comes when we head north through Wisconsin and Minnesota to Canada (Thunder Bay), then back to the US to Michigan (Mackinaw and the Upper Pennisula) and then back to Canada and Niagra Falls and home through Buffalo, etc. I am very excited to see it all as I've never been to that part of the country or to Niagra Falls which has been on my bucket list for a long, long time. We'll also see 3 or 4 of the Great Lakes - awesome!

I was kinda surprised that I was allowed to leave for 2 weeks, but the docs and nurses at Hopkins believe that a big part of the healing process is allowing their patients to have fun and get back to doing normal activities as soon as possible. I agree with that philosophy. People need other people and things that bring them joy, to be out among the living and get involved in life again instead of worrying about their disease. Of course I have to be careful and use caution when necessary - we are afterall, entering the flu season. See ya soon!

Day 100 Approaches

Tomorrow will be Day 100 post-BMT. I can hardly believe so much time has passed and so much "stuff" has transpired. It's truly been an amazing journey thus far and I'm happy to report that I am feeling really, really good. It's as though the Leukemia gods have finally accepted the fact that nothings going to break my stride and have released me from my suffering.

This past weekend was fantastic. I spent some good quality time with loving family and friends - we all know that can never hurt the healing. Tomorrow I visit the Doctor for a routine appointment and then nothing until next Thursday, the 10th, when I get my 2nd Lumbar Puncture. The fluid retention issue is under control and I can get my shorts buttoned again - as a matter of fact, they're down right baggy! So things are looking up - I'm feeling stronger every day and my new-found activity has slowly helped me to rebuild some of my lost muscle tone.

Lumbar Puncture #1

I had my 1st of 5 Lumbar Punctures with Chemo Injection yesterday and I must say, things are handled very differently post-BMT!

Before my bone marrow transplant I was given something to relax me, then I was taken by guerny down to Neuro-Radiology and put on a tilting table to make needle entry more precise. This was all done with Radiographs so the doc could see exactly where to insert that very long needle they use - not too far so that he would hit a nerve and not too little so that he wouldn't be able to get enough spinal fluid. Yesterday, my LP was done in a small room where I sat on the side of the bed and leaned over a bedside table with no drugs (only topical) and no guerny. I was left to rest for one hour in a freezing cold room with only a thin sheet. Wow, what a difference a bone marrow transplant makes! I came right home and laid in bed on my back for about 8 hours - don't want no stinkin' spinal headache! Really though, it wasn't so bad and was over before I knew it. I don't anticipate that any cancer will be found in my spine or brain. Only 4 more to go. My next one is Sept. 10th.

I am feeling pretty good today, which is always nice at the start of a weekend. My fluid retention problem is still around, but is much better. My nausea is at bay. Things are looking up!

Fluid Retention

I had a week of feeling pretty good and suddenly I'm descending backwards into the abyss of fatigue, diarrhea and nausea yet again. But, have no fear, my CMV counts are undetectable so at least I don't have to deal with that again. Instead Dr. Pratz thinks it might be from my more recent fluid retention. By days end my ankles and legs are so swollen that it's uncomfortable to walk or even touch them or bend my knees. So I'm now on a diuretic, Hydrochlorothiazide, that hopefully will give me some relief and alleviate my discomfort. I can handle a lot, but that nausea thing, well, that one really does me in.

On the good news side, I am completely off Digoxin (atrial fib medication) and only on a half dose of my beta blocker - at least for the time being. Other good news is that my hair is starting to grow back - legs, forearms, head. As my grandson Nicholas says, "Grandmom, you have a fuzzy head". Although my appetite is not too good I can barely get my shorts fastened - probably from fluid retention. Will this teeter-tooter ever stop going up and down, up and down?

Just to let you know - I have been officially terminated from Towson University. While it was handled very unprofessionally and with little sensitivity, it's really for the best. I am no more ready or able to go back to work than I was 3 months ago. Another chapter closes!

Disappointments

Today is Day 87 and I am feeling pretty good. I had my Hickman Catheter removed this morning (OUCH!), and am glad it's gone. While it served its purpose well, the daily burden of caring for it was turning into a job. Now that I am only getting my blood draws every two weeks, I think I can tolerate getting stuck. I see my oncologist this afternoon - that's another post.

Now to my disappointments. My 13-month old granddaughter, Julia, got her MMR (measles, mumps and rubella) vaccine as well as her chickenpox vaccine this week. Because they are live vaccines (vaccines that contain a small amount of the virus in order to stimulate the body's immunce system to recognize it as foreign, destroy it, and "remember" it, so that the immune system can easily recognize and destroy it if encountered later), I am not allowed to be around her for a month - that includes even being in the same house because of something called "shedding" that takes place. Shedding is when the live virus that is injected via vaccine, moves through her adorable little body and comes back out in the feces, droplets from the nose, or saliva from the mouth. Anyone who is around her could potentially contract the disease, but because I am immune suppressed and no longer immunized, I could easily get the virus. All of my childhood immunizations were killed when my bone marrow was killed by the chemo that I got while in the hospital. I know what you're thinking, "why doesn't Brad's marrow and his immunizations cover Bev"? Well, I'm not quite sure why, I just know that it doesn't work that way. I'll be getting my own childhood immunizations at one year post-BMT. This disappointment is harder to endure than some of my treatments were!

My second disappointment this week - I think I've been fired, let go, laid off, whatever, from my job at Towson University. Guess they got tired of waiting for me. Of course, this is not official, but from e-mails and phone conversations (or lack of), I'm pretty sure it's enevitable. I'll let you know.

So you see, having a serious illness is not just about being sick and getting better and all the treatment and side effects that come in between. It's also about disappointment, stress, anger, sadness, resentment, disenchantment, frustration..........need I continue?

Moving Forward

Today is Day 83 and I can honestly say I feel pretty good. The CMV is completely gone as of my last blood test - I'll be tested again on Friday. I finish up the CMV medication today so I'll be glad to no longer have to deal with those side effects.

I met with Dr. Pratz on Friday and really like him. He is concerned however about the degree of fatigue that I'm experiencing and began to look at some of my medications as the source. While fatigue is very normal for 6 months to 1 year post-BMT, my fatigue seems extreme. He suggested that the beta blocker I'm taking for atrial fib might be the culprit so he reduced my dosage by 1/2. Beta blockers slow your heart rate down, drop your blood pressure and can even cause depression. Twenty-four hours later I am feeling more energetic and have not experienced any palpitations or other heart related complications. If this continues he might discontinue the beta blocker all together and then look at the Digoxin I am also taking for atrial fib. Since I probably had leukemia (and didn't know it) when I was diagnosed with atrial fib (in Oct. 2008) there is a possibility that it was the leukemia and not atrial fib that was causing my palpitations and rapid and skipped heart beats. Time will tell. I see Dr. Pratz again next Friday and then every two weeks after that.

As I mentioned in an earlier post, I have to get 5 more Lumbar Punctures with chemo injection. My first one is scheduled for August 27th. Naturally I am not looking forward to being stuck in the back with a very large needle and no anesthesia, but it's part of the JHH Protocol for someone who had my type of leukemia. God forbid there be a rogue cell in my spine or brain that's left undetected!

I was telling some friends his past weekend that it is just now sinking in how close to death I actually came. In the past you may have noticed that I rarely use the word "cancer" when I write or talk about my condition - it's painful and scary and very, very hard to think in those terms. Instead I use the word "leukemia" because to me it sounds much less threatening. Call it denial, call it unrealistic, I don't care - that thinking got me through this far and that's all I really care about right now. I feel like I'm finally starting to turn the corner (again!). I guess there will be a lots of peaks and valleys along the way, but I remain optimistic and excited about living a fuller, more fulfilling life.

Some of you may have heard me lovingly refer to my inabilitiy to focus on words and forgetfulness to my "chemo brain". Follow this link (you may have to cut and paste) to see that it really does exist!
http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&scp=1&sq=lymphoma&st=cse

Finally!

