Richard Devine

Day +191

2011-01-03T13:37:00.000-08:00

Well, I got my strength back in my legs and arms. I can finally climb my stairs unassisted. I'm still only 152 pounds (I've lost about 70 pounds), but I'm getting there. I currently have some Graft vs Host Disease in the form of a rash over most of my body, but that will go away.

I'm getting out and about more these days too.

I'm having a few issues with side effects with medications, but other than that, I'm doing well. I'm getting stronger every day, and hope to return to work physically (not just from home) soon.

When they said six months to a year for recovery, they meant it. I thought I would be further along than I am now, but I have to consider the muscle atrophy as a major setback. It put me back at least two to three months.

In any case, I'm getting back to the strength level I was at when I came home from the hospital initially.

Not all food tastes like it should. My taste buds are getting back to normal, but that's a long steady process too, from what I understand. I can't wait until I can taste food normal again.

Between my last post and this one, I've had a series of blood clots form in my right leg. They had to do surgery and install filters along the main arteries to my lungs, heart and brain. If a clot breaks through, it won't give me a heart attack, stroke or head for my lungs. I'm on blood thinners to dissolve the clots and get back to normal.

Also since then, I've fully recovered from the Acytes (all that fluid that had built up in my abdomen). It's completely gone, and I feel human again.

I also suffered a terrible fall in my bathroom. I fell straight across my tub right on my neck like a guillotine. My neck hit the side of the tub, and my chin slammed against the inside of the tub. 911 and an ambulance took me to the hospital. I took a few stitches to my chin and my voice is shot. I thought I broke my neck, but I didn't, thank God. It's going to take a long time for my voice to return to normal. In the meantime, I just do what I can.

I get good news every time I go for an appointment at City of Hope. They did another bone marrow biopsy (I think it was number 15 or 16 - I can't keep count anymore). I'm still 100% donor and there is still no cancer. I'm due for another bone marrow biopsy soon. I'm expecting the results to be the same.

As I close, I'd just like to say thank you to everyone for all their love and support. I really do appreciate it tremendously...

Day +90

2010-09-24T10:50:00.000-07:00

Day 90 and I'm back at work. My leg and arm muscles are still weak, but I'm working to build them back. That's my biggest challenge now. I have to get my strength back. I walk and do exercises with a physical therapist, but the home visits have only two left. After that, I'm on my own to get them done.

Anyway, they lifted my dietary restrictions. Since I'm only ten days away from day 100, they said I have no restriction as long as I make it at home. Finally, I can eat a salad. Believe it or not. When you are restricted to hot cooked food only, you crave things like radishes and fresh lettuce. I can't go to a restaurant or fast food, but that's ok with me. At least I can finally have a salad or eat guacamole.

10 days to day 100. Yay - getting close - buy buy mask - hello fresh air!

Day +68

2010-09-02T22:07:00.000-07:00

I was at City of Hope all day. They gave me an infusion of immunoglobulen. Low numbers in my blood counts said I needed an infusion to fight bacterial infections. I wasn't doing it on my own.

It was a really long day (7 to 5), and they also gave me the drainage procedure. YA! You are not going to believe how much fluid they pulled out. And they didn't take it all, because it would be too much for my system to be that full and then completely empty. They pulled out a little over four liters of fluid. That's two giant two liter soda bottles. That's ten pounds of fluid I was carrying around in front of me. That's more than a baby!

Anyway, I finally have relief. Maybe now that I'm free from the water belly, I'll be able to get around better.

Day +66

2010-08-31T21:23:00.000-07:00

Its been a hectic week of clinical visits, procedures, blood draws, you name it.

Ultrasound today confirmed a diagnosis for the horrible, bloated belly. Its "ascites", the fluid buildup outside the organs in the surrounding tissue. They've got me on a special med (specialized diuretic), but they are going to schedule a procedure to remove the fluid. They are literally going to lay me down, poke a hole in my abdomen, insert a catheter, and drain the fluid out. They say it will bring instant relief, and I'll leave the procedure with an abdomen that looks pretty much normal without any fluid.

I'm impatient, so I can't wait for the procedure (even though I will be awake through it). Heck I'll bite a stick if they want me to. Just get this fluid out of me. In the meantime, I continue to take the medicine.

The imunoglobulin infusion is scheduled for Thursday, so we'll see how that goes.

I just wanted to drop a few updates today. Everything remains unchanged. I'm just taking it as it comes.

Day +65

2010-08-30T18:04:00.000-07:00

Had a clinical visit at City of Hope today. Great news! ALL of my markers for complete graft came out at 100% again (a couple more markers showed 100% even from last testing).

