Day 15

My counts went up - yea! They're nothing approaching normal but they're getting better. Today should be my last day on antibiotic IV infusion, it has worked very well. I'm still a little swollen but getting better and I may not need a transfusion. Amy and Kevin headed home yesterday, out from under the Blizzard of 2010 but stuck in Dallas on their way to Denver - one step at a time. Rob heads home to Austin this afternoon. I'm hoping we get a release from the hospital to head home to sunny Charlotte very soon. I'm feeling a lot better than I felt on day 7, 8, and 9 and recognize that it will take about 3 months to get back to normal.

Day14

I'm at home since day 11 at Barbara's. They sent me home with a bag of pills to take, including antibiotics for my ecoli bacteria. I went for a check-up yesterday. My arms and ankles are swollen and I have a rash on my chest and back due to an allergic reaction to the oral antibiotic I'm taking. So they switched me to an IV antibiotic and I have to go into the hospital for a 2 hour infusion over 3 days. It already seems to be working better. Also, my numbers went down and not up yesterday, may need a transfusion tomorrow. The doctor said this is a normal occurrence and nothing to worry about. They will go up, just need to keep fighting the fight.

Day 10

Merry Christmas everyone. I just got up and I feel pretty good, maybe today is the day to begin to turn the corner. We'll see what the numbers tell us in a couple of hours. Thank you Lord for seeing us through this, it couldn't have happened without your help.
They identified the bacteria in my blood, it's ecoli and we have it under control. My release date should be tomorrow. They'll give some oral medication and then it's just recovery time over the next couple of months.

Day 9

Merry Christmas eve to one and all. My temperature spiked to 101 overnight, so we're doing more antibiotics and have added blood as well as platelets to the mix because my blood pressure is very low. The blood counts are still way, way down but should start recovering over the next couple of days as my stem cells kick in. Raise a glass of wine to toast you're families, they're the most precious people in the world.
I met with Dr. Weisel and he indicted I have an unidentified bacteria in my bloodstream. If it doesn't resolve, I may have to be on IV antibiotics for the next 10 to 12 days. If they can put a name to it, I may be able to go on oral antibiotics. Here's praying that they figure it out. I have nightmare visions of what Angela,my sister in law,went through.

Day 8

I ran a temperature today which got as high as 103. So they pumped me full of antibiotics. They got the temperature down but will do some more work on me tonight at the apartment. I feel much better this afternoon than I did this morning - like death warmed over this morning. I expect that my numbers will start coming back up some time soon.

Day 7

Well, they cut my Lovenox shots to one a day because my blood counts are so low. Maybe today will be the bottom of this process and we'll begin the climb back up the mountain. I'm optimistic but very tired. I spent the afternoon with John Hughes yesterday, it was good to see John Boy.
We just got our blood counts back, they are going to give me platelets to tide me over. I may have reached my nadir as my WBC is just 0.2 but it could go to zero over night. From there the road to recovery is a few more days. I may be out of here by the weekend.

Day 6

We began Lovenox shots, two a day, one at the hospital and one at the apartment administered by Joanie. She practiced injecting a banana before she tried my abdomen - a very slippery proposition. It worked out well, so far so good. Pierre arrived yesterday, it was very good to see him. He looks fit and refreshed. I hope I start on the upward spiral so I can spend some time with folks outside of the hospital setting.

Day 5

Just having breakfast, cereal and a banana and some water. We ran into another bump in the road yesterday. I noticed that the left side of my face was swollen when we were at the hospital, the nurses got concerned and sent me over for a Doppler Test. So now I have blood clots on both sides of my body, yea, the first one is still there. Their sticking me with Lovenox again. Other than looking like a victim of a Mohammed Ali whooping, I am doing ok.