Today is Day 76 post-BMT! I can't believe I've made it this far particularly after the last several weeks I've spent in pure misery 95% of the time. Sorry I haven't written more, but to tell you the truth, any of the time I spent at home was spent resting. The CMV Virus really took it's toll on me, but I feel like it's finally in check and I've turned the corner. Only one more week on Valcyte and I'm done. While Valcyte brought me back to good health, it has also reeked havoc on my counts, especially my white counts - they've gone from a whopping 8,000 to a little over 3,000. Such a delicate balancing act between the disease, my body and the drugs - I'm amazed everyday (and grateful) at the researchers who figured all this out. Removing my Hichman Catheter has been delayed a few weeks until my counts begin to rise just in case I should need a blood transfusion or platelets.

As of today, I am released from the IPOP clinic and will be seen in Outpatient Services (OPS) instead. This is considered the next step in the healing process and while my time there was comforting and safe and God knows they've nursed me through some really tough times, the umbilical cord must be severed and my body needs to work on turning me into a big strong girl again. My oncologist is out on maternity leave so I'll be meeting with Dr. Keith Pratz on Friday. I'm not sure how often I'll need to visit OPS, but I feel ready. I've been advised to not become discouraged in regard to my energy level and to not expect it to fully return for 6 months to a year. At this moment I'm a believer. I still need to rest everyday.

It seems my biggest obstacle is fluid retention - a side effect of Gleevec, so, I'll need to watch my sodium intake, etc. I'm also going to be scheduled for another Echo-cardiogram to see if there are any changes since the last one. I've been given some deep breathing exercises since I'm not expanding my lungs to their full capacity (which is a result of being sick and laying around) and I'm to try to do a little moderate exercise everyday to start to increase my muscle tone (which has totally gone to pot). All in all, I feel encouraged and ready to move forward.

Side Note: I got an Explanation of Benefits Statement from my insurance company today. My impatient care from 5/20/09 - 6/13/09 (this was when I was in JHH for my BMT) was $92,422.51! This does not include drugs, doctors, or the actual BMT procedure. Thank God for Carefirst BlueCross/BlueShield and my private insurance - this whole ordeal has cost me nothing since the day I was diagnosed.

Cytomegalovirus (CMV)

Well, they've finally figured out what is wrong with me and why I am feeling so poorly. I have a virus known as Cytomegalovirus (CMV).

CMV is a common virus that infects most people at some time during their lives but rarely causes obvious illness. It is a member of the herpes virus family, like chickenpox, infectious mononucleosis, fever blisters and genital herpes. Like other herpes viruses, CMV can remain dormant for a while and then reactivate at a later time. It's possible that this little gift came from my donor, but it's also possible that my sleeping CMV simply woke up. Because I have a suppressed immune system I am prone to these types of infections, and believe me, this one hit me hard. CMV is not uncommon among BMT patients and Hopkins protocol calls for regular blood tests to check for it. Although CMV infections are of concern for people like me, CMV pneumonia and CMV in the intestines are particularly worrisome because they can be fatal! EGAD! I am currently on mega doses of an antibiotic called Valcyte that costs a mere $1706.81! Double EGAD! Any drug that costs that much for a weeks worth ought to have me dancing the jig in no time, right? I will however, remain in IPOP another week so that my progress can be closely monitored and so when I'm released to Outpatient Services I'll be fully recovered. I'll be tested again next week for CMV and probably for weeks to come. I am told that the medication is likely to cause my white blood cells to drop so I'm glad they are now over 7,000. I am so relieved and ready to feel better - this has been going on way too long.

Now the really good news - my donor vs patient results are in and I now have 100% donor marrow. That is the best news ever! I am so excited about his you have no idea. Things are really looking up now!

Day 62 and Still in Clinic

Today is Day 62 and I still haven't been released from IPOP. And, it doesn't look like things are going to change anytime this week either even though my numbers are looking good.

My skin biopsy from last Thursday was inconclusive - my skin rash could be GVH or it could be a drug reaction. A bone marrow doc will visit me in clinic tomorrow to further evaluate as my rash is not only highly visible now, but is spreading over my entire body. As for my innerds, well that's another story. Nausea and diarrhea have become the bane of my existence. After I see the doc tomorrow it will be determined if I need to have an endoscopy done as GVH can also settle in the gut. If the GVH worsens then I'll be treated with steroids, if it doesn't then it's merely a wait and see situation. GVH must be monitored very carefully as it can seriously effect the major organs of the body. While a mild case of GVH will not be treated and is a good and important step in my recovery, monitoring and taking care of myself are the watchwords. Even a mild case of sunburn can be life-threatening to someone with GVH.

I also had a CT Scan of my sinuses and chest on Friday and they are both clear. My bone marrow biopsy and donor vs patient test results are not back yet, and my stool specimen was clear of any bacteria or infection. So everything points to GVH, but it's just too soon to tell with certainty.

This has been a difficult couple of weeks for me. I feel weak and just plain worn out, especially after doing so well through everything else. But, this too shall pass and when it does, watch out!

Release from IPOP Likely to be Delayed

It is very likely that my discharge from IPOP to Outpatient Services will be delayed by a week due to some recent complications.

The good news first. My echo cardiogram from last Friday shows that there is no fluid around my heart. Apparently CT Scans of the Chest are notorious for showing what looks like fluid and Echos, which give a much clearer picture, either confirm or disprove. The coughing that I have seems to be a simple case of post-nasal drip.

Two more things that are contributing to my general feeling of lousiness are Oral Thrush and the beginning of Graft vs Host. Oral thrush produces creamy white lesions on the tongue and inner cheeks and is common among people with compromised immune systems that are on a constant diet of antibiotics. If left untreated it can grow down the esophagus. The lesions can become painful -mine are not. To treat I was given a oral rinse and a "wait and see".

Graft versus Host Disease (GVHD) is a common complication following an allogeneic stem cell transplant. Twenty to 50% of patients undergoing a stem cell transplant with a related donor develop it. It is triggered by cells called T-cells which are a type of white blood cell that can recognize which cells belong in an individual's body and which cells do not. When a donor's T-cells are transplanted into a patient, they perceive the patient's organs and tissues as foreign cells and orchestrate an immune system attack to destroy them. Fortunately, most patients transplanted with stem cells from a related donor experience only a mild or moderate case of GVHD that resolves itself over time with treatment. Although GVHD can be very serious for some, it is too soon to write about all the "what ifs".

My GVHD seems to be in the first acute stages - skin redness, a rash and just generally not feeling well. I am unsure what my long-term treatment will be, but I am scheduled for a skin biopsy tomorrow which will confirm or deny the presence of GVHD.

On Friday, which is Day #59, I will receive a bone marrow biopsy. From the biopsy they will examine the marrow to be sure that everything is as it should be. I will also have a blood test done to determine how much donor and how much patient marrow is in my body. I've been told that in the near future I will have to get another series of Lumbar Punctures and intrathecal chemotherapy treatments in my spine. All normal precautions for the type of leukemia I had. God I'm tired!

Fluid Around My Heart

As it turns out, I wasn't able to attend my Discharge or GVH Class yesterday as scheduled. I haven't been feeling very well the last few days so after a battery of tests and scans it was found that I have some fluid around my heart. Today I'll get an Echo-cardiogram to determine what the next step(s) will be. It's likely that Gleevec is the culprit since one of it's side effects is congestive heart failure. Congestive Heart Failure (CHF) is when the heart can't pump enough blood to the other organs in the body. As blood flow out of the heart slows, blood returning to the heart through the veins backs up, causing congestion in the tissues. Often swelling (edema) results. Most often there's swelling in the legs and ankles, but it can happen in other parts of the body, too. Sometimes fluid collects in the lungs and interferes with breathing, causing shortness of breath, especially when a person is lying down. Heart failure also affects the kidneys' ability to dispose of sodium and water. The retained water increases the edema. An Echo-cardiogram will determine if any of my heart valves have been damaged and to what extent the fluid is present. Maybe Gleevec isn't so "smart" after all.