There were a few issues with my regular lab work from today. My platelets are continually coming down (not good), white counts were low (again), and a couple other markers were troublesome. Good news on that is it's medicine related. My bone marrow is working perfectly. It's producing everything it's supposed to, but the medicines are still chewing up the cells. So they discontinued a medicine, adjusted others. I expect by my next clinical appointment on Thursday that my numbers will be going back up again.

I'm still weak, so standing from a sitting position is very difficult. Also, climbing my stairs at home has become almost an impossible task. I can't wait until these medicines flush completely out of my system. I'll start feeling human again.

My belly looks like I'm eight months pregnant, and it's hard as a rock. I have a scan scheduled for this week to see if the abdomen is swollen from GVHD or if there is a fluid buildup outside my organs in my stomach and intestines. In the meantime, the doctor has given me a specialized diuretic that is supposed to clear the fluid if that is what it is.

He didn't want to wait for the imaging test results, so he started me on them today. I started taking the specialized diuretic today, and I can actually feel it working physically. So I think the scan is only going to confirm that I have fluid buildup outside the organs. If that's the case, I'm finally going to have relief from this bloated, painful belly.

I got a call today from City of Hope that I need an infusion of imunoglobulin. It's a crucial part of fighting bacterial infections in your system. My levels on that were low today apparently, so I'm going in for infusion this week.

In any case, each day brings its own challenges. I have to take this one day at a time (not easy for me). I should be out of the woods with this chapter pretty soon.

Day +61

2010-08-26T21:42:00.001-07:00

Well here we are at day +61. Recent days are really presenting new challenges. Post transplant comes with a dizzying quantity of prescription medicines. I'm currently managing over 20 different prescriptions multiple times throughout the day on an almost unmanageable schedule.

I've been experiencing a gradually increasing fatigue in my muscles (upper thighs especially). My strength has been weakening, and I can't sleep at night. I've been getting about three hours a night for quite some time. Sleeping pills haven't been working.

Hopefully that is all beginning to change as of today.

I fell at the top of my stairs last night. I hard to crawl to my bedroom and onto my bed to get up. I had planned on reporting that at my clinical visit today. But it turns out I had more to report than I expected.

When we got to the City of Hope, Corless dropped me off at the front door area. I got out of the car and stepped up a curb. When I did, my thigh muscled gave out, and I took a nasty fall onto the sidewalk. Corless and a nurse tried to lift me into a wheelchair, but they couldn't lift me all the way. A big man showed up and lifted me into the chair.

Once I was wheeled to the clinical area, it was able to get out of the wheelchair and resume normal walking.

I reported all of this at clinical (including the cuts on my knee - which they treated). So the doctor finally discontinued four medicines and cut back a couple more. Thus medicines where doing more harm and the balance between benefit and detriments had finally swung too far. I can't be falling down and not sleeping and enduring ever increasing fatigue. Besides, the medicines were chewing up my platelets, white cells and a good deal of my blood markers. So those numbers are supposed to improve.

Overall, it comes to a balancing act between anti rejection drugs, GVHD drugs, drugs to help improve post transplant recovery, and the ultimate benefits. Managing the drugs and the effects on my recovery are challenging, but ultimately I am constantly improving. Some days I have more challenges, but I know I've come such a long way in a relatively short time (61 days).

So I thank God for every day, because I know this is all leading back to a normal life. It's a long slow recovery, but at the end of this road is a normal, long, healthy and happy future.

Day +53

2010-08-18T22:13:00.001-07:00

Today is day 53. I had another bone marrow biopsy yesterday. It’s my 12th one. After the first one, I swore I'd never let them do that to me again. I have another clinical visit tomorrow.

What was nice about the bone marrow biopsy this time was that they actually put me completely unconscious for the procedure. I had always previously been completely awake for the entire thing, and let me tell you it is the most excruciating thing imaginable, even with the iv pain medication and the local anesthetics.
The last time my doctor at City of Hope did the last biopsy, he promised me he'd never put me through that again. True to his word, he didn't.

Funny story about the biopsy: When we started, they needed me to roll over onto my stomach, because they pull the biopsy from the back of the pelvis, just above your rear end. The way the doctor asked me to roll over was hilarious. She said "I need you to roll over sunny side up for me". I started laughing, and of course I chimed in. I said "You mean moons over my hammy"? Of course they started laughing, and the entire thing got out of control with the euphemisms. So it started out fun, which was great.

Because it was a procedure where they put me out, they had to do it in a special O.R. type section of the hospital with an anesthesiologist etc. The anesthesiologist was pushing the unconscious medication into my pic line, and he said "You have about 10 seconds. Start counting from 10.” So I started counting. I don't think I made it to 4. Then I started complaining that I just couldn't go out, and I asked him to give me more. They all started laughing, and the doctor that did the procedure said "Sweet you're done. I need you to roll over onto your back. You are in recovery."