Day 4

I just got up and took care of the morning rituals. Today and the next two days are the days when the rubber meets the road in this first set of treatments. First thing that will happen this morning is they'll take my vital signs and the vampires will get a complete blood count through blood extracted from my PICC line, a device attached to a vein in my arm. They'll monitor my platelet counts and give me blood, O+ if I need it. Were any of you contacted for blood for me? Hackensack is fairly empty because of Christmas. We had the cancer care center and the nurses pretty much to ourselves yesterday. Today we'll move out to the waiting room on the 4th floor of the medical plaza building and watch some football if they'll let us do that. God has been good to us in this process, thank you.

Day 3

It's day three and I'm retaining H2O again so my weight is up by 12 lbs. and they are pumping me full of lassic just like the horses at the Meadowlands. I never knew what it was used for before now. My ankles and wrists are swollen but my blood clot appears to be gone.
So is all the rest of the hair on my head. John Murphy, a friend, and I would take a wonderful picture right now. We both have the same landscape on our upper deck.
Our attitude is good and the nursing staff in Hackensack is helping us through the fight.

Day 1

We had a visit from Patty and Margie this morning. It was very pleasant to have visitors. Dr. Donato stopped by at 3PM. She confirmed that I'm doing very well and went over the near future course of events. Tomorrow should be the same as today, Day 4 I'll get a shot of Neupogen which will spike my baby stem cells a bit, but on Days 5, 6, and 7 my blood counts will bottom out followed by them coming up prior to my release from this prison. Patty and Joan are out at the Paramus Mall divesting of some treasure for Christmas nephews and nieces with an occasional adult thrown onto the purchase process.

Day 0

It's day 0 because that's what it's called in hospital parlance.
We got reacquainted with six million of my old baby friends. It took about an hour to put them back into my bloodstream. I hope they're setting up a reunification party with my bone marrow where they'll hatch a plot to kill the multiple myeloma cells.
Needless to say I feel pretty good. That's mostly thanks to my best friend, Joan. She's been my anchor in this storm and every other opportunity for the last 35 years. She finds a way to land on the positive side of every one of life's challenges. When I wanted to start my own business, she not only encouraged me, she worked while I fulfilled my dream and ours. She feels the same way about Kevin's Runway Pilot business. She's not just a cheerleader, she speaks to every pilot and airline person with whom she comes in contact. She firmly believes in a positive outcome for my illness. Who am I to disagree, Joan has mentored us to success for over 35 years.God blessed me and every one with Joan, she's fun, outgoing, and travels life's highway with a glass that's always half full, never empty. I love her with every breath I take.

Day -1

It's the day before the transplant, the day of chemotherapy. Joan and I just got up, it's 6AM and we're due at the hospital at 8AM. I don't know when I'll be able to post again, it depends on how I feel. Thanks to all of you who have been walking through this forest with me. I'll post as soon as I can.
It's 3:30PM, I had my chemo from 12 to 1PM with lots of ice chips from 12 to 2:30, so far so good - thank you God. I'm being IV hydrated and had diuretic via IV as well. I'm also drinking water by the gallon and going to the John about every 15 minutes. I record the volume of my deposit and post it on a grease board so the nurses can record it to my record, generally about 450ML, I think, per deposit. If I was a two year old, I'd be proud.

Day 145

It's the eve of the beginning of the transplant process. When we met with Dr. Rowley and Kelly Kobbe on the 7th, Kelly went over the process in great detail. It was daunting to me, to say the least. Tomorrow, I'll get a one hour infusion of melphalan. During the infusion and for one hour afterward I'll be chewing on ice chips to help prevent mouth and throat sores, they'll also give me a specialized drug to help prevent the same thing. Melphalan is a particularly effective but nasty bit of chemotherapy which will clear out of my system for the purposes of the transplant within 24 hours but will have effects for the next several months.. It will empty my bone marrow and immune system in preparation for the transplant (rescue) on Tuesday. They are concerned that I'll have the ability and energy to eat and retain food. They'll also have me on a variety of anti-nausea medications with an added something or other for constipation or dirrarhea. Some transfusions may also be necessary during this time frame (type O+).
I pray that God gives me the mental and physical strength to get through this in good shape and also help Joan as she will have to be hauling me back and forth between the hospital and the hospital provided apartment. There's a prayer my mother used to have us say when we were getting ready for bed every night that keeps bouncing around my head. We would kneel by the side of our bed and say this prayer before turning in, I'm sure most people have heard it:

"Now I lay me down to sleep
I pray the Lord my soul to keep
If I should die before I wake
I pray the Lord my soul to take."

