One Day and Counting

My first round of Melphalan yesterday afternoon went well and I'm receiving the second round as I type this post. So far, mild nausea is all I can report which is great news! I've received several pre-meds to prevent nausea and they seem to be doing a great job. Apparently the Melphalan can kick in days later and I could experience flu like symptoms, changes to my taste buds, mouth sores and other side effects. Also, the bottoming out of my immune system is expected in the next 10 days just as I experienced after the Cytoxan a few weeks ago.

Tomorrow is the big day! I will be getting my stem cells transplanted/re-infused tomorrow around 8:30 am. For this entire Autologous Stem Cell Process which takes months to prepare for and months to recover from, it is actually the 15-minute re-infusion of the cells which is considered the main event. Seems a bit anti-climactic, doesn't it?

Re-infusion day is considered Day "0" and each day thereafter is Day+1, Day+2, Day+3 etc. Some people consider it a new birthday of sorts. Unless the new birthday comes with very expensive jewelry from my dear husband, I think it will simply remain Re-Infusion Day on our calendar. Although Dave just reminded me that today is Fat Tuesday, so perhaps a trip to New Orleans would be a great way to celebrate Re-Infusion Day next year.

Thanks for your comments. I was happy to see several new people joining the blog including a few of my fellow "Myelomians."

I'm Back

I just got all checked into the Christiana Care Inn and Spa for my all-inclusive four day getaway. I have a nice private room in the Bone Marrow Transplant unit. Nothing happening yet. Just as last time, we may wait for hours until the chemo is administered. Mom and Dad are with me and we are occupying ourselves with magazines, word games, solitaire and a few zzzzz's along the way.

A Comment on Comments

A few people have mentioned that they are having problems leaving comments on this blog. At the risk of insulting anyone's intelligence, I thought I would walk you through it. I set this up so that you don't need a Blogger account, because who needs yet another user name and password to keep track of?!

• Under the post, click on "O Comments" "1 Comments" "2 Comments" etc.
• Scroll down until you see the "Post a Comment" box
• Type your comment in the box
  
• At the "Select Profile" drop down, choose "Name/URL"
• Window will pop up; enter your Name and leave URL blank
  
• Click on "Post Comment"
• You will be asked for a word verification
• Click on "Post Comment"

I hope this is useful, and if you haven't left a comment yet, please do...I would love to know who is tuning it. That way, I know who to include on our Christmas card list this year. :)

This week brought the dreaded loss of my curly locks. I started losing my hair by the handfuls on Wednesday and it hasn't taken a break since. I'm certainly not happy about it, but have had sufficient warning and I got to enjoy my hair for two full weeks after the Cytoxan. Tomorrow, I'm going the the salon for a new 'do. Stay tuned!

On Monday, I will be admitted to the Bone Marrow Unit at Christiana Hospital. I will be there at least three days...two days of Melphalan and the third day for the actual transplant when I will receive my stem cells back. Dave and I are preparing ourselves for a real battle this time. In the Dr's own words, the Cytoxan was a "trial run."

As always, thanks for all the support, prayers and well wishes. They are VERY appreciated!

A Few Days of Rest

Dave and I went to see my Oncologist this afternoon. He is pleased with my progress and attributed the one-day stem cell collection to my young age (I guess age is always relative) and good health (well, besides the cancer, of course). He told me to enjoy a few days of rest before we venture on to the next step.

Assuming there is a bed available, I'll be back in the hospital next Monday for a few days. It's time to bring out the big guns with a chemotherapy drug called Melphalan. I'll receive two days of this chemo and then on the third day, I will get my stem cells back. There will, once again, be a period of side effects including nausea and my white blood cells will bottom out just like the first round. The biggest concerns are infection, dehydration, extreme nausea, etc. Any of these could mean an extended stay in the hospital. The Dr. said the average stay is 4 days; however, Dave and I have met transplant survivors in our Myeloma support group that have been in the hospital up to 16 days. I am hopeful that I'll tolerate this next step as well as the first round of chemo, Cytoxan, but that may be a bit too optimistic. Regardless, I am confident that it's just another big step towards the finish line!

