Week 1

It has now been one week since I began treatment. As predicted, I didn’t sleep much the first two nights due to the steroids. I didn’t really experience any other side effects; just felt like I had a little more energy. I now have a prescription for some sleeping medication to counter act the effects of the steroids. I’ll only need to take this medication for 1-2 nights; then I should be okay on my own again the rest of the week. I’ve tolerated the first week fairly well. Fatigue is my constant battle, but it isn’t any worse than before treatment began. There have been some times of dizziness, but not often. The most noticeable side effect at this point is the muscle aches, which are mild. There have been “prickly” sensations in my feet during the night at times, within hours of taking my medication that indicate nerve involvement. Neuropathy is a side effect that will be closely monitored and my dosage will be adjusted if it becomes an issue.

I’m a great believer in drinking lots of water and that has served me well. Fluids are extremely important with my therapy and I can definitely tell a difference in how I feel in relation to the amount of fluids I’ve consumed.

Today begins week 2.

Thanksgiving

I love Thanksgiving! It’s a holiday that’s all about leisurely enjoying a meal around a table with family and friends. No gifts required; no special clothes to be purchased. It’s all about preparing special foods and time together and, of course, being thankful.

I remember many happy times growing up and enjoying family meals at my Grandpa and Grandma Ebersole’s. I used to go help Grandma set the tables– there were usually 40-50! Happy times and good food! Over the years, I gleaned much wisdom from my Grandma. But, I remember well her simple advice upon my marriage – “Cook lots of good meals and always have a smile.”

In spite of my battle with cancer and the unknown road ahead, I have much to be thankful for this year.

I’m thankful for my husband, children and new grandson who are all such a blessing.

I’m thankful for new “friends”:

Ajay, Bruce, Carolyn, Gisela, Heidi, Jack, Jane, Jeff, Jennifer, Pam, Randy, Stacey, Steven, Timothy – Their names all end in MD or RN or some other professional medical designation!

Most of all, I’m thankful for the ministry of the Body of Christ through the power of the Holy Spirit. I have truly experienced the mysterious power that is released through your prayers. Though you are not actually in my presence, it’s a miraculous thing to physically feel the love, support, hope and encouragement that your prayers produce in our lives. When I reflect on what Steve and I were experiencing back in June during those first dark days of diagnosis and were facing everything alone, I am amazed at how far we’ve come since then.

There was a quote on my refrigerator for years that is now gone. I remember it well, but not the person whose words they were (remembering names is becoming increasingly more difficult “at my age”!):

Prayer doesn’t prepare us for the greater work; it is the greater work.

Thank you for being a part of the greater work in our lives!

Happy Thanksgiving!

Welcome to our World!

Ty Nielsen Rosten made his grand appearance at 2:40 pm this afternoon, November 18, 2007, his mom’s birthday!

Vital statistics:

weight 7 lbs. 12 oz; length 20 ½”

Proud Parents: Holly & Jeremy Rosten
Even Prouder Grandparents: Kati & Steve Rosten

GO!

My morning started out with my specialized eye exam that showed a “fluid vacuole” in my right eye, which has caused a little larger than normal blind spot. My ophthalmologist suspects that it will resolve on it’s own once the cancer is dealt with and my body is healthy again. Another good report!

As secondary problems continue to arise in my body due to the cancer, I am relieved to finally be at the starting point of my treatment.

Jen had a big breakfast waiting for me when I returned home and then I washed down the 10 little pills that comprise my steroid dose. I felt well prepared and confident as I popped those first few pills that signified the beginning of my physical battle with the cancer. My prayerful battle continues to grow and become more confident as well. After pausing to absorb the momentous occasion and preparing for what might lie ahead, I found myself asleep on the couch within two hours! Now don’t get excited! I know that I’m not going to stay that fortunate. It’s evening now and I’m starting to feel “antsy”. I will take my cancer drug this evening as it generally causes “drowsiness and dizziness”. We’re hopeful that the effects of one drug will offset the other; although I am prepared for an “all-nighter”! I do have sleeping pills, if needed, but want to go through this first week without them to see how my body will respond to the two drugs.