Sorry to have such maudlin thoughts but this is the final step in this part of the journey and I'm a little distracted.

Day 144

I've had a little bit of trouble with my Lovenox injections. My lower abdomen looks like a combat zone. It's red and black and blue on both sides of my navel. We called Dr. Rowley last night because of the side effects and the fact that I was running out of real estate for my next injection. He ok'd me to stop the injections. My chest is not swollen, my vision isn't blurry, and I feel ok so he said yes to the stop of the injections. We are going to the hospital tomorrow afternoon for the installation of a PICC line on my left side.

Day 141

We went to the vascular lab at Hackensack yesterday so they could image my neck and right arm to confirm or deny a blood clot. They confirmed the blood clot so there's another small bump in the road. I've been put on Lovenox, 80mg twice a day, injections administered in my lower abdomen by me at home. I don't know what impact this will have on the transplant schedule but I do know that I have to get rid of the blood clot. I'm concerned about putting in a pic line while I'm on Lovenox, a blood thinner. I'll talk to the folks in Hackensack when they call my to schedule my pic insertion and schedule my hip MRI.
The schedule for the transplant will slip by one day and begin on Tuesday, the 14th. The pic will be inserted on Monday, the 13th. we'll have to discontinue Lovenox on Sunday night and restart it's use on Monday night.

Day 139

Today we meet with Dr Rowley to review the data so far and decide on next steps after the Autologus Stem Cell Transplant (ASCT). I'm eligible for a clinical trial which is a cocktail of nasty drugs in heretofor untested combination. I don't feel good about going that route since the only result that I can see with chemotherapy of any kind is the buying of some time if it is successful. There's no cure along that highway. The second proposition is a mini-allogeneic stem cell transplant with donor cells from my brother Edward. There is a potential cure at the end of this process but there are potential hazards also. It is a high risk process with a curative potential. This is a maybe, it depends on what type of riverboat gambler I am. The third possibility is a tandem ASCT, another ASCT.It may yield a longer survival while we pray for a cure.These are the realities of MM.
One thing that has happened over the past several days is that my beard has stopped growing. So I haven't had to shave. So I can say beyond a shadow of a doubt that chemotherapy provides a temporary cure for the common shave.
We just got back from Hackensack and our meeting with Dr. Rowley. He went over all my options except the mini-allogeneic and he examined my catherter which has been causing me some pain. My neck is very swollen and it turns out I have a blood clot and he had to rip out the catheter. They couldn't put in any blood thinners because of the hole in my chest. I have to sleep in an uprite position tonight and I have to go in to the hospital tomorrow for a Doppler, whatever that is. If I wind up short of breath tonight, I have to go to the Emergency Room. We also discussed the pain I'm having in my left leg at the balljoint and hip. They're going to do an MRI on that leg. So, it looks like I'll have a very busy rest of the week.

Day 135

Hey, We're on sabbatical from hospital care. We meet with Dr. Rowley on December 7, 2010 for a review of all of the data so far. We'll decide what the next steps after the transplant are at that time. There are several options. In the mean time We're just in recovery mode from everthing that has gone on thus far.
I'm feeling both good and positive. With all of the research that's going on with blood cancers I'm hopeful that we will progress to a cure or at least that we're on the road to a cure. We're staying positive and are greatful for all of your support, prayers, and good wishes.

