November 2011 - Day +117

Well it has been a while since my last post, which means nothing new is going on, which is a good thing.

Met with my Primary Doctor last week, I had not seen him since last March. He was genuinely glad to see me, he even gave me a hug and we had a nice long chat. It was like a long lost friend.

Met with my local oncologist / hemotoligist today to figure the next steps. He was also glad to see me along with the nurse who used to give my injections, today she gave me a flu shot and a bug hug.

The human aspect of medicine is so important, it is so wonderful to have such welcoming arms and happiness at a place where our world was flipped upside down

The plan with the local oncoligist is:
1. Start maintenance on a drug by the name of Revlimid, I was on this drug during my initial therapy but at a much higher dose. This is one of those drugs that without insurance one could not afford to take. Yearly cost without insurance is $80,000 - $100,000.

2. I will have monthly blood tests and visits for the unforeseen future.

3. I will return to Rush every 6 months.

I think that is it, we are catiously getting back to normal. We hosted an Andersen game night last Saturday, the games nights had been suspended since I was in the hospital. It was a lot of fun and provides the medicine of laughter that is always welcome and needed.

Looking forward to getting out to my nephew Brandon's birthday party and Jane's brothers for Thanksgiving, though we do proceed with caution.

Everyone have a Happy Thanksgiving.

October 2011 - Day +101

Well I hit a milestone, day 100. This means less frequent doctor visits and I am being returned to my local doctor. My next visit to Rush is scheduled the first week in January 2012, at that time I will start my re-immunizations.

Still no yard work, lawn mowing...until I am fully immunized, which won't be until July of 2012. This also includes no swimming in pools, lakes or oceans. So our vacation extravaganza will have to wait.

I will be seeing my local doctor monthly and have monthly blood tests to monitor my condition. If anything looks out of line I will be returning back to Rush.

I will also be starting maintenance, which will be done by using a drug by the name of Revlimid. I will take this drug for two years in hopes that it keeps everything in check. I took this drug at a higher dose along with two other drugs during my induction cycle.

Yesterday not only being day one hundred we also picked up dinner from a restaurant and brought it home. First time we have eaten something out since the transplant, though the doctors have stated we could have done this sooner we are extra precarious. Though my eating out will probably limited, my last blood test revealed my triglycerides were high, slightly surprised by this since I eat fairly healthy and walk 2 miles a day. So it is time to turn it up a notch, going to try and start jogging again. I few years back I used to jog daily, at that time my triglycerides were 66.

My hair is really starting to grow in. I have grown a beard; though not ZZ Top long; and the hair on my head gets thicker everday. My sister stopped by yesterday and her first comment was look at all you hair.

Jane has been promoted from bartender to warden. I joke with her about this, I will state I am going to do something and her reply will be you can't do that. I know she just has my best interest in mind.

Thanks for all the well wishes and prayers.

Have a Happy Halloween.

October 2011 - Day +92

Well first week back at work full-time. The week went well and I am not too tired.

Back downtown Thursday for my last follow up before being released to my local doctor. Some final blood tests will done, including thyroid, cholesterol...

Trying to get back to life as we once new it.

October 2011 - Day +84

Met with the doctor today and went over all test results from the last couple weeks, and it has been confirmed that I am in complete remission.

After my next visit to Rush in two weeks I will be returned to the care of my local doctor. I will have blood tests monthly to monitor my condition and will return to Rush yearly for check ups.

I have been cleared to return to work full-time.

It is time to get everything back to normal.

October 2011 - Day +74

Well I couldn't wait 2 weeks to get the results of the missing test, it was driving me crazy. So I sent an e-mail to the doctor this morning and received a call back around 10:30 this morning. The results of the missing test were negative, which means complete remission and no second stem cell transplant. That is a load off our minds for now!

Now we wait for next Thursday (10/13) to see the next steps...

Had a good weekend and played tennis again yesterday and almost beat Alli. Played 12 games, which we both won six games a piece and then Alli won the tie breaker.

September 2011 - Day +71

Well back to the clinic yesterday to get the test results from last week or at least most of the test results. The doctor went over all test results but one, all the tests so far are looking good. The missing test result is one that is done against the extracted bone marrow, this test is much more sensitive in checking for any residual myeloma cells left in the bone marrow. So even if the blood tests have no tumor markers, this test goes a little deeper. Without this test the doctors cannot declare I am in complete remission.

My white blood counts continue on a steady decline, which is either from a medication by the name of Bactrim; that I take on the weekends; or just my body adjusting from the stem cell transplant. The doctor states there are other medications, but Bactrim is the best, so he won't change this medication until I am closer to being neutropenic. My current neutrophil count is 2.1, with a WBC of 3.01.

I have been feeling pretty good the last few weeks, pretty much back to normal, which means I am getting a little stir crazy, especially with all the rain this week.

Doctors won't let me go back to work full time until I get the the results from the missing test, so I am part time for two more weeks.

Be sure to wear yellow on Sunday October 2 - Livestrong Day, to show your support in the fight against cancer.

September 2011 - Day +66

Today is Alli's 16th Birthday, what did Alli want to do on her Birthday? Play tennis with her Dad. We played a full set of tennis and I lost 3 games to 6. Not bad since I have not played for 5 months. It was a lot of fun, my legs haven't had that kind of workout in a while.

She looks like a pro! This picture was taken last weekend at a tennis match.

September 2011 - Day +63

Back to the hospital today for some tests for re-staging. The day started off with some of the worst rush hour traffic we have experienced. One of the commuter trains was delayed an hour, so many people decided to drive creating overwhelming traffic delays. It took us over two hours to get into the city. I was thankful to have Jane as my copilot, without her I think I would have lost my mind in the traffic.

Today I had a full skeletal scan, which consisted of about 20 Xrays. Every bone in my body was xrayed except my hands and feet. The Xrays are used to look for bone lesions, which is common with advanced stages of Myeloma. I have had two previous skeletal scans that have come out clean.

Next was blood draws, about six vials of blood. The blood tests consisted of Light Chains, Beta-2 Microglobulin, Quantitative Immunoglobulins, Immunofixation Electrophoresis and a couple others. At diagnosis my Lambda Light Chains were extremely high, before the stem cell transplant the light chains were normal.

Finally was the bone marrow biopsy. I had two previous bone marrow biopsies done at my local hospital, but today's I decided to have at Rush University. Today's bone marrow extraction was extremely painful, I believe I let out a verbal scream or yelp. What was different from the past bone marrow biopsies? Today's technician stated the bone marrow had to be extracted quickly where the other ones were not done that way, wow what a difference. Just to recap, my first bone marrow biopsy showed 80-90% plasma cells, the second (before the stem cell transplant) showed less than 5% plasma cells. A normal person will have less than 5% plasma cells.

Now we wait to get the results next week, if all is good I will be released to go back to work full time. If all is not good a second stem cell transplant would be discussed.

The last couple weeks I have been feeling really good. I have been walking 2 miles a day. Yesterday I even washed my car with the help of Jane, but this didn't go off without a hitch. I cut my finger while drying the car or I guess I should say drying the engine. Jane felt terrible about this, though it was not her fault.

September 2011 - Day +56

Back to the city today for another follow up visit, it has been two weeks since my last doctor visit. As of today all CBC and standard blood chemistry counts have retuned to normal and have stayed stable for the last two weeks, which is good.

Next Monday is day +60, that means testing next week to re-stage the disease. So next Thursday I will have a bone marrow biopsy, skeletal scan and a slew of blood tests. Then the following week I meet with the doctor to find out the results.

I have been feeling pretty good the last couple weeks, with a few minor issues. My forehead has become really dry, started flaking and itches at times. I put moisturizing cream on twice a day to help with the dryness and itching.

The real doctors have said I can wash my car, but doctor Jane is skeptical, she doesn't think the doctors understand what washing my car really means. For me washing a car can take 4-6 hours. The real doctors say I can go out to eat, but doctor Jane is catious and thinks we need to wait longer. I guess we can't be too catious, so I do as doctor Jane requests.

I have been walking a mile and a half a day and ready to turn it up a notch. I asked the doctor if I can start jogging or playing tennis and he said that would be okay.

This was my first week back at work part-time, which went well. Though I think they are taking it easy on me, which is okay. I will be part-time until I get the day +60 results back.

