The Envelope, Please....

...and the winner is, well, it's not the Myeloma!

Went to the Dr. today with the fam in tow: Dave, Mom and Dad. After waiting for about two hours, a couple rounds of charades and numerous mindless conversations to keep us occupied, the final verdict was revealed. The bone marrow biopsy showed no detectable cancer cells and the blood results showed a mere trace of protein! Dr. M calls this a complete response; although he is a bit reluctant to call it a remission (he explained that myeloma is not a type of cancer that lends itself to a true remission) the complete response to the chemo and the stem cell transplant is as good as it gets. Based on these results and my demographic, he expects that I'm in a good position to enjoy the 5-year average of myeloma inactivity.

Despite this great news, we have some decisions to make. Recent studies show that maintenance chemotherapy in the form of revlimid and velcade can prolong the inactivity period. This maintenance therapy would be administered for 18 months. The possible downfall of this aproach is that if and when the Myeloma relapses, my body may become immune to these frontline treatments. We have about a month to decide which route we want to take.

As far as other next steps, I will resume the Aredia therapy for my bones, continue to take an antibiotic and antiviral medication daily and have monthly blood work and Dr. visits. But, this weekend is focusing on celebration and thanks!

Oh, one other bit of good news, for the first time in months, my white blood cells are in the normal range.

The end to this journey's long chapter couldn't have come at a better time. The spiral bound notebook I've been carting around and writing Myeloma notes in for the last 13 months is down to just a few blank pages. Where could I possibly find another notebook that so resembles Myeloma cells under a microscope? It's time to place it in the archives of life.

Biopsy Day

Hi everyone, it's been a while!

I had a bone marrow aspiration and biopsy today. I'm glad it's over, but it's one of those things that proves, once again, that the anticipation is worse than the actual event. I'm not saying it's something I'd like to do everyday, but the pain was tolerable due to the pain killer and local anesthetic. Speaking of pain killer, I had to get a script filled for Demoral prior to the appointment which they gave me through an IV. Come to find out, Demoral in a vial is not something to get at your neighborhood Rite Aid. I had to go to some podunk pharmacy in a not-so-desirable section of town. It was like walking into a time warp...I think their shelves were stocked with the same merchandise for the last 20 years. I was afraid to sit in the waiting chairs for fear of catching some disease worse than cancer. I think the pharmacist, who was wearing a black concert tee shirt, got the vial from a junkie in the alley behind the store. There were two teenage boys working there who were probably kidnapped as infants and raised in the apartment above the pharmacy. I couldn't wait to get out of there before the police drug raid. Ah, the things we have to do to support our Myeloma habit. But, it was all worth it when the Demoral did it's job of making me very comfortable.

I will get the results next Friday morning and will certainly post something then. In the meantime, I am looking forward to spending the weekend on the water. The "LS2" is all settled in her new home.

Lazy Susan II

Cantankerous Cells

I had bloodwork today and was frustrated to find that those stubborn white blood cells are still low at 2.2. The Oncologist says this is normal and I have to be patient until 90 days post transplant to see where they settle. Speaking of 90 days, it is coming up quickly and I scheduled my bone marrow biopsy for May 20. There are three major factors that will contribute towards the state of remission: protein in my urine, protein in my blood and the percentage of myeloma cells found in the biopsy. I received the results of my 24-hour urine collection today and was happy to hear that it was negative for protein! So that's one down, and two to go.

My white blood cells must be in cahoots with my hair cells because there's been no activity for almost 3 months, but I am finally getting some fuzz on my head! My eyebrows and eyelashes got thin and grew back very quickly, but the hair on my head has been slow growing. So far, I can confidently say the hair is dark (I was convinced it would be gray) but the jury is still out on the curly vs. straight thing. Many cancer survivors say that their hair grows back curly, so I've been a little worried that I might end up with my natural curls plus chemo curls. I picture something like this:

My future 'do?

Great Time

Had a wonderful evening last night at Happy Hour benefiting the Leukemia and Lymphoma Society. My friend, Tricia, did a great job guest bartending. Thanks to the tips she earned and the generous donations of so many people, she is well on her way to an impressive $5000 goal for the Team in Training 100 mile bike ride in Lake Tahoe on June 6! Please check out her website to see how she is progressing. Thanks to all my friends that attended!

Trish and me at the Logan House!

Time for Happy Hour!

My friend, Trish, is training for the 100 mile bike ride in June benefiting the Leukemia and Lymphoma (and Myeloma, as I like to add) Society. Trish is a Leukemia survivor and you can read more about her at http://pages.teamintraining.org/de/ambbr10/tleathers. She has also asked if she can ride in my honor, which I am humbled and thrilled about!