Day 132

Back pain is back this morning, right at the point where the left femur attaches to the hip. On a scale of 1 to 10 it's a 7 to an 8. I'm going to ask them to take a close look at the X-rays this morning or do an MRI to see what's going on. I'm out of pain pills so I'll wait till I see them later. We'll get numbers on yesterday's harvest this afternoon. I think it was probably pretty good. They did a series of checks yesterday because I'm retaining fluid, my weight went from 179 to 187 over the last couple of days and the staff is concerned. Other than that, everything is ok.
We got the astonishing numbers this afternoon. They harvested in excess of 10,000,000 million cells and I have over 14,000,000 million cells in the bank. My white blood cells are at 42CC and we decided to do another day of harvesting. Maybe they can use the additional cells for research. When they do the transplant (rescue) they reinfuse around 4,000,000 million cells. The rest are frozen and stored for more transplants down the road.
They said that the additional weight will go away over the next several days and that the acute back pain was due to the robust infusion of Neupogen and that it to, will pass. A normal level of white blood cells is 3 to 4CC, not 42CC. Anyway it looks like the next step will begin on December 14th with a one hour infusion of Melphalan followed by the transplant on the 15th and then isolation between the hospital and an apartment three blocks from the hospital over the next 12 days. They want me close by in case I need transfusions, etc. If all goes well I'll be on my way home on the 26th of December. Isn't the 26th Kathy Polizzi's birthday? Keep the prayers rolling in, they help.

Day 130

Went to Hackensack for Neupogen shots yesterday and today. I went for a walk yesterday with Melissa and today with Joan. My legs turned to rubber after 1/2 mile. It was a strange sensation, I'll ask about it tomorrow when we go for day three of the harvest. Patty and Kenny are over for a visit and staying for dinner, baked Ziti. Um, um, good.

Day 129

My first day of harvesting was unimpressive. I only got 200,000 stem cells and they want to harvest 12,000,000. But my count went from 3.6G/DL to 12.4G/DL so maybe the second day will be much better. We'll know on Monday. Judging by the amount of bone pain, it should be better. This is the first time I've ever used the words "pain" and "better" in the same sentence. Thanksgiving with Melissa and Joanie was very good. We had an oven stuffer roaster chicken instead of turkey, but Tara brought some turkey for me from Pennsyvania - thank you Tara. My Dad is coming over to see me this afternoon with Eileen and I'm looking forward to the visit. I'm suffering from a little bit of cabin fever but understand why things have to be the way they have to be.

Day 126

My stem cell count still hasn't reached the lofty pinnacle it needs to reach. It came up to 1.1 from .06 yesterday but it needs to go to 2.0 or better in order for them to collect. And there is another complication - Thanksgiving. They're freezing facility won't be open so if they collect tomorrow, there won't be any place to store my precious stem cells. I stand a chance of waiting a day. They told me that when my system produces enough stem cells, it can get a little bit uncomfortable, so, in a way, I hope that my counts are still low. Collection is a process that can take several days. It must be that Dock genetic make-up, we're late bloomers.
But bloom we do. My count went from 1.1 to 3.6 and they did my first day of harvest. I went for 4 hours to get what they needed from day one. They'll get the actual cell count Friday morning and then we'll do day two. Kelly gave us a date of December 8 for the transplant which depends on other factors but at least we have a target date. Oh by the way, so far Edward is the only match as a result of the HLA kits but some of the results that don't match me match each other. There are four kits for which we don't have the results.

Day 124

Today marks the transition to a new phase of treatment. I'll be going through the process of Apheresis, stem cell harvesting. I feel a little bit like the Borg in Star Treck. Anyway, I hope they get a several million cells today and tomorrow. It's an all day process. They hook-up to my catheter and pump my blood through a machine which spins the blood in a centrifuge to separate the stem cells from the rest of the blood. Then they pump the blood back into my artery through the other side of my port. I think the main effect from this should be fatigue. They keep doing it until they get enough cells for several transplants.
We're back at home, no harvesting of stem cells today, my numbers were to low. They gave me two more shots of Neupogen and we'll go back tomorrow morning to see if they can do it then. My stem cells need to be 2.0 or more, they were only 0.6 today. The nurse said the increase needed can happen quickly - we'll see.