Both Lexie and Alli had stuffy noses starting this week. This was the first real test for us and we had to be extra cautious. Lexie went to the doctor Monday and the doctor thinks Lexie's stuffy nose is due to allergies. Lots of Lysol wipes, hand sanitizer and dial soap being used in this house, I must be washing my hands 20+ times a day.

September 2011 - Day +42

Wow it is September already, before we know it will be Christmas.

Back to the clinic today for a follow-up and everything continues to look good, so good the doctor does not need to see me for two weeks. The doctor says I look 10 years younger without my goatee, what do you think?

I call this my naked look, since I never leave the house without a hat and rarely does anyone see me without a hat. If you look real close you can see my hair is starting to grow back. In two months I should have a whole head of hair.

Wow now that I think about looking 10 years younger the people at the clinic probably think Jane is my Mom. (Ha Ha Ha)

Anyway all in all things continue to improve. No nausea this week, no naps this week. Walked a mile everyday and even helped Alli practice tennis Monday night.

How to post a comment

I have been told by several people that they have tried to post a comment but had no success in doing so. So I thought I would write some instructions on how to post a comment. I love to get comments.

Starting from an e-mail update
If you receive updates through e-mail start here, if you go directly to the blog through your web browser start with the Adding a comment section.

From your e-mail click the "The MM Journey..." title (see below). This will automatically start your web browser and display the blog.

Adding a comment
This section will describe how to add a comment. From the blog posting click the comments link (see below).

Once the comment link is pressed a new screen will be displayed allowing the comment to be entered (see below).

But wait there is one more step before your comment is published. You must enter the validation text and press the post comment button one more time.

Once the comment has been posted the verification screen will be displayed.

That's it, the comment was posted.

August 2011 - Day +36

Another week of recovery and all is going good. This week I really had a lot more energy than the last few weeks, napping is becoming less of a requirement. I have progressed to walking a mile a day again and wanting to extend that even further soon.

Back at the doctor yesterday for my weekly visit. My blood counts continue to recover, though the white blood cells dropped a little, possibly due to the new medications I started last weekend. The doctors will continue to monitor the white blood cells next week and change medications if necessary. The doctor said I can start to extend my walking and do some more activities such as bike riding, just don't over do it.

I can also go to public places without wearing a mask, but I still need to be very cautious of any who seems to be sick. Though this is good, it still makes Jane and I very nervous. Case in point we went to Alli's tennis match last night and two chairs over is a girl coughing and wiping her nose. We had no choice but to move further away and eventually I went and watched from the car. Any type of cold or flu could be a set back, we can't be too cautious.

I plan to return back to work part time on Sept 12th and then work into full-time a week or two after that.

August 2011 - Day +29

Back at the clinic yesterday for my weekly follow-up. Yesterday was a busy day, I didn't even get my afternoon nap, which made me more tired today. The doctors visit went well and blood counts are continuing to recover. I start a new medication this weekend (another horse pill) to prevent pneumonia. This medication has a weird dosing, I take this medication on Saturday and Sunday only. This medication can lower blood counts in some people so they will monitor my counts and switch medications if this occurs.

Overall I am doing pretty good, at times I want to do more than I am supposed to. I really want to wash my car, asked the doctor about this yesterday and she frowned upon this and said not yet, you are only 28 days out of transplant. I look out and the yard and want to get out the weed trimmer and do some trimming, but again that is a big no no, no mowing or digging. I go for a walk everyday, working back up to a mile, currently walking about three quarters of a mile a day. I want to walk more, but my body reminds me the next day I should not do that.

Back to the clinic next week for another follow-up. Next week they will do some additional blood tests to check the preliminary status of the disease. At day +60 I will have all the same tests done before I had the stem cell transplant (bone marrow biopsy, skeletal scan...) so the doctors can restage the disease.

One question that Jane and I had is how did I loose my immunity to all previous vaccinations and cold and flu strains since my own stem cells were used. From what I understand (Sadie and Jonathan please comment on this if you have additional info) is my stem cells were the baby cells and the baby cells learn the vaccinations and previous colds and flus from the mature cells. So since the mature cells were wiped out, the baby cells could not do any learning, hence I have to be revaccinated. The more I learn, the more I understand how amazing the human body is.

August 2011 - Day +21

Back to the clinic today for another blood draw and to meet with the doctor. It was kind of a roller coaster week. On Tuesday and Wednesday I actually went for a mile walk and made dinner Tuesday night, I might have over done it since I was extremely fatigued Wednesday afternoon and slept all afternoon. The doctor agrees, that might have been too much. The doctor suggests I should only walk a half mile a day and slowly start increasing my distance.

The doctor stated my blood counts are recovering nicely and that I do not need to return to the clinic for a week, unless of course I start running a fever or have other signs of illness. This was a surprise since I originally thought I would be coming to the clinic twice a week for three to four weeks.

August 2011 - Day +19

Back to the clinic yesterday as an outpatient. Appointment was at 2:00 pm, had to arrive 90 minutes early for vitals and blood draw. It was a long day, we left our house at 11:30 and did not return until 6:30. Needless to say, even though my appointment was at 2:00 we did not see the doctor until 3:30 and by the time we left the city at 4:30 it started to rain, making the drive home a two hour drive, in good weather and traffic we can make it home in 45 minutes.

The doctor visit went well, the doctor stated how well I did in the hospital. The doctor said some people have to stay 3-4 weeks. My blood counts are recovering nicely. The doctor also stated that any colds, flus or even the chicken pox my body no longer remembers any of these I had in the past. So when I catch a cold or flu it will knock me to my knees and take longer to recover.

The doctor also wants me to drink two litters of water a day. I used to drink three liters of water a day, but since the high dose Chemo, I cannot even drink one bottle of water. Hopefully this will change soon. Water just tastes terrible.

I will be revaccinated in about 6 months same as a new born baby, with a vaccine schedule going out two years.

I have to be extremely cautious around anyone who receives a live vaccine, for example the nasal route flu vaccine. If anyone has this type of vaccine they cannot come in my house for 14 days. Likewise I cannot have any contact with someone who has had this vaccine for the same period of time.

I have been doing okay except for fatigue, I tire fairly easy. My muscles are kind of weak, I used to move up the stairs fairly quickly, skipping every other stair. I unconsciously did this last night, but was unable do so. Doctor said this is normal and will get better with time.

Back to the clinic on Thursday for another blood test and visit with the doctor.

August 2011 - Day +16

Being back home I did not think I would be this tired. In the hospital the last couple days I was feeling pretty good with lots of energy. Now that I am back home I am pretty tired, yesterday and today I am feeling tired and lazy, but it is great to be back home.

Jane was pretty worn out too, she drove into the hospital everyday and would stay till about 7:00, now that I am home she will be able to catch up on some needed rest also.

Thanks to everyone who helped with keeping the girls busy, this helped so much. I think the girls were busier than they could have imagined, it made the two weeks go quickly for them.

What's next for me? I will have clinic visits on Mondays and Thursdays for the next couple weeks, then the visits will be reduced to once a week, baring no complications.

My immune system could be compared to a new born baby. If I go into a public place I will need to wear a mask, for the next 100 days. No yard work or cleaning for the next 100 days either, though I can go for walks outside. Hand washing and sanitizing is of up most importance along with not being around anyone who is sick.

August 2011 - Day +15

Well I am back home!

Left the hospital about 11:00 am. The central line did not come out easy, had to have surgery this morning to have it removed.

Time to rest for a while.

August 2011 - Day +14 - Update

Plans are in motion to get me out of here tomorrow (Friday). Things will start at 5:00 am with a platelet transfusion. The surgeon wanted my platelets a little higher before pulling the central line. At 7:30 am the surgeon will try and pull the central line bedside, if it cannot be pulled then I will have to go to a surgery room to have a small incision to have the line removed.

All in all I should be released and on the road home by noon.

August 2011 - Day +14

Looks like I will be coming home tomorrow (Friday), baring no unexpected complications. My body is producing white blood cells, red blood cells and platelets; though the platelets are coming back slowly.

Yesterday was a good day, though I have to say I getting a little stir crazy knowing that I am so close to being released. It is getting easier to eat and had little nausea yesterday.

WBC - 5.12
ANC - 2.91
Hemoglobin - 10.9
Platelets - 25

August 2011 - Day +13

We have lift off, numbers took a jump from yesterday's counts. I felt really good yesterday and had little nausea. I am down to one anti-nausea drug. I was able to eat all my meals, which is good since the "food police" come in after every meal to see what I have eaten.

