Bump in the Road

     We've had a wonderful fall with a 2-week trip north, all the way to Bellingham, Washington, to visit family and friends, and attend a family wedding. It was lots of fun and our car came home stuffed with treasures! We were (as in primarily me) able to shop in larger cities with much more selection than we can find locally.  It was a good start on Christmas shopping and more wintery type clothes as we're headed to Johanna's this winter.  We're awaiting her husband's return any day and look forward to a visit with the all of them.
     We took another quick trip a couple weeks ago to my brother's in north central Oregon.  His granddaughter, my great niece, and her husband were visiting from Europe. Her brother was able to join us as well. It was another great day and now wonderful memories. Of course, all of these trips include a stop in Portland with our son and family there.  A trip to the pumpkin patch with sweet little Wallis on a beautiful sunny day is another memory to cherish. The sun was brilliant as were the fall colors.
     Travel is not without its hazards for me, however.  I was down with sore throat and fever the first few days we arrived home from our 2-week trip. I was able to stave off the sore throat from getting any worse, but, as it turns out, the fever was from a bladder infection. Doctor gave me a shot then antibiotics for 10 days. I was soon on the go again. Until I was exposed to the stomach flu. My "germophobic" habits did not spare me this time. Unfortunately, it hit me a few hours after my chemo shot. I can't remember ever being that sick! My stomach recovered after a couple days, but the diarrhea won't go away.  My primary doc said he had seen a lot of it and people were having a difficult time recovering without medication.  He prescribed 10 days of Flagyl and Cipro, which had helped his other patients with the same thing. So now the dance of whether we do chemo or not, whether I'm improving or not. It goes day to day. The good part is I don't feel sick and have the energy I need to go about my daily activities. And, the lab reports just before this hit showed the remission was becoming more stringent - a good thing.  It's comforting to know that a short-stop with chemo will, hopefully, just be a bump in the road with only a little effect on my numbers.  But is disappointing, too, that my maintenance chemo was continuing to improve the depth of my remission.  Now I wait for the big guns at UCSF to give their advise for how to proceed.
     Remission is not a cure with this cancer. It just means we've kept it under a good control for now. It brings a cautious happiness. I live with the knowledge that the effects on the body still leave me vulnerable to illness and the opportunity for it to become more serious or even life threatening. One never knows at what point it will cross that threshold so precaution is taken at every opportunity. Your prayers have been the ingredient that maintains my well-being in spite of the "down" days with side effects or extra rest needed to allow my body to heal. Thanks for your faithfulness!

     

Post-Op Report

     Last week was my post-op appointment and I had a good report.  The pathology done on the bone marrow in my spine showed no sign of myeloma!!  This confirms that my remission is considered a complete remission!  However, this does not mean that there isn't a myeloma cell lurking somewhere in the micro environment waiting to take over again. To prevent this, I continue on "maintenance" treatment but the dosages of my meds have been reduced.
     The next step would be physical therapy. Since I've already had a lot of physical therapy and I know what exercises to do, the dr said I could do those at home and not have to see the physical therapist this time. These exercise are something that need to be done daily anyway.  The dr said walking could easily replace the cycling the physical therapist uses to build the strength in my legs. However, anything outdoors right now has to wait until the hot temperatures are over and the surrounding fires are out and the air isn't thick with smoke! Air quality advisories are a daily part of our news right now.
     Rejoice with me on the good news but keep those maintenance and recovery prayers coming!