Day 121

Joanie thinks she's coming down with a cold, so now I have to wear a mask around her and she's been banned to another bedroom. I hope she's wrong. They gave me my Neupogen in my lower abdomen (stomach) yesterday. It was my choice. I have an antinausea patch on my left arm and I didn't want to remove it and I'm not squemish about where I get the shots. When I had my knee replaced, I gave myself the shots of Cumaden in my abdomen, no big deal. Anyway, Joanie's going to stay in the car while I go in for my shots. I hope I don't have to wait to long.
Well we're back from the shooting gallery. They shot me in the underside of my right arm. There's two more days of shots and then they begin stem cell collection on Monday. I should have many baby stem cells floating around my blood stream by then.

Day 120

Amy emailed us the proofs of her wedding invitations last night. I thought they were great - mostly cause I'm an uncritical Dad but Joanie and Barbara went over them with a fine tooth comb and had some very good suggestions for change - especially Barbara. I thought they looked very artsy, very Amy.
Yesterday went well, they gave me two shots of Neupogen, both administered under my right bicep. It was the first time I had shots under my bicep. We came home and I went for a mile and a half walk, not as much exercise as usual but I'll keep up with the exercise as well as I can. As Melissa says, ya gotta keep moving and I agree. Anyway, so far so good, I haven't had any negative reaction to the Neupogen but it's only the first day of a 5 day regimen.
Melissa is coming up from Virginia for the weekend but she is concerned because she got involved in an emergency at her hospital. She ran into a patient in the hallway on her way to lunch who had collapsed and was throwing up. She took care of him but is concerned because she doesn't know what his diagnosis was and she's concerned that she might have exposed to some nefarious bug. I told her to be alert and see how she feels and not to come if she feels even the slightest bit sick.

Day 117

We went to the hospital yesterday for a new catheter. Dr. Klein took the incorrect catheter out of my chest and replaced it with the correct catheter. I was anestitized for the procedure in Operating Room # 9, same place as the original procedure. The doctor explained that one of her administrative people made a mistake in the selection of the catheter she put in the first time. But she admitted that she didn't check the selection before operating on me. My shoulder is extremely sore because of the two procedures in the same spot. I slept on my back to avoid rolling over on my shoulder. I think of Ellen Cook in the St. Matthews Cancer Support Group when I run into these little hick-ups in my care. She says a prayer that God will guide her to the light and help to ease her burden; I do now too. Thanks Ellen.
Tomorrow I begin Neupogen injections to stimulate stem cell growth in preparation for the transplant procedure a couple of weeks from now. It's going to be a couple of very tough weeks coming up. I'm thankful for all of the support I have around me.

Day 113

It's cold in NJ. I always thought that people on chemo who lost their hair were wearing hats because they didn't want anyone to know they were suddenly without fur. I'm wearing a hat because my old chrome dome is cold.
I had 7 hours worth of chemo today, long infusion of three drugs, antinausea drugs, and hydration. Joanie went to the drugstore afterwards and filled several precriptions I'll need over the next week. The mega infusion of chemo allows us to have no appointments until next Wednesday except for one major goof up at the hospital that has to be remedied on Monday.
The catheter that was installed yesterday was the wrong catheter and is no good for the transplant procedure. So on Monday I'm back in to see the surgeon to screw in the correct catheter. If that can't be done, she'll have to do a new procedure and install a new catheter on my left side. Ugh. Thank goodness for the nurse in the infusion center spotting that it was the wrong catheter as soon as she saw it.
 