Wow, that was fantastic. I don't remember a thing. I didn't feel a thing And with the pain medication they put into me in recovery, I never felt any pain afterward. I can't believe I ever endured the other 11 biopsies.
We're supposed to go over the results of the bone marrow biopsy tomorrow. Bone marrow biopsy after transplant is a milestone. They are looking for any anomalies such as immature cells, mutated cells, cells that don't look like their acting right and make sure the new transplant is producing enough fresh, life sustaining blood and marrow to crowd out all the old fibrous tissue that had formed during the myelofibrosis.

I'm completely cured by the bone marrow transplant. I don't have myelofibrosis anymore. They just use the bone marrow biopsy as the test that everything is truly going as expected.

So I'm expecting another good report tomorrow. I'll update to let everyone know how it went.

Approaching Day +50

2010-08-13T21:25:00.000-07:00

Sunday will be day +50 of 100 days. I'm almost half way to taking off my masks and eating an unrestricted diet. Day 100 is also the day the City of Hope starts scaling back my clinical visits, so I won't have to travel so far so often. Day 100 is a true milestone, so I'm excited to be half way.

I want to take this time to get some information out to everyone and express how truly important it is that you give it some serious consideration. It saved my life.

I'm surprised how many bone marrow donors are out there that I run into in my daily life and wouldn't even know it. My pharmacist is a donor - a neighbor, a friend, a cousin, check out clerk. I'm continually surprised. (it comes up because I'm wearing a mask and rubber gloves everywhere - people ask) Two of my dear friends became donors because of my journey.

I also learned recently that a friend's cousin who is Japanese had a donor who flew in from Japan, gave the donation and flew back to Japan. Amazing - makes me emotional.

Thousands of patients hope for a bone marrow donor who can make their life-saving transplant possible. They depend on people like you. You have the power to save a life. Take the first step today.

If you want to consider registering with the National Bone Marrow Donor Program, here is the information:

http://www.marrow.org/ - click on the "Join the Registry" tab.

Take the first step to saving a life.

Day +41

2010-08-06T11:45:00.000-07:00

Day +41 and more good news! The results of my recent DNA testing are in, and the DNA in my bone marrow and circulating blood stream is 100% donor. There is no more Richard in the bone marrow or circulating blood. What that means is the transplant has taken 100% - HALLELUJAH!

My normal DNA is still the same. My personal DNA in my body hasn't changed, and it shouldn't. But the transplant has fully grafted. 100% success!

The rest of my numbers all look good again. Some of them are holding, and some of them are increasing. I look forward to the coming weeks as I get better and better.

Day +100 here I come. (that's the day they consider you out of the woods and clinical visits scale back and they just monitor every few weeks until they completely release you to have a great healthy rest of your life.

It was truly the best news I've had in a long time, and I'm so blessed and so grateful!

I'll see you all soon!

Day +38

2010-08-03T12:45:00.000-07:00

Well, I'm 38 days into recovery after the bone marrow transplant, and everything is going remarkably. I had my second clinical visit yesterday at the City of Hope. Everything is going in the right direction. In fact, my white counts are in the normal range (low to mid, but NORMAL). My platelets are NORMAL. My hemoglobin (red cells) are NORMAL range (low, but NORMAL). All the other markers they look for in the blood (about 70 different ones) are all in a good place. There are no signs or indications in any tests so far that there are any cancer cells anywhere or any abnormal cells that may manifest into cancer cells at any later date.

The graft has taken, and everything is going in the right direction. The donor cells have completely taken over, and there is very little, if any of me left in there. My new blood type went from B+ to A+ (weird), so that's been causing some minor complications and impeding the progress of the development of the red blood cells and such. But that's all transient, and will resolve itself over the next few months and just become normal.

I am experiencing some Acute Graft to Host Disease (GVHD) - definition: the donor cells recognizing my own body as foreign and creating an immune attack on me. My stomach and intestines are still swollen, but I'm taking meds for that, and it should resolve itself over the next few months. The only thing that is actually irritating me at the moment is that I have a very swollen, bloated belly like a pregnant woman. The only other complication of the is a recurring rash with itching all over my upper body (shoulders, chest back and arms). I'm taking meds for that too and treating the itching with creams and powders, and that too will resolve itself over the next few months.

So as I recover, I've been told that the "Acute" GVHD is what they want.

There are two types of GVHD. One is known as "Acute", and the symptoms appear immediately. It's the physical response of the transplant creating an immune response to my body as foreign and needing to be dealt with. Early GVHD is a good sign that the graft has taken and is trying to deal with the new environment. Acute GVHD is the one that resolves after a few months, and there are no future problems.