The Leukemia and Lymphoma Society has supported me during the last year in several ways, most importantly with the Myeloma Support Group that they sponsor. The group has allowed Dave and me to meet other Myeloma patients, survivors and caregivers, and has proven to be one of the most helpful sources of information along this journey.

As part of Trish's fundraising, she is guest bartending during Happy Hour (4:30 - 6:30 pm) next Thursday, April 29, at the Logan House in Wilmington. I will be there and hope that you can join me in supporting Trish with her huge endeavor.

Welcome Back, Kotter

My first day back to work was great. I was welcomed by a desk full of confetti, balloons and flowers! All my co-workers politely offered the obligatory "I love your hair" comment, although I did get "Oh, I didn't recognize you" mixed in. I also got lots of emails, texts and calls from my friends. It made a difficult day of re-entering the real world much easier. Another huge milestone reached!

Back to Work!

One Year

It was one year ago today that I was diagnosed with Multiple Myeloma. April 13, 2009: A day I will never forget. It's amazing how things can change in one year. One year ago, I'd never heard of Myeloma and now I could write a book about it. I would title it "Everything You Never Wanted to Know About Multiple Myeloma." One year ago, I had a grim outlook on the future and now I'm optimistic about the possibility of complete remission. It's been a long and trying year, but one that has brought lots of growth and hope as well.

It's been a year of planning and coordination: researching the disease, creating an action plan, assembling a team of doctors, nurses and caregivers, and constant organizing of schedules for treatments and appointments.

It's been a year of support: from my family, friends, co-workers and even from strangers across the pond! Also from the Myeloma Support Group and the Leukemia and Lymphoma Society.

It's been a year of appreciation and gratitude: for all the people who've supported me, for the excellent care I've received and for the generous health benefits I'm so fortunate to have through my employer.

It's been a year of communication: emails, texts, blog and facebook posts and comments, cards, letters and phone calls.

It's been a year of emotions: tears and fears, smiles and laughter.

It's been a year of love: lots of really big hugs and "I love you's" exchanged with my dear husband, wonderful parents, incredible friends and extended family.

It's been a year of thanks: endless thanks to everyone who helped me through this!

This year-long process ends with my return to work on Monday. I'm looking forward to getting back to a regular routine and learning to live with Myeloma as a new normal.

Wigged Out

I've been getting out of the house more lately, driving myself to various Doctor visits and running some errands. It's allowed me to get used to wearing my wig and I'm getting more comfortable with it every day, or so I thought.....

On Tuesday, I had an hour to kill between Dr. appointments and I stopped into TJ Maxx which is conveniently located across from the Hospital and Cancer Center. A little shopping cures all. I was standing in line to pay for a Liz Claiborne sweater from the clearance rack, and found myself behind a little girl, probably about 6 years old, with her Mother. I could feel the little girl staring at me and finally she said to her Mother, "Is she a real person?" I smiled politely as the Mother's eyes quickly checked me out from head to toe and then to head again. She responded to the little girl, "Yes, she is a real person. Did you think she was a mannequin?" "Yes," the little girl said, "I thought she was a mannequin!"

A mannequin! LOL! I have no doubt that my Barbie-like figure, porcelain skin and perfect posture could be mistaken for a mannequin and that it had nothing to do with the synthetic animal pelt on top of my head. Oh well, I wonder what the little girl would have thought of me if she saw my real head!

Goodbye Cathy!

Tomorrow is the last day for Cathy Trilumen and I can't wait to bid her farewell. No more Saran Wrap, no more daily flushing, no more fussing around with keeping her covered. Wonderful!

On Friday, I had a Dr. appointment and my latest blood work. I was surprised to find out that my white blood cells have dropped to 2.1, but the Oncologist does not seem too concerned. He explained that they will continue to fluctuate up and down until all the stem cells have grown into new blood cells. I sure hope those little guys are working hard and spreading their joy around! By mid-May when I get my bone marrow biopsy, they should all be well established.

Dave and I enjoyed a wonderful Easter dinner yesterday with my parents. The weather was beautiful and the company was even better.

Easter Day with Mom and Dad

I am returning to work on April 19. I'm working hard to regain my energy by taking walks every day. I look forward to getting back to a normal routine. In the meantime, I've picked up a bit of a side job. A friend of mine works for a publisher of high school level textbooks and publications, and she asked me to proof-read a modernized version of "A Tale of Two Cities" by Charles Dickens. It has proven to be a test of my knowledge of spelling, grammar and punctuation. It makes me realize how much we all depend on spell-check these days! If my stem cells aren't working hard enough, now I'm challenging my brain cells, too!