Day +50 and Counting

Today is day 50 - I can hardly believe it. My counts are fantastic yet I struggle with bouts of nausea and fatigue on a daily basis. I'm told that my body needs time to adjust to being on the Gleevec again - this is my 3rd week and I say enough is enough. My appetite is non-existent and food is my enemy. We are saving a fortune in groceries. Nothing seems to please my palette and I worry constantly about vomiting (which I've done 5 or 6 times in the past 3 weeks). Gosh, I don't remember being this bad in the hospital - well, maybe I was and have chosen to forget. I'm told the nausea and fatigue are the last two things to go away, that I need to practice patience and by November I'll be feeling much better! Huh!!!

My white count is over 6,000 and my ANC number is 3990. Since being released from the hospital I have not had to receive one blood product - I got me some good bone marrow didn't I? Brad continues to feel fine. The blood test that was taken on Day 30 to determine how much donor and how much patient marrow I have indicated that I am 85% donor and 15% patient. That is good news. The test will be taken again on Day 60 with a hope of 100% donor.

I am now on Dapsone (antibiotic) instead of Bactrim because I broke out in an itchy rash (not uncommom). While the itching almost drove me crazy at times, I adapted well to the smell of the medicated anti-itch cream. You can still find me scratching about and I often wonder if my skin will ever return to normal if there is such a thing. Speaking of which, I have quite the chemo tan - I look like I have been spending my days laying in the sun - NOT! I find it quite amazing that all of these things are happening now - almost 2 months after transplant - I wonder what is yet to come. That chemotherapy is potent stuff, that's for sure and takes a while to leave the body.

As of Day 60 (which is July 25th) I will be released from the IPOP Clinic and will visit Outpatient Services instead. I'm not sure what to expect at this point, but I think my visits will be less than 3 days a week. Tomorrow I have to attend a Discharge Class and a GVH (Graft vs Host) Class. I'll write about GVH as I learn more. I do know it has to do with the rejection process and that it can happen around the 3rd month after transplant. Just another hurdle, right?

As you can see by the picture I posted of my 60th birthday I have hair! That is my wig and while I get all sorts of compliments, I prefer to go au natural or wear a scarf. The good news is I do get to go out whenever I feel up to it and there are fewer restrictions. I try to avoid huge crowds though and have become quite the germaphobe, but hey, worse things can happen. Ray and I have been able to spend a lot of time on our boat which I find most relaxing. And this weather - I love it! The cool breezes and the lapping of the water are quite conducive to napping.

Day +35 Philadelphia Translocation Chromosome

For fear of sounding redundant, my numbers continue to improve. My ANC is 2350 and my white count is over 3,000. I am well on my way, but still await news about my donor vs patient blood test that I had done last Thursday. Apparently it's pretty involved and the results don't come quickly.

I started on Gleevec again yesterday and although I know it's my reality it feels weird to be putting chemotherapy in my body again. The side effects have been mild and once my body adjusts I won't even know I'm on it. Gleevec is a "Smart Drug" and targets a particular abnormality that I happen to have and which caused my leukemia, (aren't I special) known as the Philadelphia Translocation Chromosome (Ph+ Chromosome) - named for the city in which it was discovered in 1960. Ninety-five percent of patients with Ph+ have or will get CML (Chronic Myeloid Leukemia).

If you remember I started out with CML (probably years ago), that eventually progressed to the blast-crises phase of ALL (Acute Lymphocytic Leukemia). The Gleevec that I started taking in March and continued taking until I went in the hospital on May 20th literally kept the blast-cell phase of ALL at bay. That and the bone marrow transplant will continue to do that. Unfortunately, I will always have the Philadelphia Chromosome (and the potential to get CML) in my body. The bone marrow transplant cannot take that away, but because Gleevec targets that particular chromosome it can be kept in remission.

Each chromosome is made up of genes which are like a set of instructions that tells the cells of the body what to do. The Ph+ Chromosome forms when two normal chromosomes break and parts from each broken chromosome switch places. This results in 2 mixed chromosomes - one of which is the Philadelphia chromosome. This change is know as translocation. The Ph chromosome is an abnormally short chromosome 22 that is one of the two chromosomes involved in a translocation (an exchange of material) with chromosome 9. This translocation takes place in a single bone marrow cell and through the process of clonal expansion (the production of many cells from this one mutant cell) it gives rise to leukemia. The discovery of the Ph chromosome was landmark and is the first consistent chromosome abnormality found in any kind of malignancy. Who knows where this discovery could lead.

Translocation makes several unusual things happen. First, a new, abnormal gene called acr-abl forms during translocation. Then, the abnormal gene makes an abnormal protein called Bcr-Abl tyrosine kinase. This abnormal protein tells the bone marrow to make more white cells than it needs to with this abnormal protein and is the underlying cause of Ph+CML. If this abnormal protein is kept under control, the number of white cells decreases, keeping the disease under control. To prevent disease reactivation it is necessary that the abnormal cells are suppressed to minimum levels at all times as some abnormal cells may still remain in my body even if they are too few to be measured -that is why I need to take Gleevec for the rest of my life.

People like me, with Philadelphia chromosome positive myelogenous leukemia (Ph+CML) will have a treatment approach which is different from that of patients who lack the abnormal chromosome. The same holds true of people with other leukemias. Fortunately, the Philadelphia chromosome cannot be passed on to descendants because it is an abnormality which occurs during cell division and is only present in the bone marrow not in the germ cells which dictate genetic inheritance.

So, that is my story up until now. I'll continue to write at least weekly. Hopefully, I won't have any "exciting" news to tell. Thanks for "listening" - it means a lot.

Day +28 Going Good

Things continue to look up for me. My counts climb steadily every day. Today my counts are 30.2 Red/3530 White/88K Platelets/ANC 2020. I feel good most of the time, but find my tiredness meter dips to low quite frequently. I did however get to spend some time on our boat this weekend. It was theraputic to talk with some old friends and to be out doors in beautiful weather.

On Thursday, I'll be getting a special blood test to determine how much patient and how much donor my marrow is right now. The docs want to see all donor marrow at this point. They will also test for T-cell counts - not quite sure why, but I'll find out. These tests are routine as I approach Day +30 which is a big deal and major milestone in the world of bone marrow transplants. It's quite possible I'll only have to go to clinic a couple of times per week, I get to stop my anti-viral meds, and I'll get my driving priviledges back. Yipee!

Day +20 Life At Home

It's official - I'm home and so very happy to be here. My ANC was only 137 on Saturday so I was quite surprised that the docs released me. They usually prefer to keep patients until it reaches 200, but Dr. Jones said he had to look at the entire picture and how well I had done overall. Since then I have been visiting the clinic each day and my numbers as of today are great - 33.3 Red/1010 White/42K Platelets/ANC 525! Good Numbers for not even reaching Day +21 yet! My medications include an anti-viral and tomorrow I start on Bactrim another type of antibiotic. After my counts become more established (around Day +30) I'll start on Gleevec once a day - the oral chemotherapy medication that I was taking before my BMT. I'll be on Gleevec for the rest of my life.

Since being home I am more tired than ever though. The confines of my room at JHH were nothing compared to steps and dressing for clinic each day. Although Ray is taking good care of me, I am exhausted and nap every afternoon. I'm told it's all quite normal and that I should give in to it and enjoy it while I can. I am.

Day +17 Hooray!