Those who know me well know that I have always had an interest in the medical field. My curiosity has served me well as I have traveled this road of medical issues for myself. However, I am amazed at all the twists and turns that this cancer road has taken me as issues secondary to my particular type of cancer have developed. Two things I’m watching for the Lord to reveal: 1) how He is going to use this trial in my life to enable me to minister to others; 2) when He will release me to return to my beloved choirs and the students whose love and prayers are so precious to me.

Thank you for your notes today, and earlier this week that always bless me. I will try to respond to as many of your notes as possible, but if I don’t manage to get to everyone, please know how much I appreciate hearing from you!

Set!

Everything is in place for me to begin treatment tomorrow. I had hoped our grandbaby would have arrived before I began, but maybe he wants to be born on his mom’s birthday on Sunday.

Talked to the cardiologist’s office today and my stress test was normal. That’s a good report.

My eye exam told me what I already knew – that I need a little change in my prescription. I am returning first thing Friday morning for one additional test to see why the vision in my right eye has become quite a bit worse than my left. I’ll probably hear the familiar phrase I hear often lately, “At your age……”!

Ready?

My drugs finally arrived today! I wish treatment was finishing just before the holidays instead of just beginning. However, I’m just glad to finally be able to get going with treatment. I feel like the last several months have been kind of a “honeymoon” from facing the realities of my disease; although, there were constant reminders due to my limited stamina and energy levels. Now it’s time to go to “work” and deal with the realities of the disease and treatment with its side effects. Please pray for these to be minimal.

Some encouraging news regarding payment of my drugs: About 6 –7 years ago we purchased a supplemental benefits policy that provided coverage for cancer. It fills in some of the gaps that our regular health policy doesn’t cover, such as co-pays for procedures, transportation costs for treatment that is over 50 miles from home, and some additional coverage for treatment. We were able to confirm this last week that they now cover Revlimid! However, the amount of their reimbursement is open to interpretation, so we don’t know how much it will be. It could be anywhere from $250.00 - $5,250.00. Please pray that they will interpret the policy for the $5,250.00 amount!

Today, I’ve already made 3-4 phone calls trying to track down the receipt for my drugs. Nothing was included in my package. I paid for them over the phone with my credit card and now I need to send the receipt for some reimbursement, which we hoped to receive before we had to purchase the next months supply. One person told me it would take two weeks to arrive, but did give me the number for the billing office to confirm. I’ve left messages and emailed, so we’ll see what happens. I’ve learned over the past several months that everything seems to take lots more time than you think it should.

My nuclear stress test on Monday was quite difficult. I thought I was going to collapse before it was over and have not felt well since. I’m anxious to hear from the cardiologist for reassurance before I begin treatment. I am very anemic due to the cancer and strenuous exercise creates the need for more oxygen than my body can easily provide.

Yesterday, I went ahead and got my flu shot. After a lot of research and discussing the options with a number of people, it was determined that I needed to take every precaution to stay healthy as serious illness in the middle of treatment could potentially be life threatening for me. I really haven’t felt much in the way of side effects as I have in the past. I still just feel like I did after the stress test on Monday.

Did you know that with a mitral valve leak you can’t have your teeth cleaned or have any other dental procedure done, without taking antibiotics before the procedure? Fortunately, I was aware of this. Unfortunately, my cardiologist never said anything about this. Fortunately, I have a standing order for antibiotics, so I was able to take the required medication before my appointment yesterday. My hygienist told me they have a great deal of difficulty getting the local cardiologists to remember to tell their patients about this, as the dentist will not proceed without the required medication on board. She also gave me the name of some tooth care products that will help protect my teeth from the drying effects of my cancer drugs.

That’s your medical update for today from my little corner of the world. Thanks for reaching into my little corner with your messages of love, support, hope and encouragement!

The Domino Effect

I’ve spent a great deal of time on the phone the last few days. Several of my appointments had to be changed for various reasons and then there would be conflict with other appointments that then had to be changed. Add to that, all the phone calls regarding my medication. We’re hopeful that my medication will be here next week and we’ve been able to find it for around $7,000 a month, the original cost we were quoted by Stanford.