Thanks to all for your continued support and well wishes!

Happy April!

I caught the end of "Ugly Betty" last night and they were talking about how Betty hadn't written in her blog lately, so I decided it was time I logged in again.

April has brought beautiful spring weather, green grass, buds on the trees and hopefully sprouting stem cells as well. I see my Oncologist tomorrow and will get my latest and greatest blood work results.

I had an appointment with an ENT specialist yesterday about the ringing in my ears. After a hearing test, the Dr. reported that I have mild to moderate hearing loss in the high frequency ranges most likely caused by the Cytoxan I received back in late January. It may or may not be permanent, but at this point is not a major concern, more annoying than anything else.

Cathy Trilumen is spending her last week with me. She will be removed on Tuesday afternoon. I've certainly gotten used to her hanging around (literally) but I can't say that I'll miss her.

After hundreds of games, I have conquered Spider Solitaire. Something I can proudly add to my resume.

That's it for now. Enjoy this spring weather!

Rainy Monday

A few people have commented that I haven't been blogging as much lately. I appreciate you checking in and following along with me! There just isn't much excitement to report on these days....just slow progress each day. Went to the Dr. on Friday and my blood work showed some of my levels remain a bit low, namely white blood cells, red blood cells, platelets and hemoglobin. I am eating much better lately and I would say that my taste buds are about 70% back so I can't complain one bit.

My energy is getting better every day, in fact, I drove last week for the first time. I haven't driven in almost 8 weeks and it felt a little weird. I think I drove about 35 mph the whole way to the hospital! I was surprised by the unexpected blind spot caused by my new hair-do (which I have yet to reveal a photo of on this blog).

It's time to say goodbye to Cathy Trilumen! At this point, she has served me well and the Dr. is concerned about the possibility of infection or blood clot if she stays in much longer. I don't have an appointment yet, but it should be within the next couple weeks. I'm glad she will be gone in time for summer tank tops! Speaking of which, I get a chuckle and roll my eyes at a female patient that I often see at the Dr's office and in the treatment room. Every time I see her, she is dressed in a low-cut top that fully exposes her catheter! I wasn't aware that that catheters were such a fashion statement. I guess I really missed the boat with the zip-up sweat shirts I've been wearing for the last two months.

As always, thanks for your comments!

Spring has Sprung

This week has brought beautiful weather and increased energy every day. I've been taking short walks around the neighborhood and enjoying the warm sunshine. My appetite is slowly increasing and the metallic taste in my mouth is subsiding, so I am headed in the right direction.

Hope everyone enjoyed St. Patrick's Day. I received a very unexpected St. Patty's Day flower arrangement from one of our Irish boating friends and that was the highlight of my day!

I've been experiencing ringing in my ears that is getting a little more intense every day. This may be a side effect from the chemotherapy. I am going to see an ENT specialist next week for an evaluation and hearing test.

My next Dr. appointment and blood work is tomorrow so I hope to get a good report on my white blood cell count so that I can get out of the house a little bit over the weekend.

Thanks, as always, for your cards and emails. I want to give a shout out to my friend Gale who is the winner, hands down, of most cards sent! Thanks, Gale!

Enjoy this taste of Spring!

Progress

This week brought much progress. My appetite is slowly increasing and now includes solid foods; however, my taste buds are still being difficult. The constant metallic taste that remains in my mouth keeps me from enjoying most of what I eat. I found that sucking on hard candy helps to keep the taste bearable, so there may be a trip to my dentist in the near future. The best part of eating is that I no longer have to get fluids! I've lost over 10 lbs, but half of that I gained intentionally prior to the transplant knowing that I would lose weight. For a few weeks in January, I was eating like I was auditioning for the Biggest Loser.

My blood work yesterday found my white blood cells remain a little low at 3.2 (normal is 3.5 -11); however, my Dr. has cleared me to get out and about as long as I'm not in crowds or near anyone sick. Very exciting news! My red blood cells and hemoglobin remain low, so my energy level is still an issue, but increasing every day.

Thanks to everyone for your comments and support of my blog. It's nice to know that others are right there beside me during this time.