One and Done!

What a day! I went to the Dr. this morning, face mask and all, to get my next round of blood work. Surprisingly, my white blood cell count went from an extreme low of .6 on Wednesday to an extreme high of 13.4 today (normal is 3.5 - 11). I guess you could say the news "burst my bubble!" Off with the face mask and my WBC's were back in the game fighting infection. This also meant it was the perfect time to harvest my stem cells, so off to the hospital we went.

Typically, stem cell collection is an outpatient procedure and takes about 5-7 consecutive days. In some cases, it can take up to two weeks for stubborn cells. Everyone is different. Due to the blizzard that is upon us, this was a major concern. How would we get back and forth from the hospital this weekend with 20+ inches of snow on the ground?

They harvest enough cells for two transplants and the cells are frozen until needed. In my case, I need between 5 and 10 MILLION stem cells. That number is unfathomable to me. So, late this afternoon after Cathy Trilumen was hooked up to the stem cell machine for over 4 hours, the transplant nurse gave me the great news that they had harvested over 10 million stem cells in one sitting! I am a super stem cell producer! A little known fact about myself that I can share at cocktail parties for years to come.

Dave and I couldn't be happier. I have reached another milestone in this process. Monday, I will have more details on the next step.

"Ten million stem cells!"

Bottoms Up!

Bottoms up, NO....Bottomed out, YES. I just returned from my Dr's office and my white blood cell count has bottomed out as expected. It went from 2.4 on Monday to .6 today (normal is 3.5 - 11). I am officially living in a bubble now. No more outings and very few visitors.
At this point the concern is infection and/or fever. Just in case, the nurse is reserving a hospital bed for me for this weekend...makes it sound like a 5-star hotel. Despite this news, I continue to feel pretty good. I will see the Dr. on Friday morning and will have my next update then.

As always, thank you all for your blog comments and emails. They are the highlight of my day!

Time

A couple of weeks ago, Dave and I received the sad news that our friend's Mother had passed away. She had very aggressive pancreatic cancer and was only diagnosed a couple months ago....only weeks, really. I haven't been able to get this off my mind. It is a great loss like this that reminds me, once again, how lucky I am to have been diagnosed so early and that I didn't have to start treatment for several months.

Because of my early diagnosis, Dave and I were able to plan and enjoy a beautiful wedding, a tropical honeymoon and weekend getaways on our boat. We were able to enjoy family, friends and each other. We were able to catch our breath and make a plan...be more proactive than reactive. We were able to read, understand and ask questions about Myeloma. We were able to laugh and cry, be happy and sad, be angry and accepting. And even though cancer consumes us every minute of every day, there were brief moments when we were able to forget.

We had the gift of time that our friend's family did not have. We had the gift of time that my own family didn't have when my brother was diagnosed with testicular cancer so many years ago. We had the gift of time that most families touched by cancer do not have. For this time, I feel very fortunate and very blessed. It is this time, as I sit here occasionally bored these days, that I treasure and am forever grateful.

Nothingness

I have nothing to report today, nothing to write about and nothing of interest on TV. I am officially bored with being home and it's only been one week; however, I can get used to wearing pj's on a daily basis. Nothing says relaxation more than an elastic waistband.

I guess I'm a little overzealous saying I have nothing to report. I went for blood work today and as expected, all my blood counts are dropping. When they hit bottom varies for everyone. I will go back on Wednesday and hopefully we will see which way they are trending. But, I continue to have manageable side effects so I am pleased with nothing exciting to share.

As always, many thanks for your comments and support. I still feel like I'm only in training, but I'm going to finish this marathon!