Saw the cardiologist on Friday. I have a small leak in my mitral valve, no other damage was seen at this time. She’s glad to have a base line analysis of the condition so it can be monitored. I will go Monday for a Nuclear stress test to determine if there is any heart disease present. Tuesday I get a flu shot and see the dentist. Wednesday I will be at home dealing with the effects of the flu shot. Even when I was healthy I would run a low-grade fever and feel “fluish” for a couple of days. Thursday is my final physical therapy appointment at which time he will give me a home exercise program to continue using. Thursday afternoon I will get my eyes checked. I think that just about does it. I think I've had every body part and organ examined over the past 6 months! I guess you could call this my 100,000 mile check up!! If all goes well, I hope to begin treatment on Friday or Saturday. At last!!

Steve will have oral surgery on Friday. Most of you know that two of his front teeth were broken off at the gum line when he had surgery for a nasal polyp last December. He has spent the past year enduring the process of having implants to replace them. He is now ready to have the gums opened and a “plug” placed in there to prepare for actually getting his new teeth. Hopefully, he will have his new teeth by Christmas.

Thank you for your continued prayer support! Please pray this week that my medication will actually arrive, that my treatment will progress without experiencing any adverse side effects and for Steve’s oral surgery on Friday.

Stanford is a go!

Monday turned out to be a productive day! I received a call from Dr. Coutre’s nurse just before noon and by 5:30 in the afternoon many things were in place toward receiving my meds! She accomplished in one day what still hasn’t been completed over the past several weeks by my onc doc’s office here. She gave me a close estimate of the cost for my drugs and I should have a definite price sometime today. The cost is what we initially expected – around $7,000.00 per month. Some assistance with cost has been located, but we won’t know exactly how much assistance we’ll receive until we’ve actually purchased the meds and applied for reimbursement. There are other programs available that provide assistance for chronic illnesses and we can apply for further assistance anytime, but at least we can go forward now with getting treatment started.

I have to register again as a Revlimid recipient as the nurse informed me that the registrations expire after 14 days if you haven’t filled the prescription. That means the registration I completed for the oncologist here has expired and would have to be completed again anyway.

I was told I don’t need to have an oncologist here locally. We can use my primary care doctor (PMD) unless she would prefer we have an oncologist for emergencies. I’m waiting to hear from my PMD regarding her preference. Labs only have to be completed once a month when I go to Stanford for my appointments. It is possible that I would have lab work completed every 2 weeks during the first couple of months, but those can be done here.

Today is my echocardiogram to see what this little murmur is all about that has developed recently in my heart. Also, more x-rays for my rheumatologist.

We are encouraged that things are finally moving forward!

One Step Closer

Last Friday, Steve and I drove down to Stanford for a patient/caregiver symposium that was arranged by the Multiple Myeloma Research Foundation. There were 5 different doctors who spoke, each a specialist in myeloma, including the doctor I had seen at Stanford. On Saturday, they were all speaking at a continuing education seminar for oncologists and oncology nurses. They were from some of the top cancer research centers in the country – Stanford, Mayo Clinic, Cedars-Sinai, MD Anderson, and U.Wash., Seattle. It was a most informative and encouraging evening. With the discovery in recent years of new therapies, it gave us such hope for the future living with what is now being classified as a “chronic” disease. Stanford is doing the research that is looking for the stem cell that is the cause of myeloma. I sat there all evening trying to absorb as much information as I could (hooray for hand-outs!), and becoming more convinced that I needed to go there for treatment. There was a continual prayer in my heart all evening that it would work out for me.

One thing that we learned is that the “pulse” therapy with steroids is considered “old school” now. That is the treatment my first oncologist recommended as induction therapy. Research has shown that lower doses of steroids along with the new drugs is just as effective without the terrible side effects of high dose steroids.

We had the opportunity to speak with Dr. Coutre personally following the meeting. He apologized that he hadn’t had time that week to respond to my email, but that he would have his nurse contact me to make arrangements for me to receive my treatment there. I would only need to go down there once a month, but I do know there will need to be some arrangements made here locally. Please pray I will hear from her within a few days, so we can move forward with this.

When I first set up this blog, I thought it would be a means of communication as I journeyed through treatment. Up to this point, it has been about my journey TO treatment! We couldn’t have made this journey without your prayerful support!