My numbers are getting better and better everyday. 30.8 Red/390 White/30K Platelets/ANC 117 today. Good bone marrow from my big brother and my own strong body have blended nicely in bringing me to this point of wellness. I am so incredibly grateful! My team was just in and it looks like I will be discharged tomorrow if my ANC reaches 200. I am so pleased. They said that because I am leaving way earlier than most BMT patients, I should not to be surprised if I spike a fever or have a small set back and have to re-admitted at some point. I'm not counting on that, but it's good to know that it's not unusual. Now, while all this is good news, it's not to say that my saga is over - it's not - far from it. I'll have a year of added precautions and limitations, so it looks like there are many obstacles still to come and overcome. I've been given a "discharge book" that lists all kinds of limitations and possible problems that can be expected over the next 12 months. I'm entering another phase - a new normal so to speak. But, I believe that my new normal will be filled with wonder and excitement - new beginnings, new perspectives, new adventures.

Thanks for all of your prayers, good mojo, and positive thoughts that you've sent my way. Please don't stop, I still have a long way to go and believe that I wouldn't have fared so well without them. A sincere "thank you" for your support and encouragement through it all. It would have been so hard without you! I know that something good and wonderful will come of this - that your support will not be in vain - I've had a lot of time to think since my diagnoses - you can't imagine the ideas that are whirling around in my head right now.

I intend on keeping up with this blog, updating every couple of days or so. Heck, you never know what might happen. I'm not wishing for it, but I could become medically interesting at some point, so tune in from time-to-time to see how well I'm progressing.

Again, my thanks for hanging out with me for so long.


Love, Bev

Day +16 Good News Day!

My numbers are good today - 28.7 Red/240 White/31K Platelets/ANC 48!!!! Yeah!!!

In rounds this morning, the team told me that they think my numbers are real and that I will probably go home sometime this weekend! Just what I want to hear. I am so excited you can't imagine. Instead, I'll make daily trips to the IPOP Clinic. That's all I can write about now, remember, I'm medically boring!

Days +14 and +15

My numbers for yesterday, Day +14 are (23.8 R/80 W/37K P/ANC 0). I was told by the Resident Doctor that I am "medically boring". I think I'll take that as a compliment!

Today - Day +15 - I received two units of blood last night since my reds were low yesterday. My numbers today don’t reflect the new red count, but they are encouraging nevertheless. 23.9 R/120 W/34K P/ANC 0. My whites are rising, but I’m afraid to get too encouraged by that. We’ll see what tomorrow brings.

My mouth sores are still bothering me and I have a little bit of a sore throat from them. That is my only complaint, well, that and I want to go home!!! Twenty-two days is quite enough.

Day +13 We're Getting There!

My numbers are good today (26.0 R/80 W/47K P). Now, don’t go thinking my white cells are on the rise already – it might be a little too soon for that and besides, anything under 100 is considered zero. But I continue to feel the healing effects and believe that I am growing stronger each and every day.

However, I did receive some startling news today from Dr. Carraway, my oncologist. I found out that I will be on Gleevec for the rest of my life. I was really taken back by that, but have come to realize that it’s no different than any other preventative medication that people around the world take everyday - Zocor, Tricor, Cuminum, etc. My oncologist thinks it unwise to take the chance of having a single rogue cancer cell divide and multiply, putting me in jeopardy once again. Although I’m a little unnerved and haven’t learned all the ins and outs of what that means exactly, I have little choice but to follow doctor’s orders.

The good news about Gleevec, known as a “Smart Drug”, is that it targets only leukemia cells not other fast growing cells like hair follicles as other chemotherapy’s do. It goes right to chromosome 99,2, the Philadelphia translocation chromosome and kills any cancer cells that may grow.

Days +11 and +12

Day +11 - My mouth sores are still around, but have not gotten any worse – if anything they have improved. I am careful to rinse my mouth many times per day with a saline solution provided.

I got 2 more units of platelets last night. Tell me, why do platelets have to be infused at 4:00 AM? My counts today are 28.6 R/60 W/ 9K P – you can see why I needed platelets. After receiving platelets, my count rose to 76K - super platelets I guess!

I am growing more accustomed to my baldness. I’ve found if I plaster a smile on my face it helps my overall appearance while elevating my spirits. I yearn for long silky tresses.

My appetite has returned somewhat and I’m not really losing any weight at this point. The docs like that – they encourage eating and exercising. I walked 25 laps today = 1 mile.

Day +12 - I am feeling good this morning after a pretty good nights sleep - well at least as good as you can get in a hospital. My blood pressure is low and there is concern over whether or not to change my atrial fib medications. It's always something!

I really do feel like I am on the upswing and that my body is healing. I have been here 18 days so far and feel like things are going to turn around in the very near future. Call me over zealous - I don't care - I simply feel changes taking place in my body - and they're all good! My counts are 25.3 R/70 W/60K/ANC 0.

Day +10 Miscellany

My hair was starting to fall out rather quickly yesterday, so I decided to bite the bullet and get my head shaved. Whew! I’m glad that’s over. It was much harder than I ever dreamed. I feel as though I look like a little old man and I am not happy. I know this is just one more step in the many that I have to take to get to the end of this nightmare, but it's not easy. My hair will grow back (it takes 6 months to 1 year to grow back a full head) and in the scheme of things it’s a small price to pay. But, I’ll warn ya – I’m sensitive about it, so no bald jokes!

My counts today are 27.2 - Red; 70 - White; 16 K - platelets (after receiving one unit last night); with an ANC of O. Keep watching the white count - it will go even lower as I tend towards bottoming out. I am still on my usual antibiotics, anti-fungals and all the other stuff they are giving me.

I now have mouth sores (mucositis). They started out looking like little blood blisters and then they just turn sore. Sometimes they swell a little. Mine are located in the back, kinda where my jaw hinges, so it prevents me from opening my mouth too far. Right now I feel like I have the beginnings of a sore throat. We all know what that feels like. So far, they are tolerable and I've been told there are soothing and numbing medications if necessary.

A Couple of Things

My ANC hit zero today where it will likely hover for 7-14 days. Geez, that is a long time! When my ANC starts to rise and reaches 500 I'll be released. Statistically, patients do much better at home than they do in the hospital so if there is an upward trend and all else is okay I'm told that often a doc will release early. Once released I’ll have to come in to clinic every day to have my counts checked (and attended to if necessary) and whatever else might be needed.

As many of you have asked, Brad is feeling well after struggling for a couple of days to work through the effects of his anesthesia and not taking his regular meds, etc. He is feisty as ever and has already started making a list of things that I can do to repay him!!! For the serious minded – I’m only kidding!

My hair is beginning to fall out slowly but surely. I am finding small remnants here and there around my room and in the bathroom. Guess it’s just a matter of time. I’ll post a picture – maybe!

I have lost about 12 pounds since I've been here, mostly in the last ten days. Sometimes food is just not appealing although I'm encouraged to eat as much as I can tolerate. Patients are also encouraged to walk laps around the unit everyday. It's a little boring and I am one of a few that is well enough to do it, but is good to get out of my room, is good for my lungs and overall well being.

Vancomycin Resistant Enterococci (VRE) - Enterococci are germs that are carried by everyone in their gut – along with numerous other bacteria. These bacteria can sometimes cause infections. Vancomycin is an antibiotic that is often used to treat infections caused by enterococci. In some instances, enterococci have become resistant to this drug and thus are called Vancomycin-Resistant Enterococci (VRE).

When I was routinely tested for VRE it was discovered that it is present in my body (colonization). It's very likely that I picked up the germ while here. I am at risk for it becoming an infection because I have a weakened immune system. Because it is colonized I require no special treatment - hopefully the antibiotics I am currently taking will keep it at bay.

If left untreated, VRE can manifest into a bacteria infection in the blood. I know, is this all getting a little too Twilight Zone’ish and dejavu’ish??? A bacteria infection in my blood, vancoymycin!!??!! If you haven’t read my first post or know the story of my leukemia diagnoses you won’t get it, but feel free to go back to read that part.