WBC - 1.33
ANC - .42
Hemoglobin - 10.4
Platelets - 22

August 2011 - Day +12

Last night reminded me of when my daughter was younger and had a sleep over. I awoke about 1:30 am to talking and laughing. My nurse came in about 2:00 am to draw blood and I told her I thought the nurses were quite loud for the middle of the night. She stated she would talk to the nurses. But just like any good sleep over that only lasted about 30 minutes before the talking and laughing seemed to continue through the night.

I was quite fatigued yesterday and did a lot of sleeping. Since my hemoglobin was low the doctor decided to give me a blood transfusion yesterday afternoon. By about 6:00 last night I was feeling pretty good.

I was unhooked from the IV yesterday, it is nice to be able to move around without dragging a pole with me.

Still did not get a big bump on my blood counts.

WBC - .42
ANC - .02
Hemoglobin - 9.8 (Due to blood transfusion)
Platelets - 19 (Due to platelet transfusion)

August 2011 - Day +11

White blood cells are slowly creeping up, not at a rate I was hoping for, but up is better than down.

Platelets dropped to 7 overnight and received my first platelet transfusion. This process took about an hour as the platelets were pumped into my body.

Hemoglobin levels continue to drop, down to 8.4, I am assuming I will receive a blood transfusion tomorrow, I expect these values to continue to fall below 8 sometime today.

WBC - .27
Hemoglobin - 8.4
ANC - 0
Platelets - 7

July 2011 - Day +10 - Update

The head shaving is complete and here the results

July 2011 - Day +10

Here we are 10 days post transplant still waiting for them stem cells to their job. White blood counts jumped a tiny bit today. I received my first nuepogen shot today to try and get things moving along.

Hair is starting to fall out, I am going to have my head shaved today, I will post pictures later today or tomorrow. We have prepared the girls for this day, it will be interesting to see their reaction.

WBC - .17
ANC - 0
Hemoglobin - 8.9
Platelets - 14

July 2011 - Day +9

Did not sleep well last night, I guess a Friday pastime is to race motorcycles on the Eisenhower Expressway at speeds of excess 100 mph in the wee hours of the morning. The Eisenhower expressway is right out my window.

Felt a little fatigued today, could be from lack of sleep last night or that my hemoglobin is getting low or my body needs a lot of resources to start making new cells.

White blood counts were up slightly, tomorrow will be the true indicator if my stem cells have engrafted to the bone marrow. If the White blood cell count is up again tomorrow this would be a good indication.

Tomorrow I start getting Neupogen shots to try and give the bone marrow a push to get things going.

WBC - .11
Hemoglobin - 9.3
Platelets - 30

July 2011 - Day +8

My immune system is completely gone. I have to wear a mask and gloves when I leave my room, this protects me from any germs. When in my room I am protected by an advanced filtration system, visitors and myself do not need wear masks.

I woke up feeling pretty good today, even though the storms kept me awake some of the night.

Jane has decided to spend last night and tonight with me at the hospital. Our thoughts were I would be hitting rock bottom and start to feel some fatigue. This way she could monitor me and the nurses, to insure I was getting everything I need.

No hair loss yet, I am told that will occur in about 1 week from now, which is about 2 weeks from the high dose Chemo.

WBC - .08
Hemoglobin - 9.6
Platelets - 43

July 2011 - Day +7

Well things are getting harder rather than easier, I seem to be spiraling down still. The nausea was the worst yesterday evening, I would have expected it to get better rather than worse, but I guess that is not the case. The nausea this morning is no better and I am waiting for some more anti-nausea medicine to be delivered.

Counts still dropping, waiting for those baby stem cells to setup shop and start being productive.

WBC - .13
Hemoglobin - 9.8
Platelets - 61

Interesting story about platelets. There are two types of stem cell transplants:
- Auto - Where one's own stem cells are used
- Allo - Where a donors stem cells are used.

My transplant is an Auto, but if for some reason Auto transplant does not work then next step would be to do an Allo transplant. With Allo transplants, the best chance of getting a donor is from a sibling. Here is were the possible issue comes in with platelets. Both of my sisters donated platelets and had them directed to me. I was talking to a nurse one evening and she stated if I received platelets from my sister, there would be a good chance if I ever needed an Allo transplant they could no longer be donors for that. I brought this up to the doctor and she had several discussions with other people and I guess there are two schools of thought. So to be safe I will not be using my sisters platelets, if I do need a platelet transfusion.

July 2011 - Day +6

Nothing new to report today, which is good. Just waiting for the stem cells to find their way to the bone marrow.

WBC - .32
Hemoglobin - 9.9
Platelets - 85

July 2011 - Day +5

Status quo, not much new today. Still fight a little nauseous everyday. Blood pressure was low, so I have been put on IV fluids. Slept good last night, feeling general tired / laziness.

What is my day like?

1:30 am - Nurse draws blood and takes vitals
6:00 am - Nurse reports blood counts
7:00 am - Walk the halls for my exercise
7:30 am - Vitals - Blood pressure, temperature and oxygen levels are taken. I am also weighed.
7:30 am - Breakfast arrives
8:45 am - Pills, Pills, Pills
9:00 am - Doctor stops in
10:00 am - Walk the halls
10:30 am - Jane arrives for the day
11:00 am - Vitals
11:30 am - Walk the halls
12:30 pm - Lunch arrives
3:00 pm - Vitals along with weight again
5:00 pm - Walk the halls
5:30 pm - Dinner Arrives
7:00 pm - Vitals
10:00 pm - Bedtime
11:00 pm - Vitals

Blood counts continue to drop.

WBC - 1.26
Hemoglobin - 10.5
Platelets - 106

July 2011 - Day +4

So far so good, I am waiting for the floor to fall out, but so far I have been holding strong. I woke up this morning starving and have already eaten a bowl of frosted flakes and fruit, still waiting for the breakfast tray.

I continue to walk a mile plus everyday, I am told exercise, eating and mouth care are the most important things. Yesterday the thought of lunch or dinner just made me nauseous, so the nurse started giving me Ativan which made eating tolerable, though not enjoyable.

I am beginning to hate the smell of alcohol, whether a swap/wipe or hand sanitizer.

Counts continue to drop, though I am not neutropenic yet, that will probably occur in the next day or two. Neutropenic will mean that I will be highly susceptible to any type of infection or virus. When I become neutropenic I will need to wear a mask and gloves when I leave my room and likewise visitors to to my room will need to do the same.

WBC - 2.14
Hemoglobin - 11.9
Platelets - 150
Neutrophil - 2.0

July 2011 - Day +3

Today is Sunday and starting my 4th day in the hospital. I do have to say the nurses and patient techs have been outstanding, very caring and helpful. I actually slept pretty good last night, no storms in the middle of the night to wake me.

Blood counts this morning are showing drops on the white blood cells, which is expected since my bone marrow is not making any white blood cells yet and the current cells are dying off. Somewhere around day 10-14 my stem cells should make their way to the bone marrow and start producing white blood cells again.

Today's counts are:

- WBC - 3.5
- Hemoglobin - 11.8
- Platelets - 189

July 2011 - Day +2

Not much new to report today. I had a little nausea yesterday, but nothing too bad, I was still able to eat all my meals. I am getting anti-nausea medicine to help.

Blood counts are still normal, but are expected to drop and probably bottom out at about day +7.

July 2011 - Day +1

Starting my second day as an inpatient. Slept okay last night, besides being awoken for vitals every 4 hours and the blood draw at 2:00 am, at least I am detached from the IV pole for now.

Jane says the room has a smell of cream corn, though I don't smell it. The smell is excreted from my body do to the preservatives used to preserve the stem cells.

I woke up feeling pretty good this morning, actually starving at 5:30. I ate a bag of pretzels and waited for my breakfast. Breakfast came about 8:00 and it tasted pretty good, bacon and eggs two days in a row.

Blood counts are are their way down, but still within the normal ranges at this time.

July 2011 - Day 0

I have officially become an inpatient, checked in at 6:00 am this morning. My room is on the 10th floor in the Kellog building. I even have view of the the United Center and the city sky line out my window.

My transplant occurred at 1:00 pm today. It took place right in my hospital room. The transplant was similar to a blood transfusion. Below are some pictures of the transplant.