The other type of GVHD is "Chronic". That is when the immune responses start later and never goes away. Chronic GVHD has to be dealt with for life. Chronic involves things like skin problems, liver trouble, chronic intestinal issues or other conditions you don't want to deal with for life.

So the acute stuff I'm dealing with is in the category of the standard stuff they expect and deal with. And in the end, the acute stuff resolves itself in a few months, and I'll never look back.

I also found out that my donor was a local 42 year old male! I couldn't believe it. The chances of that were impossible! As you can imagine, finding a donor match after my brother Cory (the best possible donor) was not a match, was prospectively not possible. But for me, not only was it possible to find this donor, the donor was my age, my gender, my heritage (Italian Irish etc), my exact immune match (HLA - human leukocyte antigen), nearly my exact chromosome match and my exact match in most of the DNA markers they look for. And they found the donor so fast, it was unheard of. Timing was perfect, and so was the donor. Do you realize how impossible that is!!!! ?

When I say the timing was perfect, I mean that if they didn't find the donor when they did, I wouldn't be typing this now. I was out of time, and I would have been gone by today. I had really no more marrow left in my body to produce enough life sustaining blood to keep me alive, and I was making more and more frequent emergency trips to the ER, clinging to life. Each emergency trip was worse that any before it.

In fact, the last trip to the ER (when I was losing all that blood - 32 hours of transfusions etc.), I was actually not expected to make it. I remember talking with one of the doctors that was going to perform a procedure, and I could physically see the fear on his face. He told me I had put him in a position that he never wanted to be in. He said it was going to be possible I wouldn't survive the procedure, so he was in the position of either successfully performing the procedure - from which I could die in short order. Or I would not survive the procedure, and he would be in the position of standing over my dead body.

He said he had to tell me all this for the sake of disclosure, but it was very difficult to deal with. But you know what? I signed the papers and said "do it". At that point, I had been up against so many of these "this is it, you may not survive" situations that I didn't care. If I did nothing, I'd be dead within a few days. If I had the procedure, I may live (even if it did put him in a difficult position).

Well you all know how that worked out THANK GOD!

For two years I've been passing through this furnace. It should have destroyed me, and I should be dead now. But hallelujah I've passed through. I'm at the back door, and I can feel the cool air on my skin. The sunlight is shining, and I can feel it on my skin. I can smell the breeze, and it's wonderful. I don't smell the ashes anymore, and I'm about to step through the door and shut it behind me forever...

Day +32

2010-07-28T14:58:00.000-07:00

Well, they released me to go home last night. I got home around 5:00. I get to recover at home with clinical visits twice a week at the City of Hope. It's so nice to be home, I can't even tell you. I have about 21 meds I need to manage 4 times a day, so that's taking some coordination. But I'm grateful to be doing it myself.

It's a bright sunny day, cool and beautiful today. I'm sitting at my cafe table in my bedroom on the second floor looking out the window at folks hanging out at the pool. Such a better view than the view from a hospital bed.

No IV beeping, no tethers, no suiting up (my house is a safe haven). As long as I'm inside my house, I can be free to not wear a mask or anything like that. If I get visitors, I need to put a mask on. If I go outside, I need to put a mask on and use gloves when dealing with public spaces. Other than that, it's such a relief to be home.

I'm still in recovery (it's going to be a while), but at least I'm doing it at home. I'm well on my way to getting my normal life back...

Thanks to everyone for your constant support!

Day +28

2010-07-23T18:38:00.000-07:00

The last couple of days have been better and better. In fact, I'm up and about all day. I spend very little time in my room. I walk laps around this floor (4 laps = 1/2 mile - 8 laps = 1 mile). I try to walk a mile total each day. I'm currently walking 1/2 mile without stopping. I'm going to group recreational therapy, physical therapy, occupational therapy. I sit in the lobby and do puzzles, kick back, relax.

Corless and the girls just left from a very fun visit. We sat in the lobby and finished my puzzle, talked, played cards, hung out. They are coming back on Sunday for another visit before I go home. Yep, you heard me... go home.

It looks like I'm slated to go home on Tuesday. I'm eating real food. They've pulled me off of the IV nutrition (except at night while I'm sleeping - and they are going to pull me off that too). I'm told it's amazing how well my numbers have come up and how well I'm doing.

My platelets are in the normal range. My white cells are in the normal range. The only numbers that are taking their time coming up to normal are the red blood cells. I'm told the reason for that is because my donor blood type was A+. My normal blood type is B+. So not only have I had to graft and produce normal healthy blood from the new bone marrow, my body has also had to cope with completely changing blood type.

I noticed recently that from day 6 to day 20, I didn't post anything. That was a really dark period for me. It was probably the worst of it. It was a terrible valley. But I came up out of it, and it's amazing. One good thing is God has helped me block out most of it. There is actually a complete period in this that I don't really remember. I thank God for that.