Day 112

We went for our consult yesterday with Dr. Rowley, chief of the MM group at Hackensack. In the process of waiting for him they took an ocean of blood, 12 vials. He went over all of my files with us and outlined the process for us. We'll have to make a decision about further treatment - Allogeneic transplant or not after we get the results from the Autologous transplant. He favors a double (tandem) Auto transplant. In the meantime all of my brothers and sisters are doing an HLA swab test kit to see who is the best match for me or if I have multiple matches within the family.

I had surgery this morning to put a port in my chest below my collarbone. It's pretty sore right now but not terrible so I'll grin and bear it with a little help from my friend - Per Ca Set. Over the next two weeks I'll be losing my hair so I went and got all my hair cut off. I thought that that would be a little less sloppy than losing tufts of hair around Barbara's condo. Tomorrow I get a major all day infusion of Chemo and come home to Barbara's to rest. I'll get Neupogen injections sometime late next week.

Day 110

     This was a day chock full of information, a 3 1/2 hour caregiver/patient class with lots of handouts and good interaction between patients, caregivers, and presenters followed by 5 hours of tests in different hospital departments. I never imagined there were so many different ways to test your lungs and heart. I left my pedometer in the X-Ray room, hope I can get it back. I'm sentimentally attached to it.
     There's nothing on the schedule for tomorrow, so we'll go out and do some shopping. They want me to use an electric razor, no blades for fear of bleeding and we'll go to Whole Foods to buy provisions that I'm allowed to eat. I had to eliminate some things I really like. I'll put them on my bucket list for Christmas.
     On Wednesday, I'll meet with a Psyco/Social Worker and have a consult with the transplant team. I need to do a Living Will. On Thursday I get my catheter port put in, we have to arrive at 6AM for a 7AM procedure with Dr. Klein. I'm debating whether or not to take a picture, it looks like a pretty ugly apparatus. On Friday, I begin my mobilization chemo/neupogen (a stem cell growth stimulater) for approximately 2 weeks, then high dose melphalan followed by the transplant and a period of recovery.

Day 98

I got firm dates for the next step in my myeloma journey. Joan, Melissa and I will head to NJ for a class for Joanie & Melissa, testing for me on November 8, 2010. The chemotherapy for the transplant will take place on November 12, 2010. I don't know the exact date for the transplant but should occur a short time after the chemotherapy(mephalan). I went for torture with the dental technician this morning ; she discovered a cavity under one of my crowns(#14), so I'll get a new temporary crown on Thursday. Yippy ay yo kaiyee!! The king will be newly crowned again. Thank heavens the dentist is very good at what he does. He's the only guy Joanie will go to for treatment.

Day 97

I had a delightful lunch with Allen Trustmen and Fran Soares down in cloudy Rock Hill, SC. I'm about midway through my 4th month of chemotherapy. It's kicking my butt from a fatigue standpoint but otherwise I'm doing pretty well. I've received my likely dates for my ASCT (autologous stem cell transplant). It looks like I'll migrate to NJ for a November 8 class and work-up for the transplant which may take place on November 19, 2010 - my new birthday!! The class is for Joan and Melissa. I get to have two caretakers, lucky me.

Day 87

I met with the local oncologist, Dr. Mariealane Hellner, on Thursday. We went over the numbers, she's very pleased with my progress. We also agreed, since the numbers are still coming down that I would do a 4th month of chemo at home. That will finish up on November 5th and we will aim to move up to Hackensack University Medical Center the week of November 8th. They will do initial testing - heart, lungs, and whatever else followed by high dose mephalan to kill the remaining cancer cells, then high dose drugs to stimulate the growth of new baby stem cells, cell harvest, transplant, isolation, and then hopefully a little rest. Joanie asked the doctor if she could hold off coming up till after the cell harvest, she wants to make sure that she has enough hours to get FMLA, and then join me for the transplant and isolation phase of the treatment. I'll drive up and be able to go to Barbara's until then. The oncologist said maybe, she said that the drugs used to do the stem cell growth stimulation can be quite painful and I might not be able to drive but that everyones reaction is different. We'll see what we shall see and make the call then. I don't want to seem like a woosey but I'm looking forward and not looking forward to this.After I get through this ok I'll start preparing for the second transplant, which will be the donor transplant.