So, I’m kinda in a quasi-quarantine and will be there until I receive 3 consecutive negative finds. They only test only once a week, but I’m told this will not interfere with my release since my infection fighters will be fired up by then and people at home deal with these types of germs everyday and don't even know it. Since VRE is often passed from person to person by the hands of others anyone who visits will have to be suited and wear gloves as well as the usual mask. This is a Hopkins protocol so that the germ won’t be transmitted elsewhere in the hospital. Ultimately, it’s for the protection of the other patients with suppressed immune systems.

What Blood Counts Mean - from Stephanie

Just a quick overview about what the numbers mean. Every day they are checking Mom’s blood counts. They check the white blood cell count, red blood cell count, platelets count and absolute neutrophil count (ANC). Today they are 32.5-R/110-W/44K-P/ANC-44).

Leukemia is cancer of the white blood cells. In order to cure this disease, they wipe out the bone marrow, which is where all blood cells are created. There is just no way to wipe out only the bad cells, so they wipe out everything. They then give the patient donor bone marrow and wait for the new marrow to grow and make new blood cells.

As we are waiting, we expect low numbers of all the blood cell types. If the red blood cell numbers fall too low (as measured by the hematocrit), then Mom gets blood transfusions. If the platelets are too low, then they can also be given by transfusion.

It is the white count and most especially the ANC that are important in determining when Mom goes home. The ANC is the absolute neutrophil count. Neutrophils are one subset of white blood cells and they are the cells responsible for immunity against infections. Mom needs to have an ANC above 500 in order to go home. Her count today is 44. We expect it to drop to zero in the very near future and to stay there for a while. Then it will gradually rise as the donor marrow begins to take root inside her bone marrow and begin to produce new blood cells.

Once the ANC reaches that magic number of 500, she should be OK to go home. At that point she will still be at some risk for infection, and will have to take precautions like staying at home and wearing a mask around others until her ANC count reaches the 1500-1800 range.

Day +6 Blood Counts

Today was a great day. I woke this morning feeling fully rested and raring to go. It's June 1st afterall.

My counts continue to fall (30.8 Hemogrit/186 White/15K platlets/90 ANC-neutrophil no.). My red cells are hanging tight since I received 2 units of blood yesterday. My platlet count is so depleted (normal is 150K - 350K) that I will probably need a unit by tomorrow. These numbers are from 10 PM Sunday evening so it's possible that the count could drop to 10 or 20K. As my numbers decrease it is imperative that my red cells and platlets are kept at a reasonable level since no one (not even you) can live without either one of them. The number to watch though is my ANC number. That is the one that we'll watch drop to zero and then slowly climb back up to normal levels. I'll be waiting for my new marrow comes to charge in, take over and lead me to a normal immune system! The red cells and platlets will follow suit on their own. YES!!!

What I Might Face in the Days to Come

Mouth sores (mucositis) typically appears 7-14 days after the start of therapy and heals when blood counts return to normal. Mucositis includes redness, dryness, swelling, ulcers and white patches and are a result of high-dose chemo that can temporarily damage some normal cells such as those that line the mouth, throat and gut. The nurses are adament about rinsing with a Sodium Chloride Solution seveal times a day to prevent mucositis - I follow orders well.

Hair loss (alopecia) always occurs following high dose chemotherapy. It begins to fall out 1-3 weeks after the first day of treatment. Since my first day of treatment was May 20th I'm in that time frame. I am a little unsure how I feel about it, but I guess I don't really have any choices now do I? I came preared with some cute hats and have purchased a wig although I haven't picked it up yet. Maybe I'll be the exception. Do I sound like I'm in denial???

Hair begins to grow back 4-6 weeks after the last treatment. I've heard mine might come back gray!

Day +5

More of the same today. Food is starting to revulse me. My numbers are falling and I am now considered neutropenic. I am exactly where I should be but forgive me for being blunt - I'm whopped and getting into bed! Love to all!

Day +4

I received my last dose of Cytoxan this morning. I am so glad that part of this process is over. My counts continue to fall (as they should) with only a few minor side effects so far.

My bathroom problems continued through the day until about 3:00. Of course, the nurses want to measure quantities, send off samples and generally make my life miserable. The large quantities of antibiotics they are giving me is not helping this situation! I know they are doing what they need to do, but Yuck and Yuck!

I have also had some problems with swallowing today. My throat is a little sore. It's nothing I can't live with right now, so I'm trying to remember to not gulp liquids and to cut my food smaller than normal. No sense exacerbating the problem. I'm going to practice some of the hypnotic techniques I learned now so that if it worsens I will be able to cope.

Day +3

Again, nothing too eventful going on. Boredom has officially set in - at least for now. I started my morning at 5:00 AM when I began Mesna and IV fluids. At 6:00 AM I got Cytoxan and once again only experienced a slight burning in my nostrils. Tomorrow will be my last day of IV Chemotherapy. Yippee!

Today is the first day that I have begun to show any significant side effects. I am extremely tired and, well, have to make frequent bathroom visits. Enough said. Once a sample is tested I'll be offered Imodium, but I'm told it won't work in this instance anyway. Great!

My blood counts are depleting which is exactly what is supposed to happen. I received two pints of blood today to give me a little boost, but this is how things will be going over the next 10 days or so. The chemotherapy is clearing out my old cancerous marrow and as a result my blood counts are dropping. Perfect!

Days +1 and +2

Days + 1 and +2 were rather uneventful. They were meant to be days of rest and that's what they were. I have been sleeping fairly well, (as well as you can in a hospital) but the more fluids they infuse the more bathroom visits I need to make during the night. I am on various medications - anti-fungal, anti-viral and antibiotics to insure I won't contract something I shouldn't. My blood counts are beginning to decrease so I am becoming more susceptible with each day. I am feeling okay, just plain tuckered out. Tomorrow I start back on IV Cytoxan chemotherapy for two days and then I just need to be patient and let my new marrow do its job. I'll keep ya posted.

I have to say, this experience has been such a science lesson. The process is so complex it's hard to imagine how it was ever conceived!

Day Zero

Hi all! Mom asked me to post an update. Today was Day Zero, aka Transplant Day. We have all been anxiously awaiting this day. And I think we all feel relieved that it came and went so uneventfully.

Brad got to the hospital bright and early. Approximately 2 liters of marrow was aspirated from his pelvic bones. I am told he did well with the procedure and was discharged this afternoon. I think the plan was for him to spend the remainder of the day resting. I know he has a follow up visit tomorrow to check the site of the harvest, but this is just routine and he should do just fine.

Once the marrow was harvested, it was then sent to the lab to be processed. That processing including filtering it and also depleting it of red blood cells. Apparently, this depletion makes it easier for Mom to tolerate the infusion of the marrow.

After the processing was complete, the nurses brought in the marrow. All the nurses kept saying "Happy Birthday!" I suppose that was in recognition of the fact that this is truly a turning point in the treatment.

For Mom, the transplant was a bit anti-climactic, as it was no different than receiving any IV infusion. Yep, that's right, it was given by IV. Somehow, those beautiful stem cells know where they are meant to go and will make their way into the marrow space where they will begin making all the components of normal blood, including red cells, white cells and platelets.

It will take a while for them to make their way there and begin creating new blood cells. In the meantime, Mom's blood counts will start to fall as her own native marrow is now "cleaned out" by the chemo and no longer producing blood cells. During this time, and until the donor stem cells start producing new blood cells, her blood counts will be extremely low. They expect the lowest point to be reached at around Day 7-10. Typically, the new stem cells don't start making large numbers of new blood cells until about Day 21 or so. So, the next couple of weeks may be hard on Mom as we wait for the new marrow to "kick in" and she begins to feel some delayed effect of the chemo drugs.

Many thanks to everyone for all the well wishes and love sent our way. Rest assured that everything is going well and that we've cleared another hurdle!