Anyway, I'm doing so much better, I'm going home on Tuesday. I'll be doing this as an outpatient, making trips back here for appointments twice a week. It's still a very long road ahead, but it only gets better from here. I can't wait to start feeling normal, having normal activity at home and enjoying life.

It's a whole new beginning, and again.... I thank God for that !

Day +24

2010-07-20T16:09:00.000-07:00

I just want to thank everyone for all your support. I have been receiving you're notes and messages, comments and emails. I have read every one of them, and I cherish them all. Your words of encouragement have really been instumental in my getting well. I am so blessed, and again, I just want to thank you for all your support.

I'm feeling better every day. I feel like I've turned a corner or crossed a threshold of some kind.

I've been roaming the halls and getting out more. Physical therepy has been working with me. I'm eating real food (not much, but it's something). And I've only really had a few small setbacks lately as I push forward.

This towing tree of IV compinenets is widdling down to just a few pumps to keep my pic lines open. I've asked them to take pump units off as I don't need them anymore. It helps psychologically to see the progress on the IV tree. The smaller it gets, the more encouraged I feel to keep pushing forward. So it's now down to just a few lines. It also makes it easier to drag the tree around with me when I roam around.

Anyway, I just wanted to give everyone an update on my really great progress and say Thank you for all you're support. I really miss everyone, and I can't wait to get back to a real life again...

Day +21 After Transplant

2010-07-17T23:04:00.001-07:00

Today was a great day. Corless and Naomi came for a visit today and I actually feel much better than the past few days. After they left, I found out my blood counts were good enough to get out of my room. So I suited up in my three-piece gown mask gloves ensemble and ventured out.

I explored the hallways around my room. Then I ventured out into the large atrium lobby. The view of the mountains is so beautiful, I sat and did part of a puzzle that was already started. I actually spent a couple of hours out there. I think I'll try and do that every day until I get to go home.

I felt so good today, I tried real food. Until now, I've been on a feeding tube through the IV. I'm still on the feeding tube, but if I can get on to real food, it will be another step toward home.

I've been in here for weeks already. I just can't stand the thought of being in here even more weeks. I have to turn things around. I want to go home.

The sooner I can get there, the better off I'll be. So please continue to pray for my recovery. I know I have an army out there, and I know how incredibly blessed I really am to have you.

Day +20

2010-07-17T00:16:00.001-07:00

It's day +20 and I'm trying to stay positive and keep pushing forward. I've been away for awhile because the physical recovery has been so difficult. I'm feeling a little better today so I thought I'd write a bit down.

Communication has been difficult because one of the main intirejection drugs has given me tremors in my hands so bad its almost impossible to deal with. The drug was also giving me hallucinations and giving me some psychoses. They took me off of it and I've been working with the psychiatrist. I'm told it gets better the farther away from the drug you get. I'm looking forward to that.

Tonight I went to the restroom and stopped to wash my hands. I caught a horrifyingly glimpse of myself in the mirror and I started to cry. My immediate response was that I looked like so much death.

But it only took m a moment to realize that what I was looking at had no death in it. What I was looking at was completely new life... renewed and regenerative

Hallelujah

Day +6

2010-07-02T22:54:00.001-07:00

Well, rounding out 6 days after transplant. The farther I get from day zero (transplant day), the more encouraged I get about the prospects of my new life. The last few days have been really tough. I won't go into details. Let's just say I got through them, and im feeling much better.

Every day that I'm still here at City of Hope is another day I learn how much I'm not in this alone. I have been meeting patients, doctors, nurses and staff that have already done it and survived.

The resources here are amazing, and their approach is phenomenal. I feel more than ever how incredibly blessed I've been through this journey.

I just found out today, having the story I've had going throught this, that my doctor was named one of the top doctors in the United States.

So day +6 has been a real day of reflection for me - mostly on how blessed I am and how much better I feel. It's been so important and wonderful all the love and support I've been getting.

Love to everyone reading this. Have a great 4th of July weekend. Can't wait to start seeing everyone again.

Day +1

2010-06-27T03:05:00.001-07:00

" Happy Birthday ", screamed hospital staff as I rounded out the last few hours of my bone marrow transplant. My new life had already begun...

Today promises to be an even easier day ( yesterday was no picnic for sure - but hopefully today will be the beginning of an entirely different set of complications...

The next two weeks are critical. I ill be receiving anti rejection regiments coupled with anti-nausea meds and a series of blood transfusions. They will be dealing with any complications as well, should they arise.

Just knowing that I'm on this side of It is so reassuring and comforting.