Groundhog Day

I haven't had that much to share lately. My life is like Groundhog Day. Here is a typical day: get up after a restless night's sleep.....shower and inevitably get my saran-wrap-covered catheter wet....lay down because I am exhausted from the shower....somehow get down 9 different meds, a couple of which are larger than Carrie Underwood's new engagement ring....drive to the Cancer Center with Dave (our car is on auto pilot from home to the hospital)....get to the Oncologist's office and give the receptionist my name and my doctor's name (even though she sees me every single day, she makes no effort to remember my name)......wait in the blood draw area until the next nurse is available.....fear the nurse is not focused on the blood-drawing task at hand because Dave has inevitably engaged her in an unrelated conversation....off to the waiting area with traditional blue pleather chairs that don't match the contemporary decor of the brand new Cancer Center....get excited if we score one of the two Chippendale loveseats.....wait for AT LEAST an hour during which time I.....play solitaire on my phone....listen to Dave rant about the purpose of appointments and comment on every patient that has already been called for another doctor....study the other people in the waiting room and wonder who is the cancer patient and who is the family member (sometimes, unfortunately, it's quite obvious).....watch the volunteer with the snack cart who sells crackers and unrefrigerated pudding (yummmmm).....give a sigh of relief when the young girl with no personality (she must have been trained by the receptionist) finally calls my name....go to exam room #2....no-personality girl takes my blood pressure and temperature.....robotically get up and take two steps to the right and get on the scale.....no-personality girl notes my weight and leaves......stare, once again, at the sun-faded moving sticker on the exam table and swear this will be the day I take it off....listen to Dave rant about the purpose of an appointment while we wait for the Nurse Practitioner....Nurse Practitioner comes in and I tell her how I feel, she gives me a cursory exam and leaves.....listen to Dave rant about the purpose of an appointment while we wait for the Dr.....the Dr. finally comes in and I repeat everything I just told the Nurse Practitioner.....he does a ever-so-slightly more complete exam.....discuss the Myeloma topic of the day and then he leaves......head to the treatment room and I sit in one of the non-matching brown vinyl lounge chairs.....pray I won't get assigned the annoying male nurse that still tells Tiger Woods jokes....wait for my meds and fluids to be dispensed from the pharmacy.....Dave leaves and will return in 2 hours and 15 minutes.....play solitaire on my phone....study the other people in the treatment room and wonder what kind of cancer they have (it's easy to distinguish the patient from the family member now).....possibly get a short nap.....get up at least 3 times with IV pole in tow to go to the bathroom because of the fluids.....obsess about all the germs in the bathroom....finally done and Dave picks me up at the previously agreed upon time.....return home.....It's mid-afternoon by now and I haven't had anything to eat so I rummage the kitchen for something to drink that won't taste like metal and something to eat that won't taste like cotton.....settle for apple juice and applesauce.....plop on the couch, exhausted from my action-packed day, and turn the TV on....watch back-to-back episodes of House Hunters International......amazed by how small the bathrooms and kitchens are in Europe but annoyed about how much money some people have to buy vacation homes in exotic places like Bali and Fiji........turn the TV off.....check email.....think about blogging, but just can't do it today.....possibly get a short nap.....rummage the kitchen again just to see if there's anything I missed the first time.....decide on apple juice and jello this time.....turn TV back on and watch a romantic comedy On Demand while Dave makes a three course meal for himself.....check email and think about blogging again.....play solitaire on my phone.....decide to go to bed....lay awake thinking about how I should have blogged today....finally get a restless night's sleep.....wake up the next day. Repeat.

Day 15

Thanks to all of you who have emailed and called checking up to see why I haven't blogged in a few days. Everything is on track, albeit it feels like the slow train. My white blood cell count is rising and my fluids were reduced yesterday since I'm trying to get more food and liquids. Today, I was happy not to have any lab work, Dr. appointment or treatment of any kind! Truly a day off. Back to the Cancer Center routine tomorrow.

Weekend Update

Today is Day 11 and things are improving every day! My white blood cell count has risen from 0.0 at my last post on Wednesday to 1.4 on Friday. Still very low, but just out of the critical zone. Starting next week, I should be able to come out of the "time out" room! My red blood cells and platelets are very low as well, but the Dr. said these will be the last to rise. I saw the Dr. every day last week, and by Friday, he seemed pleased with my progress and lack of complications (fever, infection, etc).

I've been receiving fluids every day for the last 7 days to keep me hydrated since I haven't had any desire to eat. Also through the infusion, I get an anti-nausea medication as well as a steroid called Decadron. I think that has really has increased my energy. Since the Cancer Center is closed on the weekend, I've spent Saturday and Sunday in the Bone Marrow Unit at the hospital as an outpatient to get the fluids and meds administered. It's a nice private room and the nurses are really great.