Stephanie

Day -1

I was up at all hours last night for meds, vital signs, bathroom visits, etc. By the way, my 11:00 PM trash pick up was right on time! No wonder I am so tired. I got my second dose of Cytoxan at 6:00 AM today and basically slept right through it. No symptoms at all until this evening when I experienced some waves of nausea. Tonight I will begin to receive antibiotics and other drugs to ward off any potential side-effects. The docs and nurses tell me the worse is yet to come next week when my body struggles to accept, sort out and kill off all at once. I guess that’s when I’ll learn what my true mettle is all about!

Brad was here for a final blood draw and will report for the bone marrow harvest at 7:30 AM tomorrow morning. After some sort of cleansing and processing I will receive the bone marrow around 12:30 PM. I don't know how long the infusion will last, it depends on the quantity which is determined my cell count. I am very anxious and a little scared, but am looking forward to tomorrow.

Day -2

Well I’ve made it through another day unscathed. My last dose of Busulfan was at 1:00 AM and then I started Cytoxan at 6:00 AM. Prior to the Cytoxan I received 2 anti-nausea meds (I don’t remember their names), Adavan (to relax me) and Mesna (to protect my bladder). The Cytoxan infusion only lasted an hour and all I felt was a slight burning in my nostrils, a common side effect. Twice today I was given additional anti-nausea drugs as part of the regimen. I understand from the nurses that most side effect symptoms won’t rear their ugly heads during my 6-day prep, but will instead show up about a week after my transplant – I know, it makes no sense to me either, but what do I know?

I have to admit, it is extremely unnerving to put all these poisons and drugs into my body. It just seems wrong, yet it’s what I need to do to prepare myself for the new bone marrow which will ultimately keep me alive for many years to come. It’s kinda like flying in an airplane I guess, which seems impossible and unnatural yet it’s the best (and the only way in my case) to get from point A to point B?

I am very tired again tonight and expect to feel more and more fatigued as my marrow and counts are taken down. Only two more days and I’ll be heading out the other side of this nightmare.

Day -3

No major changes from Day -4. I’m still on Busulfan every 5 hours and luckily have experienced no side effects other than a slight darkening of my skin, which will gradually disappear, and a feeling of being hot all the time. Fortunately my room has it's own thermostat.

Tomorrow at 6:00 AM I will be introduced to my first dose of Cytoxan (Cyclophosphamide) which will be administered via IV drip. Cytoxan is given in very high doses (once a day over 1-2 hours) for 2 days before an allogeneic transplant (getting bone marrow from another person) to kill any cancer cells that remain and to make room for new bone marrow to grow, then again on days 3 and 4 following my transplant in order to prevent Graft-versus-Host disease.

Graft-versus Host (GVHD) is a common complication following an allogeneic transplant. Twenty to 50% of patients with a related HLA-matched donor develop GVHD which is typically triggered by cells called T-cells. T-cells are a type of white blood cell that recognizes which cells belong in an individual’s body and which cells do not. When a donor’s T-cells are transplanted they perceive the patient’s organs and tissues as foreign cells and orchestrate an immune system attack to destroy them. Fortunately, most patients transplanted with a matched related donor experience only a mild case of GVHD that resolves itself over time with treatment. But of those with a more severe case of GVHD, managing this potentially life-threatening complication can be a serious challenge. There are lots of nasty side effects of GVHD but I'll let you know about them later if necessary!

For each dose of Cytoxan that I get I will receive 4 doses of a drug called Mesna that helps to protect the bladder wall – one before infusion and three after. Bladder irritation is very common with Cytoxan so IV hydration is a very important aspect to protect and flush the bladder. High-dose chemotherapy is toxic to normal tissues and organs, as well as diseased cells. Nausea, vomiting, diarrhea, mouth sores (mucositis), throat sores (stomatitis), a burning sensation in the nose or sinuses, a lowering of blood cells (putting me at risk for infection and bleeding), and hair loss (alopecia) almost always occur to varying degrees, probably one week after transplant. While organ damage (liver, lungs, heart) can occur, it is usually mild and completely reversible. There are several other possible side-effects, but since they're not likely to occur, why fret over them now!

Let’s pray that I’ll do as well on the Cytoxan as I did on the Busulfan. I’ll fill you in tomorrow.

Day -4

Today was rather uneventful, with the exception of increasing the amount of times I receive the Busulfan - 31 pills every 5 hours. No blood draws tonight so I am looking forward to getting a decent nights sleep. My kinetics tests indicate that I am now receiving the proper dosage. On Sunday I'll start Cytoxin which is an IV chemotherapy drip. I am really tired so it's going to be an early night. But, I have one question, why does housekeeping have to empty my trash at 11:00 PM????

Day -5

In JHH terms, today is day -5 which leads up to Day Zero, transplant day. So far I have had 5 doses of Busulfan, thankfully with no side effects. I am most grateful! As a result of the blood tests last night it was found that my chemo levels are not sufficient to get the job done for my height and weight so I am now taking 31 teeny tiny pills per dose instead of 29. My most recent dose was at 8:00 PM, my next will be at 2:00 AM. Because my dose increased I was NPO (nothing by mouth) from 6:00-10:00 PM. Fortunately, I was smart enough to eat dinner before that time. I am currently having blood drawn every 12 minutes. At 10:00 the intervals will be longer but that doesn't count when they come in to take vital signs (blood pressure, pulse, temp). Hopefully, I'll get some good power naps in there at some point!

I'm Here!

Well, I'm here and ready to get this party started even though admittedly, I'm scared to death! Fortunately, I had my Hickman replaced yesterday without incident. A little extra sedation and my new hypnosis techniques helped a lot. I will remain on 750 mg's of the antibiotic, Cipro for 3 or 4 more days.

I'm settled in my room awaiting my first dose of Busulfan (or Myleran), which is one of two chemotherapy drugs I'll receive during my 6-day prep. Busulfan slows or stops the growth of fast growing cells such as cancer cells and bone marrow cells (hair has fast growing cells too). It is given before bone marrow transplants in very high doses to kill cancer cells and to make room for new bone marrow to grow. I got it in pill form - 29 teeny tiny pills that are distributed in 4 clear capsules with 6 tablets in each and 1 clear capsule with 5 tablets. After this first dose I'll have approximately 10 blood draws in two-hour intervals to insure that my body is getting the correct amount. For this first dose, I can't eat or drink anything for 2 hours before taking Busulfan or 2 hours after because food changes how quickly it gets into my blood stream. Today I stopped eating/drinking at 3:00 PM with the expectation of getting the Busulfan at 5:00 PM. Not! Instead I got it at 8:30 PM - guess there'll be no dinner for me tonight.

Not everyone has side effects from Busulfan, but it's possible that I may experience nausea or hair loss as I receive it over the next 4 days. I have been given and will continue to receive an anti-nausea drug as well as an Adivan to help relax me. Another side effect of Busultan is that my skin color may darken, especially in areas where skin touches skin. The darkened skin color will gradually disappear over time. Very high doses of Busulfan can very rarely cause seizures so I'll also be given a drug called Dilantin to take before, during and for a short time after taking the Busulfan. So, your guess is as good as mine in regard to how things are going to go for me - every patient reacts differently. I'll be sure to let you know! More to come on Cytoxan, the other chemo drug I'll be getting in a few days.

Weekend Update

Let's just say, I like to keep it interesting! Went for my IV antibiotic today only to learn it will be my last. Seems my infection has been identified and can be treated with a $12 oral antibiotic I am already on. Thank God! I am constantly amazed at how well things have worked out for me. My transplant date is secure and I am feeling blessed. Please join me in one big sigh of relief!

The wig selection, however, did not go as well. There isn't a manufacturer around that could possibly replicate my thick, kinky hair. All the styles are sleek and smooth - the hair I've always wished I had. Guess now is my chance. I think I need another set of eyes to help me decide. That's a job for another day.