I found out I am able to meet my donor in a year. I still drop my jaw when I think how incredibly generous a donor is. In fact, I found out my donor gave twice as much marrow as needed just in case I had any complications. I didn't, Thank God. But how amazing is that when a stranger goes through all that for someone they have never met. I feel so incredibly blessed to be alive to type this note to you all.

The love and support from my family and friends has been overwhelming. Now I get to add one more name to the list - my donor's name as soon as I find out what it is.

I Hope everyone has a blessed day, because I'm looking forward to many, many more of them....

Day 0

2010-06-26T08:23:00.001-07:00

Day 0 is upon me. That means no more chemo and no more radiation. I'm. Just waiting here for my transplant. It will be around early morning today...

The weakness, nauseia and vomiting will persist over the next few days. But it will all get easier and easier. They've been feeding me through the IV . Hopefully over the next week for so, I will be able to eat with my mouth.

There are goifng to be ups and Downs, but the Downs are only a pitstop. It's the ups I'm looking forward to.

For now, just let me say that I'm greatful for Day zeros. It also means so much to me all the love and support I'm receiving mfom all of you. ...

Day -3

2010-06-23T22:35:00.001-07:00

Well, day -3 is almost behind me. Chemo is over, and I'm on a regiment of total body irradiation. All of the residual from the chemo are in full force. I have constant vomiting (even while hanging on the wall receiving radiation). I don't want to go into all that is happening. Let's just say it's more than anyone shroud have to deal with, and trust me when I say you don't really Want to know.

I keep telling myself that I have to keep pushing forward. Going back is no longer an option. It only means certain death for me. So I have to just keep pushing up out of this valley and on into my new life.

It's terrible beyond words right now, but they keep promising me it will get better and better.

The one constant that helps me go through his is knowing that the Lord is my shepherd, I shall not want, He makes me to lie down in green pastures, he leads me beside the still waters, he restores my soul, He leads me in the path of righteousness for his mane sake, and though I walk through the valley of the shadow of death, I will fear no evil, for you are with me, your rod and your staff, they comfort me, you prepare a tabs before me in the presence of my enemies, you anoint my head with oil and my cups runs over, surely goodness and merci will follow me all the days of my life. And i will dwell in the house of the Lord forever. Amen!

Day -6

2010-06-20T07:29:00.001-07:00

It's 7:00 am and I'm just waking from my first chemo session to kill my bone marrow and begin preparing it for transplant. I'm getting session two today. They completely knocked me out for the process. I'm so grateful for that. Here at the City of Hope, I have my own room (of course) with a beautiful floor to curling view of the mountains. The staff is so great here. Although the process is going to be the most radical yet, I know this isn't just treatment. It's the cure! Thank God. I also don't feel so alone here like I did in the hospital. Here I'm surrounded by people going through exactly the same thing I am. And with the physical theorapist, doctors, patients and all the things to do here, I don't feel so alone. I'm able to setup the two way video conferencing, so I get to kiss my kids goodnight each day.

I get blocked tomorrow in radiation where they make the final measurements and cover me with blue-black ink that looks like tattoos. They're not, thank goodness (I asked). They only last a few weeks.

In any case, I seem to be handling it OK so far. You can't see it in the picture, but im hooked up to about eight different IV meds. The main one is the chemo. The others are all support meds and are coupled with handfulls of oral meds (one of them is a horse pill).

Into the single digit countdown - yay!

Day -10

2010-06-16T05:43:00.001-07:00

Well, today is day negative ten. The countdown clock has officially started. I didn't realize how freaked out I am about the prospect of going through all of this and about the challenges ahead as I come out the other side.

It's 4:00 in the morning, and I'm staring at the wall. I can't sleep. On this official countdown day of t-10, I have an appointment to get a pick line installed. I guess past experience tells me that this is the day when I officially become tethered to the hospital. And I will be until the day they remove it and send me home. They'll be feeding me through it, administering medications and chemo through it, transfusing blood through it, drawing blood throigh it and anything else that would normally be done through through an IV or needle poke.

Day -10 means I'm getting admitted in three days. Getting admitted means I start chemo. Starting chemo means I Start all over full body radiation. Starting full body radiation means I'll be hanging from a harness on the wall while they envelope me in radiation from across the room while watching me on closed circuit TV. For some reason, that is scaring the crap out of me.

Day -10 also means I'll be admitted in a few days. And being admitted means I'll start isolation. Being in isolation means I can't see my kids for six weeks. And I'm already stressing out about that a little bit.

I found out that I had a one in five thousand chance of finding a donor match, and they actually found one. And now here I am just a few days away from being admitted for transplant. It doesn't seem real. But here I am staring at the wall at 4:00 in the morning while everyone in my house sleeps soundly waiting for the sun to rise to start another new day. This is about as real as it can get.