Feeling Good

The last couple days I've been feeling very well! I've been eating small meals and my stomach has accepted them easily. Starting next week, I will get blood work every other day. My Dr. will be watching for my blood counts to drop, especially my white blood cells which fight infection. As they drop, I must avoid public places and anyone who may be ill. I may also feel more fatigued. The chemo I received in the hospital will continue to work on destroying the cancerous cells as well as other rapidly dividing cells including those in my stomach, mouth and hair. That is what causes nausea, mouth sores and hair loss. As my blood counts hit bottom, the Dr. will look for them to start on the upswing and at the right point, it will be the perfect time to start harvesting my stem cells. That will be in about 2 weeks and will be the next milestone in this journey.

Home, Sweet, Home

I am home, snug as a bug in a rug. Lounging in my soft pants with peppermint tea by my side. So wonderful to see the sunshine and blue sky.

Still Here

It was not the most pleasant 36 hours but I am feeling pretty well this morning! Since last night I've been getting lots of fluids to protect my bladder from the Cytoxan, the chemo that I received on Tuesday evening. Until early this morning, I was very nauseous and not able to keep down any water (let alone food); but I'm happy to report that I'm slowly sipping, and enjoying, a frosty cocktail of chocolate Ensure on the rocks. Nothing says "top shelf" more than a white styrofoam cup and bendy straw. All I need now is a pink paper umbrella and call it a day at the beach.

When I'm discharged from the hospital today, I will go to my Dr's office to get a shot of Neulasta, the drug that will promote stem cell growth. Then home to my own bed!

This reminds me to mention something that I get questioned on from time to time. When my parents and I went to MD Anderson in Houston for a second opinion shortly after my diagnosis in April 2009, we assumed at the time that we would return there for the stem cell transplant. This would involve relocating to housing or a hotel near the hospital for about 3 months. After researching, reading, talking with doctors and other transplant patients, I realized that the SCT process is the same no matter where you go. Although there are facilities that perform more SCT's than others (MD Anderson does hundreds annually and Christiana Hospital only does 40), it is the same. So I decided that it was more important to my recovery to be in my home and near family and friends. At this point, I am confident in my decision and look forward to being in my own bed later today.

I am very thankful and grateful and entertained by your comments and well wishes here and on facebook. Thanks for contributing to my recovery!

Finally!

At 6pm I just starting receiving some pre-meds to prevent nausea. They will be followed by the chemo, Cytoxan. So far, all is good. Had a nice visit from my parents, Dave and my dear friend DD.

Hurry Up and Wait

It's 2pm and I'm all tucked in my hospital bed sporting the latest in haute couture medical fashions. Just waiting on the medication to arrive. Nothing to report except boredom and a roommate that has the TV volume on 10!

Ready, Set, Go!

Down to the Wire

I spent a nice day at home today just getting the house in order and doing a little relaxing. Going to our dear friends' house for dinner tonight.

I have an appointment with my Dr. at 10 am tomorrow and then I will be admitted in the hospital for one night. Ugh!

Many thanks for D--- and Anita for your comments! Hopefully others will follow. I look forward to them.

Getting Closer

Friday was my last day at work. I hope to return at the end of April after the transplant is complete. Cathy, of course, tagged along for the last three days at the office. I found out that she doesn't like traveling in the car. She makes driving a bit challenging, but other than that, she's just along for the ride...pun intended.

On Tuesday, I will be admitted to the hospital for one night to get the first of two high-dose chemotherapy treatments. It is a drug called Cytoxan. The chemotherapy I've had up until now has had minimal side effects, but that is not the case with Cytoxan. I should expect major side effects including nausea, severe fatigue, mouth sores, lowered immune system and, unfortunately, the dreaded hair loss.....all this and more from just one dose.

One day after the Cytoxan, I will get an injection of Neulasta. This drug is a white blood cell booster and will stimulate the growth of stem cells in my bone marrow. A common side effect of Neulasta is bone pain. This drug will help prepare my body for the stem cell collection which will be in approximately 2 - 3 weeks.