The stem cells come out of the keg on the left and then warmed in a water bath on the right.

This is a picture if the stem cells being infused into my body. Fairly simply and painless process.

My birthday cake for my new birthday.

All in all things have been going good, we had people come into the room asking if the patient was in the room, I must be looking pretty good. I am told I will probably crash around days 4 - 7.

I will be hooked up to an iv until 2:00am, and then I will be iv free for a few days.

July 2011 - Day -1

Back at the hospital today, my last day as an outpatient, tomorrow starts my inpatient stay. We will arrive at the hospital at 6:00 am on Thursday to get checked in and settled to let the fun begin.

Today is considered day -1, and tomorrow will be day 0, then we start counting up from there. That is officially how the transplant is tracked. My blood counts will be tracked daily and my white blood cells will eventually drop to 0, no immune system.

Today I am receiving my high dose Chemo (Melphalan), the day starts with an iv push of salene solution for 2 hours, then one bag of Chemo for an hour then another bag of Chemo for another hour, then another iv push of salene solution for 2 hours. Along with the Melphalan, I will be taking 5 other drugs mainly anti-nausea drugs and one drug to help the kidneys, since all dead cells pass through the kidneys.

During the infusion of the Chemo I will also be sucking on ice. One bad side affect of the Chemo is mouth sores and sores in the GI tract. The ice shrinks the blood vessels in the mouth so they get less of the Chemo drug, hopefully minimizing any mouth sores. If mouth sores occur it can make it difficult to eat and getting good nutrition during this time will be important.

Another side affect of the Chemo will be hair loss, I will loose all my hair, but it will grow back within a few months.

Tomorrow when I receive my stem cells, it will be considered my "new" birthday. I am told I will even get a birthday cake.

I am going to try and post everyday to keep everyone up to date.

July 2011 - Stem Cell Collection - Complete!

Get to stay home today and tomorrow collected 2.54 million stem cells yesterday. So for the two days I collected just about exactly the maximum amount of 6 million. My baby stem cells are now in the hospital freezer waiting for next week. The other 3 million stem cells that are not used will be saved for 8 years.

Back to the hospital on Monday for final blood work and a visit with the doctor before the transplant takes place. The transplant process is as easy as a blood transfusion. They will take half of the stem cells collected and put them back into my body using the central line, it is a simple as that. Though the rough part is the high does Chemo that will wipe out my bone marrow to make room for the new baby stem cells collected. This will drop all my blood counts really low for about a week or a little more making me tired along with other side effects of the Chemo. Red blood cells and platelets will be transfused as needed. White blood cells, we have to wait for the new stem cells to make.

July 2011 - Stem Cell Collection - Day 2

Back at the hospital today for a second round of stem cell collection. Correction from yesterday - goal is to collect 4 - 6 million stem cells. Yesterday I collected 3.59 million, so we were summonsed to return today. It is better to be close to the 6 million, so we are hoping for another 3 million today.

Concerned about platelets since this process also reduces the platelet count. According to this mornings CBC, platelets were down to 50; anything below 25 will require a platelet transfusion. Though it is a concern it is not unexpected, we will find out more this afternoon.

Found out more today about platelet donations, according to the blood bank platelets donated by a relative respond better in my body, but I can use any platelets regardless of blood type. Besides today, I know I will need platelets while in the hospital and platelets only last 5 days once donated. Platelets have to donated at Rush, anyone interested in donating e-mail me and I can provide more information. Platelet donations do take a while to extract, up to three hours.

July 2011 - Stem Cell Collection - Day 1

I am currently sitting in a bed at the hospital today having my stem cells collected. The process is painless and uses my new central line that was placed last Thursday. The collection process collects the stem cells and also depletes the body of calcium, so I have been taking a full dose of Tums since Sunday. The technicians also suggested a shake with lunch, which I think I will have to try.

We arrived at the hospital at 8:00 am this morning amongst the rush hour traffic and the actual collection process started about 8:45 am. The collection process will continue for six hours. Once the collection is done we head the the infusion department to see how many stem cells were collected, the goal is to have 6-8 million. Stem cells are CD34 cells, who knew ones body had so many cells, and each cell had an identification. We will come back to the hospital everyday this week until the goal is met. If the goal is not met today, then it will be another mobilization shot tonight and another Neupogen shot in the morning.

Today will be a long day we left at 6:30 and probably won't return until 7:30 tonight. Bless Mom and Dad for helping get the girls to their practices and for dinner last night and tonight, this is a huge help. Just knowing the girls aren't sitting home alone gives us peace during the day. Thank you for everyone else who has offered to help, don't worry we will be using your resources soon.

Below is a picture of me and the machine that collects the stem cells.

July 2011 - Neupogen Shots

Started the Neupogen shots on Thursday, Jane has been giving me the shots every morning precisely at 7:00 am. Jane is making a good nurse, hardly feel the shots at all.

I believe the shots are doing their thing, I have started feeling some aches in my hips and back. This means the bone marrow is filling up with stem cells / white blood cells.

July 2011 - Central Line

Phase one of the stem cell transplant is complete. Surgery for the central line went well. The hospital worked like clock work, surgery started when it was supposed and all went well. I am back home resting comfortably.

Phase two the Neupogen shots have been started. I received my first Neupogen shot today, which is really two shots. These shots are used to tell the body to produce more stem cells. Jane was trained to give these shots and actually gave me one today, she did good. Jane will be giving me these shots for the next 5 days, at which point the stem cell collection process will start.

Thanks you everyone for the well wishes!

July 2011 - Final Preperation for SCT

Back at the hospital yesterday, final preparations for the stem cell transplant. Received a tour of the blood donation center where my stem cells will be extracted. Saw the unit where I will be staying and met the Physician Assistants and Nurse Practitioners. The rooms are very small. Seeing the hospital ward made everything feel so real.

It is hard to accept all of this when I really don't feel bad and actually being off the steroid for a week and 5 days I feel much more awake and less moody/cranky. Today I have to say I actually felt great.

Also met with the transplant doctor, I have to say he is so positive. He confirmed I am in complete remission and stated only about 25% of people get to complete remission before the Stem Cell Transplant. I asked if I was in complete remission why is a SCT needed. His response was two fold: 1. If I continue on the drugs I am on eventually I would incur nerve damage and my quality of life would suffer. 2. He stated we have to use all the weapons available just like the military, the induction therapy was like the air force and the SCT will be like sending in the ground troops. He stated to win the war we have to use all available divisions of the military.

I passed all the tests done 2 weeks ago, and insurance has given verbal approval, so it is all systems GO.

Things start rolling next week, with surgery for the central line on Thursday July 7th. Wednesday July 6th will be my last day of work for a while, they keep telling me I will be off for 3 months. Thursday will also mark the start of my Neupogen shots, Jane will receive her honoree Nursing certificate, since she will be giving me the shots every morning at 7:00 am for at least 4 days. The shots are given in the stomach. More details on the stem cell collection process next week, maybe even some pictures.

Just gave Jane a crash course on how to create a blog entry, so she can keep everyone up to date if my energy is zapped at anytime during this process.

June 2011 - Bone Marrow Biopsy Results

The results are back from the bone marrow biopsy and the results are good, there are no detectable plasma cells in the bone marrow, the doctor says I am in complete remission. The hope was to have 10% or less, but they are currently non-detectable. This is the best position to be in before the stem cell transplant.

I am currently off all drugs and looking forward to lots of energy in the next three weeks before the stem cell transplant process starts. They stopped all drugs to allow the stem cell collection to go smoother, some of the drugs make it harder to collect stem cells.

I have sailed through the first part of the journey, I believe the second part will be a bit harder, but I am ready for it to be done.

June 2011 - The Actual Tests

Yesterday was my visit to Rush for required tests and meetings to prepare for the stem cell transplant. The tests were no big deal, though dealing with some people give me concern. I have to say all the technicians performing the tests were great people.

Here is how my day went.

- Arrived at the hospital at 7:00 am

- Registered for my first appointment

- 7:05 Vitals and Blood Draw. This is were things start to get intresitng. The nurse prints out labels for my blood draw, fifteen labels = fifteen vials of blood. The nurse then leaves to get the Phlebotomist. The Phlebotomist comes in, reads the labels chuckles and then leaves the room. She comes back and I inquire about what was so funny and come to find out one of the blood tests to be drawn was a pregnancy test.