I look forward to many many more years of waking up to the sun rising and starting a brand new day...

Transplant is All Set

2010-06-11T09:27:00.000-07:00

I had my appointment yesterday at City of Hope. I had another bone marrow biopsy (it was horrendous as usual). But I got a promise from the Dr. that all future bone marrow biopsies will be done under heavy sudation. I will be completely out for the rest of them. YAY! Pray you never need one… I’ve had NINE!

It looks like my transplant is set in stone. I start pre-transplant procedures next week. They’re installing a pick line (an internal catheter that runs from underarm into my body around the general area of my heart). That line will stay in so they can feed everything they need through that line (food, blood, medications, chemotherapy etc…) They are going to start daily injections to build up my mucosa – (the cell lining that makes up the inside of your mouth, stomach and intestines). That way, when chemo and radiation strip away my stomach lining and intestines and the sores in my mouth start forming, the extra layers of mucosa will help buffer the severity of the reactions.

I will be receiving high dose radical chemotherapy and full body radiation for 9 days preceding the transplant.

I’m being admitted on the 19th (that’s next Saturday), and my transplant day (day zero) is on Sunday, the 26th.

This is exciting and scary at the same time. It’s going to be terrible, but I “think” I’m ready. Bring it on. Let’s get this thing over with. Once it’s over, and I’ve recovered, I will be cured. Recovery will take quite some time, but once I’m recovered, I can look forward to celebrating my 90th birthday (or more)…

I'm Ready For My Close-Up

2010-06-03T14:13:00.000-07:00

Well, I spent the Memorial Day holiday weekend in the hospital. The last chemo really took a toll. Apparently you can’t live without blood. I went unconscious at home again, and was taken to the ER where they started a 36 hour round the clock series of blood transfusions and medications. I was losing a lot of blood to internal bleeding, and they needed to stabilize me before they could do anything further.

All of my blood counts had gone straight down. My white cell count (immune cells) went down to .06 ( should be 4.3 – 10.8 ) and my red cell count (hemoglobin) went down to 5 or 6 (should be 14 – 17 ).

Once they stabilized my blood counts (white cells at .09 and hemoglobin at 8.9) and temporarily stopped the internal bleeding, they were able to give me an endoscopy and a colonoscopy (camera down the throat and up the … from the rooter to the tooter as they say). They were looking for signs of hemorrhaging in my stomach, upper intestines and lower intestines. They found some, and were able to inject localized medications while inside with the cameras. They also took one biopsy while they were at it. I don’t know the results yet.

I spent the next couple of days under observation hooked up to monitors in isolation. When they were satisfied my numbers weren’t dropping any more, they let me go home.

My white cell count is still only at .08, so I have to wear a mask (even in my own house), and I can’t go out in public yet. Everything has to be so sterile, and I have to eat a specific diet that doesn’t include anything fresh. I still have severe bruising all over my body, but I’m feeling so much better.

My youngest daughter, Naomi, got so upset when I came out of the hospital wearing the mask that a friend of mine suggested we all make a craft project out of the masks. So that’s exactly what we did.

Transplant is just around the corner, so I won’t have to endure any more chemo for the leukemia. No more trips to the ER. No more bleeding. No more bruises. No more masks. No more isolation. No more…..

Tentative Transplant Day

2010-05-28T20:04:00.001-07:00

City of Hope has given me a tentative "day zero" (transplant day).

On June 18th, I start oral chemo.

On June 21st I am admitted to the City of Hope to start six days of chemo designed to kill all my bone marrow and completely obliterate my entire immune system.

June 27th is day zero.

I'm excited and anxious at the same time. It's a total mixed bag.

I'll post more updates as they come.

They Found a Match!

2010-05-27T19:03:00.001-07:00

City of Hope has found a match for the bone marrrow transplant. After months of tests from HLA, DNA, bone marrow biopsies and blood draws (too many to count - I'm surprised I have any blood left), we finally have a match.

I have an appointment at City of Hope to start the process, which involves (you guessed it) more labwork and an appointment with the doctor overseeing the transplant process. On the 10th, my appointment will be to layout the timeline and start preparing for "day zero" (transplant day).

I don't know at this point when the transplant will be. All I know is the process starts on June 10th at 2:00.

The "Maintenance" Chemo Side Effects Have Started

2010-05-23T15:07:00.000-07:00

The first in a line of side effects from the latest "maintenance" chemo have started...

My abdomen is so swollen, I look like I'm about to give birth. I'm slowly seeing this condition get better. It should be better within about the next week.

The general "cancer pain" is a neusance, but standard pain relievers take care of that most of the time.