Post-Kyphoplasty

     It's over and I'm home! I gained a little over a 1/2" in height according to their measurements.  I'm managing without pain meds but was sore and taking it easy the first week.  They did T-6, T-8, & T-10.
     As you already know from the previous post, it was going to be a long day, but it got to be even longer when my 4:00 pm surgery didn't happen until 7:00 pm.  And, it's a little unsettling when your ortho surgeon is yawning through his pre-op consult with you after being in surgery since 7:30 that morning!
     I didn't sleep much the night before as I was busy getting ready and got up to eat a high-protein meal at 11:30 so it would carry me through the next day.  Am so glad I did that!  I was allowed 8 ounces of water at 6:00 am to take my medications.  We left the house a little after 2:00 am for the airport.  After we dropped Johanna and the kids at the airport, we drove back up the freeway a short distance so Steve could have breakfast.  I stayed in the car and told him not to even smell like food when he came back!  ha.... We then drove 1/2 way into SF and stopped at a rest stop where we always stop.  We slept there for several hours.  When we went to leave, the battery was dead!  Steve had the key on to listen to the radio and I was charging my phone.  Fortunately, we had an emergency battery pack and hooked it up to the battery to get it started.  We drove on into the city and sat some more in the hospital lobby until it was my check-in time at 1:40 pm.  Then we sat some more until they finally called me for pre-op around 6:00 ish.
    I was grateful for the skillful lab tech who was able to get an IV started in the back of my left hand.  My veins are damaged from an early round of chemo that was done without a port.  Turns out he was from our area and graduated from the local high school.  We had fun visiting! And, Steve kept finding nurses (Females) in my care who rode motorcycles! So there was a lot of motorcycle talk!
     Everyone on the operating team came by pre-op to introduce themselves and meet me.  My PA had to leave at 5:00 but there were others on the team - a dr doing a fellowship in ortho, a resident, a 4th year medical student.  The anesthesiologist was a resident who was going to be doing my anesthesia.  She was accompanied by her "attending" anesthesiologist.  My lips and throat sure took a beating and don't know if that was due to how they had to move me onto my stomach to work on my back or her "skill".  Somewhere in my stack of papers, I remember seeing a note that my ortho was the "attending" physician as well.  So I'm not sure who actually did the procedure. I don't remember much of anything after entering the OR until waking up in recovery.  My ortho doc is such a sweet, kind man. He went all the way down to the 1st floor to get Steve and took him back up to recovery.  Then talked to us both about the procedure and how things went well.
     I was given a private room that had a chair that folded into a futon for Steve.  The nurses gave him a pillow and blanket and he was soon fast asleep.  I slept, too, most of the night other than the interruptions from the nurse checking on me and checking my vitals.
     The nursing staff changed the next morning and we had the dearest middle-aged woman from the UK assigned to us.  She was sure we'd be out of there by 10:00 am.  We were so happy to hear that and anxious to head home.  However, my doc was in surgery again and there were no orders left for my discharge!  Finally, around 12:30 they got a hold of one of his PA's and told them we needed to get out of there for our long drive home and before the traffic got so heavy in the afternoon.  She brought the pharmacist who went over post-op meds and we opted for sending the prescriptions to our local Costco pharmacy so we could get going and not wait for them to be filled at the local Walgreen's. When they brought my discharge papers, we noticed he had accidently sent the scripts to a specialty pharmacy in Sacramento who fills my chemo pills!  It would have taken me 5 days to receive the drugs and I was to start on them as soon as I got home. Now it's back to tracking down everybody again and more waiting!  Finally got it sent to Costco and we left there just before 3:00 pm and drove into the heavy Friday afternoon traffic!  We didn't get home until 9:00 pm that night.
     When we arrived home the answering machine light was blinking so took a few minutes to listen to messages before falling exhausted into bed.  The pharmacy in Sacramento was calling about my prescription!!  Great!  They hadn't canceled it!  I called Costco as soon as they opened the next morning and found out they had the prescription but couldn't fill cause the other pharmacy had already entered it into the insurance computer.  She was able to come up with a solution, however.  They would fill the script and we could pay for it.  When we could cancel the other one on Monday morning, they would run mine through the insurance and we would receive credit for the difference.
     So there are all the details of my adventure with kyphoplasty.  I have to say the staff and nurses we encountered at UCSF were great!  They were just as frustrated with the poor communication as we were.
     There was a lot of waiting through the entire day.  I did nap a little but found it difficult to sleep much.  I read a book most of the time which helped keep my mind occupied. But overall, I would  have to say there was a calm and peace that I knew could only come from Above and the prayers that were spoken on my behalf.  