- 7:30 Next it was off to meet with the patient coordinator (SD). We have 30 minutes before my next appointment. She informs me that my schedule for today has changed, due to the fact that she has to leave early today to go play golf with her Dad, really? I know it fathers day weekend, but really? So we start getting some papers signed early in the time we have.

- 8:00 off to the pulmonary function test. This test was rather easy, basically I sat in a glass box and did breathing in a tube through my mouth with my nose pinched shut. Below is a picture of the actual box I sat in.

Once in the glass booth I had to breath normally, inhale and exhale as deep as I could. Just when you think you have exhaled all the air from your lungs the technician tells you to keep going.

- 9:00 Psychosocial Meeting, believe or not this was one of my highlights of the day. This doctor was fantastic. She suggested services we were not aware of and truly had concern for my well being. She also suggested I start taking a new medicine and would talk this over with SD and Dr. HF. She knew a lot about the stem cell process and helped me prepare for the days to come. I believe this meeting went longer than expected, but it was time well spent.

- 10:00 back to meet with SD, so she can leave early, this was a change from the original schedule. SD already has the prescription for the new drug from the 9:00 meeting, funny since Dr. HF is out of the office today. We go over some more papers and then I sign the papers. We have a few minutes for some of my questions, but we are starting to run late for the next appointment. The tour of the unit were I will be staying has to be postponed until the next visit.

- 11:15 or there about. Time to meet with the surgeon who will put in the central line. This is somewhat of an interesting visit. First the nurse that works with this doctor is either new or very frazzled. She has to enter my medications that I take into the computer, at times I don't think she is familiar with the medication names. Next she tries to take my temperature but is unsure how to use the device and eventually gives up. Then she tries to take my blood pressure and states she will have the doctor do it since he is much better at this than her. Where am I, did I just enter a new dimension? Next the doctor comes in, seems to be upset that we were late for the appointment. He explains how and were the central line will be placed and has a sample central line so we know what it looks like. He takes my blood pressure and it is high, which gives him concern and states I should alert this to my primary doctor. Next he has a paper with the surgery date of July 6th, I state that I thought the surgery was scheduled for July 7th. He checks something comes back and agrees it will be July 7th. I also remember the new prescription I just received and bring that to the doctors attention. Not remembering the drug name I have to pull the prescription out to show him. He asks, did you see Dr. HF today; he knew he was not in; and I state no I did not. I think I might have gotten someone in trouble. I do not leave this appointment with a level of comfort.

12:30 - time to switch buildings and find the nuclear medicine department. On our way to nuclear medicine we pass a cafeteria and grab a quick sandwich, what a relief I thought I was going to miss lunch.

1:00 - Muga Scan. I register and proceed to the waiting room. I start to read the paperwork as we wait and notice my diagnosis is listed as Hodgkins Lymphoma, though I don't think this has anything to do with how the scan will be done I bring this up to the technician. He agrees that it does not impact the test, but he would get it changed. The Muga scan test is another easy test. I lay down on a table, the technician draws a vial of blood. He then mixes the blood with a isotope (marker) which takes about 15 minutes. Then he injects the blood back into my body. Next three leads are attached to my chest, then I am slid into or near the machine that will take pictures of my heart. Each picture takes ten minutes and two pictures are taken. Below is a picture of the machine used.

2:30 - EKG. The quickest test by far. The technician puts ten leads at different points on my body. One on each leg, two at the top of the chest and the rest at different points on the left side of the chest. After the leads are hooked up, she runs the test, which seemed like 30-60 seconds and then she removes the leads.

3:00 - Chest X-Ray. Another quick test, though this part of the hospital seems to be very old and outdated. The test is rather simple, stand in front of the X-Ray machine and the picture is taken.

That is it, the day of testing is complete.

June 2011 - Test Time

Things seem to be moving fast, and the stem cell transplant is approaching quickly now. I had another bone marrow biopsy on Tuesday of this week, won't get the test results until next week, at least I hope to get the results next week. I have an appointment with the local doctor on Monday 6/20.

Getting ready to spend the day in the city tomorrow (Friday 6/17) for a full day of testing. I need to arrive at the hospital by 7:00 am. The day looks something like this:

7:00 Register, vitals and blood draw
8:00 Pulonary Function Test
9:00 Psychosocial Consult
10:00 Chest Xray
10:30 EKG
11:15 Surgery consult (for central line)
1:00 Muga Scan
2:30 Consent signing and tour of bone marrow transplant unit
4:00 Back on the road home, just in time for rush hour on Friday.

What is a central line you ask? Of all of the stuff I have to go through in the next month the central line and the high dose Chemo are my two least favorites. The central line is a catheter they will surgically implant in my neck / chest. They will put this in on July 7th and hopefully remove it when I am released from the hospital.

Once the central line is in place, it is used to extract the stem cells, blood draws, administer medications and to put the stem cells back. I am sure there are other purposes also.

Well if you read my last post you understand how I am know the patient liaison between the local doctor and the stem cell transplant doctor. It even gets more interesting, I had a list 13 blood tests that were ordered last week, the blood was drawn at the local hospital. Well it seems the hospital did at least one test in in error (a test that was not on my orders, who pays for this one?) and missed a few tests that were on the orders. I wondered why there was 13 tests and only 8 vials of blood, maybe the blood can be shared among tests or maybe not. Rush will draw the blood tomorrow for the missing and tests done in error? I feel I need to have my orders with me and ask the Phlebotomist what each tube of blood is for. Do you think this stuff happens all the time, kind of scary when your life depends on the tests they are doing.

Well I will post an update after tomorrows visit.

June 2011 - My Second Job

Who knew I had more than one job, well my second job I don't get paid for in dollars, but have other rewards.

I have found out this week that no matter how much insurance pays the doctors it is still my job to make sure the doctors talk to each other and order the tests that each other requests. I have a local hematologist (PM) who administers treatments and performs monthly checkups. I have a transplant doctor at Rush (HF) that will perform the actual transplant. I also have patient coordinator (SD) at Rush, who is responsible for scheduling all tests and taking care of all logistics with the transplant.

Here is the problem and where my second job comes in. SD sent PM a letter on May 12th listing all the tests that need to be done before I can proceed to Rush. SD called me one week ago last Thursday to see how things were going in cycle 4 and stated she was scheduling some pre-transplant tests for Friday June 17th at Rush. These tests are done to make sure my heart, lungs, kidneys...are healthy enough for a transplant. SD stated she would call me back on Friday or the Tuesday after Memorial Day. Well Thursday rolled around last week at still no call from SD, so I called her. Things are all set for June 17th, and she wanted to know if I had my tests scheduled that needed done locally with PM. These tests are used to stage the disease before the transplant. Well as far as I knew nothing had been scheduled. SD stated the tests need to be done on June 13th and she needed the results by June 20th. I had to go to PM's office Friday for a treatment, so I checked to see if the tests had been scheduled. Well at first glance at my file I was told they had not received the letter from SD. Then they tracked down the doctor and found he had the letter, but nothing had been scheduled and no orders had been placed for the tests. PM assured me he would place the orders and that I could schedule the tests next week at the local hospital, which I plan to do Monday morning. I have my fingers crossed that PM follows through in a timely manner.

Here is how I thought the above would happen. SD would contact PM. PM would schedule the tests and call me with the dates and times. I guess it is my job to make sure the tests are scheduled and scheduled on time.

The other thing SD told me is we are sticking to the dates she had originally gave me and starting July 7th I should plan to be off for 3 months.

May 2011 - Induction - Cycle 4 - Day 9

Back to the clinic today for a treatment, not much new to report. They did a CBC today and most of my numbers are up, actually all numbers are up but platelets.

WBC	8.8	Up
Grans	7.8	Up
Hemoglobin	14.7	Up
Platelets	110	Down

Talked to the patient coordinator at Rush last week, sounds like we might be sticking pretty close to the dates I posted a few weeks back. She was trying to get everything scheduled and was supposed to call me back last Friday or today, but not to my surprise I have not heard from her yet.

Made a connection with another person in Texas who had a stem cell transplant when he was 44, he is now 52. He gave me a nice outline of how his process went, though it seems to be different for everyone I am hoping the more people I find around my age might give me a better idea of what to expect. I am in the minority, only 3% of the people diagnosed with this disease are in there 40's, the majority of people are 65 and older.