I'm trying not to get dehydrated at this point. After the last chemo (a month in the hospital) I was readmitted with pancreatitis (the pain was unbearable) and I was on NPO (nothing by mouth - not even water) for a few days. I got over that and was discharged. Soon after, I began vomiting and became completely dehydrated and had to undergo three days of hydration theorapy at the oncologist's office. Basically, it's just getting hooked up to the IV for infusion for three hours while you sit in a giant overstuffed leather recliner and sleep.

The results were amazing. I was human again.

I went to the ER last night with ulcerations in my eyes. Yikes! The chemo worked a new side effect into the mix this time...

I got a perscription for some steroid drops with antibiotics in them to take at home for the next few days. I can't really see, and what I can see is through a thick fog. It's as though I'm always walking around inside a thick cloud of dense smoke...

I'm taking lots of precautions, and keeping myself healthy. I'm keeping up my exercise so I don't become too deconditioned before transplant. And I'm staying away from people (I've been advised to do that).

My immunes are very low, and my risk of bleeding is very high. So I'm taking one day at a time getting stronger and healthier.

Transplant.... here I come......

Latest Round of Chemo

2010-05-20T19:26:00.000-07:00

I heard from a friend that this diet is agreeing with me...

I was recently hospitalized at Fountain Valley Regional for a round of "maintenance" chemo. By "maintenance", they mean that I'm completely cancer free (no signs in my blood stream, and none in the bone marrow - also, my bone marrow isn't trying to act up or produce any more cancer).

This "maintenance" was to keep the cancer from returning. About two months ago, the myelofibrosis advanced and turned into Acute Leukemia. I fell out unconsious upstairs at home, and Corless had to call 911. I was rushed to the ER at Fountain Valley Regional, where they diagnosed the Acute Leukemia. My counts were skyrocketing ( I had a cancer count of over 50% ), and they had to act fast. They admitted me, and I started my first round of chemo to try and deal with the leukemia...

The month long treatment was successful! I am completely cancer free!!!!!

I'm still dealing with the myelofibrosis, and the only cure is a bone marrow transplant. So I have to keep getting "maintenance" chemo until the transplant. City of Hope is in the final stages of securing my donor. HLA and DNA matching are complete, and they are squaring away all the final steps before transplant. I'm told transplant could be sometime as early as June.

Until then, I'm going to keep on pushing through...

From Myelofibrosis to Acute Myeloid Leukemia

2010-05-10T19:12:00.000-07:00

The myelofibrosis has developed into acute myeloid leukemia. I fell out unconsious at home, and Corless had to call 911. i had completely fallen unconsious on the floor upstairs. Corless was home, thank God, but she couldn't wake me. She called 911, and I was rushed to Fountain Valley Regional ER, where they discovered my cell counts were skyrocketing and the myelofibrosis had developed into acute leukemia. They had to act fast, so I was admitted and that began the journey through the first round of leukemia treatments with chemo...

My mother was in town from Hawaii, so she cancelled her return flight and stayed with me most of the time in the hospital. My mother was at the hospital in the mornings soon after I woke up, and left at night most of the time. She and Corless took turns baby sitting me. It was nice. I really appreciate them being there. It was comforting, even if they did just did stare at me while I was unconsious most of the time...

I was in the hospital for a month with acute leukemia. That chemo did terrible things to me. I lost 45 pounds, all my hair fell out all over my entire body, my nails turned black, it stripped away my stomach lining and the lining of my intestines, sores in my stomach, throat and mouth and on and on…. The PAIN was probably the worst part. And there reached a point where I was throwing up every day all day long. There were times when they put me on N.P.O. – that’s nothing by mouth, not even water for several days. I was unconscious most of that month. There were times Corless came to visit (4 or 5 hours at a time) and I didn’t even know she had come.

I was quarantined and isolated. I couldn’t leave the room, and anyone who came in had to suit up with face masks and a bunch of paper cloths. I couldn’t have any fresh food, only cooked, no flowers, no books, no kids (I didn’t see my kids for a month – except through the window – they let me sit by the window and wave to them outside – it still makes me want to cry). When the nurses treated me, they wore masks, hats, paper gowns and rubber gloves (the dark green industrial up to your elbow type). It was to protect THEM, not me, from the chemo.

Then, slowly but surely, I got better. They let me go home. It took another three weeks to get back to normal (sort of). And now that I’m feeling so much better, I’m going in again for a 10 day “maintenance” chemo on Friday. I’m told it’s not nearly as radical as the first time, so I should get through it relatively unscathed.

I’m having a bone marrow transplant sometime in June. I’ll be at the City of Hope for a month or two. They are in the final stages of matching my donor through HLA and DNA testing etc… it’s been a long and complicated process, but I’m almost done. I can’t wait to get back to my normal life, feeling healthy again and pooping like a real boy…