 

Kyphoplasty at UCSF

     Prayers are appreciated for this Thursday, August 10, as that is when I will undergo a procedure called kyphoplasty at UCSF.  It is a process of accessing the vertebrae with a small needle, inflating a small balloon-like device to try to restore some height then filling it with surgical cement. Three possibly four vertebrae will be done. This procedure helps repair compression fractures, prevent further compression and, hopefully, relieve the pain. Surgery is scheduled for 4:00 pm but by that time of day who knows how far behind schedule they might be! This is typically an outpatient procedure but since my surgery time is late in the afternoon and will be done under general anesthesia, I will be kept overnight.  Hopefully, all will go well and I can head home the next day. For a relatively simple procedure I spent over a week getting all the tests, lab work, doctor appointments and clearances to meet the requirements of the anesthesia dept.
     Thursday will be a very long day for us as that is the day Johanna and the kids head home to New York.  Their flight leaves Sacramento at 6:00 am so we will have to leave the house in the wee hours of the morning.  Then we head on into San Francisco for my check-in time at 1:45 pm.  We're hoping to catch a nap in the car somewhere in between.  It will be an especially long day for me as I am not to eat or drink anything after midnight!  However, my PA is hoping the assigned anesthesiologist with be open to a somewhat shorter window than 16 hours!  That information will be available on Wednesday.
     Titus was able to get a few days leave so Johanna flew to Germany to be with him.  The kids stayed with us.  Those two toddlers have way more energy than we do at this point in our lives!
     I have been able to lower my daily oral chemo dose by 100 mg.  If numbers are good again this month, I can lower it another 100 mg.
    Am thankful for my network of prayer warriors! Will post again soon after my kyphoplasty.
   
   

A Happy Summer!

     I am enjoying the summer since I am feeling better than I have for years.  Remission continues along with maintenance treatment.  Oral chemo everyday (Venetoclax) and a shot every other week of another chemo drug (Velcade).  I do pretty well with the treatment other than a few days of not feeling very perky after the Velcade shot. 
     A follow-up MRI done mid-June showed more compression fractions in my vertebrae, even though I am not experiencing much pain.  There will be a consultation with the ortho dr at UCSF prior to kyphoplasty procedure(s) in the next few weeks.  This will stabilize the vertebrae and spine.  I've lost so much height since diagnosis (approx. 3 + inches) that I am having to adjust to life as a short person after living a "tall" life!
     Johanna and her 2 kids are here for the summer.  Jesse & family were here the week of July 4th. Lots of fun with cousins swinging, sliding, eating fruit pops, running in the sprinklers and, hopefully, washing off the sticking aftermath of the pops!
     We enjoyed a visit from a number of Steve's cousins and spouses, and an aunt, from Minnesota, Indiana, So. Cal. and Seattle last week. Several of the men attempted to climb Mt. Shasta.  They didn't reach the summit but are already talking about "next time".  We're happy Steve did so well after 2 bouts of pneumonia this winter and a lingering cough.  We all headed over to the Coast for a few days after the big climb to see the Redwoods, beach and pier at Trinidad, a meal at Samoa Cookhouse and just ate way too much food all week!  We especially enjoyed our Rueben sandwiches on Aunt Luverne's home made rye bread!    
     We look forward to more visits from friends passing through and some outings for us to Ashland and weddings in Bodega and Seattle.  Of course, the schedule is busy, too, with medical appointments and treatments.  It's a small price to pay for the blessing of continuing to live on this earth and be able to enjoy our family and friends, especially our 8 grand kids!
     We know this unexpected remission is a miracle from God. You share in this miracle as your reward for your faithful prayers!  Don't stop!  Maintenance prayers are needed, too!