Hope everyone had a nice memorial day weekend. We had two days of rain and one sunny hot and humid day. All in all it was good.

May 2011 - Induction - Cycle 4 - Day 1

Here we go, last induction cycle. It was questionable if cycle 4 would be done due to my good response to the treatment so far, but the decision was made to move forward. The idea is since I don't have many side effects, why not try and beat it down as much as possible.

Met with the local doctor today, he was in a very upbeat mood, cracking jokes and very attentive and not rushed. He told me due to number of questions I normally have, he blocks out 30 minutes for me rather than the normal 15 minutes. That was nice to hear. He was also very concerned about the patient coordinator at Rush not following through and doing what she tells us she is going to do. She was to already contact the local doctor and has not...concerned. Makes second guess my decision to go to Rush for such an important procedure.

Though the doctor did not have all the blood test results from some of Fridays blood test, which I don't understand why they can't get these tests done in time for my scheduled visits. One of the most important aspects of our visit is to discuss the results. So we discussed some of the test results that he did not have from the last visit at the end of cycle 2. Which were all very good. I can't get the doctor to say I am in complete remission, he likes to use the term partial complete remission. Though I think he is holding out for the bone marrow biopsy, which will probably be done in about 3 weeks. If that comes back with 10% or less plasma cells then I might be in complete remission, which is a good place to be in before the stem cell transplant. All in all very positive news, I have to say this is the first time the local doctor gave us hope.

I follow some other blog posts of people with Myeloma, and found a gentleman by the name of Nick who lives in California and receives treatment at the University Medical Center Arkansas, a well known Myeloma treatment center. I had researched and weighed my options of going there myself. Nick is similar in age and has already gone through a stem cell transplant, he is a wealth of information. I have trade e-Mails with him and he answers all my questions, seems to be a great guy. He posted on his blog how UMAS prescribes more of the Revlimid drug than anyone else in the world and the drug is very promising. That is one of the drugs I have been taking and will most likely be on a reduced dose for maintenance therapy after the stem cell transplant.

The doctor made the comment today that I looked physically good and similar to Stephanie's comment people who see me probably can't tell I am sick or going through treatments. They are both right. Other than getting tired at times, I pretty much can do what I want, or should I say anything the boss (Jane) feels is safe. Yard work requires gloves, touch anything or anyone the hand sanitizer comes out. She opens doors for me; which by the way makes me feel like a looser; but I understand why she does it. Hands are the number way germs are passed.

Well back to Iowa tomorrow morning for work, time to get to bed for hopefully a good night sleep.

May 2011 - Induction - Cycle 3 - Day 18

No injections this week or next week. Next week will be my week off of medications except for the dreaded steroid, seems the longer I take the steroid the more it beats me up, mainly affecting my sleep pattern. I can go 24 hours on Monday; usually get at least 4 hours of sleep Monday night; but that eventually catches up with me. This week has been rough on sleep, I drove to Iowa on Wednesday, thunderstorms Wednesday night at 3:00 and a day in Chicago on Thursday. Fell asleep last night at 7:30, Jane woke me up about 9:00 to go to bed and to my surprise told me James Durbin was voted off American Idol, but that is a story for another blog. I woke up at 4:00 this morning starving and had to get something to eat. Usually by the weekend I am back to normal, then start it over again on Monday.

Only had an INR blood test for the blood thinner, next CBC and other blood tests schedule for Friday of next week. Then meet with the doctor on Monday May 23rd.

Yesterday Jane and I spent most of the day at Rush University Medical Center, we had an appointment with the doctor and nurse coordinator to go over a list of questions I had comprised. Our appointment was at 12:00, though I was told to arrive at 11:15 for vitals before we meet. I met my end of the bargain, despite the traffic and going to the eighth level of the parking garage I checked in at 11:16, pretty good. We sat in the waiting room, and sat and sat; the time was 12:30; then shortly the nurse coordinator came out to get us. The doctor had another meeting so his time was limited. The nurse coordinator looked over my list of questions and had the doctor answer the questions she felt she could not answer, then the doctor was excused to go to his meeting. Don't get me wrong, I am not really complaining, the nurse coordinator was able to answer the rest of the questions and was extremely knowledgable. She spent over 2 hours with us and I am sure the time she spent with us might have made her late to other appointments she had. So I can understand why she could have been late for our appointment. I had over 50 questions in an organized document, anyone who knows me well knows that I am a highly detailed and organized person. I spend so much time analyzing and researching, I am continually finding more information to read.

I will highlight a few questions:

Stem cell collection
Question
The standard is to collect enough stem cells for 2 stem cell transplants, which is about 4 million total. I wanted to know if they could collect more and if there would be a benefit to this. My fear here is I have read once I get the high dose chemotherapy stem cells cannot be collected
Answer
The doctor stated stem cells only have a shelf life of 10 years. He also reassured me that in 5 years they could recollect even after the high dose chemotherapy.

Vaccinations
Question
Do I need to be concerned if Lexie just received the chicken pox vaccine or if my niece or nephews have vaccines?
Answer
Chicken pox vaccine is not a live vaccine and there is no concern. What I took away from this is as long as the vaccine is not a live virus there is not a problem. Though I was told I will need to be revaccinated in a year after the SCT.

Hospital Visitors
Question
The hospital sent me information that stated the ward I will be in cannot have any visitors under the age of 12. Lexie is 10, almost 11 any exceptions?
Answer
No exceptions, and the reason why is very understandable. The point that was made is that Lexie might have virus's that I am immune to, but the person one room over might not have that immunity. When Lexie comes to visit she will wait in the family room and I can come out to see her once I suit up with a mask, gloves and gown.

That is just a small sampling, there were many more questions. Probably one of the more important questions was will there be 3 or 4 cycles of induction therapy and what is the schedule for the SCT?

The doctor stated there will be 4 induction cycles, even with my good response. We are just going to keep hammering the bad cells out. So with that information we have a very tentative schedule.

Tentative Date	Step
June 13	Bone Marrow Biopsy Skeletal Survey 24 Hour Urine Test Labs - Complete Panel
June 17	Muga Scan Pulmonary function test Chest Xray EKG ...
July 7	Line surgically implanted in my chest
July 8	Start Neupogen Shots - These shots are self administered and cause the body to start producing more stem cells. I was told these are $23,000 a shot, thanks goodness for insurance.
July 11	Mobilization Shot - Tells the stem cells to leave the bone marrow and move into the blood stream
July 12-15	Stem Cells Collected
July 18	Office Visit
July 20	High Dose Chemo
July 21	Admitted to Hospital

All of these date are very tentative and will most likely be refined or changed, but the steps will most likely be the same.

April 2011 - Induction - Cycle 3 - Day 11

Well it has been a busy couple days, fifth grade orchestra concert Wednesday, fifth grade open house last night...

Went for my last injection for cycle 3 yesterday, counts were down but okay. This injection went very smooth, had our favorite nurse.

WBC	5.1	Down
Grans	3.8	Down
Hemoglobin	13.7	Down
Platelets	131	Down

All counts except platelets fall into the normal category.

I have come up with many questions regarding the stem cell transplant and will be meeting with the doctor at Rush next Thursday to get these questions answered. I do so much research and have so many questions, I am glad the doctor is able to sit down with me and discuss. He knows I have many questions and has slotted a large amount of time for me. I have well over 20 questions. While visiting the doctor next Thursday he has also scheduled some additional labs.

Happy Mothers day to all the Moms have a great weekend.

April 2011 - Induction - Cycle 3 - Day 8

What a nice weekend, no rain for two plus days! Got a lot of walks in, walked 2 miles Saturday, a mile on Sunday and a mile today. Even played tennis for a half an hour on Sunday. It was nice to be out and enjoy the weather.

Back to the clinic today for another injection, my blood counts were surprising very good.

WBC	5.4	Up
Grans	4.8	Up
Hemoglobin	14.6	Up
Platelets	160	Down

All numbers are up since I started treatment except for Platelets.