Day 85

Just got my blood test results and everything is normal except my mutated protein reading, it's .8g/dl. Thats an overall drop from 3.6g/dl to 0.8g/dl since I started chemotherapy. I'll meet with my local oncologist this afternoon but I think that I'll have a firm date for my autologus stem cell transplant by tomorrow. I feel like I did as a little kid when I had to get up to bat in my Malcom's Pharmacy Little League uniform for the first time - got some butterflys in my stomach. I'll post the date when I have it.

Day 77

I'm finished with my third month of chemotherapy. Everything went pretty well this month, just had to deal with some leg cramps and some constipation after the combo days with dex and revlimid. Joanie and I managed to get in some travel to Scottsdale, AZ where we saw an old friend from our days in the UK and spent some time with Chris Hughes and  then Pierre out in San Diego. We met Pierre's new girfriend, Zaida, and liked her immediately. She's very affable and down to earth. I'll get blood tests in NJ this weekend so we'll see if I've made progress on this journey. I hope so, I want to get into the next and more difficult phase of treatment.

Day 56

I began third month of Chemotherapy today. Since it's Thursday I took Dexamethasone with the Chemo, so it's loopy Thursday. I met with the doctor this afternoon to go over my lab tests after the second month of therapy. All of the readings were in the normal range (same for you and same for me) except for one key MM indicator, my protein M-Spike, but it was down 27% to 1.1 g/dl from 1.5 g/dl. If it goes down to 0.** next month it will be regarded as a VGPR (Very Good Partial Remission), if it goes to 0, it will be regarded as a CR (Complete Response or Complete Remission) and I'll be ready for my autologus stem Cell Transplant (ASCT). The reason I'll need that even though I achieve VGPR or CR is that this cancer comes back almost 100% of the time, it seems to have the ability to learn how the overcome the chemo drugs administered and reinvent itself. It would be good if I could teach my stem cells to be stupid.

Day 49

Hey finishing up my second round of chemo today, then a weeks respite. I go for testing tomorrow and get results next week. I'm going to play golf with Mike Polizzi and John Boy Hughes on Saturday in Ocean Isle Beach. Love chasing the ball past the alligators at Oyster Bay. Other than some minor numbness and cramping in my legs, I've tolerated the chemo pretty well.

Day 39

I'm having severe cramps and bone pain in my left hip. Joanie and I will be seeing the doctor tomorrow and consulting with Hackensack to see if there is something I can do alleviate the pain. The local oncologist wants me to get a complete blood count. I guess she wants to see what my white blood count is and if I'm becoming a little bit anemic. I'll also check with Hackensack on the timing for the donor kits and when they will be sent out. Anyway, the good news is that all of my test results seem to be going in the right direction for the autologus stem cell transplant they want me to go through first.

Day 36

I woke up with acute back pain, could hardly make it to the bathroom. I hope that as I move around it will alleviate a little. On a scale of 1 to 10,, it's a 6.

Day 34

I have cramps in my calfs in addition to night sweats. I'm going to talk to my exercise guru about this. Joanie and I are headed back to OIB after my medication arrives today. It was shipped out FedX yesterday. I want to play cribbage with the Penna and Atlanta Dock's.

Day 33

Back from vacation at Ocean Isle Beach. We had a great week visiting and cavorting with the family. I began round 2 with the chemo last Thursday, so far so good. I'm having mild night sweats every night. I'm not sure whether thats a good thing or a bad thing but if thats the only thing that happens it's ok with me. I should get a reading on my blood work today so we'll see if I'm responding to the treatment. I'll post the results when I have them.