SNAFU #2 Update

I went to see Dr. Carraway this morning. My blood cultures have already begun to grow a gram negative rod infection of some sort, but will take several days before the organism can be identified. She has taken me off one of the oral antibiotics (the $70 one, not the $12 one,of course) and has opted for a different IV antibiotic because it will enter and get to work faster than oral meds do. So, I'm back in clinic everyday, at least until the organism can be definitively ID'd. Here lies the problem - I am to be admitted in 6 days to start my prep prior to transplant. If there is any possibility that this infection is still in my system they will postpone my transplant. While I totally understand the rationale, I am so bummed I can't stand it. This is not the SNAFU #3 I was considering.

This afternoon I met with my transplant doc, Dr. Javier Bolanos Meade. We talked at length about the side effects of transplant and all the nasty stuff that can happen - more to come on that later. We also signed all the necessary consent forms and am proceeding as if all will go according to plan. I like the positive energy that evokes.

Tomorrow I'm back to clinic for IV antibiotics and to Image Recovery for wig selection and fitting. Blonde, redhead? Hmmm!

SNAFU #2

Well, we managed to get past SNAFU #1 - Brad came back to Baltimore and got his bone marrow biopsy today. Things went well.

SNAFU #2 - The last two nights have been very unpleasant for me. After getting ready for bed and flushing my Hickman Catheter with Heparin (a daily chore) I became extremely cold causing uncontrolable shriving for over an hour. I was so cold, nothing could warm me up - it was very scary. Come to find out I probably had a bacteria infection (here we go again!) on my Hichman line and by flushing it I inadvertently forced the organism to circulate through my body. So, after a stern lecture from my sister-in-law and Dr. Carraway about the importance of reporting things aren't quite right, I had to have my Hichman removed and blood drawn from it and also from another site in order to have cultures done. All of my blood counts are fine, but it will take a few days for the results of the other blood work and cultures to be available. I am now on two antibiotics and am seeing Dr. Carraway tomorrow, unsure when they'll place my new Hichman - I'm going to need it very soon. OK, so things happen in 3's right? One more small SNAFU is acceptable, then no more! Keep your fingers crossed.

Brad's Bone Marrow Biopsy

Sorry to report that Brad's bone marrow biopsy had to be postponed. Our case manager neglected to tell him to stop taking one of his medications four days ago! Hence, the doc refused to do the test. Poor Brad has to fly back on Wednesday to have it done then. It's the little things! If this is the only thing that goes array, I am grateful.

Pre-Transplant Testing

The last few days have been very busy with pre-transplant testing. I don't think there is one crevice, orifice or organ in my body that hasn't been examined - closely! The first day I was at JHH almost 9 hours, the second day 4. I have two more days of appointments - 14th & 18th and then I am done! One of the appointments was to meet with a JHH Social Worker who talked about Living Wills and Advance Directives. Another appointment was a Bone Marrow Education Class (that's a whole blog post in itself!). Boy, did I learn a lot! Reality has hit - I have cancer, it's not going to be easy, and it's going to take much longer than I anticipated. Hope you all are prepared to hang with me for the long-haul!

Between appointments I wandered into the Image Recovery Center to look at wigs, scarves and hats. I purchased two simple caps (similar to what a newborn might wear - I'm told I'll get cold) and two stylish scarves that can be worn by themselves or under a hat. Up until Tuesday I wasn't sure if I would lose my hair or not, but have since been assured I will (head, forearms, eyebrows, lashes, pubic) as a result of intense chemotherapy. So, not only have I decided to get my hair cut yet again (really short this time) I have also decided to purchase a wig - my insurance will pay up to $350. My initial consultation is on the 14th.

Brad is in town getting his testing done too. The worse part for him will be getting a bone marrow biopsy this afternoon. My advice - get conscious sedation if offered. We've had a nice time hanging out and he'll head back to Tampa tomorrow afternoon.

Yesterday I met with a hypnotist - Debbi, who is a dear friend of my daughter Stephanie. She is working with me to help manage the stress and anxiety associated with my illness, as well as nausea, pain, sleeplessness and anything else that may arise. We have two more sessions scheduled, but I have already been able to practice and use some of her techniques to help me get through a very unpleasant bout of illness last evening.

For some reason I became violently ill with flu-like symptoms that lasted about 3-4 hours and just as quickly disappeared. At first I was worried, but when a fever didn't manifest, I realized it must have been something I ate! Anyway, I am feeling pretty good today (just this lousy headache still) and am off to the dentist to get a temporary crown replaced that fell off! My numbers are all good except my white counts (infection fighters) which have dropped from 6600 to 3380. Not sure why they are falling now, but hopefully will continue to hold for just a while longer.

The Last Few Days

I have been suffering with a small headache the last few days and am wondering if this dreary, rainy weather has anything to do with it. Fortunately, if I lay down it dissipates at least for while.

I am anticipating the battery of tests I face this week and of course, having my brother here to also begin his testing. It will be good to know for sure that are bodies are able to support the tremendous burden we will be asking of them in the near future. As the day approaches I am growing more and more anxious about so many things. I hope you'll continue to keep me in your thoughts and prayers as I enter this next phase.

It's Official!

The good news is in - my bone marrow transplant date is officially set - it's May 26th as planned. Dr. Carraway called to let me know the fantastic news. Seems the chemo (Gleevec and the spinal injections) have done their job well. The Acute Lymphocytic Leukemia has vanished from my bone marrow and only the Chronic Myeloid Leukemia remains. I never dreamed it would be this effective. This is the perfect time for a bone marrow transplant - all things are in my favor right here, right now. I can't let the cancer win it's daily battle against all the good work the chemo has done for me.

My numbers are even better today than yesterday and I am feeling fine. I went to clinic this morning for IV caffeine and fluids in order to ward off any lingering effects from my Lumbar Puncture yesterday. I was released from the IPOP clinic and will now report to Outpatient Services starting on May 5th to have weekly blood draws and to begin my pre-transplant testing. On May 5th and 6th I will have a heart scan, history and physical exam, diagnostic lab studies (blood work), CT scans of the abdomen, pelvis, and sinus, chest X-ray, pulmonary function studies, and an EKG. I also have to attend a bone marrow education class, sign consent forms and meet with my transplant doctor as well as Dr. Carraway. Brad's pre-transplant regiment is on May 7th and 8th. He has to donate a unit of blood (just in case he needs it later), get an EKG, take a physical and history exam, get diagnostic lab studies, sign consent forms and have a bone marrow biopsy (I think they'll give him conscious sedation). He'll need to rest afterwards, but is free to return to Florida when he wants to with the promise, of course, that he'll return to Baltimore on May 24th for more blood work, to meet with the Bone Marrow Case Worker and to meet with the bone marrow harvester before the actual transplant. On the morning of May 26th Brad will have his marrow harvested (1 pint to 2 quarts). It will go through a cleansing process and by the afternoon it will be infused into my Hickman catheter. The next day he'll return for a post-op check-up. Me, well I'll just be hanging out in my room for 3-4 weeks waiting for Brad's marrow to find it's way to the empty spaces in my bone marrow that the intense chemotherapy destroyed. Day after day it will begin to make healthy red blood cells, white blood cells and platelets - my new immune system. I can see it in my mind's eye, can't you?

I am so relieved and excited about the finalization of the May 26th date. It is so important that we move on this quickly. I want so desperately to get through this ordeal unscathed and move on to the new life that awaits me. I feel you all with me.

5th and Final LP!

Today was my 5th and final Lumbar Puncture and chemo injection in my spine! All of my cytology reports have been clear thus far, so naturally I expect this last one to be the same. Wednesday I go to clinic for IV Fluids and maybe some caffeine, but since there are no headaches in sight they might just do the fluids. I remained flat on my back for over 2 hours in clinic today and then another 6-8 hours when I got home so I don't anticipate any lingering problems. It is likely that I will be released from clinic on Wednesday and admitted to Outpatient Services where I will report for a once-a-week blood check regiment until transplant time.