After my 24 hour jaunt in the hospital, I will come home and wait and watch and hope that the side effects are manageable. I guess Cathy and I will be spending our days with Oprah and Ellen.

Cathy's First Day

A nurse came to the house today to show Dave and I how to care for Cathy. Luckily, she is very low maintenance. In fact, she only needs attention once a day to flush her three lines. The nurse will visit once a week to check on her and change the bandages. Oh, but she does need some creative wrapping with saran wrap in order for me to take a shower. I'm a little sore in the shoulder area, but all in all, everything is on track.

Cathy Trilumen

Today I had a Hickman triple lumen catheter put in my chest. It was a simple procedure and all went well. Luckily, I was under anaesthesia and don't remember a thing. It is located in the upper left side of my chest. I asked the surgeon after I woke up if he had performed the complimentary breast augmentation, but no such luck. Bummer!

This gives you an idea of what the catheter looks like except I have three lines instead of two. I named her Cathy Trilumen. I'm sure she and I will become the best of friends.

Long Overdue Update

Last Tuesday, I completed my 5th cycle of Revlimid and Velcade therapy and I’m happy to report that the Myeloma has responded perfectly. There are three markers that I’ve been tracking and they’ve all dropped to the normal or near normal range! For anyone interested in the “numbers,” here they are from August ‘09 until now (I will spare you the specifics what each one means):

IGG: 4270 to 1140 (normal is 600-1700)
Lambda: 236 to 23.2 (normal is 5.7-26.3)
M-Spike: 3.2 to .3 (normal is 0)

What this also means is that I am perfectly positioned for next step in the process which is a stem cell transplant. I am going to have an Autologous Stem Cell Transplant, meaning I will be my own donor. My stem cells will be harvested from my blood, frozen until needed and then given back after receiving high doses of chemotherapy to destroy the cancer cells. To me, this is more like recycling than a transplant, but it is called a transplant, nonetheless. It’s kind of like digging up your tulip bulbs in the fall, weeding your garden, replanting the bubs and growing new, healthy, beautiful tulips in the spring. The SCT process takes almost as long with up to 6 months for full recovery.

Most people assume that a transplant is from another donor, and in the stem cell business that is called an Allogeneic Stem Cell Transplant. That would involve receiving the stem cells from a sibling or match from an unrelated donor. Allogeneic SCT’s are very risky and sometimes used for treatment of MM, but an Autologous SCT is the first step for patients who physically qualify to be their own donor. One other note, a stem cell transplant is very similar to a bone marrow transplant; however, the stem cells are collected from the peripheral blood and not from the bone marrow itself.

My SCT will start on January 26 when I will be admitted to the hospital for one night to receive the first of two high dose chemotherapy treatments. More on that to come. Prior to that, I will be having a surgical procedure tomorrow to get a TriFusion or Hickman catheter in my chest. This will be used during the entire process to administer the chemo, collect and infuse the stem cells and give me fluids or other drugs needed.

What is Multiple Myeloma?

So what is Multiple Myeloma? It is a blood cancer of the plasma cells. Plasma cells are a type of white blood cell that resides in your bone marrow. Because white blood cells fight infection, multiple myeloma can lower your body’s immune system.

Myeloma cells also make bones weak and cause fractures. It is quite common for people to be diagnosed only after a major fracture of the vertebrae or other major bone. I am very, very fortunate that I have not experienced any bone pain or fractures; however, I do have three small bone lesions. To strengthen bones, Multiple Myeloma patients are given drugs typically used to treat Osteoporosis but they are administered much more aggressively. I received Zometa once a month for several months, but after experiencing flu like symptoms including a fever, I switched to Aredia which I’ve tolerated very well.

So how common is Multiple Myeloma? I’d never heard of it and come to find out not many people have. There are only 20,000 cases diagnosed in the US annually. The median age is 70 years and it is more common in men. I’m far from a mathematician, but by my calculations a female at 43 years old has a .00023% chance of getting this disease. With those odds, I should start playing the lottery.