The Eyes Have It

     My cancer numbers continue to remain in the normal range. The same treatment continues.  My hemoglobin stays close to normal, but my platelets and white blood count are taking a hit. I'm thankful those numbers have not been low enough to interrupt treatment or require any neupogen shots to increase the white count.  Being a "germophobe" is part of my lifestyle now regardless of my white count since myeloma impairs the immune system whether you're in remission or not.
     I feel pretty good most days except for the day following my weekly velcade shot. I do have some fatigue and occasional nausea from my oral chemo. Overall, I am feeling better on this treatment regimen than some of the previous ones.  Am so thankful I don't have to take the steroids for now! That alone contributes to feeling better!
     Physical therapy continues and healing of my latest compression fracture slowly progresses. Even though I'm not where I want to be with my strength and ability to do things, I am encouraged with the progress I have made.  Exercises to build my upper body strength have now been added into my physical therapy routine.  These will be done at home, too, and will have to become part of my daily routine in order to maintain the muscle strength needed around all these impaired vertebrae. 
     The latest health issue is my eyes. Didn't really think about the last time I had my eyes checked just knew I was having difficulty seeing, especially with my left eye. After exam by my optometrist, referral to and exam by ophthalmologist, my diagnosis is cataracts.  The left eye is the worst and is age-related.  Will have the surgery on this eye within the next few months.  The right eye is due to all the steroids I have had to take over the last 10 years.  At this point, will probably wait on that surgery as it is not that bad. Even though it is a relatively simple procedure in this day and age, I have to carefully plan something like this around my treatment schedule.
     The other issue is my very dry eyes due to a combination of age and all the medications I have to take.  Two different eye drops (one a prescription) to use several times a day to help.  Will treat my eyes for several weeks before measuring is done by ophthalmologist for lens. Dry eyes make it more difficult to get good measurements. 
     I can't say it enough - your faithful prayers sustain us! Please continue to pray for Steve as well, my faithful support and companion, through this challenging journey. We cherish each day together "in sickness and in health".

Myeloma Awareness Month

     The International Myeloma Foundation designates the month of March for their Myeloma Awareness campaign. Myeloma is not a common cancer when you consider all the cancers we hear about but it is the second most common blood cancer. It is not always easy to diagnose as symptoms, such as bone pain, anemia, fatigue, can be vague and attributed to other illnesses or even just stress. I am grateful to the IMF for the things they do: advocate for the needs of myeloma patients, encourage collaborative research, provide education and support for patients and families.  Their involvement in raising funds for ongoing research and the collaboration of doctors worldwide, has made it possible for new drugs to be available just when I have needed them.  There have been approximately eight new drugs developed since my diagnosis in 2007 and other chemo drugs made available that research has shown work for myeloma as well as the cancer for which they were developed.   
     Good news continues as my free light chain numbers (how my cancer is measured) continue to go down even though they have already been in normal range now for a couple months.  I have had two full cycles of Velcade shots now and they have not been pleasant.  The shots are given in the abdomen and they hurt!  Then they leave a red patch that eventually turns light brown and I wonder if they will ever go away completely.  However, I know from past experience they will - eventually. Now that I'm no longer taking the high dose steroids with my treatment, I have been feeling kind of yucky the day after the shot.  The 1st cycle was 4 weeks long, with a shot once a week. I had diarrhea the next day after each of those shots.  Now my cycle is 3 weeks with a shot once a week and the 4th week off.  My stomach has settled down now but I am also careful what I eat for 24 hours after my shot.  The Velcade is also making my white blood count and platelets go down, so am glad we altered the weeks in each cycle to allow for some recovery.  My red blood count is staying very close to normal which greatly helps my energy level.  We all need oxygen circulating in our bodies!
     The Venetoclax is the oral chemo I take everyday - no days off.  I really don't seem to have any side effects from it other than some mild fatigue.  I do have the challenge of swallowing 8 pretty good sized tablets every day, along with all the other prescriptions and supplements I take.  Probably about 30 pills a day!  It's a challenge not to swallow too much air and then have gas sitting in my stomach.  But, there is a pill for that, too!!
     I had my first Aredia infusion (IV bisphosphonate) at the beginning of February.  And, I finally got started at Physical Therapy this week.  It will be slow as I still have a lot of discomfort and muscle spasms in my back and upper abdomen.  Last time I had fractures, I had 4 repaired, wore a back brace for 9 months, had monthly Aredia infusions, and PT didn't begin for about 6 months after I had fractured a 5th vertebra.  I am getting started a lot sooner this time.  He is taking it slow and sent a request to the Ortho PA at UCSF for approval for 20 visits instead of 15.
     Even with the low cancer numbers, the immune system is still impaired from the cancer. You never get completely free of the effects of this cancer
     Once you have a cancer diagnosis, the big "C" hangs over you like a cloud for the rest of your life.  That cloud is dark when the the numbers are high and is lighter when the numbers are lower, but it never completely goes away.  Another reminder that we are to live one day at a time and to place our trust in the Lord daily.  However, I am enjoying living under a lighter cloud these days!
    