Treatment Explained
I thought I would describe my treatment to give everybody a better understanding of the treatment. The doctor does not call it chemo, but the nurses do. I have two drugs injected, one is for anti-nausea and the other is a drug called Valcade (Bortezomib). Valcade is a targeted therapy, it prevents cancer cells from dividing, prevents new cancer cells from forming and causes cancer cells to die. Not all people respond to Valcade. Valcade does all this with minimal disruption to normal cells. So no hair loss (but the will happen with the Stem Cell Transplant along with many other side affects), really haven't had any side affects from this medication. The most common side affect is neuroupathy, which I have not experienced either (I hope I didn't jinx myself).

I arrive at the clinic at 1:05 (5 minutes late on purpose to let the waiting room clear out for the 1:00 appointments, otherwise it is standing room only). The clinic and the doctors office is the same place. I then wait in the waiting room for 5-10 minutes and then I am called back to the chemo area. In this area there are about 10 reclining chairs, some patients receiving treatment have a slow drip IV and have to spend 3-4 or more hours getting treatment. My treatment is as follows:

- First I get a stick in the arm and they draw blood for a CBC and sometimes another vial of blood is drawn for a INR test.
- Next saline solution is injected into my vein.
- Then I wait while they run the CBC, if the numbers are too low then they have to find the doctor to decide if treatment is to be given, I only had this problem during cycle 1. The CBC takes takes the most time of the treatment.
- Vitals are checked next, blood pressure, temperature and oxygen level.
- Finally the medications are administered. They use the same stick used for blood draw and clip in the anti-nausea medication, next a little more saline then the Valcade and a little more saline. Takes no more than 5 minutes.
- That is it, the treatment is done.

All this takes about 30 minutes, depending how busy the nurses are. It is really not that bad, not worse than a blood draw, unless...keep reading.

Today's Visit
Today's visit was a little different. First the blood draw was slow, then the injection of the saline started to hurt, I noticed the nurse was having a hard time injecting the saline. I looked down and my arm had a lump where the needle was. I brought this to the nurses attention and she stopped the saline injection and pulled the needle out. This was really uncomfortable for about 5 minutes. The nurse then stuck another vein to inject the medications and all went well. I am assuming the nurse did not pierce the vein completely the first time and the saline was going under my skin instead of into the vein. Anyway all is back to normal now.

Last Thursday's Visit
Last Thursday's visit was a little uncomfortable also the nurse stuck a vein in my forearm instead of the elbow. This caused a little lump for a couple days and a connecting vein turned red. Then a two inch by one inch bruise formed. Looks like Jane has been beating me, though you know that is far from truth.

There are three nurses in the chemo unit, I am starting to pick favorites.

April 2011 - Induction - Cycle 3 - Day 4

Boy I have been crabby the last two days and I know it, seems the more doses of steroids I get in my body the harder I crash. Bless my family for dealing with my crabbiness. The good news is I should be at the bottom of my crash this week and ready for a great weekend.

Back to the clinic today for another injection, while I was there I also picked up some more blood test results. The doctor has not presented these results yet, but I was curious. So here are the unconfirmed results. The blood test I was waiting for was the Lamba Free Light Chain, originally this test was high (7350), the normal range is 5.7 - 26.3. The "unconfirmed" test result from last Monday's test was 17.9! These are some powerful drugs.

Blood test results were pretty good also.

WBC	4.5	Up
Grans	2.8	Down
Hemoglobin	13.6	Down
Platelets	225	Down

It is expected that these numbers would be going down due to the treatments, so no real surprises.

April 2011 - Induction - Cycle 3 - Day 1

Well here we are at cycle 3. We met with the doctor at 1:00 today and I was not sure what to expect at my doctors appointment and was a bit nervous which my blood pressure reading validated this fact; though by the time I received my treatment by blood pressure was back to normal. I also gained 1 pound, which I was told not bad with being on steroids. I was also cleared to play tennis, jog and do pretty much anything I wish, the doctors word of caution was to not hit take an injury to the head. I still need to stay away from sick people, guess who was sick today, you got it the doctor. Wasn't sure if I should have put on mask or ask him to, there was no hand shaking today he said he will shake my hand twice next visit.

Here are test results...Drum Roll Please...Kidney and liver functions are stable. The 24 urine analysis showed no proteins, this number was 4gm when I started and was one of the factors leading to my diagnosis. I said to the doctor that is good news, he corrected me and said that is excellent news, the disease is not detectable in the urine anymore. I asked if I was in complete remission, he did not go as far to agree with this statement, yet. The doctor also did a Freelite test last week, which he did not have the results yet, this test tests for free light chains (fragments of monoclonal proteins) in the blood. This test originally was high (Lambda Light Chain) with a result of 7,350mg/L when the normal range is 5.71 to 26.30. For my next visit he is ordering a Serum Protein Electrophoresis test to check for monoclonal proteins in the blood, similar to the urine test but checks the blood; this test was originally normal. But I believe the reason the test was normal was due to the fact the kidneys were dumping the proteins into the urine. Since the urine shows no indication of the proteins he wants to make sure they have not entered into the blood (I was not smart enough to ask this question when we met with the doctor, but it dawned on me when I was writing the blog entry). We hope all of these tests provide the same result as the urine test.

So what does all this mean? My local doctor will be talking with the doctor that will be doing the stem cell transplant to see if Cycle 4 of treatmenst is needed. If they agree Cycle 4 is not needed then they will be moving up the stem cell transplant. I kind of think why not continue with Cycle 4 to maybe blast out a few bad cells that might be undectible in tests. Though that might just be me conscious trying to put the stem cell transplant off for four more weeks.

Blood test results were pretty good also.

WBC	4.2	Up
Grans	3.8	Up - Almost to 2003 Levels
Hemoglobin	14.2	Up
Platelets	274	Up - Past 2003 Levels

Thanks agains for all the prayers, cards, thoughts and positive energy.

April 2011 - Induction - Cycle 2 - Day 28

Back to the clinic today for the blood draw, CBC is looking good to me.

WBC - 3.4 (Up)
Grans - 2.9 (Up)
RBC - 3.81 (Up)
Hemoglobin - 13.5 (Up)
Platelets - 269 (Up)

All numbers are going up, at a much more rapid rate than Cycle one, I believe this to be good news. I will get the rest of the test results and my doctors thoughts next Monday. All in all today was a good day.

They also tested my INR today, which is used to determine how thin my blood is, 1.7 was the result. The doctor wants this number between 2.0 and 3.0, so it time again to change the dosage of my Warifin.

Okay I realize that many people reading the blog might not know what these numbers mean, and if I read these numbers a year ago they would not mean much to me. So I will do my best to explain them the best I know.

Definitions
WBC is white blood cell count, white blood cells defend the body against infection. There are many types of white blood cells including neutrophils (grans), lymphocytes, monocytes.

Grans / Neutrophils are a type of WBC, grans are responsible for fighting infection. When this number is below 1, then special precautions are taken, such as no fresh fruit or vegetables, all meat must be well done...stay away from crowds and sick people.

RBC are red blood cells, red blood cells pick up oxygen and carry it the body's tissues.

Hemoglobin this is the part of the red blood cell responsible for carrying the oxygen to the tissues / organs. If this number is too low, it causes fatigue and loss of energy and other complications.

Platelets are a type of blood cell that helps the blood to clot. If this number is too low bleeding and bruising could happen easily. If it is really low (below 10) bleeding can happen for no apparent reason.

Reference Ranges
Keep in mind that different labs can have slightly different reference ranges and reference ranges are different between males and females. The ranges I listed below are the ranges on the paperwork I receive from my Hematolgist. These ranges give a good indication of how treatments are going. The more diseased cells destroyed the more room in the bone marrow for normal cells to grow. Keep in mind the ranges and numbers I post represent thousands so 4.1 is really 4,100 white blood cells in a sample.

WBC - 4.1 - 10.9
Grans - 2.0 - 7.8
RBC - 4.2 - 6.3
Hemoglobin - 12.0 - 18.0
Platelet - 140 - 440

I hope you enjoyed todays lesson on blood.

April 2011 - Comments Welcome

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April 2011 - Induction - Cycle 2 - Day 21

My week off of being a human pin cushion ends tomorrow; though the needle sticks in the arm really hasn't bothered me; back to the clinic for a blood test tomorrow. I was reviewing my blood tests from cycle 2 and so far the WBC has climbed every time I had my blood tested in cycle 2, so I do have some high expectations for tomorrow's blood test. I expect my platelets to be down since two of the medications I am on reduce platelet production. I believe there will be 4 vials of blood drawn tomorrow, 4 different tests.
- CBC
- INR - Blood thinner
- Chem - Kidney, Liver...functions
- Free Light Chain - Checks the lamba and kappa light chains, the original test was really out of whack, hoping for better numbers.