I'm still awaiting results from my bone marrow biopsy that was taken last Thursday, but am praying that I'll hear something tomorrow. I desperately want to get the May 26th date locked in and certain!

My numbers continue to improve (WBC=4060; RBC=3.26; Platelets=152,000; H=10.8) and I am feeling pretty good most of the time. My naps however, are essential and mornings can sometimes be unpredictable! This remission that I'm in right now is such a gift - there are snippets of time when I actually feel fairly normal. Naturally though, I worry a little about its longevity. The sooner this transplant occurs, the better off I'll be.

Latest Bone Marrow Biopsy

Yesterday in clinic I had to get another Bone Marrow Biopsy. The purpose - to assure that my chemotherapy is placing me in the full remission that they think I am in and is sufficiently killing the cancer in my bone marrow. All of my numbers and counts are fantastic right now - my neutrophils (also call granulocytes) are good. Neutrophils fight bacteria infections by patroling the body via the bloodstream or lymph system, seeking out and destroying harmful bacteria. I am not considered to be neutropenic right now, meaning that I am not as prone to infection, catching colds, etc. as I was just weeks ago. It does not mean however that I can throw caution to the wind and go back to my old ways. I am able to go outside unmasked if I feel that the time and place are right (although I don't do it much - why take the chance) and I must be vigilant about washing my hands and touching others.

In regard to my bone marrow biopsy yesterday - the results (which will be available in about a week) will determine whether or not my May 26th transplant date can be locked in or whether or not it will have to be delayed a month. A delay is not something I want to even think about, but things have to be at the best possible place in order for them to proceed. If the chemo has not had enough time to decrease the cancer in my bone marrow then there is little sense in proceeding. The trouble with waiting is that one never knows how long the chemo will continue to do it's job and it's best if my transplant takes place in my first remission. Every minute the cancer is fighting the chemo and is determined to win! So you see, timing is crucial.

As you may know, bone marrow biopsies are not the most pleasant procedures to have. They are usually given with only a topical anesthesia and a really long needle. I am certainly glad it's over and that I'm on my way to getting things finalized. They also removed an actual piece of bone marrow for evaluation and feel they got a good specimen. Obviously, my hip is sore, but even more unsettling is this emotional roller coaster I seem to be on right now. I have a plan, but don't really have a plan. I knew this was going to be hard at times, and am fully prepared for the ups and downs, but I have to admit, I am often taken back by how emotional this whole ride has turned out to be.

Lumbar Puncture #4

This morning marks my 4th Lumbar Puncture. As of this writing I am feeling fine - no headache in sight. Things went really smoothly at Clinic today. Although still majorly intimidating, the LPs are becoming less and less of a big deal. Guess so after so many! Tomorrow I return to clinic for more IV fluids and a caffeine drip and then I only have one more LP to go-next Tuesday, April 28th.

My numbers continue to improve. I love the manufacturers of Gleevec! I have reacted so well to this chemotherapy drug that there is a strong possibility that I will be released from the IPOP Clinic and admitted into Outpatient Services. That means I'll see a nurse once a week to have my blood drawn and that's about it unless something unusual occurs. Clearly this news is good -my body is doing what the drug intended - it's putting my into remission which is exactly where I need to stay until May 26th and my bone marrow transplant. So, yes, I'm doing exceptionally well - but I have to admit, I'm nervous to leave the safety and sense of well being that is the clinic. It's a community of sorts there that shares something quite significant - living with cancer. Part of what we share though are the awesome docs and nurses that always have our best interest at heart and are there for us every step of the way while we wait for our lives to unfold. The good news - I'll see many of those docs and nurses again before, during and after my transplant since everything leukemia seems to take place on the 5th floor of the Weinberg Building at JHH.

I have an appointment with Dr. Hetty Carraway on Thursday to discuss my upcoming transplant. She is the head of my "team" of docs with a title too long to post here. As you might imagine I have a million questions. Obviously my emotions are running the full gamut and I want all the answers - now! Knowledge is power, right! Gee, this appointment could last a while! Stay tuned - more to come.

Updates, Updates, Updates!

It’s been days since I’ve written, but the news is all good. If you’ve been following this blog you already know that my brother Brad is a 100% bone marrow match. With only a 25% chance of that happening, this is truly a miracle. I am blessed and I know it! Brad contends that this is simply what family members do for one another. From my perspective it’s so much more. Without a bone marrow transplant I cannot survive – that is a fact. Brad is giving me something truly extraordinary – he is literally giving me the gift of life. And to have that gift come from a family member is so profoundly meaningful to me – it’s so personal and comforting and feels so right – I know our parents are proud of their son who is not only family helping family, but is doing it so graciously and willingly.

Baring any unforeseen circumstances with Brad or myself, I am tentatively scheduled for transplant on May 26th. The first week in May I will begin my evaluations – CT Scans, EKGs, that sort of thing. On May 20th I will be admitted to the Weinberg Center for what they so pleasantly refer to as my 6-day “prep”. In reality it’s my trip to hell when I’ll be zapped with mega doses of IV Chemotherapy to kill all of my existing bone marrow in preparation for receiving Brad’s harvested bone marrow. After a 3-4 week stay in Hopkins (worse case scenario) I will begin to feel better and grow stronger and will eventually be released to the IPOP clinic for daily monitoring. So, things are really looking up. I am excited and anxious at the same time. Thanks for all of your prayers, thoughts and positive vibes you’ve been sending my way. But, please, don’t stop now, the party’s just startin’.

Headache Update - after 11 days my headache is finally gone. I'm starting to feel like a human being again. I was in clinic everyday last week (had the weekend off) for IV fluids, IV caffeine, etc. I had my 3rd Lumbar Puncture this past Tuesday and so far so good. I adhered to complete bed rest and was prescribed steroids for 3 days to help things along. Tomorrow I’ll return to clinic for more IV fluids and then probably won’t have to return until next Tuesday for my 4th LP. My 5th and final LP is scheduled for the 28th. My numbers are really good (W=3400; R=3.24; P=115,000; H=10.20), so good in fact that I was taken off 3 of my prescriptions – at least for the time being.

Hallelujah!

My brother Brad is a 100% bone marrow transplant match. Hallelujah - need I say more?

From Friday Until Now

Sorry I've been unable to update for so long but that raging headache I told you about on Sunday is still with me and it's mightier than ever. I've been to Clinic everyday this week to receive IV fluids, IV caffeine and shots of Morphine. Each day there is improvement, but not enough to prevent feelings of nausea. Here is what happened as best I can explain.

Whenever a needle is placed into the spine it's always possible that the membrane (the Dura) that covers the injection site does not completely seal the hole as it should, causing a small amount of fluid to continuously seep out causing the pressure in the head to be low. A headache ensues and continues until the hole finally seals over. Caffeine and bed rest are two things that work the best. I'm told that this is not uncommon and can last for over a week (oh, great!).

The really bad news is that I've missed two of the three remaining Lumbar Punctures which are essential to having my transplant. So, enough of this nonsence - let's move on already! Next LP - Tuesday.

Not A Good Weekend

I've been laying in bed since Friday night nursing a raging headache from my Lumbar Puncture on Thursday. I was told that each one I get will be more and more debilitating. Next time I will rest in bed and take in a lot of caffeine instead of thinking "gee, I feel just fine". To compound the problem I can't take any type of headache remedy. Another lesson learned. More to come when I'm feeling better.

News on Bone Marrow Donor No. 1

The news is in, my sister Carolyn is not a bone marrow donor match. While this is devastating news to all of us, I know I must stay focused on the odds - I still have 2 other siblings who each have a 25% chance of matching. Donna's results will be ready in less than 2 weeks and Brad's in a little over 2 weeks. And, lets not forget about the National Marrow Donor Registry. Admittedly this news shakes my core, but I have tried to prepare for just this kind of let down ever since I first heard the shocking words "you have leukemia". So gang, let's all think good thoughts and get that positive mojo thing going!