I am slowly getting my appetite back, but my taste buds have been altered by the last chemotherapy treatment and nothing tastes right to me. I've been spared the terrible mouth sores that so many people get, but I do have throat irritation that makes it difficult to swallow solid foods. But each day, I am eating a little more and the plan this week is to slowly phase out the fluids and meds as I can eat and drink on my own.

So far, my recovery is right on target and that is the best news we could hope for.

Rock Bottom

Today I hit rock bottom, not emotionally, but as far as my white blood cell count. It is 0.0 (normal is 3.5-11.0). I have no immune system. This is expected and part of the whole process.

I've been to see the Dr. and received meds and fluids every day this week. In the treatment room at the Cancer Center, a wide open room with a sea of non-matching-shades-of-brown-vinyl lounge chairs, there is a room with a curtain at the end of the room in a niche next to the pharmacy. I always wondered what you had to have or do to get put in that room. Was this the treatment time-out room where they put difficult patients? Well, I have been summons to that very room for my treatment this week since it is located away from other patients. I'm sure the magical hospital curtain that stops all germs from entering the room works wonders. Not!

I did get some encouraging news that four (4) cells have appeared as monocytes, which is the type of cell that the stem cells produce as they start to grow. So how about that? Only four out of 10 million stem cells have re-surfaced...makes you question the return on investment, but I've been assured that between days 11-14 post transplant, the stem cells start to grow rapidly. Soon, they'll be as crowded as a Duggar family reunion.

Hopefully, the next in our history-making snow falls will not interfere with getting to the Cancer Center for the rest of this week.

Thanks for all your comments, they really have been flying in and each and every one is appreciated!

Bubble Girl is Back!

It's Day 5 and I'm happy to be back to my blog. I had no energy or interest over the weekend but I thank you, as always, for your comments which I receive via my email as well, so please know that they are never overlooked.

The weekend was challenging, but we made it through. Dave had to be out of town and I have to give a huge shout out to my friend DJ who stayed with me all weekend and treated me like a queen. She literally waited on me hand and foot!

This afternoon is like a whole new day after I received fluids and anti-nausea meds this morning. What a world of difference! I will get the same infusion every morning this week so I am hopeful that I'll soon get my energy and appetite back. I can't stand the smell of real food and poor Dave (for those of you who don't know, he is the cook in our house and enjoys preparing and eating a proper meal) had to eat out last night so that the house wouldn't be filled with cooking smells.

The blood work this morning showed that my white blood cell count has plummeted again. It is a 0.2 (normal is 3.5-11), but this was expected. Back to living in a bubble for a while until it returns to normal. My red blood cells, platelets and hemoglobin are also low, so I guess I have a good enough excuse for having no energy, i.e. being a Lazy Susan.

Day "2"

Day 1 and 2 have kind of run together for me. I've been very tired and nauseous but feel better tonight after going to the Dr. and getting an infusion of fluids and meds this afternoon. What a difference! I'll be seeing the Dr. every day next week and the goal it so stay healthy enough to stay out of the hospital.

Your comments and emails have been overwhelming and each and every one very appreciated! Thank you all very much!

Day "0"

The day has come for my stem cells to be returned to my body...it is Day "0." I explained in my last post how this very significant part of the process is very much a non-event with no fanfare. Mom, Dad and Dave were with me so that was exciting, but there still seemed to be a few things missing, like there should be a ceremony of sorts. Something like trumpets playing and rose petals sprinkled on the floor as the bags of stem cells enter the room on a pink velvet brocade pillow with gilded tassels. Something you would see out of the movie Cinderella when the prince presented her with the glass slipper:

"I present you with your beautiful, healthy stem cells, my princess!"

But, in life there are many disappointments and this was one of them. After receiving several pre-meds earlier this morning, the frozen stem cells were brought into the room in bags which needed to be defrosted. So they were thrown in a tub of hot water for a few minutes, kind of like a frozen boil-in-bag of vegetables. As I said, nothing ceremonious here. Then Dr. Martin infused them into Cathy Trilumen with great ease and that was that.

"Infusing the stem cells"

Some minor side effects occured, but within a short time, I actually have to get out of bed to exercise today as soon as I am able. So, no buff men with palm leaves fanning me and feeding me grapes for hours to come.

Now the rest of my progress and recovery "stems" (pun intended) from this Re-Infusuion Day of February 17. In approximately 90 days from today, The Dr. will hopefully be able to deliver the news that I have reached Complete Remission. Those are the words we are hoping for.