Anyone every complain about peeing in a cup? Try a 24 hour urine test, when you pee in a jug for 24 hours, and the jug has to be kept cold. Not only do I get to go to the refrigerator for a drink, but to expel the drink also. I get to start this test tomorrow. I did one of these a few months back, which led to my diagnosis. The test showed high monoclonal protiens, the test that starts tomorrow will show how well the first two cycles of treatments are going.

Well it was a pretty good weekend despite the weather. Down to just one medication this week, just the steroid.

April 2011 - Induction - Cycle 2 - Day 17

Nice day today, the weather was good and was able to get out for a walk. The last couple days have been pretty good. Though Jane is suffering from a toothache and will have a root canal done tomorrow (Thursday), she is having a tougher time than me right now. She is in a lot of pain and on antibiotics, which gave her the chills in the middle of the night last night.

Had a call today from the Patient Coordinator from the Hospital that will be doing the Stem Cell Transplant (SCT), and have some updated information. I will complete Cycle 4 of my treatments in the Middle of June. The Patient Coordinator states the SCT usually occurs 6-8 weeks after the last treatment cycle. So, here is a tentative schedule on how things will occur. After cycle 4 is complete, it will be test time. Another bone marrow aspiration, heart test, lung test, blood tests, skeletal survery...and any other tests the insurance company requires. All of these tests can be done at the local hospital. Then around the beginning of July I will meet with the involved parties at the hospital. At this time the hospital will also submit all the necessary paperwork to the insurance company for approval. This sets the SCT process to start around the middle to end of July.

Below is some additional information from the Patient Coordinator:
- While in the hospital I will get to walk the halls 4 times a day
- Most people are only in the hospital two and half weeks
- Only one day / dose of high chemo, possibly as out patient then check into the hospital the next day to start the proces.
- I can bring my computer and the hospital has wireless Internet access.

I have had a lot of offers of blood donations in my name (thanks for all the offers), so I brought this up with the patient coordinator, and only platelets can be directed to a patient. Platelets only have a 5 day shelf life and would have to be donated directly at the hospital. There is some type of virus check against the platelets and if the donator has had a virus that I have not, then they can't be used (I think I understood this right).

April 2011 - Nice Weekend

Starting to recovery from my down days of last week.  The good weather helps with this and being able to be outside.   Looking forward to hopefully two good weeks before Cycle 3.  No scheduled doctors appointments or blood tests this week, first week I have had off in about 6 weeks I think. 

A rash has started on my arms, not sure if this is caused by the medications or the heat (unseasonably warm this weekend) or something else...the rash seems to come and go.  

April 2011 - Induction - Cycle 2 - Day 11

Back to the clinic today for my last injection in cycle 2. CBC counts so far are holding strong for this cycle.

WBC - 3.2 - Up a little from Monday
Grans - 1.9 - Down a little from Monday
Platelets - 102 - Down from Momday but expected.

I had a lot more energy during cycle 2 treatments, though both the doctor and nurses told me I would probably have less energy. Energy levels were pretty good up until yesterday and today, though I think the steroids might be partially the cause for energy loss.

Now my body gets two weeks to rest and rebuild before cycle 3 begins. As each cycle completes I am one step closer to the stem cell transplant; which the more I read about the less I look forward to it.

April 2011 - Induction - Cycle 2 - Day 8

The weather her yesterday was nice and spring like, got out for a walk yesterday and today. Not 100% sure the walks are having a positive impact on my treatments, but at this point in time I am going to say they are helping my counts. I also switched to drinking a liter of Smartwater a day, which is plain water enhanced with electrolytes. I started this last week and maybe that has an impact on my counts also? I spend a lot of time on the Internet searching and reading and if I find something that seems simple to try, that might help, I run it past the nurses or doctor and try it out. Sometimes I think the nurses and doctors think I am crazy, but nobody cares more about me than me. Spending time on the internet can be a very scary, sometimes it can play be a roller coaster on ones emotions, I am surprised Jane has not taken my computer away yet.

Back at the clinic today for another treatment and now what I wrote above might make more sense. My CBC test came back pretty good, I was concerned because at this point in cycle 1 my counts really took a dive.

WBC: 2.8 - up from last Thursday
Grans: 2.4 - Wow - best since 2009
Hemoglobin: 12.3- Wow - Best since 2009
Platelets: 120 - Down but expected, the drugs destroy and prevent platelet production. Just hoping the platelets stay above 50 when I am rechecked on Thursday. When the platelets drop below 50 is when extra precautions are required.

My counts might explain my increased energy level today. I actually had good energy today and was not tired at all, though Wednesdays and Thursdays are usually my down days, that is when I am crashing from the steroid. Though Cycle 1 Week 2 I was taking power naps during lunch and before dinner.

Last night I experienced a new side effect, the bottom of my feet swelled up and had an itchy rash from my ankle to the bottom of my foot. I elevated my feet and everything returned to normal. Asked the nurse about this today and she stated it could be a side affect of the drug Revlimid that I am taking and it was nothing to worry about since it cleared up quickly.

Taking the Zantac has also helped my steroid enduced hoasreness, I don't think I sound hoarse at all, though Jane tells me I sound a little hoarse.

Hope you are still awake after reading my wordy entry.

My quote for the day:

"It doesn't matter what you've heard
Impossible is not a word
Its just a reason for someone not to try".

This is a lyric from a group by. The name Kutless, song title - What Faith Can Do. It is a very inspirational song, click the link to listen: Kutless - What Faith Can Do.  I never let my girls use the word impossible, because I myself never think anything is impossible.

March 2011 - Induction - Cycle 2 - Day 4

Back to the clinic today for the second treatment in cycle 2. Mondays treatment had a little impact on my CBC numbers, but nothing too bad. WBC actually went up to 2.6 (Grans down to 1.5), platelets down to 163 (still in the normal range, though I expect the platelets will continue to drop through next week due to the treatments). If the grans number goes below 1.0, then I have to be extra careful about what I eat (no fresh fruit, everything must be thoroughly cooked...).

Monday and Tuesday were pretty good days, feeling the affects of the medications yesterday and today; feeling a little tired; but not too bad. Actually got a walk in on Monday and Tuesday, trying to decide if I have the energy for a walk tonight.

Taking Zantac in the morning of Mon, Tue and Wed really helped the heart burn / acid reflux from the steroids.

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March 2011 - Induction - Cycle 2 - Day 1

Here we go with cycle 2 of treatments. Boy I was nervous going to the doctor today, doctors make me nervous anyway; I have been told by my primary doctor that I have white coat syndrome. Today the doctor could have told me the treatments are not going as well as expected or he could have said things are working as planned. The only problem we didn't know what that would be until 1:15.

The test they use to test the effectiveness of the treatments is the Beta 2 Microglobin blood test. I can't explain really what this test is all I know is my numbers when I started and my numbers after cycle 1, along with the valid ranges. The valid range is any number less than 2.51. Before I started treatments my number was 5.53. Today, after cycle 1 treatments my number was 2.34. Looks like according to this test I have responded well to cycle 1 treatments. There will be additional tests after cycle 2 to test for free light chains that spill into the urine, which I currently or had a very large number of these before I started treatment.

Blood counts for today; which most numbers were up from Thursday. WBC dropped to 1.9, but grans were up to 1.6 I really don't understand why the WBC dropped to 1.9, but the grans seem to be more important for fighting infections, so that is good. Hemoglobin was up to 12.1 the highest it has been in a year and platelets are up to 183 highest in two years.

I also found out today I should not be taking any multivitamins or eating any antioxidants while on treatment. Antioxidants make it harder to kill the bad cells, which makes the drugs less affective. Bye bye vitamin water and green tea, though I did not consume large amounts of these, how much more liquids can one really consume after 3 liters of water.

Both the doctor and nurse told me that I can expect to be more tired during cycle 2, I can deal with that if we can achieve the net result.

I thought it was courious when I was updating my blog a John Mayer song came on, the title was "In Repair" The song has another meaning, but seems to apply in many ways. A line in the song is "I'm in repair i'm not together but I am getting there".

Today was a good day!

Thanks for everyones prayers, they must be working.

Today gives us hope.