Day 22

My posts always show up as 3 hours earlier than I post them. I'm not up in the middle of the night posting. I can't figure out how to change it. Today is the last day of drugs for a week, a welcome reprieve. We spent yesterday wrestling with the scatterbrained local oncology office to get my prescription correct and Golden Rule Insurance because they are holding up payments and asking for medical records from places that I didn't even visit - go figure. I went to my second exercise class yesterday, it was Yoga for beginners like me. There are some ways that I just don't stretch right now which engendered humor for some of my compatriots and individual instruction from my very good looking intructress.

Day 20

I had big time sweats last night. I had to take off my tee shirt, it was soaked. The doctor said that may be a sign that the chemo is eliciting some reaction from the tumors. I hope so. We got our regimen all straightened out today so my last day of medicine for the first cycle will be Thursday, then a week off and then back on again, perfect timing for OIB. I started an exercise program at the YMCA yesterday, I'm the only guy in the class.

Day 19

I think that my discomfort is attributable to dexamethasone. I'll talk to the local doctor when I see her tomorrow. I went to the YMCA in downtown Charlotte this morning for some exercise and conversation with other cancer patients. It was pleaseant and I look forward to continuing with these guys for the next several months. I'm the only guy in the class. It'll be good to get off the drugs for a week at OIB.

Day 18

Spent a very uncomfortable night, stabbing constipation. I went 4 times but not enough to relieve the discomfort. I'll talk to el doctor.

Day 17

I woke up with spongy legs this morning, maybe a little bit of peripheral neuropathy. The webinar on nutrition suggested that a supplement called glutamine (10gm three times/day) would help with neuropathy. I think I'll go to GNC to get some. I've also been constipated for 2 days. I think this happens after I double with steroids and chemo on Thursdays. I'll talk to the doctor on Tuesday or sooner if it doesn't shape up. Sorry for the lousy report.
We gave our spare bed to Melissa to take to her new home in Washington. So we're waiting for delivery of a new bed for our spare bedroom this morning. We expect John and Maureen to be here on Tuesday/Wednesday so they'll be the first to use the new bed.

Day 16

I helped to lower the water levels in our lakes yesterday. I drank 8 sixteen oz. glasses of water in hopes of avoiding blisters on my tongue and it worked. Today I'm tuning in to a webcast on cancer and nutrition sposored by the International Myeloma Foundation. The slides for the presentation, presented by the Providence Portland Cancer Center in Portland, OR, are on the IMS site. They have good tips for cancer avoidence for all. Take a look.
So far I am tolerating my chemo/steroid treatments pretty well. I'll get an early reading next week as to whether I'm actually responding. If I am, good, if not then they will add another chemo drug to the mix (Velcade) which will require infusion (port or IV) at the local oncology center.

Day 15

Today is a double day, steroids + chemo. I hope it doesn't yield the same result as last Thursday. I was dizzy and developed blisters on my tongue. Joanie had to do most of the driving to Virginia. Melissa had me drink water with iodized salt which helped a lot. I've joined a cancer support group at the church. We meet at 10AM today at church which is only a half mile from home.

Myeloma Journey: Day 13

Myeloma Journey: Day 13

August 3, 2010

We've decided to go to Hackensack University Medical Center for the stem cell transplant. There were a couple of factors that went into the decision. Duke, although they're a beautiful facility, did only 8 autologus stem cell transplants last year. Hackensack did 150 last year for myeloma and 95 for myeloma so far this year. Duke took an allogeneic transplant of the table, Hackensack took nothing off the table. Hackensack is close to family and that's important to us. The auto transplant will take place, depending on my response to the chemo, in the October/November time frame.

Multiple Myeloma Journey

August 2, 2010

Day 12

Good Night's sleep except up pretty often for water breaks - outgoing not incoming. Went to Dowd YMCA in Charlotte for a fitness assessment. I'm joining a cancer-care exercise group. Exercise on Monday and Friday, Yoga on Wednesdays. It's a free program and I'm looking forward to it. It will give me a chance to hook-up with other cancer patients. I'm still on an all organic diet.