    

A place called Normal

     Much has happened since my last post so will begin sequentially with events and will share the really good news in the order that it came.
     After the first week of radiation, my leg began to improve and the pain level began to lessen.  It was a relief I didn't have to use the walker my husband purchased for $5.00 at Goodwill; and yes, he had to put the yellow tennis balls on the back legs!  It was still quite uncomfortable laying on that hard table but not with such extreme pain.  I ended up with just one side effect and that is still bothering me some.  I have had some difficulty swallowing and minimal "burning". It's like heartburn but is actually a burn from the radiation not indigestion.  The radiologist ordered a pain killer that is a liquid you swallow but I have managed without it.  I should be past the worst of it now and improving. 
     I have seen both of my oncologists (UCSF and local) within the past week and they both agree that the ribs most likely fractured from coughing when I had bronchitis. My local doc told me to remember that the bones of a myeloma patient are probably like Styrofoam due to the cancer interfering with the bones' normal rebuilding process.  That's why it is extremely important to avoid falling. 
     As things are improving and bones are healing I have been able to reduce the frequency and dosages of pain meds.  In fact, I have not had to take any pain meds for a couple days now.  Both docs have told me to switch to ibuprofen or Aleve.  When all this first happened, I started wearing my back brace again, but had to quit after the ribs fractured as it was too painful. I am now able to wear it again and it really helps with the discomfort from the fractured vertebra. I saw the ortho PA at UCSF again this week and the decision has been made to let this fracture heal on its own as it is not severe enough to warrant a repair procedure (Kyphoplasty).  In the next few weeks, I will begin physical therapy.  I will also begin IV bisphosonate (Zometa or Aredia) again every 2 - 3 months.  Not sure how long this will go on yet.  This will help strengthen my bones.  I have had this therapy before when I had my first spinal compression fractures in 2011. The lesions take a really long time to heal but the radiation kills the cancer in the particular spot that is causing them.
     Last Friday, I began the second drug that is going to be part of this current line of treatment.  I have had this drug before - Velcade.  It is given as a sub-cutaneous shot in the abdomen. It doesn't take long to administer but I still have to make the trip to Chico, wait for a chair, wait for assessment, wait for drug to be ordered and delivered from pharmacy.  It is known to cause neuropathy, although, the sub-q method reduces the severity of it as opposed to the IV administration, which I have had previously.  However, I seem to develop neuropathy from most of my chemo drugs!  I have permanent numbness in my feet and some in my fingers and I don't want it to get any worse. Acupuncture has helped in the past so I do want to pursue that again.  There is an acupuncturist that volunteers once a week at the cancer center and just charges $20.00 for a treatment.  He only comes on Wednesdays late afternoon/evenings.  We are juggling my shot appointments so I will be there on Wednesdays and get treatment from him.  That will begin in a couple weeks.  I'm hopeful I will like him as it will save time and money from going to my acupuncturist in Redding; whom I like very much.
     As I reflected on this past year, I realized that I have been on 4 different lines of treatment in the past 12 months and about 9 different chemo drugs over the past 9 1/2 years, some of them more than once in different combinations!  However, I don't mind.  I am grateful to have such a great doc at UCSF who keeps experimenting and I'm still alive to enjoy my family and friends!  And that brings me to the best news - my free light chain (how my cancer load is measured) numbers came back NORMAL this week!!!  It has been about 5 years since they have been normal.  They were trending down before I started the latest drug (Venetoclax) and dropped significantly after just 2 1/2 weeks of taking it.  This is exciting news, but it doesn't mean I get to stop treatment.  I will continue on this current line of treatment until I see my doc at UCSF again in April.
     Thanks again for riding this up and down roller coaster with us!  Your continued interest and prayers sustain us during the hard times and we're happy you can share in the joy when there is positive news!